I guess this is the place for this thread.
After about 2 years on dialysis, I am about 21 months post kidney/liver transplant and, so far, am doing well. I know that I am frequently asked about my transplant, and I’m happy to share with people my own experience with it.
If anybody has any questions about it, just ask.
FISH
First, congrats!
So many questions to ask (most of them kinda stupid)! Did you get to see your old liver and kidney? Anybody asked you if you feel possessed by the new organs? Are you good as new or still healing? Heck, what stuff do you have to worry about now? How long should your new liver and kidney last? Did you know who the donor was? A whole liver or one of those fancy part of a liver dealies? Okay, I’m done.
Hey, congrats!
My BIL had the same transplants a decade ago.
Have you had any rejection episodes? If so, how severe?
What’s the average life expectancy running with the the transplants you had? I know my BIL’s was approximately 10 years when he had his, and he’s still with us so it’s sorta like total bonus time now.
What medication are you on? My half brother’s ex boyfriend had a liver transplant and the anti rejection drugs were the same as what my dog had been given for thrombocytopenia. So I’m wondering if they’re standard…
From BadBaby:
Did you get to see your old liver and kidney?
Nope.
Anybody asked you if you feel possessed by the new organs?
No, but everyone thinks he’s the first to ask if I got any onions with my liver. 
Are you good as new or still healing?
No transplant of this kind is ever going to be as good as new. You’re just exchanging one set of conditions for another. In my case, exchanging a rare disease and end-stage renal disease and a life on dialysis for a life of suppressed immune system, behavior and dietary restrictions, suntan lotion, and a daily pill regimen.
I’m as good as I’m going to get, though, transplant-wise. Everything seems to be working so far, though I’m still being tested regularly for anything abnormal.
Heck, what stuff do you have to worry about now?
I worry about cholesterol, same as most people: it can plug the connection to the grafted organs. I worry about how much water I should drink, same as most people; the kidney needs to stay hydrated. I worry about eating uncooked foods, or stuff that’s been left out (say, at a barbecue or potlock) because my immune system is depressed. I also worry about sunburn, because the pills I take make it more likely I’ll get skin cancer. (Usually I wear long sleeves, even in the summer.) I worry about very small children and pets and plants, because they’re loaded with bacteria and stuff.
How long should your new liver and kidney last?
Dunno. The first kidney transplant was done about 40 years ago, and last I checked, it’s still viable. They’re using different methods now than they used then, and different medications, so it’s hard for them to draw comparisons. They’re guessing probably 20 years.
Did you know who the donor was?
Nope. Wrote the family a letter, though. Haven’t heard back.
A whole liver or one of those fancy part of a liver dealies?
No, it was a whole liver transplant, not a single lobe.
From Queen Tonya:
Have you had any rejection episodes? If so, how severe?
None yet.
What’s the average life expectancy running with the the transplants you had?
My liver transplant was a rare case, as I didn’t have liver failure but a rare disease. A lot of transplant case history is based on whether the patient is diabetic (especially for kidney transplants) or has Hepatitis-C (in the case of the liver). I have neither. As I said above, they’re just guessing, but overall, they think the lack of Hep-C is a bonus.
From silentgoldfish:
What medication are you on? My half brother’s ex boyfriend had a liver transplant and the anti rejection drugs were the same as what my dog had been given for thrombocytopenia. So I’m wondering if they’re standard…
Immunosuppressants, currently: FK-506 (aka tacrolimus), mycophenylate (brand name CellCept), and prednisone. I understand the tacrolimus is a relatively new medication that is supposed to be less harsh on kidneys than the previous stuff, cyclosporine.
FISH
Hiya… wow interesting stuff! Congrats on doing so well post transplant. Amazing stuff medicine can do these days.
I probably have a kidney transplant in my future. I’m still operating with both the originals (much to my nephrologist’s surprise) but I’m not sure my luck will hold out forever. (I have glomulero sclerosis - hope I spelled that right - and the doctor’s predicted I’d be on dialysis by 18 but I’m 30 and so far everythings ok)
You said you have a rare disease. Will it affect any of your other organs later? Or did getting the new organs take care of things?
How are the immunosuppressants treating you? I have a horrible reaction to prednisone myself. I also can’t spend too much time in the sun because of medication I take. I hear ya about the sunblock and long sleeves
You mention that you are concerned about your cholesterol. Is it elevated or just closely watched? I didn’t know it could mess up the new connections. Do you have high blood pressure too?
What was dialysis like?
Can we expect to see you on the threads regarding organ donation/transplantation and other related topics in Great Debates?
I was in the renal OPD clinic last week, and met a lady who’d just had a kidney transplant. She has polycystic kidneys, her daughter, 7 of her 12 siblings, and several of their children, are either post-transplant or on the waiting list. Pretty sad (but they’re all doing quite well).
Has your quality or life improved much, or do you find that the side effects of the anti-rejection drugs are taking their toll?
Hi Fish !
As you know from the other thread, WinkieHubby is looking at a transplant this fall (we hope.) He’s been on dialysis since last September.
You’ve already answered a number of my questions above, but here are some more:
You mention a rare liver disease - do you know what caused your kidney failure? We have no answer on that front for WinkieHubby, and we’re told that’s not all that uncommon, but it still bugs me.
How long did you need a full-time caretaker after your surgery?
How frequent are your doctor visits?
Did you get any liver with your onions? I’ll bet I’m the first to ask you that. :rolleyes:
oops, reverse that. :smack:
oops, reverse that. :smack:
From Tanookie:
You said you have a rare disease. Will it affect any of your other organs later? Or did getting the new organs take care of things?
The disease is a genetic liver dysfunction, an enzymatic defect called primary type I hyperoxaluria. See
at rarediseases.org. The upshot of it is the liver manufactures oxalate, which crystalizes with calcium to form stones. The calcium oxalate crystals also deposit in other soft tissues in the body, in the bones, the heart, the eyes, under the skin, and in the kidneys. This last is why my kidneys failed in the first place, which is why my condition is often referred to a nephrologist (kidney specialist) instead of a hepatoligist (liver specialist). Getting the liver transplant is widely considered to be a cure for the disorder, although I have a great backlog of calcium oxalate crystals built up in my body which are slowly coming out with the help of IV therapy and a lot of fluids.
How are the immunosuppressants treating you? I have a horrible reaction to prednisone myself.
Not bad, now. The first immunosuppressants I took, cyclosporine, taste awful. I can’t describe it. (Try to imagine the smell of a skunk who bathes in petroleum, then falls down an elevator shaft onto a pile of manure and dies. That’ll give you some idea.) When you open the foil packet you can instantly smell the stuff across the room, and it’s a huge horse pill, like a gray gel-capsule. Cyclosporine causes the side effect of hair growth, but not neccessarily in places where you’d want any.
The stuff I’m on now, tacrolimus, is in small time-release capsules, and it’s very easy to swallow, has no taste, and no side effects that I’ve noticed.
The mycophenylate doesn’t bother me at all. Prednisone hasn’t given me trouble for a while, since my dose has dropped down to a “maintenance dose.” My docs are trying to wean me off of prednisone entirely, too; for some people, it’s just more trouble than it’s worth.
You mention that you are concerned about your cholesterol. Is it elevated or just closely watched? I didn’t know it could mess up the new connections. Do you have high blood pressure too?
My cholesterol is under 200, but we watch it to make sure it doesn’t spike. I also have a battery-operated blood pressure cuff so I can take my own, but it’s not terribly high. 130/60, last I checked.
What was dialysis like?
in the voice of Eric Idle: “Dull, dull, dull, dull, dear God it was dull…sitting in the Waterloo waiting room…”
Says it all. Sitting in a chair with nothing to do but watch inane drivel on TV. If you don’t like needles, like me, then it’ll be a pain; the dialysis needles are 12-15 gauge, about the size of a pencil lead. Getting poked repeatedly isn’t much fun, but it doesn’t feel like anything when the machine’s running. You’re generally not allowed to eat, and afterward, you feel pretty washed out.
Dialysis removes excess fluid from the body and cleans the blood. Kidney patients tend to collect fluid, because the kidneys aren’t working properly. Most of the excess fluid ends up as edema, where it gravitates to the calves and ankles. However, the diaylsis machine only extracts the excess water from the bloodstream, which means when you get unhooked, you have very low blood pressure until the fluid in your tissue seeps back into the bloodstream. Sometimes your blood pressure drops too low, and you feel sick and lightheaded, but competent techs won’t let this happen, once they know your ideal weight. (You weigh in and out so the techs know how much fluid to take off.)
It’s also fairly trying, because you have to monitor your fluid intake, and watch your diet for salt, potassium, and a number of other hard-to-avoid things. This means watch your intake of pizza, which is ultra-high in both.
from Broomstick:
Can we expect to see you on the threads regarding organ donation/transplantation and other related topics in Great Debates?
From my profile you can see I’ve been a member for a while, but I haven’t cruised the boards regularly, and I don’t often post even when I do. It’s only been recently that I’ve dipped into Great Debates, because I haven’t had time enough online to get through all the reading. I have DSL now, so I hope to participate in threads on transplant. In fact, before starting this one, I did a search of titles with “transplant” in them to see if this had been done before. If a thread goes up about transplant, and you don’t see me, just email me through my profile.
From irishgirl:
Has your quality or life improved much, or do you find that the side effects of the anti-rejection drugs are taking their toll?
Much! Yes, I have more energy now, and I’m not spending 5 hours a day on dialysis. (Most dialysis patients get between three and five hours, three days per week. I was on 6/week due to my disease.) I have less to worry about from diet, although I still have to be careful, and because I have no kids or pets I haven’t had to change much. I’m just very careful to wash my hands and stay away from stuff I know might be contaminated and not to share food or drink containers with anyone. I haven’t caught cold more often than normal.
Post-transplant immunosuppression, I’m told, is like being at 50% of your immune system. By comparison, the doctors tell me that HIV puts the patient at about 10%. I’m sorry I don’t have a cite for this; it’s just what I’m told by my docs. (I did ask 'em, 'cos I was curious.)
From Winkie:
1. You mention a rare liver disease - do you know what caused your kidney failure? We have no answer on that front for WinkieHubby, and we’re told that’s not all that uncommon, but it still bugs me.
I already explained the liver disease, above. Most kidney transplants, as I understand it, happen due to diabetes. I’ve known people who have had kidney failure because of the transplant medications from a liver transplant, too. The kidneys are pretty sensitive, so they monitor those drugs carefully. Tacrolimus is better for the kidneys than the older stuff.
2. How long did you need a full-time caretaker after your surgery?
I was a special case, mind you. I had a full-time caretaker (my mother, bless her) for my first kidney-only transplant only for about two weeks. The doctors recommended a month, but I was able to get around quicker than that. My kidney-liver transplant was more taxing: for one thing, it requires surgical staples. That, the whole month, certainly.
3. How frequent are your doctor visits?
These days, every two months. I see a hepatologist every couple of months as well, though there’s not much for him to monitor in my case. It’s just sort of standard procedure, in case anything happens. They also do blood draws every month or so, but again, I’m a special case. For the first few months, the University hospital wanted to do all of the visits in person; now I’m released into the care of my primary doc, I can do the blood draws locally and the results are sent up to the transplant team in Seattle.
FISH
Y’know, it’s the nature of the SDMB, I guess. I saw the thread title, and my brain wanted to make it a “play on words,” where the title is misleading, for comedic effect.
So, of course, my first reaction was, “This poster has had a thread moved from one forum to another.”
I apologize for my brain.
With that out of the way…
Are the immunosuppressants going to be with you forever, or is there any chance your system will adapt to the transplanted organs fully?
What about alcohol, now or in the future? Are you (or will you be) able to handle any at all, or would that just be playing Russian Roulette?
[sub]I’m guessing the answer to my second question is gonna be the obvious one, but my ignorance knows no bounds, some days.[/sub]
From Skeezix:
Are the immunosuppressants going to be with you forever, or is there any chance your system will adapt to the transplanted organs fully?
The first question I can answer as a yes. Although some programs try to wean the patient fully from prednisone, others aren’t convinced it can or should be done. The rest of my meds will likely stay the same, although the dosage may be dropped in response to my body’s reaction.
Can or should the meds go away to see if full adaptation is possible? That I don’t know. I suspect over the years, with other patients, the number of adverse reactions has given the docs an opportunity to field-test that supposition. My guess is, no, the body won’t adapt.
What about alcohol, now or in the future? Are you (or will you be) able to handle any at all, or would that just be playing Russian Roulette?
I never was much of a drinker anyway. I was likely only to have a glass of wine at Thanksgiving or Mother’s Day when the family was together, and I didn’t always even finish it.
I was told, however, that the University of Washington was very strict on curbing alcohol use post-transplant. This is not always the case, though.
I asked about this, and this is how it was explained to me. In some districts, such as mine, the board which doles out the limited organs available does look at things like age; tobacco, alcohol and drug use; history of medical compliance, and so on. This is a kind of triage; they want the organ to go first to the best candidate, who will get the most years extended to his life.
If, for instance, a chronic alcoholic has liver failure, he’s likely to be passed over for transplant as he’s more likely to damage his new liver. Instead, the organ is given in preference to someone who won’t drink, presumably because the non-drinker won’t scar up his new liver from his own (in my opinion) self-destructive behavior.
Other districts don’t do this, and will take whatever patient that happens along who has a quarter of a million dollars burning a hole in his pocket. Transplant departments are money-makers for hospitals and universities, so some choose to accept whoever’s at the top of the list, without qualifications or explanations, even if their organ failure was originally caused by their own behavior. In some ways this is philosophically better – the worst go first – but in others it means that a chronic drug user would get a new liver, and possibly spoil it and die, before a year has passed; and a candidate who would follow the rules dies before another organ shows up. (Perhaps the hospital views these the same: in either case, the insurance company pays them for one [1] transplant.)
Occasionally you’ll hear someone complain that “sick people in this country are dying because there are organs going to people that are practically healthy!” This is often precursor to the proposal that a national transplant list be set up, so a viable organ from Montana can be shipped to a hospital in New York, or some such. Sure, nobody wants the sick to die while waiting for transplant, but the issue of a national organ program is a lot more complicated than simply putting the worst patients first. But that’s a matter for Great Debates, not here.
I was also informed by the transplant team that all other things being equal the organ would go to the person with dependent children or family, because more people would feel the absence of this bread-winning patient than would a non-married person. It was even suggested that the organ might go to someone slightly less well-qualified in this case.
In cases such as liver transplant, where there is no long-term dialysis option, or heart transplant, candidates are ranked on the list by time served, blood type, and symptoms. If your symptoms get worse, you get bumped up to the next class. For kidney transplants, which are tissue-matched when possible, someone farther down the list might get bumped up if a perfect match donor organ becomes available: the better the tissue match, the less the patient must be immunosuppressed, and the longer the graft is likely to be viable.
In other words, since my district enforces medical compliance issues, I don’t plan to drink. I don’t think taking one glass of wine now and again would seriously affect my organs, but I’m not going to be the one to test out the goodwill of the transplant team.
FISH
Hey dude. Nice to see you back on the boards. Since I’ve got the privilege of some personal knowledge[sup]1[/sup], I’m going to steer the conversation a little bit, if you don’t mind.[list=1][li]As long as you’re discussing compliance issues, would you talk a little about the failure of your first transplant, the kidney alone? Because the disease resides in the liver, obviously, the new kidney wasn’t going to be a permanent or even a long-term fix, but it failed faster than anyone expected and didn’t buy you the time to consider other options, due at least in part, as you acknowledged in the hospital, to spotty compliance. It could be very useful for other people facing your situation to hear an honest discussion of your experience, and how it has made you more conscious of the extreme importance of following the doctors’ instructions.[/li]
[li]Also, not to frighten anybody, but it might be additionally useful to talk a little bit about the other (non-immuno-related) complications you’ve had, and how difficult and fraught with potential problems these transplant procedures really are. I refer of course to your foot, the details of which I leave to you to relate. I’m sure that people will be fascinated to know the consequences that can arise in unexpected areas of the body when something major is done in a completely different and ostensibly unconnected location.[/li]
[li]On a really important subject, is Jeff Cirillo ever going to start swinging his bat, or is this the predictable result of inflated hitting stats from up in Coors Field? And if the latter, do we start looking to unload him (and eat the salary), or do we let him ride out his contract and console ourselves with the lame rationalization that his excellent glove saves the equivalent of a run every five or six games and can therefore be mentally converted to an extra RBI?[/list=1]P.S. Congrats on the DSL. I’m jealous, you cheeky bastard. I gotta come down and play HALO one of these days.[/li]
[sup]1[/sup]To anyone who’s wondering: He’s my brother. (And no, he ain’t heavy.)
From big brother Mr. Cervaise:
As long as you’re discussing compliance issues, would you talk a little about the failure of your first transplant, the kidney alone?
Of course. Due to the nature of this particular disease, my body had a tremendous backlog of oxalates built up in various body tissues. The first solution was for a kidney transplant only, as it was hoped that with sufficient hydration, it would be possible to dissolve the built-up oxalates so they would pass harmlessly out of the body.
Think of it like making Kool-Aid but using too much sugar: the water becomes saturated, and the sugar crystals are unable to stay in solution. They settle to the bottom of the pitcher.
This is, in essence, the problem with the oxalate crystals, except that the crystals link together to form stones, which then clog the kidneys, obstruct the urinary tract, and so on. Exactly the same, except not cherry-flavored.
Previous patients have been able to successfully comply with a regimen of drinking fluids such that the oxalates caused them no problems. The failure of my first transplant was due to my inability to drink 12 liters of fluid daily (approximately four gallons) in addition to 2 liters infused by IV, which was the doctor-recommended fluid intake. Inability turned to unwillingness as I began to realize how daunting 12 liters really was.
I was able, on some days during my at-home recovery, to reach a level of about 8 or 10 liters of fluid intake, but it was a difficult mark to achieve, and I got frustrated with the monotony. In addition, my flawed liver was still producing ten times the normal dose of oxalates daily, so in addition to washing out the backlog of oxalates, I was trying to keep up with current output. When the hot summer months hit, and I began to perspire more, my urine output dropped, and my first kidney failed. (And I feel terrible about it, too, as it was donated by my mother.)
The University hospital is very keen on my compliance now, as they put the blame entirely on me for not having kept up with the fluid regimen. Folks, if you’re up for transplant, compliance stuff is serious.
Also, not to frighten anybody, but it might be additionally useful to talk a little bit about the other (non-immuno-related) complications you’ve had… . I refer of course to your foot…
When they install a new kidney they put it in the pelvic region, instead of the flank (where your kidneys normally reside). This is easier for many reasons: it’s closer to the bladder and less far to hook up the urinary plumbing; it’s outside the abdominal wall so it’s an easier recovery; there’s a hollow area sufficient for a kidney; and the femoral artery is a likely place to hook up the darn thing for bloodflow.
During my kidney/liver transplant surgery, a grueling twelve-hour process, I lost circulation in my left foot. They’re not sure why. It might have been blood clots, traveling down the femoral artery into the foot; it might have been Reynaud’s syndrome; it might have been oxalate crystals. The decrease in circulation led to an ulcerated heel and necrotic toes. In the end, my foot was amputated midway through the metatarsals. I now walk with a footbrace.
On the other hand, I’d rather have the kidney and liver than some toes. Sure, it’s a pain, but the alternative is much worse. This is one of the reasons why my post-transplant recovery times may not match the experience of others: I acknowledge I’m a special case.
On a really important subject, is Jeff Cirillo ever going to start swinging his bat…?
I don’t know that we’re likely to see the .301 average Cirillo carried at Coors Field, but his current Safeco average of .246 and this year’s average of .236 are way, way off the mark. I’d expect he’d at least be able to pull down .260, so I figure he’s doing something wrong with his swing (apart from not making contact). Given his salary, he’s kind of an albatross anyway, and with a famously disappointing offensive performance, not many teams are going to want to get stiffed for the price. (Sports Illustrated’s website is advocating the anti-All Star vote for Jeff Cirillo this week. That’s how famously bad he is. Check the power rankings.) If we trade him away, we may have to eat some of his salary and put a cheap prospect in at third, but I don’ t know who you’d be able to stick over there that would be an improvement with the glove. Not McLemore: he’s showing his age this year. The M’s farm system is a bit thin. Personally, until he becomes a defensive liability, I’m inclined to stick with him. Either that, or we pay him to play for another team.
Hell, we could trade him to the Tigers. His .236 would actually raise their team batting average, currently .221.
FISH
P.S. Say the word, thunderbird. I’m ready when you are.
Earlier you wrote of how you take care around kids, pets, and other potentially infectious situations. I hadn’t known that kidneys were installed (for lack of a better word) in a place different from the norm. How does that affect your daily life? I’ll hazard a guess you’re not going to play middle linebacker any time soon, but is it a part of your body you’re careful not to bump, et cetera?
From Ino:
I hadn’t known that kidneys were installed (for lack of a better word) in a place different from the norm. How does that affect your daily life? I’ll hazard a guess you’re not going to play middle linebacker any time soon, but is it a part of your body you’re careful not to bump, et cetera?
Nah. It’s pretty sturdy, there. The only thing they really caution you for is to avoid heavy lifting for three to six months or two.
When the grafted kidney gets put in, it’s connected to the urinary tract and to bloodflow. It doesn’t, however, get back its nervous system connection. Kidneys know when the body is upright, or at an angle, and work harder when you’re standing upright. A transplanted kidney doesn’t know this, so kidney patients get edema around the ankles during the day as water gravitates downward. Overnight, the legs sort of drain off toward the abdomen and all is right again in the morning.
FISH