Post-Transplant (in some ways) has become worse than pre.

[The_Vincester]

It's been almost a year since my transplant. I don't think I would trade it to go back, but sometimes I wonder...

Since my transplant I've developed horrible neuropathy in my legs and feet. The rejection drugs cause diabetes, but the endocrinologist says the neuropathy is from that because of the timeframe, that I have a severe case that is of someone who has been a diabetic for 20 years. He says it's also the rejection drugs. My nephrologist says it's not the rejection drugs. In other words - no one knows.

I struggle to walk. It hurts so bad at times that I just CAN'T walk. While on PD, I never had this issue and was fully mobile - pretty active, really. Now, I feel stuck - gaining weight at an alarming pace through inactivity. This causes depression, anxiety, and simply compounds on itself. I actually feel worse now than I did on PD! I love not being on dialysis on PD, though - I got an entire room back in my house and can sleep normally again, but it's certainly not the miracle I thought it would be.

I don't know what to do anymore.

[Deanne]

I understand. I'm four months post-transplant and have had many struggles, too. I think you win the contest that no one wants to win on the awfulness level though. 

I can't walk in the mornings until I take a Vicodin and my daily dose of prednisone. My issues are due to prednisone. Are you on prednisone, too? Why is your transplant center saying your issues aren't from the medications? I know some of the anti-rejection medications *do* cause neuropathy, and I know that prednisone causes diabetes. If tne neuropathy is from diabetes, then prednisone can be blamed for that, too. Are your doctors just telling you that it isn't from the medications to make you keep taking them? Have they tried other forms of the medications?

I think there does come a point when we have to ask if it's worth it. If we give up our ability to live a happy life to make these kidneys happy, then what have we really gained? A kidney that's attached to a body that can't get off the couch? The only ones who'd end up happy would be the transplant centers for maintaining their good statistics.

[Litegirl]

Are your doctors just telling you that it isn't from the medications to make you keep taking them? Have they tried other forms of the medications?

Yes. I can relate to this. The doctors are reluctant to tell and write the truth about the anti-rejection medications' side effects.

I think there does come a point when we have to ask if it's worth it. If we give up our ability to live a happy life to make these kidneys happy, then what have we really gained? A kidney that's attached to a body that can't get off the couch? The only ones who'd end up happy would be the transplant centers for maintaining their good statistics.

The last point is the main reason why the doctors don't  document the side effects of the immunosuppressive drugs. The doctors keep statistics and pharmaceutical companies happy in return for some favours as well.
But we have to be honest as well, there are 3 ways only to survive  for people with CKD - dialysis, kidney transplant and the last one way which we want to postpone as long as we can.
Some people feel just fine after kidney transplant, others have major side effects. No one can predict what happens after the operation unfortunately. But usually the first post-transplant year is the most challenging. Later the body get adapted to the medications and life gets better as well.
The Vincester, keep fighting and stay strong please. Ask your doctors to try some meds for your pain relief.  Also probably one of your suspected drugs could be swapped for another one.
Ask your nephrologists if it would be possible to try another anti-rejection drug later.

[The_Vincester]

Are you on prednisone, too? Why is your transplant center saying your issues aren't from the medications?

I'm not on prednisone, which I'm happy about. I do not react well to it. They don't really give a reason, more of a "I know best" thing from the doctor. Yet he acts like I'm an unusual case - but a simple Google search shows I'm not alone.

I think there does come a point when we have to ask if it's worth it.

I feel like it's probably all "worth" it in the end. I'll take the extra years living on the couch - just for my daughter.

Today I wrote my coordinator and doctor to demand action.  Would Rapamune be better over Tacrolimus (which is the drug causing my diabetes AND neuropathy)? Tell me why or why not. I am willing to take a little risk at this point.

There is a little hitch in all of this. I had my transplant in another state, and my doctor doesn't seem like he's willing to go against the doctor who did the transplant, who I can't get ahold of. I may just have to switch doctors or something, I don't know, but I refuse to live like this.

[obsidianom]

One way to get their attention may be to threaten to stop all the anti rejection meds. That may get some action as it upsets them to lose a kidney. No doctor should be allowed to let you suffer like this without trying other therapies.  Dont you stand for it either.
On another note, this is why my wife and I chose to not go the transplant route and stay with hemodialysis at home. Her brother offered his kidney but we decided against it. We didnt want to chance all the meds and side effects.
I wish you well with your struggles.   

[Litegirl]

The Vincester, how do you react on Prednisone? No one could tell you how you would react on Sirolimus. Kidney transplant surgery is always a lottery game. A transplant is a treatment for kidney failure but is not a cure. A transplant potentially offers a more active life and a longer life, free from dialysis as well as dietary rectrictions. But the doctors don't tell beforehand about possible severe side effects of the drugs.

Tacrolimus is 10-100 times stronger that Sirolimus. So the latter is not given to the recipients with high-risk kidney rejection. 
Just because Sirolimus is weaker that Tacrolimus it is prescribed together with Prednisone and Mycophenollate Mofetil.  Try to discuss all possible treatments for your neuropathy first.
The article sounds promising but no one actually can tell how your body would tolerate Sirolimus http://ckj.oxfordjournals.org/content/5/4/323.full

I developed pulmonary embolism and pulmonary toxicity because of Sirolimus. But I could not tolerate Tacrolimus and Cyclosporine at all because of drug-induced asthma.

[MooseMom]

I'm really sorry you are having such difficulty and hope that once you've reached the one year post-tx mark, things will markedly improve.

I also hope that your tx team will listen to your concerns and will take swift action.

[kristina]

I am very sorry to read the problems you have with these immunosuppressants
and I do hope very much, you find medical help soon.

It suddenly occurred to me whether it might be advantageous for a female to have a transplant
after the menopause because perhaps there isn't such a strong hormonal element
which might interact with the transplant medication?

I wonder whether there has been any research done on this?

[jeannea]

Did they give you any medicine for the neuropathy? Gabapentin helps me with it. It does hurt like hell. I'm confused by the diabetes. You say you were a diabetic for 20 years and also say that Prograf causes diabetes. I don't believe Prograf can cause diabetes. I don't know if it can make it worse. I was always told that prednisone was the drug to cause or worsen diabetes. The problem with your neuropathy is it can come from both diabetes and Prograf. Unfortunately, it sounds like you could be having the cumulative effects of having diabetes for that long. As you know, diabetes is very damaging. You should have medicine for the neuropathy. If you have some and it doesn't help, ask for more or a different one.

It is very true that transplant is not a cure. It is a treatment and comes with it's own set of problems. Doctors can be unhelpful. One told me my prednisone dose was low so I couldn't have any side effects. Bull. But it really doesn't matter what caused your neuropathy. They still need to treat it. If you're having trouble controlling your sugars, I would work on that too.

Good luck. I hope it gets better.

[jeannea]

Kristina, I have to tell you the hormone thing is complicated. I have never had enough estrogen due to my kidney disease. But this last transplant must have been a young kidney because it has changed everything with my hormones. You never know what the effects will be.

[kristina]

Thank you for your information, Jeannea.
I was wondering about this question for years and have also tried to ask doctors ...
unfortunately our "hormonal household" seems to be a bit of tabu...
but from my reading I have gathered that "older" male and females patients
seem to have less problems with transplants from a certain age onwards
and I wondered whether or not it was connected to their hormons...
Thanks for sharing your feelings about this.
Many thanks and best wishes from Kristina.

[DeadAlive]

It's been almost a year since my transplant. I don't think I would trade it to go back, but sometimes I wonder...

Since my transplant I've developed horrible neuropathy in my legs and feet. The rejection drugs cause diabetes, but the endocrinologist says the neuropathy is from that because of the timeframe, that I have a severe case that is of someone who has been a diabetic for 20 years. He says it's also the rejection drugs. My nephrologist says it's not the rejection drugs. In other words - no one knows.

I struggle to walk. It hurts so bad at times that I just CAN'T walk. While on PD, I never had this issue and was fully mobile - pretty active, really. Now, I feel stuck - gaining weight at an alarming pace through inactivity. This causes depression, anxiety, and simply compounds on itself. I actually feel worse now than I did on PD! I love not being on dialysis on PD, though - I got an entire room back in my house and can sleep normally again, but it's certainly not the miracle I thought it would be.

I don't know what to do anymore.

Sorry to hear about this issue, i hope there is a way to resolve it for you with medication. Its hard when having a transplant makes you less physically able to do things, for example enjoy a day out at the theme park or sea side, or spend a day out stood on your feet (a nice walk, day out at the races).

Its nice not having to spend so much time on dialysis but ..... when all these other things appear post transplant, they can limit your life just as much, in other ways.

After my transplant i could not stand on my feet for longer than a few hours before the pain become too much, i couldn't go on the walks like i could as a dialysis patient, i couldn't enjoy a full day out doing anything on my feet after transplant. As a dialysis patient i was physically able to spend all day on my feet and enjoy my days off.

After 4 years of pain my tranplant failed ..... i re started dialysis, got the dead tranplant removed (by now it was internal bleeding bad, i was pissing out pure blood) ..... came off all the transplant drugs, got myself "well" on dialysis again and just started enjoying my days off again ..... i can physically handle days out on my feet again and my body has gone back to "normal".

I can't work out which is best for me, dialysis or transplant. I have no doubt that for some people dialysis is best, for others transplant is best.

life is pointless if you can't live. A life of only suffering is torture.

In my case transplant is not a good solution, it was brutal and not worth the 4 years i got off dialysis. I almost died through internal bleeding from it near the end when it failed.

Im 34 yr old, been back on dialysis for 2 years ..... i am not back on the transplant list and have no intentions of going back on it.


Like i said buddy, i hope you get something to help you out so you can do more and suffer less pain. Don't stop trying to improve your life, be it meds, new hobbies, new diet, new doctor .... don't give up trying.

[Chris]

After 14 years I still sometimes think I wish I was back on dialysis due to other things that have occurred. Although that would mean I would not have had the pancreas transplant to. There are positives and negatives of having a transplant. Some of which was discussed in my centers information seminar, while others were never mentioned and I sometimes wonder why they didn't keep an eye on somethings that they knew could happen until it was to late. It has been a rough and rocky road for me, but in the end I would not have changed a thing of having my transplant. Being more knowledgeable, proactive medically though YES. I wish I had pictures of my transplant, I can not find one book or online photos of a simultaneous kidney and pancreas transplant surgery.