-- 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.
Wednesday, November 17, 2010
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.
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