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
Monday, November 29, 2010
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.
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