Further questions about transplants...

[kristina]

Is there any indication prior to kidney transplant to indicate
whether a recipient might have any sort of complications afterwards?

For example, could a chronic kidney disease which caused the kidneys to fail
re-appear in the donated kidney after transplant?

Or, for example, if one suffers from Systemic Lupus, which led to kidney failure
cause the donated kidney to also suffer from kidney failure?

Are there any other signs that may indicate a problem for the donated kdiney after transplant?

Does anyone know?

Thanks from Kristina.

[MooseMom]

Kristina, this may help if you can manage to plod your way through it.  The abstract itself gives you a general answer, specifically the last sentence.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152228/

[Speedy1wrc]

Beyond the abstract there is more at stake than just the kidney. For example I was CMV negative prior to the transplant while the donated kidney was CMV positive. I was on an antiviral for some time and when they weaned me off I did end up with CMV. It wasn't terribly pleasant. Never considered something like that in advance. The abstract hopefully answers more questions for you.

[Ninanna]

The thing about complications is you just never know.

I know I thought I would fair pretty well because I was pretty healthy and it was a pre-emptive tx, and I was young, etc etc.  However I have had issues that no one really could have foreseen, particularly my horrible reaction to tacro.

I think Deanne feels the same as well.

[kristina]

Thank you MooseMom for the very detailed abstract, it is very much appreciated
and I shall study it in detail to work out the most important points for me as a patient...

Thank you Speedy1wrc for sharing your experiences...
I have read how difficult CMV can become, especially when it was not expected...
I do hope, you and your transplanted kidney have recovered well?

Thank you Ninnana for your thoughts...
I am not looking forward to the immunosuppressant medications
and I just hope that I don't have bad reactions as I have done with many medications in the past
because of my drug-intolerance and many allergies...

Thanks again from Kristina.

[Angiepkd]

When I was researching transplants, I found the CMV and EBV status of donor and recipient could be very important in determining how the recipient does after tx.  It was something I checked on with each of my donors that was deemed a potential match for me.  Luckily, my husband donor and I were both CMV negative and EBV positive.  My coordinator told me the best scenario would be donor and recipient both testing positive for both.  So far, 4 months out, I haven't had any issues, and only had to take Valtrex for 30 days after tx, instead of Valcyte for 90 days.  In general, I feel my transplant center was very thorough in looking at things that could impact the success of my transplant.  They did several tests that some transplant centers don't require.  It was all so aggravating during the work up, but now make more sense to me.  I think centers do everything possible to have a good outcome, but can't foresee every problem that could arise.  That is part of the reason transplant should always be looked at as a treatment, not a cure.  I finally decided to take a chance on a better life, and so far it has been a gamble worth taking.  Good luck to you!

[lainiepop]

As I was told, they just don't know, likewise they dont know always why one kidney lasts 40 yrs and another 4 weeks. I was high risk for complications as i was born with no bladder and when i was 8 they built me a bladder from bowel, the issue was the position of my bladder, they have put my transplanted kidney underneath it. It has worked amazingly and while i have had hiccups afterwards, none were kidney related. I am CMV negative, my dad was CMV+, but my surgeon told me due to my age , it would be far better for me to get a pre-emptive good match live dna related donor, as they could control and monitor for cmv. They really wanted to do it pre-emptive due to my bladder situation and so the urologist was there too. You're most likely to get CMV the first 3mths post tx, so they had me on preventative drugs then. 6 mths post tx i ended up vomiting and having a seizure, they thought it must be cmv but it wasn't. A couple months later a random CMV test showed i had it but i had no symptoms, creatinine was stable and i was not ill, they couldnt understand it, and then a few weeks late a repeat test showed it had gone. They said my immune system can obviously still fight a bit! So you really dont know in short and nor do they, some people need more drugs to suppress their immune systems, others need less, sometimes this can depend on the kidney match and how well the body 'takes' to it i guess, but they cant predict any of that. Everyone reacts differently to everything and i guess its a gamble but one i had to take!
Concerning the CMV, i only remember them actually saying to me about it after the tx when i asked what the big antibiotic drug was for lol. They said it is v common as most people over 40 would have had cmv in their system, so perhaps my hubby wouldnt have had it, but they wanted a dna related donor if poss, which thanks to my dad it was.
I would say it is worth all the risks, after all everythings a risk, i wouldnt say ive had more general illness and when i had the tx my kids had just turned 1 and 4 and got chicken pox a few mths later, my son has stayed off school several times for sickness or fever and i have been ok. Nobody knows.
What i find the hardest is the worry, i am a natural worrier, so now if i feel slightly off im stressed the kidney is failing. I was getting over this (am just 2yrs post tx), but had an emergency op 6 weeks ago as my bowel had twisted around old scar tissue so they needed to remove that and sew back up) and kidney is still fab, but in myself i am sore and tired, feel back to square one, it's 3 months recovery, is way worse op than the tx, and i feel it's mentally set me back. There is deifintely a mental side of transplant too!

[jeannea]

Lainiepop, you are so right! It's unfortunately unpredictable. But I still think it was worth it even with my CMV problems.

[Speedy1wrc]

Indeed they never told me about CMV till they were ready to wheel me down the hall. I was on Valcyte for 3 months and the CMV hit shortly thereafter. They restarted me on a lower dose of Valcyte to fight it but also allow me to fight it too. I got through it.

Unfortunately from complications early, my transplants were damaged . Specifically a nurse who didn't read the surgeons notes on the cover of my chart. My Hgb went deathly low and I started to bleed out. It turns out I was allergic to the Heparin and had to be rushed back into surgery to stop all the bleeding. Several years down the road I contracted Swine flu  for which they treated me with Tamiflu. The very next day my pancreas failed. I had to have surgery to have it removed which caused more stress on my kidney. A second operation to fix my bowels which they screwed up during that surgery nearly wiped my kidney out. Every turn my creatinine would jump a point or two. Finally it gave out and now I'm back on dialysis.

I'm back on the list. In the meanwhile the whole transplant department has been redone top to bottom. Two hospitals merged and the majority of the department is from the other hospital. I keep my fingers crossed and keep watching the list and waiting for my phone to ring. We all hold out hope for that day.

[kristina]

Thank you Angiepkd. I realize how important CMV and EBV status is and I shall check it up and keep my eyes open...
...I can understand that the work-up before a transplant can be very aggravating, especially as we don’t know, whether or not we have a chance ”to pass all the tests”...
...Thanks for your good wishes and I do hope you keep lucky with the gift of your husband and I send you my best wishes, Kristina.

Thanks Iainiepop, it is so true: no one knows why one transplanted kidney may last 40 years and another only 4 weeks and that is the devastating gamble,
as we put so much of our emotional hope for survival into it...
...I am now emotionally prepared to take on the gamble, start the ball rolling and try to make the best of it ... and perhaps I am lucky ...
I do hope you make a good recovery from your latest set-back and I do hope you keep strong and recover well... Best wishes from Kristina.

Thank you Jeannea, it is true: the issues with a transplant are greatly unpredictable ...

I am very sorry for the bad luck you have experienced, Speedy1wrc and I do hope your new hospital brings you better luck in the future ...
...I am glad that you are back on the list again and that your hospital has improved...
... I keep my fingers crossed that your phone rings soon and that this time it is “the real thing” and will give you many years of improved quality of life...

Thanks again and best wishes from Kristina.

[Deanne]

Speedy1wrc, I don't know how you kept your sanity through all of that!

I'd forgotten about the potential for CMV. This is one thing I was very lucky about. I'm CMV- and my donor was CMV-, too. I was very lucky and thankful for this. I don't remember hearing anything about EBV. I don't know if that means they didn't test for it, or if everything was negative so they just didn't mention it.

I love your questions kristina. I learn a lot from them.

[Ninanna]

The only thing I know about EBV is that if you are negative as a recipient there is a higher chance of developing cancers like non-Hodgkins Lymphoma.  I did a little research on cancer after tx when I found out the reason my bone marrow doctor was involved in this trial was because he he would see solid organ tx patients develop cancer, and his words were, "and I noticed that as time went on, my Bone marrow transplant cancer patients would look better and better over time, while my cancer patients that had a solid organ tx looked worse and worse over time."

It was actually a requirement of my trial that myself and my donor be EBV+

[kristina]

Thank you Deanne. Perhaps you had a check-up about EBV and they did not tell you because it was alright...
I have noticed that whenever certain aspects of my blood samples etc. are not being mentioned, they are always perfectly normal ...

Thank you Ninanna... What did the bone marrow doctor mean, when he said that he "noticed as time went on,
that bone marrow transplant cancer patients would look better over time, while cancer patients with solid organ tx looked worse over time..."
Did he mean that there is a greater successrate with bone marrow transplants in cancer patients and as a result of the medical success patients look better...
... or did he mean that solid organ transplants had a more devastating effect on "non-cancer" patients?
Or did he "only" talk about organ transplants on cancer patients ?

Thanks again from Kristina.

[Ninanna]

Well if my BMT doctor sees someone with a solid organ transplant it means they have cancer. What he was alluding too was that the long term damage from immuno suppressive medications that solid organ transplant patients have to take the rest of their lives has a toll on them as time goes on. His other cancer patients do not need life long immuno suppression, and thus over time look healthier and healthier the better they get from the cancer, unlike his cancer patients who are immuno suppressed.

The chances of getting cancer from immuno suppression is low (1-5%, not including skin cancer) but it's not insignificant either.
I hope that explained it better.

[Speedy1wrc]

I was diagnosed with skin cancer post transplant. The oncologist felt it was "typical" being a transplant patient.

Kristina I have not kept my sanity, I just hide the fact that I am as nutty as a loon.

[kristina]

Thank you Ninanna for your explanation. I can understand the logic of your BMT doctor much better now..
... it also makes sense, because "ordinary" cancer patients "only" have to get over the cancer-issues to get better,
whereas transplanted cancer patients carry on their struggle with the long-term effects of immunosupressants
plus their struggle to recover from cancer...

Thanks again Speedy1wrc. I am  very sorry for what you had to put up with...
... and I can well imagine what a challenge it can be to keep out of the sun during the summer months...
... But I don't think you will ever have any problems with your sanity... you are doing quite well !

Best wishes and thanks again from Kristina.

[Speedy1wrc]

Kristina, thank you. Always a kind word.