Failing kidney transplant

[Sugarlump]

Hi folks just over 6 months since my transplant and i'm losing the kidney...at 6 weeks i got CMV then mild rejection...a month later aute rejection that didn't respond to steriods...then they
found anti-bodies and tried plasma exchange. Didn't work either. Last biopsy showed damage to kidney and positive BK infection whatever that is. They've stopped my cyclosporin to allow my body to fight infection but say i'll lose kidney either now or over next few months. Creatinine already 440 odd. I say i'm coping but i'm devastated. I feel crap all the time and i've spent so much time in hospital my kids and dog have forgotten who i am.
How do you face going back on dialysis again (I was 3 yrs prior to transplant)?
How do you cope with the thought of another attempt at transplant?

[okarol]

          
Aww Sugarlump, I am so sad to hear all you've been through.
It just is tragic, the short lived transplant and all the trauma you've endured.
I am so very sorry and sending you love and hugs.

There's more about CMV and BK virus here http://ihatedialysis.com/forum/index.php?topic=8039.0

I hope others who have been through this will post. I have no answers but I do know that sadly sometimes transplants don't work out. I wish there was a better way that could guarantee success, but for now they don't really know who will keep a kidney and who will reject. Hang in there. We are here for you.

[paris]

I am sorry.  This isn't the way it is suppose to be.  It all must feel so overwhelming.  I have no answers, but I'll say lots of prayers for you.   

[Sugarlump]

Thank you for both of your messages of support.
it does help to be able to rant a bit... i feel as if ii's robbed me of my optimism for the future. Before when i was on dialysis i was always going to be 'rescued' by a transplant and
now the thought of another transplant horrifies me. They've told me i'm likely to have problems with future translants but not impossible but ...

[Romona]

  My prayers are with you too.

[monrein]

Sugarlump, I'm so sorry you've had such a horrible and depressing experience.  I too am back on dialysis after a transplant but my story is very different as mine lasted a long time (23 years) and so I can't say I know how you feel because that would be very disrespectful.  Your experience is however something that I worried about and tried to prepare myself for because I know we can't count on anything.

I really do know what you mean (and so do many, almost all, of us here) though when you say you feel like crap.  I felt wretched as my trx failed and depressed and super sad.  I'm now doing daily hemo (2and 1/2 hours per day, 5 days per week) at a self-care clinic and hoping to have another transplant.  I am nervous, I worry about a bad outcome, I get scared and then I try to take it day by day and keep my hope that things will work out.  If it doesn't work out I'll probably go for home nocturnal down the road.

Please come here as often as you want or need to and I'm sorry that we meet under these circumstances but you are among understanding friends here and I hope that we can collectively help to lend you some support and caring thoughts.

Hugs
Gail

[Joe Paul]

Sorry Sugarlump

[Sugarlump]

Thanks. I've been 'pretending' to my familly i'm coping.
It's a difficult subject to talk openly about except among people who understand kidney failure.
I also feel guilty towards my unknown donor and his family for not being able to keep the kidney...

[twirl]

Sugarlump--- cute name
you have nothing to feel guilty about
I am praying for you
hope things get better

[donnia]

                      

I am 3 months post tx so I don't have any information for you, but I wish I could give you a great big hug and let you rant rant rant! Please do rant.  We are here for you to voice your concerns!  I am praying that the doctors are wrong and your kidney will fight back and be saved.  Please keep us updated.

             

[lola]

 

[petey]

sugarlump--
My husband Marvin was on hemo dialysis for 5 1/2 years the first time.  I was tested to see if I could be his donor the day he started that first treatment in March of 1995; we were a "low" match (1 out of 6).  The doctors said, "No, he'll likely reject your kidney."  So the poor man suffered through over five years, and it was extremely difficult for him.  Every year at his transplant evaluation (to stay on the UNOS list), I'd tell his neph, "You know I am a one-out-of-six match."  Finally, after years and years of pestering them and after showing them all the research I could find that anti-rejection meds had come so far since 1995, his hospital agreed to give my kidney a shot.  We were the first "low" match transplant they tried (and I think they were looking for experimental transplants, but, hey, we didn't care).  I can never begin to tell you how wonderful that experience was for me and for Marvin (July of 2000).

For three years, life was so gooooood.  Marvin took good care of himself, went back to work, stayed busy every minute he could, and thoroughly enjoyed his new "life," --  and we said we'd surpass those statistics that said a healthy living donor transplant could last 15 years!  We knew our luck had changed.  We knew the gods were smiling at us.  At Marvin's three-year check-up, his labs looked off.  A week later, they were even worse.  A biopsy was ordered, and the "new" kidney (my/his/ours) had contracted the same disease that had destroyed his original kidneys -- IGA Nephropathy.  We were heart-broken, to say the least, and we were not at all prepared for this to happen so soon.  That old kidney held on (barely) for another three months before it gave out.  In October of 2003, Marvin had to go back on dialysis.  We couldn't believe it!  I was angry, depressed, weepy, mad, sad, devastated, and bitter -- mostly at God and how He could let this happen to us again -- as if once was not enough!!!!!   Marvin was optimistic and said simply, "I've been there before, and, no, it wasn't pleasant, but I can get through it."  The whole time we knew dialysis was coming again, I was so worried about Marvin -- and he was worried about me.  He apologized again and again; he said, "I hate that you went through the surgery, gave up a piece of yourself, and I didn't get a long life out of it."  I never, never, never regretted being his donor -- even if it had only kept him off dialysis for three months (instead of three years), it would have been worth it to me.  I did, however, think it would last longer.

Going back to dialysis is not easy, but, as Marvin says, think of the alternative.  Actually, the second time around has been easier for him to bear; it's hard to explain, but it's not as bad this time as it was the first time. 

Hang in there.  The mental/emotional part is the worst.  Yell, scream, cry -- and then pick yourself up, dust yourself off, and start all over again.  My heart is literally aching for you because I know where you are now.  We've been there.  But, take heart -- look at us now.  Marvin's been on home hemo for over a year, and loving it (as opposed to in-center)!  Our lives are busy, full, and productive.  He's back on the UNOS list (has been for almost five years this time), and we have hope that he will get another transplant.....soon.

[RichardMEL]

Sugarlump! *big huge massive (but gentle!) hugs for you*

I am devistated to read your story. I can just imagine only a little of how you must feel - frustrated, cheated, despondant... and I do not know what I could possibly say to help. I must admit it is one of my fears, as for anyone that contemplates the miracle of transplant to have the hope of a more normal life ripped from you. I have so far this year seen two failures myself. One new one just last week in my unit - a woman whose sister donated to her and it failed (heartbreaking!) and another guy who was given a cadaver donation after 2 years of waiting and it didn't take.

I just hope the process from now is fairly painless medically speaking.... please do not give up on the dream because I believe there is still hope for all of us.. specially you!

Just know all of us have you in our thoughts and prayers...

 

[Beth36]

I am so sorry. 


Beth

[MIbarra]

   It must be devestating and to have to act "okay" in front of family is even more tough. You're in my thoughts and prayers. I hope that kidney lasts as long as it possibly can for you. 

[pelagia]

I am so sorry to hear your situation.  This possibility hangs over the head off every transplant recipient.

I wish you inner peace and strength as you deal with this difficult experience. 

[Rerun]

I'm so so so sorry for your news.  I'll pray for a miracle.

I agree that the dark cloud of "losing" your transplant followes you everyday that you have it.  You can enjoy your days, but your nights when you are alone and thinking it comes to haunt you.  The thing is to take one day at a time. 

It was nice to have mine for 17 years, but devastating to lose it and the lifestyle I worked so hard to acquire.  Now I live in a dumpy apartment... well, I'll stop with that.

                                                             

[Sugarlump]

thanks for your messages of love and support. They mean a great deal to me.
And hopefully help me pick myself up and face the future. I'm back at Addenbrookes
hospital on thursday so i 'll give you an update.

[Sunny]

I hold out hope there is something more they can do for you.
All you can do is your best and if your transplant fails, just remember it's not your fault. Must be a huge disappointment for you, though.
Don't hide your feelings from your family. Try to let them know how you are feeling about it all.This is too hard to take on your own.Ask
the hospital if there is someone you can talk with about this so you don't feel so alone. Good luck and get better.

[willieandwinnie]

Sugarlump, I'll keep you in my thoughts and prayers. 

[G-Ma]

 

[circleNthedrain]

Sugarlump, I am so sorry.  I hope there is something they can do to keep your tx working for a while.  When I had my first tx 18 years ago, it worked great for a few weeks, and then I got Pneumocystis pneumonia (PCP).  I was so sick they stopped all my immunosupressive meds and told my family I was not going to make it.  By some miracle I survived and so did my tx.  It was damaged, but lasted 6 years.  You are in my thoughts and prayers.

[Sugarlump]

Hi folks,  despite stopping cyclsporin and being told to expect my kidney to die rapidly, and trying to get my head
around starting dialysis again ... my kidney has rallied ...creatinine is 460 (from 600 odd) and i feel ok. Don't want
to get my hopes up too much but is it possible the cyclosporin was too toxic for the kidney. Am still on high dose
of cellcept and some predisolone...but...could it survive despite all the big cheese consultants shaking their heads
and saying its doomed??? Do they really know...

[Sunny]

Good news. I hope it means you are feeling a little better. Let's hope your kidney makes a complete turn-around.
Good luck.

[2_DallasCowboys]

So sorry to read about your failing transplant-
I cannot imagine how you must feel.  Please know
this board and all the wonderful people are always
here for you - Thank God we have this comforting
place where everyone understands what kidney
patients go thru each and every day!
I am praying for you!
Anne