I received my first and only kidney transplant in 1995 when I was 21, and I've been taking anti-rejection meds (immunosuppressants) ever since. I have seen quite a few "I just got a kidney transplant this week" type AMAs, I thought it might be interesting and useful for people to get information from someone who has had a transplanted kidney for decades. If you just got a transplant, or you know someone who needs one, I can tell you all about the horrible drugs, the side effects, the long term issues, and quality of life issues you'll be looking at for the (hopefully) many decades ahead.

My Proof: https://i.imgur.com/0C7OWSm.jpg My current drug regimen.

Comments: 61 • Responses: 23  • Date: 

najing_ftw5 karma

So, you have 4 kidneys?

monkeynose13 karma

No, I have 2 - I was born with only one defective one, and I got a transplant. They only transplant one. You only need about 2% of a single kidney's function to live. The two you are born with are very redundant.

cleanlilboy3 karma

Is there any point in the future that you see being completely free of any side effects?

monkeynose6 karma

The day-to-day not feeling good side effects are mostly gone now that Gengraf has been established as the cyclosporine of choice - I think I started taking that around 2000. Before that was Neoral, and that had a lot of side effects - My skin felt tingly, physically felt a little weird - it felt "off" somehow, but now I don't really have any. Also the very low dose of prednisone also helped get rid of the side effects. Back when I was taking 20-30mg a day, it was brutal.

I think I started out taking about 20 pills a day, now I'm down to basically 10 immunosuppressant pills.

The other side effects, losing hair, permanent damage to your face (I looked like a different person within a year of my transplant - the prednisone and other drugs permanently change your face in a bad way.) chronic muscle fatigue, possible light cognitive effects of long term use of prednisone - none of that will probably ever go away. Although it is my understanding that nowadays they have an alternative to prednisone. Prednisone is the most destructive and terrible drug you can take, IMHO. 25 years on a corticosteroid is REALLY bad. But I'm sort of stuck with it because that's what I started with, and no one wants to risk switching me to whatever the current alternative is.

i_torogo2 karma

How long were you on 20-30 mg? I think I’m supposed to be on 5 mg prednisone a day only for life. Hoping the side effects aren’t as bad at this level.

monkeynose3 karma

It's been so long I can only guess, but I think I was on 50mg and tapered to 10 over a year, and then down to 5. So I've probably been on 5mg for 23-24 years out of 25. But I'm telling ya, prednisone is horrible. I've read studies about the long term effects of high doses of prednisone, but even at 5 mg, I feel like I've suffered some minor cognitive effects - I can't really concentrate or focus unless I'm extremely interested in what's going on, I literally forget words as I'm speaking, and my memory for detail is just not very good anymore. Nothing major, but it's enough that I notice it.

Also there's the weight issue. If I eat over 2000 calories a day, I gain weight. No joke. I restrict myself to 1800 calories a day 5 days a week, otherwise I'll gain 10 pounds in a month. It's insane. I'm normal weight but it takes me 5x the effort of a regular person.

i_torogo2 karma

My doctor talked about going down to 2.5 mg or maybe eliminating all together. I understand some hospitals have eliminated it from their regimen but being younger I’m also at higher risk for rejection. That’s why I’m still taking it. I’ve heard it can make you gain weight too, haven’t experienced it myself yet. Sounds like you have it under control but it takes a lot of work. I’m glad for you.

monkeynose1 karma

I mean, if you don't have to take it, I'd talk to your doctor about it. Prednisone is just horrible. I have been told it's mostly replaced by CellCept now, but my dr. doesn't really want to switch me over since it ain't broke he don't want to fix it, I guess.

carolathome1 karma

I take cel-cept, tacrolimus and 5mg Prednisone. I don't feel that much different than before the transplant in 2015. I was 63 yo then and 68 now. Getting old of course. My knees feel it most, but I wouldn't say much else changed. Maybe you could get a 2nd opinion about your medication regimen. It can be gradually changed. I don't know if your symptoms indicate "if it ain't broke". Good luck to you.

monkeynose2 karma

Maybe we're all stuck with prednisone. I dunno, I'm just not a fan.

G1NKAKUU1 karma

What is the medication that you think made you lose your hair? I had a bone marrow transplant back in April 2019 and I’ve been on advagraph and high dose of prednisone for about 4-5 months. Now I’m free of the prednisone (thank god) but my hair will not grow back.

monkeynose2 karma

Cyclosporine is a big one, I was also on Azathioprine for many years, which also probably did it. Not sure about prednisone, that was sort of the least of the side effects of that one, if at all. As an added side benefit, the outsides of my ears and nose grow hair, which I have to shave. Yay!

G1NKAKUU1 karma

Haha same for me got ridiculous amount of hair on my ears and on my back. I was taking 60mg of prednisone when I developed graft vs host disease. I also got moon face and took a lot of weight from it. Horrible times. Now I cannot concentrate and I really suffer from mood swings. I hope everything is good for you.

monkeynose1 karma

Well, we can agree that prednisone is terrible. I never got mood swings, but my concentration is out the window.

youngestm3 karma

I donated a kidney 3 years ago and the recipient drinks all the time. I suspect that my kidney wont keep him alive as long as you. Do you still have a relationship with your donor?

monkeynose2 karma

Drinking is only an issue because it reduces the amount of immunosuppresant drugs in your system, and you'd have to drink close to daily for a long time to be impacted (per one of my doctors). Alcohol doesn't affect the kidneys. I drink every now and then, it doesn't really do anything. The donor is a family member, so yes.

i_torogo3 karma

Did a relative donate to you or stranger? I recently received a kidney transplant through paired exchange from a stranger and I’m afraid it won’t last as long.

monkeynose3 karma

Relative, and a very, very good genetic match - just by random chance. So I probably have a little bit more leeway than average, but according to my doctor with the medications these days, really the reasons for failure are either other health problems getting the way, or surprisingly people not taking their meds. Which blows my mind, I mean, every now and then I'll forget to take meds in the morning, maybe 2 times a month, but I have never missed 2 consecutive doses in 25 years. And for anyone who doesn't know, you have to take meds every 12 hours forever. I would say it's a pain, but my god I've done it for so long I don't even notice anymore.

Rabid-Noob4 karma

I would be reluctant telling people that as long as you always take your medications and never develop any other health problems you will avoid rejection/failure. Kidney transplants very much have life expectancies. About 8-12 years for a deceased donor and around 20 for a living donor on average. I’m going into year 8 of a deceased donor and just like that a year ago I went from an almost impossibly perfect case to suddenly rejecting my transplant with two types of rejection. I have always been healthy, never smoked, drank maybe 2-3 times a year, had an active job that was good for keeping me fit, and would maybe miss one dose of medications two or three times a year.

I’m not saying long lasting transplants like yours are impossible. In fact one of my doctors has a patient who last I knew was going on 35 years with theirs. But they had the perfect scenario like you; living donor, relative, and an excellent match up. I just feel getting people’s hopes up by telling them that as long as you do all of this you’ll have no worries isn’t the best. When my rejection was first noticed I kept asking my doctors what I possibly could have done wrong so suddenly and they reassured me that it just happens sometimes.

But on a more positive note it’s amazing to hear about how well yours has been!

monkeynose2 karma

Sorry to hear that, that's just what my doctor has told me, and I prefaced it with that. I'm definitely not giving medical advice or my own opinion.

i_torogo1 karma

My doctor said something similar about people not taking meds. I would love to get 25 years, I’m 35 now. There are a lot of meds but I’m already used to it and side effects have been pretty minimal for me so far. Hoping for the best. Thanks for your reply!

monkeynose2 karma

The worst effects of prednisone on your face are probably a lot less noticeable if you start at that age. I started at 21, so it really changed and affected my face since I wasn't really an adult yet. And the cognitive effects, who knows. I was always sort of ADD anyway.

provocatrixless2 karma

How badly do the suppressants interfere with your ability to fight ordinary things like sicknesses or infections?

monkeynose1 karma

I don't tend to get sick more often than regular people, but when I do get sick I'm sick for about three times as long. If I get a bad cold, it takes about 3 weeks to get over it.

Late_Night_Retro2 karma

How long is it supposed to last?

monkeynose9 karma

According to my doctor, forever, as long as I don't start getting other health issues like diabetes and high blood pressure, pretty much until I die of other causes (most likely cancer TBH because of the immunosuppression). But my health has always been good other than the destructive effects of the medications, (I was perfectly healthy when my kidneys failed, it was just some random genetic thing).

zoinks4 karma

I wonder if, weirdly, this could end up extending your lifespan. You're probably much more aware of your diet and bodily health than an average person, visit a doctor more often, etc.

monkeynose6 karma

That's what they say about people with HIV now, but in the case of a transplant, I'd say maybe, maybe not. I've already had internal cancer once and multiple bouts of non-melanoma skin cancer because of the immunosuppression, and the meds also cause osteoporosis and other long term issues, and hey, if the cancer doesn't get me, with the increase in anti-vax morons reducing herd immunity (which everyone who is immunosupressed rely on), I'll probably end up dying from measles or polio.

The meds taken for decades are really, really not good for you. You are sort of extending your life at a cost to long term health. I mean, otherwise I'm a lot more aware of my weight, cholesterol and blood pressure, so maybe...?

DeusSpaghetti3 karma

Average lifespan of a donated kidney is 15 years and going up steadily due to better medication, understanding etc. Current record is over 40 years i think.

monkeynose2 karma

The actual average length has never been clear to me, I can only go by what my doctor has said, but he does have one patient who has had her kidney for about 46 years this year. He has told me that with current medications, theoretically the length should be indefinite, and that on average most people eventually lose their kidney because of co-occuring medical issues, or not taking their meds. But, as someone else pointed out here, it's all case by case, and people should just ask their doctor about their specific situation. Again, just per my doctor, but he has said that most people lose it before the 5 year mark, and if one makes it over the 5 year mark, the lifespan tends to go up dramatically. I'm actually glad the internet didn't exist (at least barely) when I first got the transplant, because I really didn't think to look into detail about how long a transplant was supposed to last until around 2007, 11 years after the transplant. And once I was already at that point, it seemed that it was going to last in my case. But I don't tend to worry about that sort of thing anyway. When you have a transplant, it's like you're living permanently on a rolling 7 days before rejection. In my case that 7 days just hasn't arrived yet. But my philosophy is that I feel fine right now, and I'll probably be OK tomorrow, so why worry?

foxtailavenger2 karma

Why did it take so long? Does the world feel different from when you went in? And which of these changes were the hardest to adapt to?

In all seriousness, how has the quality of life been since the transplant and what are the biggest inconveniences you face daily as a result of this?

monkeynose8 karma

I got my kidney transplant before my actual kidney completely failed due to living donor, so it didn't take long at all, it was pre-emptive.

All of my adult years have been with a kidney transplant, I never really got to live adult life without it, so I don't really know. The worst part of it is that basically it's like living life underwater in scuba gear - I have to take meds every single day, twice a day. I have to plan trips and pretty much everything else around it. I can't live overseas even though I have wanted to my entire life because the meds are insanely expensive, and I need bloodwork and doctor appointments at least 3 times per year. I travel overseas at least once a year for a couple weeks for my job, so I at least am able to get out every now and then.

Also, the fact that health insurance is tied to employment in the USA is absolutely criminal. In the past I have had to suffer terribly in horrible jobs just because I needed health insurance. My life literally depended on it. It prevented me from really living life the way I wanted, prevented me from taking chances doing creative and interesting alternative to holding crappy jobs all because of my reliance on health insurance. Basically I didn't get to live life the way I wanted. It's fine, but I would have lived a different life, that's one thing I'm sure of, if I didn't have health issues.

Daily I don't really have any inconveniences, although the damage to my body from the medications is sort of a philosophical inconvenience to me.

magellan3151 karma

I am listed for a kidney transplant. Has ObamaCare made it easier for you to get insurance?

monkeynose1 karma

I've never not had insurance. I've always worked full time since getting the transplant, and so have always had insurance through an employer. Maybe if something like that existed 25 years ago, I would have had a little more freedom, but I don't know.

CleverOctopi2 karma

I will be hitting my 3 year mark in April, so it's nice to see someone making it this long without to much issues. Was there any certain reason you were out on these anti rejection meds?

They have me on myfortic acid and tacrolimus, but never explained why those meds. It is interesting to see that Prednisone is a standard though.

monkeynose1 karma

I'm basically on updated versions of the same meds I was on in 1995. I'm not completely sure, but I don't think Tacrolimus even existed back then, same with myfortic acid. So they sort of kept me on what has been working for me. I was also on Imuran/azathiaprine for years, but was taken off it after I had cancer, as apparently that can cause it.

whitij2 karma

Do you ever miss a dose of your antirejection meds by accident, and what happens if you do?

monkeynose2 karma

Once or twice a month I probably miss one (I take them every 12 hours every day - and if I miss one, it's always the morning dose), but I have never missed 2 in a row. There is no effect that I have ever experienced.

swingerofbirch1 karma

I saw one of your meds is sodium bicarbonate, which I believe is baking soda. What does it do for your body? Have you ever run out and used baking soda from the box?

DeusSpaghetti1 karma

It's an antacids, people sometimes get heartburn, stomach ulcers etc from some of the drugs and it's to counteract that. I was on it for a while but with no digestive issues i got to stop using it.

monkeynose1 karma

That's actually not why I'm on it, although the specific reason isn't clear to me, something about blood acidity. I'm at the point where if they give it, I'll take it.

monkeynose1 karma

Heh,, I didn't even know that. Actually, I'm honestly not even sure, something about reducing acidity in the blood or something. I've only been taking it for maybe 10 years I think.

norflagator1 karma

How are those immunosuppressants?

monkeynose3 karma

They suck, but the alternative is probably worse. I don't really have day to day side effects, or I've been taking them so long I don't notice.

norflagator1 karma

Hopefully they don’t cost you much, big pharma tends to fuck people. Glad everything is good with your transplant buddy. Thanks for the AMA

monkeynose2 karma

I get everything in three month batches, I think it costs around $80-100 every batch. I don't really pay attention to it, but I have solid private health insurance, which helps - they realize that paying for the meds is cheaper than letting someone go into kidney failure. So it makes financial sense for them to keep it affordable.