Living with transplanted organs and immunosuppressant drugs

March 23, 2013 12:28 PM

So what's it like to be the recipient of an organ transplant and having to deal with immunosuppressant drugs? How does your life change? How often do you have to take your drugs? What are the weird details of daily life that outsiders don't know about? Are there any insurance hassles? I have a fair idea of what it's like to be diabetic because of coworkers who have this condition but I don't know anything about the life of organ transplant recipients and I'd like to know more. Any help you could provide would be deeply appreciated.
posted by jason's_planet to health & fitness (15 answers total)

It depends on what organ it is, and the drug protocols of the center where you receive your transplant.

I am both a researcher of the psychosocial aspects of chronic kidney disease and a two-time kidney transplant recipient myself, so I can shed a bit of light on the kidney side of things.

With my first kidney transplant, which came from my dad when I was 15, I was on two different immunosuppressants (Prograf and CellCept). I also took Prednisone, a corticosteroid immunosuppressant. Finally, I took a variety of other drugs - some antifungal medications, aspirin, a regular antibiotic, and a few vitamins like magnesium and potassium supplements. Triple therapy is really common. The most popular drugs post-transplant for kidney patients are tacrolimus (Prograf), with 89.7% of patients prescribed this upon discharge from the hospital post-transplant; mycophenolate mofetil (CellCept) (91.2%), and corticosteroids (usually Prednisone) (66.2%), according to the Organ Procurement and Transplantation Network statistics from 2011.

I took these drugs every day. The drugs that you're interested in - the immunosuppressants - I took twice a day. I was on a fairly low dose, as I am a small woman (and at the time, I was a small girl!) I took 2.5 mg of tacrolimus twice a day, 2 mg of prednisone once a day, and I do not remember the dosages of the other drugs. Now, when you first get a transplant, the dosages of these drugs are much higher. They are tapered over time, gradually. The side effects are worst at the beginning.

Taking my medication on time was annoying. I took them at 8 am and 8 pm every day. The magnesium I had to take five times a day, so I had a little alarm-rigged pillbox for that one. The side effects, particularly of the prednisone, were not fun. The prednisone gave me a moon face, unwanted body hair, horrible mood swings... The doctors tried taking me off of it several times, but I had rejection episodes every time they took me off of it completely, so that low dose was mandatory. The Prograf gave me difficult side effects, too - shaky hands messed with my handwriting, and it also does this weird thing where your extremities feel really really hot or really really cold at random times. So, that's odd. Finally, the CellCept gave me very bad stomach cramps, and the Prednisone also made my stomach hurt. Eating was not super fun or easy with that mix of drugs.

The weirdest detail of daily life after the first transplant was knowing that I needed a second one, because the first one was messed up. The dosage of my Prograf was so, so high when I first had the transplant that it was toxic to my kidney, and caused irreversible damage. So I knew the whole time that I would need another kidney. The first transplant lasted for five years. I was sick for most of it, with kidney failure. Kidney failure sucks, but that's the topic of another post.

The second transplant (donated by my mom) was done at the first-rate Starzl Transplantation Institute at the University of Pittsburgh in 2003. They were pioneering an amazing program that promised low or no immunosuppressant drugs and no steroids. This was amazing, because the side effects from the Prednisone really affected my quality of life. So, we went for it. They do this amazing procedure called induction, and I believe they were pioneers in the US for induction. In induction, the patient is preconditioned for the transplant via IV with alemtuzumab, originally developed for leukemia. This depletes the T cells and has been shown to increase the survival of the transplant, reduce delayed graft function, and allows for monotherapy: only one immunosuppressant drug, the calcineurin inhibitor, is necessary post-transplant for most of these patients, and they may be able to take it much less frequently – a few times a week compared with twice daily – than patients on the standard triple therapy protocol. Induction is becoming more popular over time: in 2001, 20.3% of patients in the United States received it; in 2011, that rose to 62.3% (again based on Organ Procurement and Transplantation Network's 2011 statistics). So, now, I take Prograf three times a week, aspirin, and an antibiotic. And that's it. I take 6mg of Prograf every time I take it. I have no symptoms that I know of.

So, OK - some of your other questions about living with a transplant are really interesting. Personally I have no idea what life is like without a transplant, since I had my first one 15 years ago when I was only 15 years old. Frankly, I feel really normal, although in the back of my mind there is always the question of "when will you need another kidney, and how will you get it?" This uncertainty is really common for post-transplant patients. These issues can broadly be broken down into medical, personal, and social problems, and include:
- Dealing with the complicated medical regimen (for me this isn't horrible, but sometimes I am afraid of forgetting to take my meds. This is worse if you're on the triple-therapy and take a bunch of drugs at random times throughout the day. It's hard to keep track of.)
- Uncertainty about your unpredictable future health (I covered this above)
- How to deal with questions from other people
- Role and identity challenges (Will I still be able to work? Play with my kids? What won't I be able to do?)
- Unclear relational implications (What will future partners think? When should I tell people that I am dating that I had a transplant and might need another one?
- Possibly stigmatizing social relationships (Am I disabled now? Do people think of me differently, as a sick person?)
- Will I be able to fulfill my life goals?
- Financial implications (How expensive is this? Will my insurance cover it? What are the financial consequences?)

And yeah, insurance is a big issue. The immunosuppressants have to be taken until the day I die, and I'll always need health insurance to cover them because even just taking one is expensive. It was a big hassle for me when I was getting my master's degree and paying for COBRA out of pocket; I had to get a job and finish my degree ridiculously fast in order to get health insurance to cover my drugs and to stave off any potential difficulties from having a pre-existing condition. It was also a hassle (I think) when I got my second transplant, which we opted to do at Starzl because of the cutting-edge induction treatment (which they now do in a lot more centers). I was young, but I know my dad spent hours and hours and hours on the phone with Blue Cross working it out.

If you have any more questions feel free to MeMail me. I can talk about this for quite awhile, and am happy to share. Like I said, this is my research (I'm looking specifically at how and why patients with chronic kidney disease decide to share personal health information on the internet, particularly in online support groups) and also part of my lived experience, so I can clarify or expand as needed.
posted by k8lin at 2:00 PM on March 23 [78 favorites]

Oh, and what is my life like now? Totally normal. I grapple with some of the issues like "Will I be able to fulfill my life goals?" and "When am I going to get sick again?" but I'm 30 and I've had my second kidney for almost 10 years (looking forward to the anniversary in November) and no one knows something is different about me unless I bare my midriff (I have some kick-ass scars) and they usually don't know I have had kidney transplants until I tell them.

And I have to stay away from sick people and wash my hands a bit more, but everyone should do that. ;)
posted by k8lin at 2:03 PM on March 23 [5 favorites]

For questions about people who have received organ and tissue donations from deceased donors, he key word is cadaveric donation.

Lesley Sharpe does great anthropology of organ procurement and many organ procurement organizations have some information about the process.

One thing that interests me is the cultural ways we talk about donation. This directly affects the lives of some organ recipients. We tell donors and their families that they/their loved one 'will live on' because of donation. Recipients are told 'it's just tissue, nothing about you has changed.' Yet some recipients do report that they feel changed. Some like foods they never wanted before, others have different emotional reactions than before. And talking about why is still not well done by most of the medical community. (My favorite reason topics include 'ways lay people and biomedical practitioners conceptualizer and discuss disease, health, and healing, as well as how those ways of speaking converge and diverge.')
posted by bilabial at 3:00 PM on March 23 [6 favorites]

k8lin did a great job of covering everything in way better detail than I could, but I'll throw in what i can think of.

I had a liver transplant at age 31, about 2.5 years after I was diagnosed with cirrhosis (irreversible scarring of the liver) - cryptogenic, meaning despite a lot of tests
they could not determine what caused it - most likely case was I had a virus when I was around high school or college age that set up an inflammatory system that slowly
destroyed my liver over time.

I had an orthoptic transplant meaning my liver came from a person who died that had decided to donate his organs and let his family know.
He died unexpectedly of an anyeurism.
It's impossible to put into words how grateful I am for that person's selfless decision, or that of his family, or for that matter the skilled doctors and nurses and caregivers that
made it possible for me to live a normal life again.

Like k8tlin, I started on high doses of immunosuppressants after transplant. Originally I was in a clinical trial for a drug called neoral, along with predisolone (what prednisone breaks down into in your liver), and prograf (tacrolimus)- i don't recall the doses but they were much higher than now. My immune system was rejecting the new liver for weeks after transplant even with the high doses.
I was switched off the trial from neoral to Cellcept (mycophenolate mofetil). I ended up having to be put on a heavier acute rejection drug called OKT3 (nicknamed shake-n-bake) for a while - that was incredibly unpleasant.
I also had several treatments prophylactically for Cytomegalovirus (CMV) in case it was present in my donor. I took Bactrim also to prevent pneumonia due to my low immune response.

Once I was out of the hospital - I continued on Prograf, Cellcept, Bactrim and prednisolone - stopped Bactrim after about 6 months and tapered off the predisolone after a year I think.
Predisone makes your hands shaky, and gives you a rounder shaped face than normal, night sweats, I was glad to be off of it.

Now - almost 12 years later - I take Cellcept (1000mg 2x/day) and Prograf (1mg 2x/day) and do followup blood work about every three months or so to make sure the levels in my blood are right and blood work will catch rejection before you would notice it most likely (fever, aches, feeling flu like) so they can adjust your meds. If you go into rejection for some reason - then you have to go back to your transplant hospital to "recycle" which means that jack the dosage way up to stop the rejection and then taper it back down over time to maintenance levels. It involves about a week long stay in hospital for my transplant center. It's more common to have rejection in the first 2 years, and goes down after that I think. I've never had rejection other than right after transplant but it's a risk.

The drugs I take can cause really bad stomach cramps (burning and cramping) right after you take them - I get that occasionally with my morning dose - empty stomach tends to trigger it for me.

Other than that - it's not a big deal - though you do worry about forgetting to take them. Missing a day is probably not a big deal but everyone is different, so it's a worry.
Getting in the habit of not having a set time to take them is a risk - I found that my line of work makes me stay very late sometimes and I'd miss a dose, so I'd start carrying dose with me just in case early on.
I've worried about traveling with them, always pack them with carry-on so they cant get lost with luggage, and make sure I have more than enough for a trip, etc.



I worried about dating, etc - how would someone see me? As a sick person or what?
In the end I found it surprised some people (you cant tell by looking at me unless you see my scar). Most people are curious and with dating it was only an issue with concern to how long I would remain healthy - which for me is hopefully the rest of my life :)
I met my wife and I think her family was concerned mainly about my life expectancy - and she worries about me getting sick from being immunosuppressed.
Surprisingly, I don't get sick easily though I take care to not touch certain things and wash my hands, etc. I've had all my coworkers out sick with flu and colds and never gotten it several times, its there, but i don't worry overly about it.
With medicine - it's hard to say but I think I probably have a normal or only slightly reduced life expectancy for someone my age, and that will likely only improve as medicine continues to advance.
Since I was so young, and my immunosuppressants are nephrotoxic (they damage the kidneys) - the biggest concern now for me is kidney health. I will likely need a kidney transplant at some point since I transplanted so young. That takes 10's of years to happen, and they monitor kidney function when I go back for checkups (every 5 or 10 years outside my normal bloodwork and yearly checkups with my local doctor.)

There are vaccines I can't take - all live vaccines - so the nasal flu vaccine, yellow fever vaccine if I travel somewhere that required it I would have to get a waiver and be careful when I was there, etc.
I don't eat at dive places often, I think food illness is the easiest thing to bother me from immunosuppression. I eat sushi (yes raw) though I avoid raw oysters and other raw shellfish.
I had food poisoning once before I was sick, and once after my transplant - the real deal where there is no question that is what you have. The first time was extremely miserable. The one after transplant put me in the hospital, that's the difference immunosuppression makes I guess for daily life.


The biggest thing for me though was I feel normal and healthy again, being sick with liver failure is a wholly miserable existence.
I've been as close to death without dying (both from bleeds and from just wasting away from being sick) as I think I could ever get - and the thought or rather fear of dying isn't there for me.
I would not like to go through wasting away, or pain, but dying itself to me isn't a mystery to be afraid of. I appreciate life more I think.
I'm subconsciously more hygenic than most people would gather - just to avoid the easy ways to get sick, and that seems to work for me.

Insurance is definitely a big deal. The drugs I will take for life are not cheap - they are cheaper than they used to be since Cellcept is now generic. I remember seeing 1 months worth of prescriptions for my immunosuppressants (like what I would pay if I didnt have insurance) total about $1800-2000 for the three (Cellcept, Prograf, and I forgot - i take a beta blocker for hypertension caused by the drugs too).
I think now that Cellcept is generic - they would be more like 1100-1200 for a months worth - maybe a little less (for someone who had no insurance) - my copays with insurance are $5 or $35 I forget which now.
I've been lucky to have a good career that allows me to get good employment and be on good work group plan insurance.
I've worked contract before when switching jobs - meaning I took COBRA from my previous employer to my new job that was "contract to perm" and COBRA is expensive - mine was about $1200 per month premium and the plan had a $2500 per year deductible that included prescription drugs to I usually ended up paying the whole deductible too each year. When COBRA ran out (18months) I had to find my own insurance. I found out that having a transplant is an automatic denial for private insurance (meaning they wont insure you privately) - luckily I live in a state that has pool health insurance that covers people that are auto-deny like me (transplants, certain types of cancer even if in remission) - it's more expensive than COBRA :)
Almost 1300/month premium and the deductible per year went to 5000. My contract with my employer went to a permanent offer position so now I'm back on a group plan with my employers insurance plan so I pay what my coworkers pay for insurance again. (a lot less!)

I am lucky in that if i did not have a good career always with good jobs - I would have no idea how I would make ends meet to stay insured or what my lifestyle would be like, I imagine I would simply be working to maintain insurance and afraid to lose my job and try to have to pay COBRA till it ran out or I found another job with healthcare provided.
I don't worry about this but I've wondered "what if" about it and I don't know how some people survive.
posted by clanger at 4:46 PM on March 23 [16 favorites]

k8lin - this induction therapy, can anyone do it or can you only do it if you know when your transplant will be? By this I mean, having donations from your parents meant you were able to schedule your transplants ahead of time. If someone is on a waiting list where they could get say, a lung or a heart tomorrow or not until next year, can they still do the induction therapy or is that not an option? How long does induction take?
posted by IndigoRain at 7:43 PM on March 23 [1 favorite]

k8lin and clanger have already done a great job describing things, but I'll see if I can add anything.

I got my kidney as a cadaveric donation (remember to wear your motorcycle helmets... or don't, I suppose) shortly before I turned 30, and I've had it for six years now. Every once in a while, I think about the person who donated to me and their family, and I hope I've been able to make good use of the organ. I've taken it to four continents so far.

The great thing about getting a cadaveric transplant for kidney failure is that life before the transplant is miserable enough, that everything seems great in comparison. I went from full on dialysis to just wolfing down a handful of pills twice a day. Blood work is still monthly. Tacrolimus 1 mg 2x daily, azathioprine 125mg daily, prednisone 5mg daily, then Septra to stop bugs, vitamin D for the bones, a multivitamin, a blood pressure med, and sometimes stuff for my stomach. (I've actually had a run of bad luck with intestinal blockages, which are only tangentially related to my transplant.) The big side effect is I have had a tendency to gain weight, which was already a problem.

I don't take an awful lot in the way of precautions to avoid getting sick or whatever; my dosages are pretty low and my immune system seems to be able to fight it off -- that nasty flu that circulated everywhere in January only half-hit me, for instance. I had a couple of rough spots in the first year or so, including a CMV infection where I had to get valganciclovir pumped directly into my bloodstream with one of those portable pumps for six weeks. That was less fun.

My meds are fairly straightforward; I take them at 10 and 10, and if I'm travelling to the US for a couple of days, I just take a pill container. For overseas travel, I wind up with a gallon ziploc bag of pill bottles, which takes up a fair bit of my carryon.

One point of comparison is that I'm Canadian, so the insurance thing is not really as much of an issue for me. Here in Alberta at least (but I assume it's similar elsewhere), there is a special program for really expensive drugs that are necessary for life, which includes the Tacrolimus (as well as things like chemo meds). I have to pick it up at a hospital, but I can just call in and walk away with $2K or so in pills totally free. The others are normal pharmacy, Blue Cross type things. Because catastrophic medical issues are universally covered here, it's easy to get insurance that covers the gaps, like pharmacy, dental and optometry. I pay ~$50 a month for additional over my employer, as a belt-and-suspenders thing mostly. My transplant procedure and hospitalization cost the sum total of $35 out of pocket, that is, 5 days of TV rental at $7 a day. So I suppose you can guess what I think about universal health care.
posted by Homeboy Trouble at 8:11 PM on March 23 [10 favorites]

As I understand it, induction is done right before the transplant, so it works for deceased or live donors. Also, the literature seems to have shifted with respect to terms - cadaveric seems to be on the out and is being replaced with the word deceased. I'm not sure why.

Induction was explained to be as being like chemotherapy (and it is, in fact, as the drug they use is also used for leukemia), but when I had it it was just one big dose after they already put me under - I think. My memory of the procedure itself and surrounding days is a bit hazy.
posted by k8lin at 8:45 PM on March 23

To touch on the "how does your life change?" question: this entirely depends on what organ you're having transplanted, why you need a transplant, what kind of health you're in before the transplant, how long you've been waiting for a transplant (which, in most cases, is influenced most heavily by the area(s) you live/list in), and whether you have a living donor or get an organ from a deceased donor.

In many cases, the longer you have to wait for a transplant, the more your health declines as the organ that need replacing degrades. In the case of a kidney (my personal experience), you're on dialysis for as long as you're waiting for a kidney, unless you're very lucky. Life on dialysis can be much different from healthy life, and the differences between transplant dialysis life are most often positive changes.

There are clinical trials for transplant from living donors that involve pre-transplant procedures and, months or years after transplant, tapering of the anti-rejection drugs down to zero. I haven't looked into them too much, but I've heard of them, and they would presumably make transplant life easier - no pill popping or immune suppression.

Aside from that, I only have experience with pre-(kidney)-transplant life. If you have any questions about that, feel free to MeMail me.
posted by WasabiFlux at 8:54 PM on March 23

K8lin, thank you so much for the explanation. My partner has had three kidney transplants and had much the same experience as you describe, including induction treatment with a parent donor. I appreciated your perspective on what it was like to go through it.

The difference with his experience is that he requires use of a catheter for the washroom, and this makes him very prone to urinary tract infections. He is a bear when he gets them; I have just come off three nights sleeping by myself on the couch because he was so uncomfortable. He also has a fistula in his arm in case he needs dialysis again, and he is prone to arm cramps (especially when he eats salty foods) because there are vascular issues associated with that. These two things also make long car trips difficult. He needs recovery time if we have to go somewhere over an hour or so away.

He has learned to deal with the medication side effects, but he does find it hard to control his mood when he is compromised by excessive fatigue or not feeling well. It has been a learning process for me to figure out the warning signs and learn when to back off. Sometimes i have to eat my own needs if a health thing comes up, and I can do it---but I won't deny that it's hard sometimes. We've worked with his hospital therapist on this. I am allowed to be disappointed if something disappointing happens, and it doesn't make me a bad person who doesn't understand.

The only other issue I can think of off-hand has been that his ex-wife fought him hard for a share of his workplace life insurance policy. Since his condition precludes him from getting private coverage, the standard workplace policy isn the only one he has, or will have. So she fought him for it.
posted by JoannaC at 2:47 PM on March 24 [1 favorite]

Thanks to everyone who shared experiences! Thanks.
posted by jason's_planet at 5:44 PM on March 24

I can't believe no one has mentioned grapefruit! You can't eat grapefruit or pomegranate when you are taking Tacrolimus. If you really liked it. Too bad. Though it's a small price to pay to get a new, healthy organ.
Also you have to be careful of sun exposure. Skin cancer is a real threat when on the anti-rejection meds.
posted by hot_monster at 8:41 PM on March 24 [3 favorites]

My son had a liver/small bowel transplant at 11 months old. That was 10 years ago and at the time they had only been transplanting small bowels for about 10 years and were, I'm told, starting to get a bit better at it. He started with the same Prograf/CellCept/Prednisone regimen others have mentioned. For someone his age a big concern with the Prednisone and steroids in general is the osteopenia (brittle bones) it has caused. We're on the 4th or 5th broken bone that would likely not have happened without it.

At this point we still do the Prograf at .5mg 2x a day and we switched to Rapamune as a secondary after an acute rejection episode. Rejection hasn't been one of our biggest issues. Random intestinal bacteria and viruses have been a much larger concern. But this is due to the different organ transplanted. He also had an ostomy for the first few years which has now been taken down. That was quite the relief.

Again, given the small bowel being transplanted, nutrition is a constant struggle. He has a g-tube and gets the vast majority of his calories through it from formula. We have gone through several different kinds of formula to find one that seems to work and that he is not allergic to. He can still take oral nutrition but isn't yet willing to eat enough to make much of a difference.

Insurance is frustrating but things tend to work out in the end. Initially it was straight Medi-Cal and California Children's Services (CCS). Now we have Blue Cross and CCS as a secondary. Everything gets paid, but most providers seem to forget how it all works every 6 months or so.
posted by ericales at 12:09 AM on March 27 [2 favorites]

Forty years ago I shared a room on an obstetrics ward with a woman who was the first to give birth after having a kidney transplant. When I met her she was having her third and last child. She and her babies were all fine and healthy.
posted by mareli at 7:29 AM on April 5

Here is a friend's blog about her post-double lung transplant recovery.
posted by peagood at 8:05 AM on April 14 [1 favorite]

(Actually - here is Day 1, which is the best way to start reading it.)
posted by peagood at 8:11 AM on April 14 [1 favorite]