Here are some answers to some frequently-asked questions:
— Are you on a special diet now?
No -- this is the first time in years I'm NOT on a special diet!
During kidney failure, my system had trouble processing things like potassium and phosphorus. I knew the potassium thing meant I couldn't eat bananas. I didn't really try looking up all the other potassium-rich foods; it reads like a random list from every food group you can think of. (Bran. Raisins. Nuts. Sardines. . .)
The phosphorus was something of a problem, as the fizz in pop is provided by phosphoric acid. I actually was on phosphorus binders for a while. It felt like the Diet Pepsi was the only thing keeping me awake for life, so I figured this was at least a compromise.
Now, the only thing I can't eat is grapefruit -- either the fruit or juice. It's been found that a component in grapefruit increases the blood-plasma concentration of immunosuppression drugs by double or more. Because these drugs are beneficial at a certain level and can become toxic at higher levels, a dramatic increase could actually threaten Cheryl's kidney. Ongoing overconcentration of the drug could be deadly.
In looking this up, I came across a case study of a man who was actually a general practitioner who was taken to the hospital with blurred vision, racing heartbeat and tremors several months after a liver transplant. He'd been eating orange marmalade made with grapefruit juice on a daily basis for over a week, and by the time he got to the hospital had 10 times the optimum level of Cellcept in his bloodstream and was accumulating waste in his kidneys.
So -- no grapefruit!
How do you keep track of all those pills?
Thankfully, from the transplant to now, I've been able to go off some of my meds. Most notably, I've been able to drop my last blood-pressure medication since the nephrectomy, since apparently I'm not carrying excess fluids around. So, I'm down from 10+ prescriptions to six!
I still have 7 to 8 pills to take at a time, twice a day. I have four 7-day pill organizers and can stick a day's worth in my purse.
Most practically, I began practicing taking multiple pills at a time when I was first diagnosed, and can pop all 8 at once. This impresses some of the oldsters at SuperAmerica -- they probably wonder what on earth can be so wrong with me at my age that I need pills by the handful!
Why didn't they take your kidneys out through two slits in your back?
I've actually had primary-care doctors try to look for scars on my back even after I've explained the process to them!
Basically, the answer to this is "because they weren't there anymore." At navel level, they had grown to extend from my spine to the sides and front of my abdomen -- literally to the navel. If you push on yourself an inch or two lower than your ribcage, you should only encounter "gushy" stuff -- relaxed muscle and internal organs -- just as I do now.
Prior to removal, if you prodded me there, you'd encounter kidney, which pushed right back at you like a leather sack filled to the bursting point with fluid -- which is pretty much what these were.
A 9-inch incision in front was, I'm told, just enough to get the lefthand monster out. They weren't located in my lower back anymore; they were everywhere.
Monday, December 6, 2010
What 'recovered incredibly fast' means
It's come to my attention that perhaps I haven't been as clear as I could about what "I recovered so fast my transplant coordinator couldn't believe it" means.
One of my correspondents, hearing I'd been at work all last week, was unsurprised at the fact I put nearly 40 hours in and instead wanted to know "You mean she's driving herself there? She can pick up her feet and put them on the pedals?"
Actually, I could pick up my feet and go up and down stairs as often as I liked the day I arrived home -- a far cry from having thought prior to surgery I might have to rent a "commode" for our main floor. (The thought of having to ask Randy to empty that out made me vow that I'd CRAWL upstairs if need be.)
Since then, it's pretty much been all uphill. I went to Target to clearance-clothes shop the Saturday after the Tuesday I got home from the hospital and managed, though trembling toward the end, to put in a good hour and a half of hiking back and forth from the racks to the changing room, carrying clothing around and trying it on.
The day the above query came in was this past Saturday, 3 weeks and a couple days after my surgery. I'd gotten some 11-12 hours of sleep, catching up from the workweek, and early in the afternoon, my "activity supervisor" had gone to bed with a migraine.
This left me a free agent. I took the opportunity to:
1. Shovel the snow off the porch and porch steps with a dustpan (I at least realized I couldn't lift the garage door to get a shovel. It has what our realtor described as "an Armstrong opener.")
2. Remove and wash the furniture covers and the smaller rugs in the living room. All our furniture has removable, washable covers, thanks to the dogs. This took 6 loads.
3. Vacuum rugs on the main floor and 3-season porch about three times in all, before and after after brushing Arm & Hammer "Pet Fresh" into them.
4. Wash the dining-room floor on my hands and knees.
I actually survived better than the vacuum did; on its third or fourth course through the porch, years of fighting setter hair, thread and rug fibers finally took their toll, and it seized up completely. Randy, awakening at this moment, said the beater-bar ends had shifted in their sockets, so we're hoping a new beater bar will keep us in the fur-removal business a while longer.
Hey! Just thought of it -- a vacuum-cleaner organ transplant!
One of my correspondents, hearing I'd been at work all last week, was unsurprised at the fact I put nearly 40 hours in and instead wanted to know "You mean she's driving herself there? She can pick up her feet and put them on the pedals?"
Actually, I could pick up my feet and go up and down stairs as often as I liked the day I arrived home -- a far cry from having thought prior to surgery I might have to rent a "commode" for our main floor. (The thought of having to ask Randy to empty that out made me vow that I'd CRAWL upstairs if need be.)
Since then, it's pretty much been all uphill. I went to Target to clearance-clothes shop the Saturday after the Tuesday I got home from the hospital and managed, though trembling toward the end, to put in a good hour and a half of hiking back and forth from the racks to the changing room, carrying clothing around and trying it on.
The day the above query came in was this past Saturday, 3 weeks and a couple days after my surgery. I'd gotten some 11-12 hours of sleep, catching up from the workweek, and early in the afternoon, my "activity supervisor" had gone to bed with a migraine.
This left me a free agent. I took the opportunity to:
1. Shovel the snow off the porch and porch steps with a dustpan (I at least realized I couldn't lift the garage door to get a shovel. It has what our realtor described as "an Armstrong opener.")
2. Remove and wash the furniture covers and the smaller rugs in the living room. All our furniture has removable, washable covers, thanks to the dogs. This took 6 loads.
3. Vacuum rugs on the main floor and 3-season porch about three times in all, before and after after brushing Arm & Hammer "Pet Fresh" into them.
4. Wash the dining-room floor on my hands and knees.
I actually survived better than the vacuum did; on its third or fourth course through the porch, years of fighting setter hair, thread and rug fibers finally took their toll, and it seized up completely. Randy, awakening at this moment, said the beater-bar ends had shifted in their sockets, so we're hoping a new beater bar will keep us in the fur-removal business a while longer.
Hey! Just thought of it -- a vacuum-cleaner organ transplant!
Wednesday, December 1, 2010
Twins of my twins
They're not mine, but they're pretty close -- just a couple inches bigger in each dimension. The smaller one, like my right one, looks like its cysts have been cut away from something else. The larger, like my left, appears mainly intact.Not many internal organs are up for beauty awards, but for sheer sci-fi horror, polycystic kidneys are in the finalists, huh?
Although I'd taped a note to my robe demanding photos and measurements going into the operation, I apparently failed by letting some woman in the OR take it from me, because I didn't get any photos.
I should have laundry-markered the message on my body under the robe, I suppose.
Anyway, my surgeon blamed herself for not getting photos of the culprits, but I can't say I dare blame her for anything, since everything turned out so well.
Still having a few echo pains from where the left kidney was apparently pressing on a nerve and pain on my right side where apparently the cysts were cut away. They're not persistent or bad, though, just a reminder now and then that I've been through something.
Think I'll print this out and carry it in my wallet for when I wear my "Ask Me How I Lost 20 Pounds in 3 Hours" t-shirt out.
Monday, November 29, 2010
Catching up
I obviously am no good at keeping up with blogging on a daily basis and couldn't while I was in the hospital, so I've gone back to add in posts describing some of what led up to the nephrectomy and daily looks back at the hospital stay and recovery.
If you care to start at Aug. 28 and skim forward from there, you'll hit new material in nearly every post.
Holly
If you care to start at Aug. 28 and skim forward from there, you'll hit new material in nearly every post.
Holly
How to cope
with surgery, recuperation, the accumulation of heavy objects around the house that you can glare at for hours but not pick up?
My suggestion:marry my husband Randy. This, of course, is a path closed to the rest of you (and how) but I think Randy's due for at least a fraction of the gratitude due him. Since I've gotten home, he's:
fed dogs, let dogs out, taken care of dogs at 6 a.m. all day to 11 p.m.
made macaroni and cheese, hamburgers, eggs or whatever else I think my innards can take
shopped for groceries
done laundry
vacuumed
shoveled
done dishes
made beds -- you've never seen a neat bed until you've seen Randy's work
driven me to various appointments at various clinics
as I got better, driven me to department stores to go through clearance clothing.
At the hospital, he was attentive and positive while I was awake and perfectly happy to read while I wasn't. Not having to feel like I'm being entertained, and not having people feel responsible for entertaining me is my ideal for a hospital visitor, I must say.
Of course, Randy is my ideal for just about everything!
My suggestion:marry my husband Randy. This, of course, is a path closed to the rest of you (and how) but I think Randy's due for at least a fraction of the gratitude due him. Since I've gotten home, he's:
fed dogs, let dogs out, taken care of dogs at 6 a.m. all day to 11 p.m.
made macaroni and cheese, hamburgers, eggs or whatever else I think my innards can take
shopped for groceries
done laundry
vacuumed
shoveled
done dishes
made beds -- you've never seen a neat bed until you've seen Randy's work
driven me to various appointments at various clinics
as I got better, driven me to department stores to go through clearance clothing.
At the hospital, he was attentive and positive while I was awake and perfectly happy to read while I wasn't. Not having to feel like I'm being entertained, and not having people feel responsible for entertaining me is my ideal for a hospital visitor, I must say.
Of course, Randy is my ideal for just about everything!
Saturday, November 20, 2010
My surgeon made me cry
Chrissy, a friend and former co-worker who's had two children, noted on e-mail that since I'd lost 20 pounds since the operation, I'd probably have to get a whole new wardrobe.
I'd hoped that perhaps I could get rid of some of the really big clothes, maybe the ones that made me feel huge, and gradually replace the rest.
But something about that e-mail made me go upstairs and pull out a couple tops and some pants.
It appeared during the 5 days I'd been gone, someone had stocked my closet with clown clothes.
Waking up in the hospital, I noticed immediately that my stomach fell down and away from my rib cage, instead of bulging up and out. By the fourth and fifth day, I was sitting up Indian-style in the bed, which I hadn't done since my early 30s. After that, apparently the kidneys had taken over, shutting down my breathing as they pushed up into my lungs.
I've written elsewhere about my size 10-12 hips and thighs and size-24 waist, but the fact I could now pull every shirt I owned out to 6 inches from my waist really brought the message home. What had disappeared had disappeared from my hips to my rib cage, leaving it concave instead of convex.
I forgot to measure my waist before I went in for surgery, but I'm sure it was over 50 inches.
But I guess I didn't realize how far I'd come until Randy took me to Target to see if there were anything on the clearance racks that came any closer to fitting me. I found a pair of leggings in medium -- an avenue closed to anyone shaped like I was.
With an armful of tops and sweaters -- seriously, who knew what size I might be at this point? -- I went into the fitting room. I was feeling shaky and lightheaded -- this was Saturday and certainly the most exercise I'd had since before surgery.
I pulled on a long, thigh-length sweater that clung too close to purchase. But what it clung to was an obvious waist. How many years had it been since I'd seen that? How long had I been wearing women's elastic-waist knit pants and men's T-shirts and sweatshirts I got at Goodwill? How frantic was I during the months it looked like they were going to leave my kidneys in? And for how many years before that had I blamed myself for being "fat"?
One of the things my surgeon told me right before the operation was "You'll feel so svelte!" Genius, procedure and technical capability put aside, she knew.
I certainly never expected to look svelte again, and it's a shock every time I look in the mirror. People at work say just seeing me walk by in the corners of their vision, they're not registering it's me.
So, apologies to Target shoppers on the afternoon of Saturday, Nov. 20. The woman bawling and clinging to her ever-understanding husband was me.
I know -- I've had my life saved and, on top of that, the quality of my life given back to me. This shouldn't matter so much.
But perhaps to a woman --and certainly to this one, it does.
I'd hoped that perhaps I could get rid of some of the really big clothes, maybe the ones that made me feel huge, and gradually replace the rest.
But something about that e-mail made me go upstairs and pull out a couple tops and some pants.
It appeared during the 5 days I'd been gone, someone had stocked my closet with clown clothes.
Waking up in the hospital, I noticed immediately that my stomach fell down and away from my rib cage, instead of bulging up and out. By the fourth and fifth day, I was sitting up Indian-style in the bed, which I hadn't done since my early 30s. After that, apparently the kidneys had taken over, shutting down my breathing as they pushed up into my lungs.
I've written elsewhere about my size 10-12 hips and thighs and size-24 waist, but the fact I could now pull every shirt I owned out to 6 inches from my waist really brought the message home. What had disappeared had disappeared from my hips to my rib cage, leaving it concave instead of convex.
I forgot to measure my waist before I went in for surgery, but I'm sure it was over 50 inches.
But I guess I didn't realize how far I'd come until Randy took me to Target to see if there were anything on the clearance racks that came any closer to fitting me. I found a pair of leggings in medium -- an avenue closed to anyone shaped like I was.
With an armful of tops and sweaters -- seriously, who knew what size I might be at this point? -- I went into the fitting room. I was feeling shaky and lightheaded -- this was Saturday and certainly the most exercise I'd had since before surgery.
I pulled on a long, thigh-length sweater that clung too close to purchase. But what it clung to was an obvious waist. How many years had it been since I'd seen that? How long had I been wearing women's elastic-waist knit pants and men's T-shirts and sweatshirts I got at Goodwill? How frantic was I during the months it looked like they were going to leave my kidneys in? And for how many years before that had I blamed myself for being "fat"?
One of the things my surgeon told me right before the operation was "You'll feel so svelte!" Genius, procedure and technical capability put aside, she knew.
I certainly never expected to look svelte again, and it's a shock every time I look in the mirror. People at work say just seeing me walk by in the corners of their vision, they're not registering it's me.
So, apologies to Target shoppers on the afternoon of Saturday, Nov. 20. The woman bawling and clinging to her ever-understanding husband was me.
I know -- I've had my life saved and, on top of that, the quality of my life given back to me. This shouldn't matter so much.
But perhaps to a woman --and certainly to this one, it does.
Wednesday, November 17, 2010
First Morning Back
-- by Randy
So Holly slept in her own bed last night and it is a pretty happy day today. I'm happy. The Dog Fairies are happy. At some point we should begin to hear from the patient herself and her side of the experience.
We still haven't gotten any information about the kidneys so we have to wait a little longer on that. However, from the time she was weighed minutes before surgery to now, Holly's lost 15 pounds! That's a "so far" weight -- after spending days on continual IV fluids, her tissues will probably keep throwing off water for up to a week after she gets home.
-----------Holly, later--------
Getting home was so great. It's easy to forget when you're well that being able to sleep when you're tired, drink when you're thirsty and eat when you're hungry are so essential.
Yesterday, when I got home, I called my transplant coordinator, who admitted she'd panicked a little when she saw the call come in so soon after discharge. I just wanted to get clear with her on when I should have labs and where.
I then told her I'd only had a pain pill to nap that day. "I can't believe it," she said. "I just can't believe it."
Well, there's my theory that I heal like a dog -- a couple days down and then you've gotta keep up with the other predators. I've told several RNs this theory and not had any argument.
Meanwhile, I only found out tonight that, as Randy puts it, "they had to unzip your large intestine from your abdominal wall." No wonder it took from Wednesday night to Monday morning to be able to eat oatmeal!
I notice this when I've been "vertical" -- walking or sitting up -- for a while, then go to bed and try to lie on my side. I can feel things slowly sliding downhill in there. It's not painful, but unnerving enough that I switch to my back.
I still have some kind of echoing pain in my lower left back, from the place I assume that kidney was pressing on a nerve. But the regular dull ache is gone. It actually surprises me sometimes -- hey! No kidney pain!
As I left work, I told the folks there this should put a stop to the grunting and groaning coming from my chair at random times during the day. "That's good," my staff writer said. "When that happens, I always assume it's because you're reading one of my stories."
The fact it'll also stop my mutting "Damn kidneys" as I stop midstep and hop around on one foot as I pull the other knee to my chest should probably go unspoken.
So Holly slept in her own bed last night and it is a pretty happy day today. I'm happy. The Dog Fairies are happy. At some point we should begin to hear from the patient herself and her side of the experience.
We still haven't gotten any information about the kidneys so we have to wait a little longer on that. However, from the time she was weighed minutes before surgery to now, Holly's lost 15 pounds! That's a "so far" weight -- after spending days on continual IV fluids, her tissues will probably keep throwing off water for up to a week after she gets home.
-----------Holly, later--------
Getting home was so great. It's easy to forget when you're well that being able to sleep when you're tired, drink when you're thirsty and eat when you're hungry are so essential.
Yesterday, when I got home, I called my transplant coordinator, who admitted she'd panicked a little when she saw the call come in so soon after discharge. I just wanted to get clear with her on when I should have labs and where.
I then told her I'd only had a pain pill to nap that day. "I can't believe it," she said. "I just can't believe it."
Well, there's my theory that I heal like a dog -- a couple days down and then you've gotta keep up with the other predators. I've told several RNs this theory and not had any argument.
Meanwhile, I only found out tonight that, as Randy puts it, "they had to unzip your large intestine from your abdominal wall." No wonder it took from Wednesday night to Monday morning to be able to eat oatmeal!
I notice this when I've been "vertical" -- walking or sitting up -- for a while, then go to bed and try to lie on my side. I can feel things slowly sliding downhill in there. It's not painful, but unnerving enough that I switch to my back.
I still have some kind of echoing pain in my lower left back, from the place I assume that kidney was pressing on a nerve. But the regular dull ache is gone. It actually surprises me sometimes -- hey! No kidney pain!
As I left work, I told the folks there this should put a stop to the grunting and groaning coming from my chair at random times during the day. "That's good," my staff writer said. "When that happens, I always assume it's because you're reading one of my stories."
The fact it'll also stop my mutting "Damn kidneys" as I stop midstep and hop around on one foot as I pull the other knee to my chest should probably go unspoken.
Tuesday, November 16, 2010
Surprise
Imagine my surprise when I got a call this morning at 8:45. It was Holly, "It looks like I'm getting out at noon today."
She said that she forgot her "sleeping" pill so she got up at 4 a.m.ravenously hungry and started her Tuesday early. As in bumming an essential-to-life "clear-liquid breakfast" of Jello off a nurse. When you've been on clear liquids for 72 hours and fear melting and slipping through a floor drain if anyone turns up the heat, a half cup of Jello can beckon like a half-pound steak.
With that nutrition on board, it was then a question of taking a shower, sorting clothes and bedding and otherwise filling time until food service opened. At 6:30 a.m. she picked up the phone for food service and phoned down the order for oatmeal, 2 % on the side and brown sugar she'd been dreaming off and on for two days. What? No one had switched her to "semi-solid foods" and she couldn't get it yet? Have you people seen the fury of an ill-fed, sleep-deprived, somewhat-damp hospital patient? Yes, that's her over there in bed, but note how high she's got the top of that bed cranked.
Holly chased down a nurse who thought there "might" be a doctor around at that time and got the transaction completed. Within 45 minutes, that cherished bowl of grain was in its proper spot.
I got there and she was sitting up bed. We were talking about what she had been doing and she said "Is this what you meant by chirpy?" Later Holly's surgeon stopped by and they talked about the plans for their next meeting. Then after some paper work and a couple more consultations Holly got discharged.
So now we are home.
----------Holly, later---------
That 7 a.m. bowl of oatmeal was so good I ordered another for "lunch" at 10:30!
When the doctors made the rounds, one with a pronounced accent took the lead with me. He asked (I realize now) "Do you want to go home?"
I registered bafflement.
"Do you want to go home?"
Hoping to pin down what might be a crucial question, I dutifully repeated back, "Do you want to go home?"
The next sally came through loud and clear. "I asked you first!"
So there we were . I woke poor Randy up calling him -- it's incredibly enverating to sit at a bedside and alternately entertain yourself and a patient for hours on end. But I hoped I wouldn't be so demanding a patient at home that he couldn't continue to catch up on his rest!
And the idea of not spending another wakeful night at the U (Law & Order or no Law & Order) sounded, to quote my nurse, "lovely".
She said that she forgot her "sleeping" pill so she got up at 4 a.m.ravenously hungry and started her Tuesday early. As in bumming an essential-to-life "clear-liquid breakfast" of Jello off a nurse. When you've been on clear liquids for 72 hours and fear melting and slipping through a floor drain if anyone turns up the heat, a half cup of Jello can beckon like a half-pound steak.
With that nutrition on board, it was then a question of taking a shower, sorting clothes and bedding and otherwise filling time until food service opened. At 6:30 a.m. she picked up the phone for food service and phoned down the order for oatmeal, 2 % on the side and brown sugar she'd been dreaming off and on for two days. What? No one had switched her to "semi-solid foods" and she couldn't get it yet? Have you people seen the fury of an ill-fed, sleep-deprived, somewhat-damp hospital patient? Yes, that's her over there in bed, but note how high she's got the top of that bed cranked.
Holly chased down a nurse who thought there "might" be a doctor around at that time and got the transaction completed. Within 45 minutes, that cherished bowl of grain was in its proper spot.
I got there and she was sitting up bed. We were talking about what she had been doing and she said "Is this what you meant by chirpy?" Later Holly's surgeon stopped by and they talked about the plans for their next meeting. Then after some paper work and a couple more consultations Holly got discharged.
So now we are home.
----------Holly, later---------
That 7 a.m. bowl of oatmeal was so good I ordered another for "lunch" at 10:30!
When the doctors made the rounds, one with a pronounced accent took the lead with me. He asked (I realize now) "Do you want to go home?"
I registered bafflement.
"Do you want to go home?"
Hoping to pin down what might be a crucial question, I dutifully repeated back, "Do you want to go home?"
The next sally came through loud and clear. "I asked you first!"
So there we were . I woke poor Randy up calling him -- it's incredibly enverating to sit at a bedside and alternately entertain yourself and a patient for hours on end. But I hoped I wouldn't be so demanding a patient at home that he couldn't continue to catch up on his rest!
And the idea of not spending another wakeful night at the U (Law & Order or no Law & Order) sounded, to quote my nurse, "lovely".
Monday, November 15, 2010
A plateau day
-- by Randy
Holly had had a shower by the time I got here today and was getting up and down slowly but on her own. It does look like napping is still a big part of the schedule.
I think the reason she is resting so well is the pain management has been worked out. This is probably why so far the bipedal jaunts are only jaunty with in the room but it's still early yet. The occupational therapist hasn't been in yet. I always thought of occupational therapist as being work, that is employment, related but I think now that the meaning is "to keep one occupied." Work is also a word for effort and keeping occupied at this stage is extra effort.
Mostly she looks better and is resting comfortably. Time and naps and healing. Thanks to everyone for the emails and the calls.
----------Holly, later--------
Last night (Sunday) I was alone in a two-person room. My "roommate" Melissa went home at six. She had donated a kidney to her father, who had suffered sudden-onset kidney failure. Both seemed to be doing great.
I had the most delightful nurse -- arrived with a sunny outlook and only got more positive from there. When I inform her of things like "I'm going to change gowns and then walk down the hall," she says "That sounds like a lovely plan!" as though I've just suggested a picnic.
Positivity helps. After two go-rounds, I think my body's response to surgery is to stay awake, since the last time it fell asleep something awful happened. After the transplant, I assumed the sleepless, thrashing, eye-watering hours awake were due to steroids.
This time around, I am on a much lower dose of steroids, plus have my usual sleeping pill in the evening. And I'm still up until midnight, up again at 2, up again at 4. Thank heavens there's a Law & Order marathon on.
Now that I've actually ventured out the door, I'm even more impressed with the nursing staff here. If you wander out at 4 a.m. to see if there's any juice or Jello in the area (this is assuming you're a person on a "clear liquids" diet for four days) the first person you ask will say "What flavor?" jump up and get it for you. It doesn't matter who they are or what they seem to be doing at the time; there's no "I'll call your nurse" or "I'll see if there's an aide around."
And when they stop in to check vitals or hang an IV bag, they never leave without asking "Is there anything else I can do for you?" And they mean it. When you can't even sit up in bed, adding an extra blanket or or putting your oxygen on again can be the difference between resting comfortably and staying miserably awake.
I'm so thankful to all of them. Especially the one who slipped and asked "Is there anything more I can do to you?"
That was delightful too!
Holly had had a shower by the time I got here today and was getting up and down slowly but on her own. It does look like napping is still a big part of the schedule.
I think the reason she is resting so well is the pain management has been worked out. This is probably why so far the bipedal jaunts are only jaunty with in the room but it's still early yet. The occupational therapist hasn't been in yet. I always thought of occupational therapist as being work, that is employment, related but I think now that the meaning is "to keep one occupied." Work is also a word for effort and keeping occupied at this stage is extra effort.
Mostly she looks better and is resting comfortably. Time and naps and healing. Thanks to everyone for the emails and the calls.
----------Holly, later--------
Last night (Sunday) I was alone in a two-person room. My "roommate" Melissa went home at six. She had donated a kidney to her father, who had suffered sudden-onset kidney failure. Both seemed to be doing great.
I had the most delightful nurse -- arrived with a sunny outlook and only got more positive from there. When I inform her of things like "I'm going to change gowns and then walk down the hall," she says "That sounds like a lovely plan!" as though I've just suggested a picnic.
Positivity helps. After two go-rounds, I think my body's response to surgery is to stay awake, since the last time it fell asleep something awful happened. After the transplant, I assumed the sleepless, thrashing, eye-watering hours awake were due to steroids.
This time around, I am on a much lower dose of steroids, plus have my usual sleeping pill in the evening. And I'm still up until midnight, up again at 2, up again at 4. Thank heavens there's a Law & Order marathon on.
Now that I've actually ventured out the door, I'm even more impressed with the nursing staff here. If you wander out at 4 a.m. to see if there's any juice or Jello in the area (this is assuming you're a person on a "clear liquids" diet for four days) the first person you ask will say "What flavor?" jump up and get it for you. It doesn't matter who they are or what they seem to be doing at the time; there's no "I'll call your nurse" or "I'll see if there's an aide around."
And when they stop in to check vitals or hang an IV bag, they never leave without asking "Is there anything else I can do for you?" And they mean it. When you can't even sit up in bed, adding an extra blanket or or putting your oxygen on again can be the difference between resting comfortably and staying miserably awake.
I'm so thankful to all of them. Especially the one who slipped and asked "Is there anything more I can do to you?"
That was delightful too!
Sunday, November 14, 2010
Later on Sunday
-- by Randy
So after an exciting morning of showers and bathroom breaks and talking to surgeons Holly is spending the afternoon resting. The I.V. being back in seems to have resolved the discomfort.
It is not easy for Holly to get out of bed but I am actually amazed at how she is doing with that. Cringing and wincing -- but not feeling uncomfortable enough to stop her trying. Maybe tomorrow she will get a lap or two in the hall. Holly says "I hope to make it okay through the night and have oatmeal in the morning." Now there's a name for a boomer rock band: "OAT MEAL IN THE MORNING."
I am checking the hollys2ndlife@gmail.com email so if you want to send her a message there so I can share them with her.
So after an exciting morning of showers and bathroom breaks and talking to surgeons Holly is spending the afternoon resting. The I.V. being back in seems to have resolved the discomfort.
It is not easy for Holly to get out of bed but I am actually amazed at how she is doing with that. Cringing and wincing -- but not feeling uncomfortable enough to stop her trying. Maybe tomorrow she will get a lap or two in the hall. Holly says "I hope to make it okay through the night and have oatmeal in the morning." Now there's a name for a boomer rock band: "OAT MEAL IN THE MORNING."
I am checking the hollys2ndlife@gmail.com email so if you want to send her a message there so I can share them with her.
Sunday-a brand new day
-- by Randy
Last night I left as we were waiting for the doctors to come by on rounds. It was getting later and I had heard that the Transplant teams were pretty busy this weekend. There do seem to be a lot of patients on the floor. It looked like Holly was in for a rough night. During the day she was making visible progress. At that point I think there was some attempt to adjust her pain management. I assumed that when she was seen by a doctor that she would get a better setup. When I left she was not comfortable.
That being said imagine my surprise when as I walked into the room Holly was walking toward me on the way to the bathroom. There was a doctor there and he said that about eight last night they adjusted her pain medication. The nurse came in a little later and asked why Holly didn't have her I.V. in. Holly said she accidentally pulled it out when ( wait for it...) she was taking a shower.
So the I.V. will be returned but Holly is free of most other tubes which have brought to light some minor non-surgical issues. Mostly though she is way more herself and participating in her recovery.
-------Holly, later-------
I woke up this morning and whiled away a few hours before getting a "breakfast" of clear liquids. Broth, Jello, water, apple juice. It may not sound like much to anyone on a regular diet, but to someone who hadn't eaten since 11 p.m. Wednesday, the juice and a little Jello were a lifesaver.
I napped for a while and then woke up before my surgeon stopped by. She was on her own so sat down to chat. She saw my stomach tube wasn't working well so she took it apart, flushed it and got it going again. The tube's used to draw out excess fluids, so I don't get nauseated. It's also used to administer some meds. "I'll leave it on 'intermittent' -- don't want the nurses to get mad at me!" she said.
After she left, I thought "Man, it would feel good to have a shower, and it would be nice to get one before Randy arrives."
So did I call a nurse? Did I take the extra four steps past the bathroom door to poke my head out the door and ask someone to send my nurse's aide along? Did I even wait for Randy to help me?
No, of course not. With my newfound knowledge of how to uncouple my stomach tube, I undid that. I took the oxygen loop off my head and hung it on the bed rail. I removed the catheter collection bag from the lower rail and hung it on my IV pole. Then, except for the IV pole, I was free! And that pole has five wheels for a reason, right?
After nearly 3 days in bed, it felt like the Great Escape.
Once I got to the bathroom I was a little surprised to find that my stomach tube had been clipped to the front of my gown, mainly to ease the weight of the tube inside my nose. Ouch! But I'd committed myself this far, and I was, of course, hardheaded enough to keep going.
With the IV and catheter tubes leading out of the shower, there was no good way to close the curtain, and for quite a while I thought the flood on the bathroom floor was my biggest problem.
As I used the handheld spray (couldn't figure out how to mount it up on the wall) the IV in the back of my right hand hurt more than my nose as it got pulled and bumped. However, I got done and did an extra rinse of my hair. The IV gave me one last pang and I looked down at it. . . there was a good reason for that. It had pulled completely out and there was blood slowly going splot, splot, splot on the floor.
I pulled the "emergency call" cord. Apparently what happens is the first person in the hall who sees it runs in. My rescuer was a middle-aged, practical woman with a sense of humor. She started cleaning off my hand and pressing the vein to stop the bleeding. (A valiant attempt, given that I'd been getting heparin blood-thinning shots since the operation.)
Hard on her heels came my nurse's aide, a 20-year-old kid named Denny. Denny stood on the other side of the threshold, taking in the tableau of me in the altogether, the IV pole, and the aide on her knees in front of me applying pressure bandages to my hand. However, he was taken by another aspect of the drama.
"There's blood all over!" he exclaimed. "There's blood everywhere!" He appeared ready to stand there and enlarge on this theme, except the nurse cut him short. "Denny! Get me some towels!"
There was certainly water everywhere, and every time a drop of blood landed in it, it spread quickly. The nurse was intent on cleaning every bit of blood off my arm and me, although I assured her it didn't bother me. After all, it was my blood.
"It'll bother somebody here," she said wryly. "You can depend on that."
So, she was still mopping at the blood when Denny returned with an armload of towels, washcloths, blankets and robes. They were mainly deployed on the floor, with a few left over for me.
Once his arms were emptied, Denny again had the opportunity to opine on the situation.
"There's blood all over!" he announced. "There's blood everywhere!"
Later, one of my fave nurses, who'd somehow missed all the excitement and the blood, looked at me agape when we told her the story. "You're the second patient today to do that!" she said.
Well, I was clean, I'd finally done something that qualified as "physical" and I had a (probably misplaced) feeling of accomplishment. Things were definitely getting better.
Last night I left as we were waiting for the doctors to come by on rounds. It was getting later and I had heard that the Transplant teams were pretty busy this weekend. There do seem to be a lot of patients on the floor. It looked like Holly was in for a rough night. During the day she was making visible progress. At that point I think there was some attempt to adjust her pain management. I assumed that when she was seen by a doctor that she would get a better setup. When I left she was not comfortable.
That being said imagine my surprise when as I walked into the room Holly was walking toward me on the way to the bathroom. There was a doctor there and he said that about eight last night they adjusted her pain medication. The nurse came in a little later and asked why Holly didn't have her I.V. in. Holly said she accidentally pulled it out when ( wait for it...) she was taking a shower.
So the I.V. will be returned but Holly is free of most other tubes which have brought to light some minor non-surgical issues. Mostly though she is way more herself and participating in her recovery.
-------Holly, later-------
I woke up this morning and whiled away a few hours before getting a "breakfast" of clear liquids. Broth, Jello, water, apple juice. It may not sound like much to anyone on a regular diet, but to someone who hadn't eaten since 11 p.m. Wednesday, the juice and a little Jello were a lifesaver.
I napped for a while and then woke up before my surgeon stopped by. She was on her own so sat down to chat. She saw my stomach tube wasn't working well so she took it apart, flushed it and got it going again. The tube's used to draw out excess fluids, so I don't get nauseated. It's also used to administer some meds. "I'll leave it on 'intermittent' -- don't want the nurses to get mad at me!" she said.
After she left, I thought "Man, it would feel good to have a shower, and it would be nice to get one before Randy arrives."
So did I call a nurse? Did I take the extra four steps past the bathroom door to poke my head out the door and ask someone to send my nurse's aide along? Did I even wait for Randy to help me?
No, of course not. With my newfound knowledge of how to uncouple my stomach tube, I undid that. I took the oxygen loop off my head and hung it on the bed rail. I removed the catheter collection bag from the lower rail and hung it on my IV pole. Then, except for the IV pole, I was free! And that pole has five wheels for a reason, right?
After nearly 3 days in bed, it felt like the Great Escape.
Once I got to the bathroom I was a little surprised to find that my stomach tube had been clipped to the front of my gown, mainly to ease the weight of the tube inside my nose. Ouch! But I'd committed myself this far, and I was, of course, hardheaded enough to keep going.
With the IV and catheter tubes leading out of the shower, there was no good way to close the curtain, and for quite a while I thought the flood on the bathroom floor was my biggest problem.
As I used the handheld spray (couldn't figure out how to mount it up on the wall) the IV in the back of my right hand hurt more than my nose as it got pulled and bumped. However, I got done and did an extra rinse of my hair. The IV gave me one last pang and I looked down at it. . . there was a good reason for that. It had pulled completely out and there was blood slowly going splot, splot, splot on the floor.
I pulled the "emergency call" cord. Apparently what happens is the first person in the hall who sees it runs in. My rescuer was a middle-aged, practical woman with a sense of humor. She started cleaning off my hand and pressing the vein to stop the bleeding. (A valiant attempt, given that I'd been getting heparin blood-thinning shots since the operation.)
Hard on her heels came my nurse's aide, a 20-year-old kid named Denny. Denny stood on the other side of the threshold, taking in the tableau of me in the altogether, the IV pole, and the aide on her knees in front of me applying pressure bandages to my hand. However, he was taken by another aspect of the drama.
"There's blood all over!" he exclaimed. "There's blood everywhere!" He appeared ready to stand there and enlarge on this theme, except the nurse cut him short. "Denny! Get me some towels!"
There was certainly water everywhere, and every time a drop of blood landed in it, it spread quickly. The nurse was intent on cleaning every bit of blood off my arm and me, although I assured her it didn't bother me. After all, it was my blood.
"It'll bother somebody here," she said wryly. "You can depend on that."
So, she was still mopping at the blood when Denny returned with an armload of towels, washcloths, blankets and robes. They were mainly deployed on the floor, with a few left over for me.
Once his arms were emptied, Denny again had the opportunity to opine on the situation.
"There's blood all over!" he announced. "There's blood everywhere!"
Later, one of my fave nurses, who'd somehow missed all the excitement and the blood, looked at me agape when we told her the story. "You're the second patient today to do that!" she said.
Well, I was clean, I'd finally done something that qualified as "physical" and I had a (probably misplaced) feeling of accomplishment. Things were definitely getting better.
Saturday, November 13, 2010
A few whys and hows we've come to this
(A summary Randy composed for people who are just catching up with the blog. He put it together sitting at Holly's bedside after the November 11 nephrectomy.)
May 24 -- changed life arc
I had entirely expected that my PKD would proceed much as my father’s had. That is not show symptoms until my fifties, but it was not to be. I'm in my early forties so have a long career of immunosuppression ahead of me.
I'm so glad so much has changed in transplantation over the last 27 years. But who knows? The next 5-10 may bring us the DNA-matched kidney or the marker-washed pig kidney! no more immunosuppression!
August 2009 -- an intermittent struggle but going forward
It was an uphill battle to get the U surgeons to agree to take my native kidneys out. Much push back and such specious logic as "You don't get lower back pain with enlarged kidneys." (Oh really?)
I happened to be having an awful day with pain (it comes and goes for a few days at a time, then a week or 2 off) when I was in for an appointment and a doctor walked in to see me with my leg and knee flexed up on the exam table while I cried in pain. . . that finally made an impression.
We still a second opinion from an orthopedist to make sure I didn't have classic back pain. Bless him, he pulled the MRI up and saw it at the same time I did. In a cross-section at my navel, you could see my spine, and then nothing but kidneys right out to the borders of the frame. "I'm not a kidney doctor, but even I can tell your pain is probably coming from these (he paused to try to phrase it more elegantly, then gave up the fight) gigantic kidneys."
People are interested in what my experience might has been like at various point as the disease progressed -- well, at 40 percent, I was pretty much as active as ever, though perhaps not as energetic as I'd been in my 20s. What really took the toll was the dread of what would eventually, assuredly happen to me. (I fully expected to go downhill on dialysis until a cadaver kidney became available.) At under 30 percent function, I had a huge wakeup call when my blood pressure meds stopped controlling the pressure and it went right through the roof. I couldn't think clearly or concentrate on anything. That's when I found out just how bad off I was -- a day before my 40th birthday.
The plan is to have an "open" nephrectomy in which they open me up from the breastbone down past my navel -- like a big old-fashioned C-section. [Ironic since the size of the Kidneys gives people the impression Holly and other PKD women are pregnant. rss]
The plan also includes taking out a bunch of "while we're in theres" such as my gallbladder, my appendix and perhaps my spleen if the left kidney is too far involved with it. I rather dread the whole thing, but the amount of pain I've had even since the transplant tells me there's no question I need it. [There was no need to remove the spleen. rss]
May 26
I don't think of wanting this nephrectomy as vanity. [Women with PKD often are mistaken for being pregnant and individuals who make this mistake create embarrassment for themselves and annoy the woman they are talking to. rss] I think these two things that are each 12 inches long by 6-7 inches in diameter must weigh QUITE a bit. Having all that on my back, knees, and feet for the rest of my life is more than I'm up for.
Isn't it strange how PKD takes different families and individuals? A family close to us has it but it most often affects when they're elderly. The sister of the family member we know best has it, though, and has far more problems with liver cysts than kidney cysts.
It's funny how -- well, ignorant -- even health professionals are about PKD. A doctor of my acquaintance had a nurse for years who'd worked for a doctor whose daughter had given him a kidney. We'd go over my records every time I came in and establish that I had PKD and I inherited it from my father. And then she'd ask, "Did you ever consider donating a kidney to your father?" I always just said "no" and let her think I was some kind of slacker instead of getting into "Well, my kidney wouldn't have lasted him as long as the one he's got, and losing one would cut my pre-transplant lifetime in half."
I was very relieved when she retired and we didn't have to go through this routine anymore.
July 23
Just came across another new twist:
I was curious about GFR (the measure of the flow rate/function of kidneys) after I got Cheryl's. Judging that my own kidneys were down under 12 percent or so, adding Cheryl's only increased GFR to 48 percent. I wondered at the time if her kidney, though doing a great job, was a little shocked by the experience.
I'm now up to about 54 percent function overall, and so asked my coordinator about this.
She said that a lone kidney left in a healthy person (a living donor) senses it's on its own and simply performs even more to handle the extra. Such a kidney might increase its GFR by as much as 20 percent at a year following the transplant of the other.
In my case, the new kidney will also adapt to handle more work, but likely will not hit the 20 percent extra due to being inhibited by immunosuppressants. (The usual immunosuppressant conundrum.)
So, at some future date, Cheryl and I could be getting 130 percent out of those kidneys!
August 10
You know, I haven't blogged for perhaps 2 months. It seems like I have so much to do -- and most the "exciting" stuff is over -- but people do ask. [It’s not exciting to you but we all think it’s pretty swell. rss]
Oct 12
Yeah-- I HAVE to get into that blog again. As one of my outstate friends noted, "You went back to work and poof! nothing!" Work is my life -- was here 16 hours yesterday -- and I have been concentrating on that and projects at home with all the energy I've got. Amazing what you can get done when you're not sleeping 14 hours a day. . .
Nov 8
Mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!
My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.
"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.
"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.) [Holly has a post about this event here. rss]
May 24 -- changed life arc
I had entirely expected that my PKD would proceed much as my father’s had. That is not show symptoms until my fifties, but it was not to be. I'm in my early forties so have a long career of immunosuppression ahead of me.
I'm so glad so much has changed in transplantation over the last 27 years. But who knows? The next 5-10 may bring us the DNA-matched kidney or the marker-washed pig kidney! no more immunosuppression!
August 2009 -- an intermittent struggle but going forward
It was an uphill battle to get the U surgeons to agree to take my native kidneys out. Much push back and such specious logic as "You don't get lower back pain with enlarged kidneys." (Oh really?)
I happened to be having an awful day with pain (it comes and goes for a few days at a time, then a week or 2 off) when I was in for an appointment and a doctor walked in to see me with my leg and knee flexed up on the exam table while I cried in pain. . . that finally made an impression.
We still a second opinion from an orthopedist to make sure I didn't have classic back pain. Bless him, he pulled the MRI up and saw it at the same time I did. In a cross-section at my navel, you could see my spine, and then nothing but kidneys right out to the borders of the frame. "I'm not a kidney doctor, but even I can tell your pain is probably coming from these (he paused to try to phrase it more elegantly, then gave up the fight) gigantic kidneys."
People are interested in what my experience might has been like at various point as the disease progressed -- well, at 40 percent, I was pretty much as active as ever, though perhaps not as energetic as I'd been in my 20s. What really took the toll was the dread of what would eventually, assuredly happen to me. (I fully expected to go downhill on dialysis until a cadaver kidney became available.) At under 30 percent function, I had a huge wakeup call when my blood pressure meds stopped controlling the pressure and it went right through the roof. I couldn't think clearly or concentrate on anything. That's when I found out just how bad off I was -- a day before my 40th birthday.
The plan is to have an "open" nephrectomy in which they open me up from the breastbone down past my navel -- like a big old-fashioned C-section. [Ironic since the size of the Kidneys gives people the impression Holly and other PKD women are pregnant. rss]
The plan also includes taking out a bunch of "while we're in theres" such as my gallbladder, my appendix and perhaps my spleen if the left kidney is too far involved with it. I rather dread the whole thing, but the amount of pain I've had even since the transplant tells me there's no question I need it. [There was no need to remove the spleen. rss]
May 26
I don't think of wanting this nephrectomy as vanity. [Women with PKD often are mistaken for being pregnant and individuals who make this mistake create embarrassment for themselves and annoy the woman they are talking to. rss] I think these two things that are each 12 inches long by 6-7 inches in diameter must weigh QUITE a bit. Having all that on my back, knees, and feet for the rest of my life is more than I'm up for.
Isn't it strange how PKD takes different families and individuals? A family close to us has it but it most often affects when they're elderly. The sister of the family member we know best has it, though, and has far more problems with liver cysts than kidney cysts.
It's funny how -- well, ignorant -- even health professionals are about PKD. A doctor of my acquaintance had a nurse for years who'd worked for a doctor whose daughter had given him a kidney. We'd go over my records every time I came in and establish that I had PKD and I inherited it from my father. And then she'd ask, "Did you ever consider donating a kidney to your father?" I always just said "no" and let her think I was some kind of slacker instead of getting into "Well, my kidney wouldn't have lasted him as long as the one he's got, and losing one would cut my pre-transplant lifetime in half."
I was very relieved when she retired and we didn't have to go through this routine anymore.
July 23
Just came across another new twist:
I was curious about GFR (the measure of the flow rate/function of kidneys) after I got Cheryl's. Judging that my own kidneys were down under 12 percent or so, adding Cheryl's only increased GFR to 48 percent. I wondered at the time if her kidney, though doing a great job, was a little shocked by the experience.
I'm now up to about 54 percent function overall, and so asked my coordinator about this.
She said that a lone kidney left in a healthy person (a living donor) senses it's on its own and simply performs even more to handle the extra. Such a kidney might increase its GFR by as much as 20 percent at a year following the transplant of the other.
In my case, the new kidney will also adapt to handle more work, but likely will not hit the 20 percent extra due to being inhibited by immunosuppressants. (The usual immunosuppressant conundrum.)
So, at some future date, Cheryl and I could be getting 130 percent out of those kidneys!
August 10
You know, I haven't blogged for perhaps 2 months. It seems like I have so much to do -- and most the "exciting" stuff is over -- but people do ask. [It’s not exciting to you but we all think it’s pretty swell. rss]
Oct 12
Yeah-- I HAVE to get into that blog again. As one of my outstate friends noted, "You went back to work and poof! nothing!" Work is my life -- was here 16 hours yesterday -- and I have been concentrating on that and projects at home with all the energy I've got. Amazing what you can get done when you're not sleeping 14 hours a day. . .
Nov 8
Mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!
My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.
"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.
"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.) [Holly has a post about this event here. rss]
Later on Saturday
-- by Randy
Well we are more than 48 hours from the surgery and Holly looks better and is clearing some of the anesthesia and other drugs from the operation. The team is working to alleviate more of her pain. She still has some issues related to physical interventions like breathing tubes related to the surgery and anesthesia. We also are waiting the "flatus" event that will announce the return of peristalsis. The waiting for this and other indicators is difficult.
What I neglected to say earlier is that we are in the same room as we were for the transplant, only on the window side.
---------Holly, later------
On Saturday, I still felt rotten and was managing to avoid sitting up with various excuses and offers to do it "later." On the physical therapist's visit that afternoon, I figured I couldn't put it off anymore. Plus, she and the nurse tempted me with an offer to change my sheets and bedding while I was up -- that was convincing in itself!
So, with one of them on each side, I levered myself to a sitting position, then shuffled the 4 or 5 steps to a chair.
As they made the bed, the physical therapist -- who'd obviously had some experience with this -- glanced back at me now and then, as I clutched the seat of the chair with white knuckles and gritted my teeth. "She's not getting enough pain medication," she told the nurse.
They quickly figured out I wasn't able to "voluntarily" dose myself enough with the pain pump, and introduced IV pain control. I don't know what went wrong this time, except maybe I was too knocked out to take charge of my situation.
An observant physical therapist was the start of the turnaround.
Well we are more than 48 hours from the surgery and Holly looks better and is clearing some of the anesthesia and other drugs from the operation. The team is working to alleviate more of her pain. She still has some issues related to physical interventions like breathing tubes related to the surgery and anesthesia. We also are waiting the "flatus" event that will announce the return of peristalsis. The waiting for this and other indicators is difficult.
What I neglected to say earlier is that we are in the same room as we were for the transplant, only on the window side.
---------Holly, later------
On Saturday, I still felt rotten and was managing to avoid sitting up with various excuses and offers to do it "later." On the physical therapist's visit that afternoon, I figured I couldn't put it off anymore. Plus, she and the nurse tempted me with an offer to change my sheets and bedding while I was up -- that was convincing in itself!
So, with one of them on each side, I levered myself to a sitting position, then shuffled the 4 or 5 steps to a chair.
As they made the bed, the physical therapist -- who'd obviously had some experience with this -- glanced back at me now and then, as I clutched the seat of the chair with white knuckles and gritted my teeth. "She's not getting enough pain medication," she told the nurse.
They quickly figured out I wasn't able to "voluntarily" dose myself enough with the pain pump, and introduced IV pain control. I don't know what went wrong this time, except maybe I was too knocked out to take charge of my situation.
An observant physical therapist was the start of the turnaround.
Day over day
-- by Randy
I got in to the hospital later than I planned because there is 6 inches of snow on the ground. I got enough shoveled so that there is so there it is clear around the door so if someone needs to see the dogs they don't have a whole days worth of snow to get through. It's going to take me a couple days to get the drive way done at this rate. Of course it is a pretty snow and probably wont last the week. I only wish it was next weekend.
When I did get to the hospital Holly's bed was elevate a bit she said they had her sitting The therapist wanted to do it yesterday but she was not up to it. She said it felt a bit "wild." She no longer has the finger tip oxygen/heart rate monitor on her finger so that's one less monitor, which is a small progress she still has the stomach tube so that they can remove stomach fluids because she had some nausea in April and with this incision they wanted to avoid any nausea. Also I don't think there is much in terms of peristalsis restarting so this just one other body function that has to be managed as Holly's body re-establishes its self regulation or homeostasis.
About the time I got there a tray of food, really various clear liquids, showed up. Holly hadn't ordered it and tried to send is back but the order was for her. So she elevated the bed a bit more and tried some broth. She did well negotiating the spoon around the stomach tube. Then she put the bed back and went to sleep.
So just as the snow slowly piles up over the day Holly incrementally makes small improvements back to health.
It is amazing how visible the progress is from day to day. Yesterday she was zonked out consistently . Today she is eating a little and a little less zonked.
I got in to the hospital later than I planned because there is 6 inches of snow on the ground. I got enough shoveled so that there is so there it is clear around the door so if someone needs to see the dogs they don't have a whole days worth of snow to get through. It's going to take me a couple days to get the drive way done at this rate. Of course it is a pretty snow and probably wont last the week. I only wish it was next weekend.
When I did get to the hospital Holly's bed was elevate a bit she said they had her sitting The therapist wanted to do it yesterday but she was not up to it. She said it felt a bit "wild." She no longer has the finger tip oxygen/heart rate monitor on her finger so that's one less monitor, which is a small progress she still has the stomach tube so that they can remove stomach fluids because she had some nausea in April and with this incision they wanted to avoid any nausea. Also I don't think there is much in terms of peristalsis restarting so this just one other body function that has to be managed as Holly's body re-establishes its self regulation or homeostasis.
About the time I got there a tray of food, really various clear liquids, showed up. Holly hadn't ordered it and tried to send is back but the order was for her. So she elevated the bed a bit more and tried some broth. She did well negotiating the spoon around the stomach tube. Then she put the bed back and went to sleep.
So just as the snow slowly piles up over the day Holly incrementally makes small improvements back to health.
It is amazing how visible the progress is from day to day. Yesterday she was zonked out consistently . Today she is eating a little and a little less zonked.
Friday, November 12, 2010
Very Little Joke
I can't tell this to Holly as she will laugh but imagine a Character from "Mr. Rogers' Neighborhood" . . . Mr. McFeelwell saying "speedy recovery, Miss Holly Speedy recovery."
Thanks for indulging me.
Thanks for indulging me.
Its a quiet day
As one would expect. Holly had a tough night so today she claims that she's not real exciting. Since I'm not here to be entertained I don't mind. Today her pain is lessened and she is sleeping pretty consistently.
I look around the room at all the monitors and tubes and it is obviously early days in recovery. Last spring each day brought fewer tubes and fewer readouts on the monitors. So we will just wait and I will observe the changes in the room as Holly grows stronger under care.
I look around the room at all the monitors and tubes and it is obviously early days in recovery. Last spring each day brought fewer tubes and fewer readouts on the monitors. So we will just wait and I will observe the changes in the room as Holly grows stronger under care.
A couple interesting changes
Randy:
We have noticed a couple of changes in pre-op procedures even in the six months since the transplant. I noticed the first change right away when I went back to spend time with Holly before the operation. She was on the gurney with a white hose attached to her gown and the other end was attached to a heater that looked sounded like an old "soft bonnet" hair dryer, not the bullet shaped missile tops but the bag-over-the-curler type women used to use before blow dryers.
The device is called "Bair Paws" and they were using because studies indicate that warming patients before surgery reduces the risk of infection. It probably also helps them relax and stay comfortable.
The second change is a bar code on the wrist band. This the square type code that advertisers and the post office are using. There are still a lot of questions about name and birth date which may be about confirmation and assessment. It was interesting that at least at one juncture the code was read by a device to register the presence of the band electronically. This is the second day I have noticed that they are using the bar code when collecting additional information. So it seems to be a part of the routine information control.
Holly introduced her own innovation.We were talking and she said "Give me some of that tape." so I gave her some tape from the cart in the prep room and she taped a note to her gown. Every nurse and anesthesiologist said oh a note and Holly let them know that it is reminder for the pathologist to take pictures of, measure and weigh her formerly native kidneys. The last took particular delight. "You've got a point, and you want to get it across."
------Holly, later------
Randy tells me I looked like I'd been through plenty of trauma when they brought me to my room after surgery. Sweating, pale, breathing hard around that stomach tube.
Coming out of everything, I had probably the most physically miserable 48 hours of my life. This time, I had the urinary catheter, an IV, a stomach-emptying tube going into my nose and down my throat, and oxygen. From there, I also had some trouble with pain control -- my own trouble, not the U's. I again had a little pushbutton "pain pump" in my hand to release the IV painkiller, but was either fast asleep or too woozy to give myself enough. So. Pain, dry mouth, dry throat, occasional choking feeling when not getting enough oxygen.
The "last dawdler in the store" thing played against me a little -- on Thursday night, my nurse really, really wanted me to "sit on the side of the bed and dangle." The op had taken some 3-4 hours, probably getting me out of post-op around 6 p.m. And here I was being asked in some hybrid toddler-medical lingo "Do you want to dangle?"
I made clear, I thought, kindly and firmly that no, I had no intentions of dangling anything that evening.
Then, Randy says, I was told I'd be getting blood-pressure lowering meds.
Prior to the operation, my mother said several times on the phone, "I'm glad you're able to stick up for yourself," which I think was her permission not to be the "nice girl" she had fully intended to raise.Permission or not, a certain amount of spirit did serve me well.
Told the name of the med I'd be getting, I said "Why?"
"It's a blood-pressure drug."
"But why?"
"For your blood pressure."
"I'm not asking what it is, I'm asking why you want to give it to me."
It turned out it was because my upper number was all of 1 digit higher than it should be. (And she was not kidding.)
I refused this help, too, even more firmly. When it's an existential struggle just to stay awake for someone to take your vitals, it shouldn't be too surprising if your BP is up. (We may also have been having a dangling debate while the nurse was taking my blood pressure.)
After two more offers to help me sit on the side of the bed, the nurse grumbled, "Well, it's my job to encourage you to sit up and move, and so I'll keep on doing it."
Still, I didn't hear another thing about "dangling" that day.
We have noticed a couple of changes in pre-op procedures even in the six months since the transplant. I noticed the first change right away when I went back to spend time with Holly before the operation. She was on the gurney with a white hose attached to her gown and the other end was attached to a heater that looked sounded like an old "soft bonnet" hair dryer, not the bullet shaped missile tops but the bag-over-the-curler type women used to use before blow dryers.
The device is called "Bair Paws" and they were using because studies indicate that warming patients before surgery reduces the risk of infection. It probably also helps them relax and stay comfortable.
The second change is a bar code on the wrist band. This the square type code that advertisers and the post office are using. There are still a lot of questions about name and birth date which may be about confirmation and assessment. It was interesting that at least at one juncture the code was read by a device to register the presence of the band electronically. This is the second day I have noticed that they are using the bar code when collecting additional information. So it seems to be a part of the routine information control.
Holly introduced her own innovation.We were talking and she said "Give me some of that tape." so I gave her some tape from the cart in the prep room and she taped a note to her gown. Every nurse and anesthesiologist said oh a note and Holly let them know that it is reminder for the pathologist to take pictures of, measure and weigh her formerly native kidneys. The last took particular delight. "You've got a point, and you want to get it across."
------Holly, later------
Randy tells me I looked like I'd been through plenty of trauma when they brought me to my room after surgery. Sweating, pale, breathing hard around that stomach tube.
Coming out of everything, I had probably the most physically miserable 48 hours of my life. This time, I had the urinary catheter, an IV, a stomach-emptying tube going into my nose and down my throat, and oxygen. From there, I also had some trouble with pain control -- my own trouble, not the U's. I again had a little pushbutton "pain pump" in my hand to release the IV painkiller, but was either fast asleep or too woozy to give myself enough. So. Pain, dry mouth, dry throat, occasional choking feeling when not getting enough oxygen.
The "last dawdler in the store" thing played against me a little -- on Thursday night, my nurse really, really wanted me to "sit on the side of the bed and dangle." The op had taken some 3-4 hours, probably getting me out of post-op around 6 p.m. And here I was being asked in some hybrid toddler-medical lingo "Do you want to dangle?"
I made clear, I thought, kindly and firmly that no, I had no intentions of dangling anything that evening.
Then, Randy says, I was told I'd be getting blood-pressure lowering meds.
Prior to the operation, my mother said several times on the phone, "I'm glad you're able to stick up for yourself," which I think was her permission not to be the "nice girl" she had fully intended to raise.Permission or not, a certain amount of spirit did serve me well.
Told the name of the med I'd be getting, I said "Why?"
"It's a blood-pressure drug."
"But why?"
"For your blood pressure."
"I'm not asking what it is, I'm asking why you want to give it to me."
It turned out it was because my upper number was all of 1 digit higher than it should be. (And she was not kidding.)
I refused this help, too, even more firmly. When it's an existential struggle just to stay awake for someone to take your vitals, it shouldn't be too surprising if your BP is up. (We may also have been having a dangling debate while the nurse was taking my blood pressure.)
After two more offers to help me sit on the side of the bed, the nurse grumbled, "Well, it's my job to encourage you to sit up and move, and so I'll keep on doing it."
Still, I didn't hear another thing about "dangling" that day.
Thursday, November 11, 2010
New post
Holly officially is not able to blog today so it's my turn.
Holly had her native kidneys removed today. She went into surgery at 12:50 and she should be in recovery soon. The surgeon was pleased with the "boring" surgery.
Just to start catching everybody up, after her transplant Holly has been enjoying life and having a great summer. She has been gardening, with gloves and a big hat, mostly. (Skin cancer is now one of our threats, as immunosuppression makes you less able to fight that, too.) Grooming dogs, painting a new bedstead and doing other projects as well as work have kept her happily busy. The transplanted kidney issues resolved and she recovered from the surgical restrictions. As the summer progressed she acclimated to her medications and her new routine associated with this new life.
It has been the plan to remove the native kidneys as soon as Holly was recovered enough handle another surgery. Her native kidneys were enlarged by the cysts caused by the PKD. She was experiencing quite a bit of pain from them and they were affecting her appearance and causing other complications. We will have more details about the native kidneys as these posts continue.
My admiration and gratitude to Dr. Dunn and the transplant team at the University of Minnesota Medical center. Thanks to Cheryl for stopping by to pass the time this afternoon. Thanks to Bethel University and the ITS Help Desk team for picking up the slack while I'm gone to take care of Holly. My gratitude is not just for the events around this particular surgery but for the improvement in Holly's life since this spring.
I will have a few days here to go into more details.
Randy
--------Holly, later--------
I actually slept most of the night before the operation, thanks mainly to a double-headed rush to get things done at work and at home to prepare for weeks off. Plus, I think I'd been getting gradually more depressed as the weeks got closer. Delaying the operation due to a bad bladder infection and ER visit in late October didn't help much.
I went into this operation with a dread I've hardly felt since I was afraid to leave home to go to camp. Figuring between a "We'll just hook up this organ with the bladder and a blood supply" operation and "We'll slice you open from breastbone to below your navel, take out half the organs you can name in your abdomen, and juggle the rest for awhile before closing up," I banked on being in at least 60 percent more pain than I'd been during the transplant.
In a rough calculation of incision inches vs. weeks off, I came up with 7" TX and 3 weeks off, and prepared everyone at the newspaper office for a 9-10" incision with the removal and at least a month off.
What did help was taking the Tuesday prior to surgery off. I was able to finish painting the bedstead that would help this recovery -- wouldn't be crawling off a mattress on the floor. I then took the dogs outside -- this was a sunny day in the mid-60s -- and trimmed their coats and claws and played with them barefoot on the front lawn. Something about those perfect afternoon hours reminded me this was why I was going through surgery -- to have more days like this.
Surgery was scheduled for noon Nov. 11. I never knew surgeons, who usually want you to check in at 4 a.m., even worked that late.
My surgeon checked in and said she probably wouldn't have to take my spleen along with all the other organs -- that's a huge relief, as your spleen is something of a last-ditch defense against infection. She also predicted cheerfully "When these are out you'll look so svelte!" The stinker. She knew this was good news all around the whole time.
As Randy waited in the little kiosk with me and people occasionally popped in to hook up IVs, quiz me about anesthesia or confirm what was being removed, I thought of something. "I probably won't feel like going to Cheryl's parents' for Thanksgiving, but I bet you could go on your own," I suggested.
"Oh no. I'm not going to that," he shot back. Randy's the gregarious half of our couple and he really likes the whole Jahnke family, so this instant rejection surprised me. I looked at him in bemusement.
"I need to be home," he told me sternly. "You need a lot of supervision."
The idea that, like a puppy, you can't leave me home unsupervised for a couple hours cracked us both up. And that helped, too, as the pre-op area emptied of both patients and staff.
I was certainly the last customer in the shop and they seemed quite ready to get rid of me! This time, as they wheeled me through the halls (I'd insisted on being awake this time, so as not to miss so much) Randy didn't have any time to get emotional at the "goodbye corner." They whisked me right through it, and I barely had time to grab his hand for a split second.
About all I was able to observe in the OR was that there were, as in an old movie, mint-green glazed tiles on the walls. Also, I thought, the giant light hanging over me had better be well-secured. "The chandelier! The chandelier!" About this time, the group decided they'd had enough of the awake Holly, and I agreed to a push of the "relaxing shot" into my IV. I had time, as my ears began to go tinny, to announce, "It's working!" although I'm sure a few seconds later they could have seen that for themselves.
Holly had her native kidneys removed today. She went into surgery at 12:50 and she should be in recovery soon. The surgeon was pleased with the "boring" surgery.
Just to start catching everybody up, after her transplant Holly has been enjoying life and having a great summer. She has been gardening, with gloves and a big hat, mostly. (Skin cancer is now one of our threats, as immunosuppression makes you less able to fight that, too.) Grooming dogs, painting a new bedstead and doing other projects as well as work have kept her happily busy. The transplanted kidney issues resolved and she recovered from the surgical restrictions. As the summer progressed she acclimated to her medications and her new routine associated with this new life.
It has been the plan to remove the native kidneys as soon as Holly was recovered enough handle another surgery. Her native kidneys were enlarged by the cysts caused by the PKD. She was experiencing quite a bit of pain from them and they were affecting her appearance and causing other complications. We will have more details about the native kidneys as these posts continue.
My admiration and gratitude to Dr. Dunn and the transplant team at the University of Minnesota Medical center. Thanks to Cheryl for stopping by to pass the time this afternoon. Thanks to Bethel University and the ITS Help Desk team for picking up the slack while I'm gone to take care of Holly. My gratitude is not just for the events around this particular surgery but for the improvement in Holly's life since this spring.
I will have a few days here to go into more details.
Randy
--------Holly, later--------
I actually slept most of the night before the operation, thanks mainly to a double-headed rush to get things done at work and at home to prepare for weeks off. Plus, I think I'd been getting gradually more depressed as the weeks got closer. Delaying the operation due to a bad bladder infection and ER visit in late October didn't help much.
I went into this operation with a dread I've hardly felt since I was afraid to leave home to go to camp. Figuring between a "We'll just hook up this organ with the bladder and a blood supply" operation and "We'll slice you open from breastbone to below your navel, take out half the organs you can name in your abdomen, and juggle the rest for awhile before closing up," I banked on being in at least 60 percent more pain than I'd been during the transplant.
In a rough calculation of incision inches vs. weeks off, I came up with 7" TX and 3 weeks off, and prepared everyone at the newspaper office for a 9-10" incision with the removal and at least a month off.
What did help was taking the Tuesday prior to surgery off. I was able to finish painting the bedstead that would help this recovery -- wouldn't be crawling off a mattress on the floor. I then took the dogs outside -- this was a sunny day in the mid-60s -- and trimmed their coats and claws and played with them barefoot on the front lawn. Something about those perfect afternoon hours reminded me this was why I was going through surgery -- to have more days like this.
Surgery was scheduled for noon Nov. 11. I never knew surgeons, who usually want you to check in at 4 a.m., even worked that late.
My surgeon checked in and said she probably wouldn't have to take my spleen along with all the other organs -- that's a huge relief, as your spleen is something of a last-ditch defense against infection. She also predicted cheerfully "When these are out you'll look so svelte!" The stinker. She knew this was good news all around the whole time.
As Randy waited in the little kiosk with me and people occasionally popped in to hook up IVs, quiz me about anesthesia or confirm what was being removed, I thought of something. "I probably won't feel like going to Cheryl's parents' for Thanksgiving, but I bet you could go on your own," I suggested.
"Oh no. I'm not going to that," he shot back. Randy's the gregarious half of our couple and he really likes the whole Jahnke family, so this instant rejection surprised me. I looked at him in bemusement.
"I need to be home," he told me sternly. "You need a lot of supervision."
The idea that, like a puppy, you can't leave me home unsupervised for a couple hours cracked us both up. And that helped, too, as the pre-op area emptied of both patients and staff.
I was certainly the last customer in the shop and they seemed quite ready to get rid of me! This time, as they wheeled me through the halls (I'd insisted on being awake this time, so as not to miss so much) Randy didn't have any time to get emotional at the "goodbye corner." They whisked me right through it, and I barely had time to grab his hand for a split second.
About all I was able to observe in the OR was that there were, as in an old movie, mint-green glazed tiles on the walls. Also, I thought, the giant light hanging over me had better be well-secured. "The chandelier! The chandelier!" About this time, the group decided they'd had enough of the awake Holly, and I agreed to a push of the "relaxing shot" into my IV. I had time, as my ears began to go tinny, to announce, "It's working!" although I'm sure a few seconds later they could have seen that for themselves.
Monday, September 20, 2010
Another view of 'the twins'
Ever since I first met my surgeon and informed her blithely "I'd also like to have my native kidneys taken out," we seem to have been on either side of a line in the sand, protocol-wise.
I'd already revealed myself as a nephrectomy advocate, so she had to take on the role of dissuading me from this course. If only 1 out of 20 patients has a nephrectomy -- and my pain hadn't begun yet -- it was unlikely she'd be doing one on me.
Thus, through poking and prodding my abdomen (which, from ribs down to hipbones at any longitude bounces right back like a couple of leather bags full of water) she determined my kidneys are only "moderately large," and has said several times "Your kidneys really aren't that large. I don't know why they'd be causing you all this trouble."
With the onset of pain and the MRI results, she agreed to remove them, but still didn't sound particularly convinced.
However, at my pre-op meeting, Randy and I were briefed by a specialist we'd never met before. My surgeon runs late on a regular basis, between operating, teaching, doing research, meeting with committees that do everything from hiring to reviewing transplant candidates, and last but not least keeping clinical appointments.
The new guy, with a pronouced Georgia accent, was catching up with my history on the computer, when he saw I had PKD. "Hey! Did you have any imaging done? I love looking at polycystic kidneys!"
I admitted I had an MRI somewhere, and he found it. "Wow! These are huge!" he enthused.
Startled by this new viewpoint but still tentative, Randy offered that we referred to them as "the twins."
"Oh, these are bigger than babies," the doc said. "I've sired babies, and these are bigger than that."
Not only was the horsy reference delightful, the confirmation of what I'd always thought was encouraging.
We then delved further into his Southern past. "You know rugby balls?" he asked. (We both nodded, even though we have only a sketchy idea of what a rugby game looks like, much less the ball.) "Well, these are the size of rugby balls," he said.
Looking up "regulation rugby ball" and converting centimeters to inches yields some startling statistics. All I can say is I'm ready for them to bounce on out of here.
I'd already revealed myself as a nephrectomy advocate, so she had to take on the role of dissuading me from this course. If only 1 out of 20 patients has a nephrectomy -- and my pain hadn't begun yet -- it was unlikely she'd be doing one on me.
Thus, through poking and prodding my abdomen (which, from ribs down to hipbones at any longitude bounces right back like a couple of leather bags full of water) she determined my kidneys are only "moderately large," and has said several times "Your kidneys really aren't that large. I don't know why they'd be causing you all this trouble."
With the onset of pain and the MRI results, she agreed to remove them, but still didn't sound particularly convinced.
However, at my pre-op meeting, Randy and I were briefed by a specialist we'd never met before. My surgeon runs late on a regular basis, between operating, teaching, doing research, meeting with committees that do everything from hiring to reviewing transplant candidates, and last but not least keeping clinical appointments.
The new guy, with a pronouced Georgia accent, was catching up with my history on the computer, when he saw I had PKD. "Hey! Did you have any imaging done? I love looking at polycystic kidneys!"
I admitted I had an MRI somewhere, and he found it. "Wow! These are huge!" he enthused.
Startled by this new viewpoint but still tentative, Randy offered that we referred to them as "the twins."
"Oh, these are bigger than babies," the doc said. "I've sired babies, and these are bigger than that."
Not only was the horsy reference delightful, the confirmation of what I'd always thought was encouraging.
We then delved further into his Southern past. "You know rugby balls?" he asked. (We both nodded, even though we have only a sketchy idea of what a rugby game looks like, much less the ball.) "Well, these are the size of rugby balls," he said.
Looking up "regulation rugby ball" and converting centimeters to inches yields some startling statistics. All I can say is I'm ready for them to bounce on out of here.
Thursday, September 2, 2010
The most unwelcome question
We were on vacation at my parents' cottage -- "heaven," as people who've been there call it -- and were escaping from a noonday June sun on the beach by driving to the nearest town to shop.
The cottage is a place where outside worries just don't penetrate. We have no daily papers and no TV. One summer, we noticed the neighbor's flag was at half-staff one morning, and thought, "Oh, that's too bad -- the World War II veteran who lives there must have died." But when we went into town to post some mail, the Post Office flag was at half-staff, too. When I asked the woman behind the counter why, she looked at me like I'd fallen off Mars and snapped "President Reagan died!"
So, with only trivial issues on the agenda, such as "Will it be sunny again tomorrow?" and "What should we have for dinner tonight?" I was miles away from thinking about my health problems. I was completely unprepared when a woman smiled sympathetically at me and said "I can't imagine what it would be like to be pregnant in this heat."
She seemed kind, and I had been in a sunny mood until then, so I just smiled back and said "I'm not pregnant," and let the shock and the oh-I'm-so-sorrys fall where they might.
Thankfully, back home in Minnesota, I'm generally surrounded by people who, as Garrison Keillor has portrayed them, are almost too cautious to pry into how you take your coffee. That's just as I like it in any case -- I just don't think whether or not I have a passenger on board is a passing stranger's business.
I can certainly appreciate the fact I don't look "normal". Out of curiosity, I recently tried to calculate my pants size on a store's Web site. Thighs: size 10 or 12. Hips: size 10 or 12. Waist: size 24. Even at that, I had to do some extrapolation to arrive at the waist size -- it was literally off the chart.
So, yes, I am bizarrely shaped, suggesting pregnancy, a serious beer addiction or, of course, being one of the roughly 300,000 women in the U.S. with PKD.
I've run into such well-meaning strangers a few times before, as have others. One woman told me she had to start wearing maternity clothes at age 48. And, at that, her primary physician's nurse exclaimed excitedly on seeing her, "Oh! How many months are you pregnant?"
I'm sorry, really? At 48? You're holding her medical chart with "PKD" all over it in your hand?
For me, it's embarrassing, humiliating and maddening in varied proportions. My first thoughts are of snapping back in a way that would prevent this person from asking that question ever again.
But I don't. Counting blessings again, I'm fortunate in not wanting to have children. There are women out there -- apparently in less-introverted regions -- who have PKD, huge kidneys and risk pregnancy reminiscences and belly rubs every time they leave the house. "I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes of infertility treatments," one wrote on a forum. "Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due?" I remember replying 'Never! I will never be due because I can't have kids!' and bursting into tears."
Are there many people left out there besides older, nosy relatives who haven't heard "Don't ask a woman if she's pregnant unless you actually see another human being coming out of her"? (May I add: in that rare case, you might as well save your breath for calling 911.)
My husband says it's about people wanting to share the experience by proxy. Whatever the motivation, these thrill-seekers should be warned that there are a few of us ringers out here who, depending on the day, may share more than the experience you expect with you.
The cottage is a place where outside worries just don't penetrate. We have no daily papers and no TV. One summer, we noticed the neighbor's flag was at half-staff one morning, and thought, "Oh, that's too bad -- the World War II veteran who lives there must have died." But when we went into town to post some mail, the Post Office flag was at half-staff, too. When I asked the woman behind the counter why, she looked at me like I'd fallen off Mars and snapped "President Reagan died!"
So, with only trivial issues on the agenda, such as "Will it be sunny again tomorrow?" and "What should we have for dinner tonight?" I was miles away from thinking about my health problems. I was completely unprepared when a woman smiled sympathetically at me and said "I can't imagine what it would be like to be pregnant in this heat."
She seemed kind, and I had been in a sunny mood until then, so I just smiled back and said "I'm not pregnant," and let the shock and the oh-I'm-so-sorrys fall where they might.
Thankfully, back home in Minnesota, I'm generally surrounded by people who, as Garrison Keillor has portrayed them, are almost too cautious to pry into how you take your coffee. That's just as I like it in any case -- I just don't think whether or not I have a passenger on board is a passing stranger's business.
I can certainly appreciate the fact I don't look "normal". Out of curiosity, I recently tried to calculate my pants size on a store's Web site. Thighs: size 10 or 12. Hips: size 10 or 12. Waist: size 24. Even at that, I had to do some extrapolation to arrive at the waist size -- it was literally off the chart.
So, yes, I am bizarrely shaped, suggesting pregnancy, a serious beer addiction or, of course, being one of the roughly 300,000 women in the U.S. with PKD.
I've run into such well-meaning strangers a few times before, as have others. One woman told me she had to start wearing maternity clothes at age 48. And, at that, her primary physician's nurse exclaimed excitedly on seeing her, "Oh! How many months are you pregnant?"
I'm sorry, really? At 48? You're holding her medical chart with "PKD" all over it in your hand?
For me, it's embarrassing, humiliating and maddening in varied proportions. My first thoughts are of snapping back in a way that would prevent this person from asking that question ever again.
But I don't. Counting blessings again, I'm fortunate in not wanting to have children. There are women out there -- apparently in less-introverted regions -- who have PKD, huge kidneys and risk pregnancy reminiscences and belly rubs every time they leave the house. "I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes of infertility treatments," one wrote on a forum. "Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due?" I remember replying 'Never! I will never be due because I can't have kids!' and bursting into tears."
Are there many people left out there besides older, nosy relatives who haven't heard "Don't ask a woman if she's pregnant unless you actually see another human being coming out of her"? (May I add: in that rare case, you might as well save your breath for calling 911.)
My husband says it's about people wanting to share the experience by proxy. Whatever the motivation, these thrill-seekers should be warned that there are a few of us ringers out here who, depending on the day, may share more than the experience you expect with you.
Saturday, August 28, 2010
They're real, and they're SPECTACULAR
At right, my MRI just below my waist. The white disc in the center is my spine, where the main cord is splitting into the separate nerves of the equine caudix (In Latin, literally, 'horsetail'.) The dark disc above it is a spinal disc. Below the vertebra is muscle (looks like meat). And all the rest is kidneys, with all those cysts showing. Consider what formed each cyst was meant to be a tiny tubule used to filter fluids. . . it's a truly bizarre genetic deviation. Those who recall me as a 120-pound collegiate will be thinking "Huh?" Back then I boasted the figure of your average 13-year-old Little League (OK, maybe of a 15-year-old ringer from Central America.)
That's what often happens with polycystic kidneys -- they keep growing cysts on top of cysts despite the fact none of it is usable tissue.
So, the average adult's kidney is 4-5 inches long, 2-3 inches wide and an inch and a half thick. (Think an average computer mouse.)
According to CT scans and MRIs, mine are -- each -- nearly a foot long and 5-6 inches across in any dimension. They extend from a point behind my lowest rib way down into my pelvis. They inhibit my breathing when I'm doing anything that involves bending, making everything from landscaping to dog training to just tidying up the house doubly exhausting. They bulge into my stomach, and unless I'm very careful about what I eat when, I end up throwing up doing that aforementioned landscaping. There's just not room in there for, say, a granola bar, half a can of pop and those lousy kidneys.
However, I faced an equally-determined "let's rule out everything else" attitude from my surgeon -- which is perfectly reasonable, since she'd be taking my life in her hands with a huge open incision in my abdomen.
Although some diseased kidneys can be removed by laparoscopy, through tiny holes, mine would have to come out in a procedure something like the longest 1950s C-section you've ever seen. In fact, it would be such a big deal they'd schedule a couple of "While we're in there" removals along with it -- gall bladder and appendix -- just to take advantage of the opening. Oh, and they might have to take out my spleen as well -- the top of the kidney may extend so far up it compromises it.
Basically, my impression is I'd be gutted like a fish, and after removing everything extraneous, they'd put back in the stuff that wasn't slated to go.
Finally, I arrived for a visit on a day when the pain was particularly bad. She walked into the exam room to find me in tears, standing next to the examining table with my left leg up on it, bent at the knee. It always felt like if I could get more "room" in my back I'd have less flank pain, so I spent a certain amount of my waking hours either with a knee pulled up to my chest, or, if I were in a store or talking to someone while standing at work, with one knee held up like a particularly clumsy stork.
Thank heavens Randy was at the consultation that followed; his near-master's degree in communication helped with phrases like "I think what Holly is trying to say is" and "I think what the doctor is concerned about is" which helped us lurch to an agreeable conclusion. I got the first fragment of hope I'd seen in this effort as she left the office and said over her shoulder, "I just have to make sure it's the kidneys that are causing you all the trouble. I love to do surgery; if that were the only consideration I'd have you in tomorrow."
You better believe I'd have showed up "tomorrow" if I could have!
The surgeon set up an appointment for an orthopedic surgeon to look at my spine as a last-ditch effort to make sure that wasn't the problem. I was perfectly frank with him about why I was there and what I thought was the problem.
"Well, let's look at your MRI results," he said. "I haven't seen them yet, so we'll be seeing them for the first time together."
"Well, I'm no kidney doctor, but I can tell there's something really wrong with your kidneys," he said. "As far as I can see you have as healthy a spine as any 42-year-old. I think your problem is these --" he paused, trying to think of a tactful way to phrase it, then gave up "-- these gigantic kidneys."
So there we were, thank goodness. A ticket I could cash in to get away from Vicodinland. Six months after transplant -- say, in October or November -- as long as I'm healing normally, I should be able to have these burdens out.
It took such an emotional struggle to get to this point, during which my pre-transplant coordinator would write me things like "Your kidneys are your friends." Nope; they're unwanted, messy, painful squatters and I'll be glad to kick them out at the soonest opportunity. I feel sorry for them, having tried to do their jobs for so long with such difficulty, but it's an unspeakable relief to have them on the way out.
Friday, June 4, 2010
Pain-free Friday
Today was the first day I didn't have any muscular pain under my incision! Sitting down, standing up -- everything was just fine! Just about the five-week mark exactly.
I'd begun to worry -- after all, I'd done things like lift a 40-pound dog onto a grooming table at about the 2-week mark. And Cheryl had said recently she'd been pain-free for quite some time.
But on Memorial Day, she mowed her lawn and said whoops-- pain! So maybe it has to do with exertion.
Still not going to sit around.
Holly
I'd begun to worry -- after all, I'd done things like lift a 40-pound dog onto a grooming table at about the 2-week mark. And Cheryl had said recently she'd been pain-free for quite some time.
But on Memorial Day, she mowed her lawn and said whoops-- pain! So maybe it has to do with exertion.
Still not going to sit around.
Holly
Thursday, June 3, 2010
It's a med, med, med, med world
I realize I've referred many times to the immunosuppressants and other medications I'm on, but haven't detailed them.
Here's the rundown of what I was sent home with, with quantities in numbers of pills, not milligrams:
Morning
I've since been taken off the antiviral, and was thankful to leave joint pain behind.
The most challenging side effect has been the inability to sleep -- thanks mainly to the immunosuppressants. I'm talking lying awake, tossing and turning, until 5 in the morning. I finally had to ask for a sleeping pill to be prescribed. Recovery just wasn't going to take place otherwise.
I've had several of the other side effects -- such as anything solid I eat going right through me. But the folks at the U don't want to cut down on anything else just yet, and I'm not complaining.
Ten or 20 years ago, I'd have been put on Prednisone, with its attendant, nearly-inescapable weight gain. My father remembers a young guy in his cohort who came in looking like a bodybuilder but after a year with his transplant was well over 300 pounds. Prednisone deposits fat in your face, in your belly, on the back of your neck and shoulders, and as an even more enjoyable side effect, "increases appetite."
My father's experience with it is also that it thins skin -- to the point that his was like tissue paper for years, and the lightest brush of the back of his hand against a branch or table edge would peel back inches of skin, leaving him bleeding profusely and opening another site for infection. It sapped him of his muscle mass, and he's torn both biceps from their moorings during those Prednisone years.
He's since been taken off it -- some combination of being elderly and having his transplant for so long may have made it easier to suppress his immune system without it -- but he still carries long-term effects.
So hearing I wouldn't be put on Prednisone was such a relief to me. The rest of the stuff I can live with.
Here's the rundown of what I was sent home with, with quantities in numbers of pills, not milligrams:
Morning
- Immunosuppressant 1: 4 tablets
- Immunosuppressant 2: 3 tablets
- Anti-bacterial: 1 tablet
- Anti-viral: 1 tablet
- Blood-pressure control: 1 tablet
- Calcium: 1 tablet
- Pro-digestive (to help keep pills from eating up my stomach): 1 tablet
- Troche to keep from getting thrush from antibacterial: 1 tablet
- Immunosuppressant 1: 4 tablets
- Immunosuppressant 2: 3 tablets
- Cholesterol control: 1 tablet
- Troche: 1 tablet
- Immunosuppressant 1: tremor, constipation, diarrhea, headache, anxiety, trouble
- sleeping, nausea
- Immunosuppressant 2: joint pain, constipation, diarrhea, headache, anxiety,
- trouble sleeping, nausea
- Antibacterial: diarrhea, nausea
- Antiviral: constipation, joint pain, diarrhea, headache, trouble sleeping, nausea
- Blood-pressure control: swelling, dizziness, palpitations, headache, nausea
- Cholesterol control: abdominal pain, diarrhea, indigestion, general weakness
- Pro-digestive: constipation, diarrhea, rash, headache, nausea
I've since been taken off the antiviral, and was thankful to leave joint pain behind.
The most challenging side effect has been the inability to sleep -- thanks mainly to the immunosuppressants. I'm talking lying awake, tossing and turning, until 5 in the morning. I finally had to ask for a sleeping pill to be prescribed. Recovery just wasn't going to take place otherwise.
I've had several of the other side effects -- such as anything solid I eat going right through me. But the folks at the U don't want to cut down on anything else just yet, and I'm not complaining.
Ten or 20 years ago, I'd have been put on Prednisone, with its attendant, nearly-inescapable weight gain. My father remembers a young guy in his cohort who came in looking like a bodybuilder but after a year with his transplant was well over 300 pounds. Prednisone deposits fat in your face, in your belly, on the back of your neck and shoulders, and as an even more enjoyable side effect, "increases appetite."
My father's experience with it is also that it thins skin -- to the point that his was like tissue paper for years, and the lightest brush of the back of his hand against a branch or table edge would peel back inches of skin, leaving him bleeding profusely and opening another site for infection. It sapped him of his muscle mass, and he's torn both biceps from their moorings during those Prednisone years.
He's since been taken off it -- some combination of being elderly and having his transplant for so long may have made it easier to suppress his immune system without it -- but he still carries long-term effects.
So hearing I wouldn't be put on Prednisone was such a relief to me. The rest of the stuff I can live with.
Sunday, May 30, 2010
Recent Posts
It looks like there has been little or no activity on the blog of late, that is because Holly has been posting earlier observations. If you've been reading all along you may find that there are new posts that you may now be missing.
Also the new normal is becoming established. As the current drama changes from medical stories to the more mundane stories of dogs and gardening Holly is making sure that she is sharing more of her earlier experience. Going forward we will always have more contact with medical professionals and pharmaceuticals than we have in the past which is part of the new normal. Normal of course is the state of things happening as expected. Normal even a new normal is a good place to be.
---Randy
Also the new normal is becoming established. As the current drama changes from medical stories to the more mundane stories of dogs and gardening Holly is making sure that she is sharing more of her earlier experience. Going forward we will always have more contact with medical professionals and pharmaceuticals than we have in the past which is part of the new normal. Normal of course is the state of things happening as expected. Normal even a new normal is a good place to be.
---Randy
Saturday, May 15, 2010
Back in business
After a quick visit last Thursday, I'm back at work, thank goodness.
This is a place where I've worked with nearly 100 bright, funny, talented people coming in and out of the Editorial department alone.
A place where a receptionist and a typist refer to themselves as my "moms away from Mom."
A place that feels like a second home and a second family.
A place that, oddly enough for a business where you work with the news and constant change, has been an island of permanence and sanity for me during the toughest times.
People there have sent cards, e-mails and prayers -- even the war veteran who ever since returning "doesn't pray much anymore" said he'd make an exception for me.
Is it the slings and arrows of suburban politicians that bind us together? Is it the fact we'll assuredly "never get rich"?
Whatever it is, it feels so good to be back among my friends, pursuing creative work and doing something that matters.
This is a place where I've worked with nearly 100 bright, funny, talented people coming in and out of the Editorial department alone.
A place where a receptionist and a typist refer to themselves as my "moms away from Mom."
A place that feels like a second home and a second family.
A place that, oddly enough for a business where you work with the news and constant change, has been an island of permanence and sanity for me during the toughest times.
People there have sent cards, e-mails and prayers -- even the war veteran who ever since returning "doesn't pray much anymore" said he'd make an exception for me.
Is it the slings and arrows of suburban politicians that bind us together? Is it the fact we'll assuredly "never get rich"?
Whatever it is, it feels so good to be back among my friends, pursuing creative work and doing something that matters.
Thursday, May 13, 2010
Tender loving care
These are my home health aides!For the first week to 10 days, the only comfortable spot where I could sleep at night and nap during the day was the futon on our porch. Fortunately, I had plenty of companionship; Birch the English setter (on the ottoman) and Major the Irish setter (on the rug) are always ready for a nap and often precede us up to bed at night. That's the great thing about setters -- if you feel like running around the house or yard like a nut, they're there. (I once read "Ebullient" in a description of the setter personality!) If you want to take a nap, hey! That was their plan too!
Tammie Calvert, Birch's breeder, assured us, "My dogs were very aware when I came home from surgery that I wasn't feeling well, so they didn't jump on me... It was strange how they knew mom wasn't feeling well." And Major's always been a gentle giant -- even when he was a 99.3 pound youngster!
There's nothing like those dog sleepy waves breaking over you from a hand's pet away. . .
Wednesday, May 12, 2010
Another close one
My transplant coordinator called me yesterday to say she didn't like the look of my creatinine level from my Monday labs. Creatinine, a measure of garbage in the blood, normally ranges from .8 to 1.4. (Prior to transplant, mine was 3.5.) My Monday creatinine was up from levels of 1.2 to 1.24 to a sudden spike of 1.5.
So, I went down to the U for testing Tuesday afternoon and was back again this morning at 7.
One of the things I learned was that between the 18th and 22nd day post-transplant people have their highest risk of rejection. Apparently this is when the body has recovered enough from surgery to realize there's something new in the neighborhood.
So, I went down to the U for testing Tuesday afternoon and was back again this morning at 7.
One of the things I learned was that between the 18th and 22nd day post-transplant people have their highest risk of rejection. Apparently this is when the body has recovered enough from surgery to realize there's something new in the neighborhood.
For me, Monday was the 18th day.
So, after a nearly-sleepless night, there I was signing consent forms for a kidney biopsy. We still didn't have any lab results from my Tuesday visit -- "I think they broke the tube, is what happened," the coordinator said. While we waited for the morning labs to come back, they explained kidney biopsy, the only way to determine whether a kidney's being rejected.
Biopsy is a simple-enough procedure; they inject lidocaine in the skin above the kidneys' location and use ultrasound to make sure it's where it's supposed to be. They make a small incision -- so small it doesn't need stitches later. Then a contraption like a small gun shoots a hollow needle into the kidney, something like taking a core sample from a tree. They may need to make several passes to get enough tissue. And there's always a risk -- of launching bleeding, causing a hematoma, introducing infection. Worst, a cascade of events that doom the kidney.
The nephrology fellow who met me at T-1, followed me through the hospital and switched to "outpatient" the same time I did was shocked to see me back, as was the research coordinator who'd just met me 20 days ago.
So, after a nearly-sleepless night, there I was signing consent forms for a kidney biopsy. We still didn't have any lab results from my Tuesday visit -- "I think they broke the tube, is what happened," the coordinator said. While we waited for the morning labs to come back, they explained kidney biopsy, the only way to determine whether a kidney's being rejected.
Biopsy is a simple-enough procedure; they inject lidocaine in the skin above the kidneys' location and use ultrasound to make sure it's where it's supposed to be. They make a small incision -- so small it doesn't need stitches later. Then a contraption like a small gun shoots a hollow needle into the kidney, something like taking a core sample from a tree. They may need to make several passes to get enough tissue. And there's always a risk -- of launching bleeding, causing a hematoma, introducing infection. Worst, a cascade of events that doom the kidney.
The nephrology fellow who met me at T-1, followed me through the hospital and switched to "outpatient" the same time I did was shocked to see me back, as was the research coordinator who'd just met me 20 days ago.
The waiting wasn't helped by hearing the nephrology fellow talking to the woman in the bed next to me about the infusion she'd be getting after what sounded like days of interventions. "We're gonna give your kidney one last chance," she said.
Finally, the results came back -- thank God, 1.3. "You're off the hook," the nephrologist told me.
We may never know what spiked the creatinine -- damage to the kidney? an infection that was headed off? Everyone apologized for scaring me, but I wouldn't want them any less cautious.
After 3 months, your risk of rejection is lessened. After 6 months it goes down further, and after a year, everyone breathes a sigh of relief. By the time you get to where my dad is, you're probably going to take that kidney with you when you go.
At least my answers are nearby. My father has had to drive himself 6 hours to a kidney biopsy. That's way too long to spend thinking about what could happen.
On Tuesday afternoon, I fell apart quite a bit, but Randy was there to dry my tears. The U's pamphlet on transplantation says simply "You will have complications." I have kept telling myself that to be prepared, but knowing it and having it happen are two different things.
After the last day and a half -- and a lot of sleep to catch up -- it feels good to be off the hook.
Finally, the results came back -- thank God, 1.3. "You're off the hook," the nephrologist told me.
We may never know what spiked the creatinine -- damage to the kidney? an infection that was headed off? Everyone apologized for scaring me, but I wouldn't want them any less cautious.
After 3 months, your risk of rejection is lessened. After 6 months it goes down further, and after a year, everyone breathes a sigh of relief. By the time you get to where my dad is, you're probably going to take that kidney with you when you go.
At least my answers are nearby. My father has had to drive himself 6 hours to a kidney biopsy. That's way too long to spend thinking about what could happen.
On Tuesday afternoon, I fell apart quite a bit, but Randy was there to dry my tears. The U's pamphlet on transplantation says simply "You will have complications." I have kept telling myself that to be prepared, but knowing it and having it happen are two different things.
After the last day and a half -- and a lot of sleep to catch up -- it feels good to be off the hook.
Monday, May 10, 2010
The waitress' complaint
One of my parents' favorite U.P. stories comes from taking a couple to Elias Bros' Big Boy (about the only sit-down restaurant within striking distance of their cottage.)
They had a nice dinner and the waitress had stopped by their booth to ask about dessert when they suddenly realized she was looming over them, leaning heavily on their table with both hands. "I'm sorry," she said, "but my feet are killing me."
This is the "real" that often adds a unexpected, charming touch to interactions north of the bridge.
Well, I know how she feels, because my kidneys are killing me. Not Cheryl's; the two I had originally.
They can't kill me by neglect anymore, but they can and do cause pain. About at the point when I could have gone off painkillers to sleep because the pain from the transplant had lessened, they kicked in on a nightly basis. Thus: painkillers again.
That brings us to the second phase of all this -- the double nephrectomy I'll be getting -- if everything continues to go well -- 6 months from now. Just recovering from this, it's hard to contemplate something that will be, judging by incision length and disruption of my insides -- at least twice as traumatic.
But these monsters aren't giving up. I thought some years ago I might feel sorry for them when the end came -- after all, they did the best they could do for a long, long time, with their shrinking islands of healthy tissue unwittingly working against insurmountable odds. Judging by the U's tests, I was down well under 15 percent function -- stage V, the last stage of ESRD -- by the transplant.
So, once again, forward to another challenge.
They had a nice dinner and the waitress had stopped by their booth to ask about dessert when they suddenly realized she was looming over them, leaning heavily on their table with both hands. "I'm sorry," she said, "but my feet are killing me."
This is the "real" that often adds a unexpected, charming touch to interactions north of the bridge.
Well, I know how she feels, because my kidneys are killing me. Not Cheryl's; the two I had originally.
They can't kill me by neglect anymore, but they can and do cause pain. About at the point when I could have gone off painkillers to sleep because the pain from the transplant had lessened, they kicked in on a nightly basis. Thus: painkillers again.
That brings us to the second phase of all this -- the double nephrectomy I'll be getting -- if everything continues to go well -- 6 months from now. Just recovering from this, it's hard to contemplate something that will be, judging by incision length and disruption of my insides -- at least twice as traumatic.
But these monsters aren't giving up. I thought some years ago I might feel sorry for them when the end came -- after all, they did the best they could do for a long, long time, with their shrinking islands of healthy tissue unwittingly working against insurmountable odds. Judging by the U's tests, I was down well under 15 percent function -- stage V, the last stage of ESRD -- by the transplant.
So, once again, forward to another challenge.
Not so much like a "Rock Star"
Rock Stars are mercurial and given to rising and falling moods and output. Holly's new kidney is steady, dependable, performing consistently to standards in a context of change. Maybe more like what you would wish from an excellent accountant.
Tuesday, May 4, 2010
'Like a rock star'
The head nurse in the procedure room at the U's transplant clinic said, "Holly's going through this like a rock star."
Randy and I made some jokes about trashing hotel rooms and smashing guitars,but the staff insisted: they very rarely let someone go just a week after being released from the hospital to get their labs done at their home clinic. (Usually, they find medication levels and other measures are still rising and falling and people still need to come to the U for at least another week so they can supplement either immunosuppression or other infusions.)
That's something I've heard along the line, from transplant-floor nurses, from physical therapists insisting I slow down while "practice" walking and from nephrologists and surgeons, so I guess it must be true.
It makes me curious: is it my natural bullheadedness and determination to pass whatever "test" is given me? Is it the fact my father's experience has been such a success I simply didn't expect anything less? Is it the prayer pouring in from all over?
My mother laughed when I told her on the phone, "Maybe all those people at Bethel were right -- maybe Cheryl and I are sisters!" "It makes you wonder, doesn't it?" she chuckled.
Whatever the answer, all I know is gratitude -- an abiding peace combined with a fierce joy. Could I close my eyes right now and just send up a fervent prayer of thanksgiving? Yes. Could I go out and wheel and leap and dance on the driveway? Oh yeah!
Well, except for some lingering incision pain, that is. But, just today, that started itching as well as hurting, so. . . more progress!
Randy and I made some jokes about trashing hotel rooms and smashing guitars,but the staff insisted: they very rarely let someone go just a week after being released from the hospital to get their labs done at their home clinic. (Usually, they find medication levels and other measures are still rising and falling and people still need to come to the U for at least another week so they can supplement either immunosuppression or other infusions.)
That's something I've heard along the line, from transplant-floor nurses, from physical therapists insisting I slow down while "practice" walking and from nephrologists and surgeons, so I guess it must be true.
It makes me curious: is it my natural bullheadedness and determination to pass whatever "test" is given me? Is it the fact my father's experience has been such a success I simply didn't expect anything less? Is it the prayer pouring in from all over?
My mother laughed when I told her on the phone, "Maybe all those people at Bethel were right -- maybe Cheryl and I are sisters!" "It makes you wonder, doesn't it?" she chuckled.
Whatever the answer, all I know is gratitude -- an abiding peace combined with a fierce joy. Could I close my eyes right now and just send up a fervent prayer of thanksgiving? Yes. Could I go out and wheel and leap and dance on the driveway? Oh yeah!
Well, except for some lingering incision pain, that is. But, just today, that started itching as well as hurting, so. . . more progress!
More great tech
When I woke up from surgery, I was, as you often hear, "hooked up to tubes."The most annoying of these, of course: the urinary catheter. I heard a few theories on why it's used: "We don't want your bladder distending and undoing the attachment to your new kidney" and "We have to keep track of how much fluid is going through you." Regardless, it's uncomfortable, especially when the exit bag fills up or the tube gets kinked -- starting to fill the bladder despite all intentions. When that thing came out, it was a GOOD day.
I also had oxygen coming in through a tube with double prongs going into my nostrils. The main annoyance with this was that I'd been intubated during surgery, and so had a dry, swollen throat -- to the point it would feel like it was flapping "closed" at times. However, it took a while for me to keep my O2 rates up above 96 percent on my own. After they removed that tube, I could use a tip a nurse gave my dad -- thanks, Pete from Marquette! -- of keeping a wet washcloth over my nose and mouth to help moisten the air and ease the swelling.
Most unexpected: the "pressure pants" they put on my legs prior to surgery and kept on at least 2 days. These inflate every few minutes, first one leg, then the other, to help prevent blood clots. What does it say for my drugged, recovering state that I was basically able to sleep through all this?
But the best intervention ever, diagrammed above, the external jugular catheter. It entered about 2 inches below my ear and 2 above my clavicle, and extended for a good 5-6 inches down my jugular vein. As you can see, the end comes out quite close to the heart. With this, they could not only take blood samples without a needle stick and run multiple lines of IV fluids and drugs into me, they could also measure venous pressure.
If you've ever been hospitalized with the classic hand-located IV, you know how uncomfortable it is. Every movement affects it, whether you're trying to eat, shift positions in bed, get up or just fall asleep and have the misfortune of moving then. When sitting up on the edge of your bed is an existential challenge, the last thing you need is this thing hooked to your hand that you have to make sure doesn't get caught, tangled or kinked.
Though they put it in while I was asleep, they took it out while I was awake. It was stitched in -- the only place I did have stitches, and the nurse carefully snipped and pulled those out. She then told me to take a deep breath, let it out all the way and hold there -- and pulled the catheter out.
This is where I love professionals -- at the intersection between "This is just my highly-trained, demanding job" and the layman's "It's all way cool, isn't it?" Nurse Beth turned to Randy and said, "Do you want to see it? Are you OK with looking?" He rather reluctantly agreed. I, of course was anything but reluctant. Way cool, Beth!
I had what looked like a pretty little bullet hole in my neck for a few days, but that's healing up nicely. Even if I end up scarred, it was well worth it.
Monday, May 3, 2010
The new resident
This is what my kidney transplant looks like. See the light-colored "bagel" on the left side of the screen? It's a transplanted kidney, cradled in the "iliac fossa" of the right hipbone, probably in a safer spot than it had been originally!
This is something that's puzzled lots of people -- "So which kidney do they take out to put Cheryl's in?" I still have both my monsters -- the nephrology fellow was somewhat surprised to encounter them today where no one expects to find a kidney -- and this one has been tucked into my hip and is the third connection to my bladder. This is done mainly because the right iliac blood vessels are easiest to attach to the new kidney. I'm told my "native kidneys" will soon realize there's a new, avid worker in town and will gladly give up their fight. They'll still be alive, attached to their original blood vessels, but they'll probably stop producing urine.
Cheryl, thank goodness, also just had abdominal surgery, with about a 3-inch incision next to her navel. Years ago, removal of a donor's kidney involved an 8-inch incision from your back around your side -- LOTS of muscle involved -- and removal of a back rib! The only thing Cheryl had to worry about was whether she was subject to back pain -- once she was out on the operating table, the surgeons twisted her hip back and chest forward so that the kidney "popped" up as other organs pushed against it.
I found my incision is a little bigger than I expected when the nurse held her thumb and finger about 5 inches apart during one of my "T - 1" (the day before transplant) appointments.When I finally got to a mirror where I could see the whole thing, I found out it's at least 8 inches long. And you know what? There's not a stitch or a staple in it!
That's thanks to the brand-new world of surgical adhesives. Where do you find a glue that works on admittedly wet -- and constantly generating more wet -- surfaces?
I haven't been able to run into a surgeon at my lab appointments, but I suspect it's "BioGlue." It's a biologic (based on purified matter from cows) system where two materials are mixed together as they hit the wound, and knit it together within 2 minutes. Hmm. . . sounds like my father's favorite kinds of epoxy!
Thank heavens for advances in medicine.
image from www.medcyclopedia.com
Components of BioGlue:http://www.cryolife.com/products/bioglue-surgical-adhesive
New fields in surgical adhesives, including slugs (!) and mussels:
http://www.sciencedaily.com/releases/2009/05/090501200853.htm
http://www.sciencedaily.com/
Prayers from all over
This is my smallest prayer warrior, my niece Maggie.She's Randy's sister Karen's daughter and, her mom reports, has developed a real empathy over the last year.
"I sat down with her and explained what people's kidneys do for them and the fact yours weren't working well anymore," Karen told me. "And I told her that because people can get along with one rather than two, your friend Cheryl volunteered to give you one of her kidneys.
"She looked up at me and said 'I'm so glad Miss Cheryl could help Aunt Holly!'"
Maggie and her older brother Michael have been praying for Cheryl and me with their classrooms at school. Being the recipient of prayers from those direct minds, those pure hearts, is just awe-inspiring.
I'm not good at praying for myself, and am just so grateful to everyone who is keeping us in mind. People I knew as a girl in Crystal Falls, people my in-laws have known since college, people at Bethel and at Cheryl's and our church, people I've never met. The reassurance of knowing all of you out there are lifting us up goes beyond words.
And you know what? Cheryl may have given me a "great little kidney." I may be a pretty determined (or "bullheaded") patient. But my progress is astonishing health professionals across the board.
Your prayers are working!
Knitting up the raveled sleave of care
Thursday, April 29 was the first night I was able to sleep through the night, rather than moving from bed to couch to futon trying to get comfortable -- or wear myself out enough to override the steroids.
It's incredible how even after an hour or two of sleep I have noticeably less pain than when I lay down. Apparently a lot of things are being knit together during these times.
A handful of pills in the morning, a handful of pills in the evening, and things seem to be going OK.
I was back at the U only once for a "booster" IV of steroids to try to get my immunosuppression up to therapeutic levels, thank goodness. Life's a lot easier to deal with without steroids on board!
It's incredible how even after an hour or two of sleep I have noticeably less pain than when I lay down. Apparently a lot of things are being knit together during these times.
A handful of pills in the morning, a handful of pills in the evening, and things seem to be going OK.
I was back at the U only once for a "booster" IV of steroids to try to get my immunosuppression up to therapeutic levels, thank goodness. Life's a lot easier to deal with without steroids on board!
Saturday, May 1, 2010
That 'new kidney smell'
At my "T-1" appointment, the head procedure-room nurse explained what happens in a living-donor transplant:
"Cheryl will go into the operating room first, about 15 minutes before you. They'll start surgery on her to remove her kidney, then carry it in a tray over to the operating room where you are.
"Then they "bench" the kidney -- I don't know why they call it that -- but they take it out of the tray and run saline through it and clean off any excess tissue that might be on the outside.
"That part always makes me think of when you take your car to a really good mechanic and get it back all cleaned and detailed."
Here's to really good "mechanics" !
"Cheryl will go into the operating room first, about 15 minutes before you. They'll start surgery on her to remove her kidney, then carry it in a tray over to the operating room where you are.
"Then they "bench" the kidney -- I don't know why they call it that -- but they take it out of the tray and run saline through it and clean off any excess tissue that might be on the outside.
"That part always makes me think of when you take your car to a really good mechanic and get it back all cleaned and detailed."
Here's to really good "mechanics" !
Thursday, April 29, 2010
A week. . .
wasn't even what it took to notice the change.
Immediately, I didn't need to chew ice anymore.
Immediately, my blood pressure (which was 189/118 the last time I dared to go without drugs, some 15 years ago) dropped into normal ranges without medication.
Immediately, my mouth didn't taste like the bottom of a birdcage.
And save for a couple incision-jolting full-body cramps, my calcium level seems to be recovering -- no more cramps and twitches!
I haven't seen a change in energy yet -- recovering from surgery will do that to you -- but I'm sure it's to come.
Boy, am I glad it's not a week ago. A week ago tonight, I woke up in the step-down unit to see a rather damp Randy, who immediately got up to stand next to the bed and hold my hand. "It's OK, honey -- you should sit down," I told him. Finally convinced him to pull up a chair.
Two fabulous nurses, Jay and Lydia, came in and out of my field of vision to check vitals and refill icewater. There was pain, but there was also the security blanket of the self-administered pain pump. I really don't know if there's anything on the other end of that line but a quiet "beep," but at the time it seems like you're in control.
Going backward, I recall waking up in the recovery room and being wheeled into an elevator. . . being awake for a few moments in the operating room. . . and before that lying on a gurney in the pre-op suite with the anesthetist saying "We'll just give you something for anxiety here" as she depressed the plunger on a syringe. Although that's the last I remember before the operating room, Randy tells me I was awake after this: "You were really sweet when I got weepy saying goodbye to you in the hall." He doesn't think he would have reacted so dramatically if the anesthetist, a non-native English speaker, hadn't announced that this particular intersection was "the goodbye corner."
"I got mugged by my emotions a couple times," he told Cheryl the next day.
Cheryl's kidney is one of the faves of the U team this week, it seems -- "You've got a great little kidney there," my coordinator told me on the phone today. It apparently realized immediately it was doing the work of two. After a couple days of loading up on IV fluids, they began cutting me down -- and I was unable to keep up my fluid levels sufficiently. A few more IV bags and we seem to be reaching an equilibrium.
Cheryl's doing well -- we compare notes by phone daily and are enjoying having permission to take afternoon naps. And sometimes morning naps. And, in rare cases, evening.
It hasn't all been peaches and cream. I had two hellish nights in which I couldn't sleep due to the steroids. Picture yourself on two nights without sleep -- immediately after being discharged from the hospital. My eyes watered constantly from fatigue, although I lay in bed with every limb vibrating like a cell phone on mute.
I've diagnosed and treated my own nausea at 11 p.m. and I've finally figured out the only place I can sleep comfortably is on the futon on our three-season porch; thank goodness we didn't do this in February!
There've been a lot of desperate prayers sent up -- and answered.
George, our newsroom wag, wrote on the office card, "I hope you and your new kidney form a long-lasting relationship." He's closer than he may realize -- I'm in what they call the honeymoon period, when both the kidney and I are well-protected by high med levels. As these are tapered off to a balance I can better sustain over the long haul, there will be bumps in the road -- complications, illnesses, rejection episodes. So I have to pay close attention to everything from temperature to blood pressure to liquid intake, keeping track of small signals to prevent bigger problems.
But we're off to a good, good start.
Immediately, I didn't need to chew ice anymore.
Immediately, my blood pressure (which was 189/118 the last time I dared to go without drugs, some 15 years ago) dropped into normal ranges without medication.
Immediately, my mouth didn't taste like the bottom of a birdcage.
And save for a couple incision-jolting full-body cramps, my calcium level seems to be recovering -- no more cramps and twitches!
I haven't seen a change in energy yet -- recovering from surgery will do that to you -- but I'm sure it's to come.
Boy, am I glad it's not a week ago. A week ago tonight, I woke up in the step-down unit to see a rather damp Randy, who immediately got up to stand next to the bed and hold my hand. "It's OK, honey -- you should sit down," I told him. Finally convinced him to pull up a chair.
Two fabulous nurses, Jay and Lydia, came in and out of my field of vision to check vitals and refill icewater. There was pain, but there was also the security blanket of the self-administered pain pump. I really don't know if there's anything on the other end of that line but a quiet "beep," but at the time it seems like you're in control.
Going backward, I recall waking up in the recovery room and being wheeled into an elevator. . . being awake for a few moments in the operating room. . . and before that lying on a gurney in the pre-op suite with the anesthetist saying "We'll just give you something for anxiety here" as she depressed the plunger on a syringe. Although that's the last I remember before the operating room, Randy tells me I was awake after this: "You were really sweet when I got weepy saying goodbye to you in the hall." He doesn't think he would have reacted so dramatically if the anesthetist, a non-native English speaker, hadn't announced that this particular intersection was "the goodbye corner."
"I got mugged by my emotions a couple times," he told Cheryl the next day.
Cheryl's kidney is one of the faves of the U team this week, it seems -- "You've got a great little kidney there," my coordinator told me on the phone today. It apparently realized immediately it was doing the work of two. After a couple days of loading up on IV fluids, they began cutting me down -- and I was unable to keep up my fluid levels sufficiently. A few more IV bags and we seem to be reaching an equilibrium.
Cheryl's doing well -- we compare notes by phone daily and are enjoying having permission to take afternoon naps. And sometimes morning naps. And, in rare cases, evening.
It hasn't all been peaches and cream. I had two hellish nights in which I couldn't sleep due to the steroids. Picture yourself on two nights without sleep -- immediately after being discharged from the hospital. My eyes watered constantly from fatigue, although I lay in bed with every limb vibrating like a cell phone on mute.
I've diagnosed and treated my own nausea at 11 p.m. and I've finally figured out the only place I can sleep comfortably is on the futon on our three-season porch; thank goodness we didn't do this in February!
There've been a lot of desperate prayers sent up -- and answered.
George, our newsroom wag, wrote on the office card, "I hope you and your new kidney form a long-lasting relationship." He's closer than he may realize -- I'm in what they call the honeymoon period, when both the kidney and I are well-protected by high med levels. As these are tapered off to a balance I can better sustain over the long haul, there will be bumps in the road -- complications, illnesses, rejection episodes. So I have to pay close attention to everything from temperature to blood pressure to liquid intake, keeping track of small signals to prevent bigger problems.
But we're off to a good, good start.
Wednesday, April 28, 2010
Changes
Folks have been asking if we've noticed any changes since Holly received her new team member. Its been hard to tell in some ways because of the post operative recovery. The first day she could only have an ice chip every five minutes or so since she could not handle drinking normally yet. Since then, I noticed no more pica for ice. Even when I offered to go get her some later she wasn't interested. This makes my life hard since that used to be an easy way to make someone happy. Holly was just telling someone that once she was drinking on her own they took her IV away but the new kidney was working so hard she started to dehydrate so they kept the extra drip. Those were probably the first things I noticed that things were changing.
One recurring theme for both of us is how important sleep has been for our well-being through this recovery process. Of course in the land of hourly vitals and under the rules of steroids Holly had some rough times. I had some trouble sleeping both with anxiety and schedules. At times we were both a little raggedy. After the clinic visit today we had naps and since are feeling more on our respective games. Mine being a quicker more sprightly one to support hers as she comes little by little back up to speed.
For the first time in almost exactly a week Holly is checking her e-mail. See... ....yet more progress.
Back home is still work
Holly's still busy recovering, doing labs and trying to sleep so I'm going to do an update. Tuesday Holly had tests and another bag of anti-rejection drugs. The steroids have meant that she's not able to sleep when she wants. All that being said she is really glad that she is home and things are getting more comfortable. She's working on getting a schedule for her medications and the continuing labs for the next few weeks.
I have found that she has draft entries that she plans to be working on as she begins to feel better.
I have found that she has draft entries that she plans to be working on as she begins to feel better.
Monday, April 26, 2010
We are out now
Holly is home and continues to feel ever better. She had half of a Baja Sol burrito and is enjoying a quiet evening at home.
She will probably be updating the blog soon.
"I'm ready to launch"
Holly just looked up at her Thymoglobulin bag and said "This is so exciting."
(Holly, later: I was actually tapping on the IV tube trying to get it to go faster! Hmm. . . wonder how it is everyone from the patient educator to the PT staffer to the social worker has been telling me not to take things too fast. . .)
It's the last procedure they need to finish before they close up the neck port.
Last day for this...
I had to arrive early enough to get to the exit class with the social worker. We need to form a management team to make sure that this merger will be a long term success. To my surprise Holly was sitting up and actually ... ...chirpy. "Big changes in recovery land" I thought. More morning tests and poking on the way to leaving. This does seem to be the last day. I know this place is getting too familiar for my taste. I came back from my meeting and we talked for a while.
I went home for lunch and to get the computer since I wasn't sure of the schedule today. The "dog fairies" are a bit bemused by what's going on, but they seem to be taking it okay. I came in today and Major the Irish Setter smiled down at me from the top of the stairs. This is something he usually reserves for Holly. I know when she comes home he will have a big smile for her. I took the balloons (Thank you Lillie folk) and Holly's contingency bag of supplies home so we have less to carry when the time comes.
I got back just in time to see Holly finish her lunch of macaroni and cheese and chicken cutlet. She suggested that she would be sleepy from Benadryl but I haven't seen that yet and by now I am a kind of expert at what drugged sleeping looks like. She's a little dozy (Holly helped me with the spelling there) but still with it.
We are waiting for the last I.V. bag of one of the drugs she needs, after that one is done she won't need an I.V. anymore and they can remove the last tube. It was amazing the number of bags and tubes Holly started with on her I.V. tree. As she has made progress one by one they have disappeared. Such are the indications of progress. It really does look like she's ready to go home.
... tomorrow is the first day for that.
I went home for lunch and to get the computer since I wasn't sure of the schedule today. The "dog fairies" are a bit bemused by what's going on, but they seem to be taking it okay. I came in today and Major the Irish Setter smiled down at me from the top of the stairs. This is something he usually reserves for Holly. I know when she comes home he will have a big smile for her. I took the balloons (Thank you Lillie folk) and Holly's contingency bag of supplies home so we have less to carry when the time comes.
I got back just in time to see Holly finish her lunch of macaroni and cheese and chicken cutlet. She suggested that she would be sleepy from Benadryl but I haven't seen that yet and by now I am a kind of expert at what drugged sleeping looks like. She's a little dozy (Holly helped me with the spelling there) but still with it.
We are waiting for the last I.V. bag of one of the drugs she needs, after that one is done she won't need an I.V. anymore and they can remove the last tube. It was amazing the number of bags and tubes Holly started with on her I.V. tree. As she has made progress one by one they have disappeared. Such are the indications of progress. It really does look like she's ready to go home.
... tomorrow is the first day for that.
Sunday, April 25, 2010
Walkies and Wheelies
An "incentive spirometer" -- bringing the fun and games of the fairground to the hospital setting. Breathe in and keep the little ball at the top as long as possible!So this morning Holly pops out of bed and is grabbing her I.V. pole just as the nurse walks around the corner.Holly says "Oh you caught me! I'm going for a walk." The nurse suggests that she might want a robe. We all agree this is a friendly place but not "that" friendly. So into the robe and away with pole we go. I was surprised by how fast she was going. We made the loop and got back to the room and that was about it for a while.
It looked like she was out for a while so I went for lunch and a walk around and got back to see her head off for an official walk with the therapist. The did some stair steps to see how that went. I said "Hey you haven't blown on your spirometer for while." so she blew on it a couple times until she maxed it out. She hadn't done that before because of the pain which is now diminished enough for her to toot her silent horn.
We are still waiting on labs. The second shift nurse will go over them with us at some point this afternoon. In the mean time more nap time for Holly
Sunday Morning
Holly was pretty sleepy when I got in this morning. Considering she had just gotten another shot of Benadryl that wasn't surprising. Considering she had gone to her exit class at 10 am I was amazed she had the energy to talk to me at all. She enjoyed her oatmeal and is feeling less pain. I missed all this because I finally got a good night sleep. Dr. Dunn, her surgeon, stopped by on her way to somebody else's procedure (the beat goes on). She says Holly is still on track to go home tomorrow. They are waiting on some additional lab results to confirm where she's at. I'm sure the occupational therapist will be here again today for some more work and evaluation. I can't remember ever being so happy to watch someone sleep before this.
The big celebration is that Cheryl is going home this morning. I talked to her and her mother and Cheryl is looking forward to a more relaxed setting.
The big celebration is that Cheryl is going home this morning. I talked to her and her mother and Cheryl is looking forward to a more relaxed setting.
Saturday, April 24, 2010
little by little
Holly has slept most of the day and is catching up. She went for a walk with a walker and came back in a wheel chair. Even so the therapist said it was a good outing for the first time. Holly's disturbed night probably contributed to her fatigue on that outing. All the responsible folk are saying that Holly is doing well. More rest and more attention and more progress.
The day after the next day
It's Saturday I guess. My days are getting a bit confused. I came in to to see Holly this morning and she looked a little rough. She had some nausea last night which interfered with her sleep. Over lunch I looked at the printed out PowerPoint, from the social worker, we missed because of Holly's exhaustion and discovered that all her anti-rejection drugs had nausea as a side effect. That explains that. About the time I got there they administered a more powerful anti-nausea drug and the old stand by benadryl and she was deeply asleep. I sat with her a couple hours went out to lunch and by the time I came back she was up for a short time then back to sleep. Before she fell asleep I read some emails to her. Thanks for all your good wishes and prayers. All the corporeal knitting parties are working hard to repair the rents and cuts and bind in the new tenant.
So hooray for sleep and deep breathing.
So hooray for sleep and deep breathing.
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