A failed transplant patient has questions

[keith]

As many of you may already know i started a support group for dialysis patients and their family's. Well today i got a call from my old units social worker telling me she gave my number to this lady and she went on to tell me her story an that her and her husband are at their wits end. I called and left message still waiting for her to call back. DOES ANYONE HAVE any thoughts on how i should go abut talking and helpping this couple. I'm also letting her know about IHD and hoping that she will join us

[st789]

I am interest to know.

[Sluff]

Wish I could help. Mostly just listen to them and then do research like you are now.

[monrein]

Keith, if they will attend the group then they will get support and ideas from the other patients there as well as suggestions about how to follow up with nurses, doctors and other members of the medical team.  The support group cannot replace the medical team or provide answers for everything.  It's more about helping them to feel less alone with their struggles and to gain encouragement about how to be persistent with the professionals who might have specific answers to particular questions.  They may be feeling totally overwhelmed, confused about all the information that ESRD patients have to manage and the power of any group is to help reduce those feelings of isolation and nobody really understanding what they're going through.

Good luck with the group.

[meadowlandsnj]

As many of you may already know i started a support group for dialysis patients and their family's. Well today i got a call from my old units social worker telling me she gave my number to this lady and she went on to tell me her story an that her and her husband are at their wits end. I called and left message still waiting for her to call back. DOES ANYONE HAVE any thoughts on how i should go abut talking and helpping this couple. I'm also letting her know about IHD and hoping that she will join us

I'm also a failed transplant patient.  If I can do anything let me know.

meadowlandsnj@aol.com
Donna

[kevno]

There are a lot of failed Transplant patients at IHD. All you can do is as what sluff said. Listen to what there worries are. Then give the best advise you can. Tell them about IHD and that there are patients on that site who try to give advise/help. We are in the front line of dialysis as we are on dialysis. Good luck Keith hope you can help this couple.

[Rerun]

They will go through the same steps as any loss.  They are grieving right now.  The last thing they want to hear is "you can get another one."  This is a huge loss and a huge disappointment and it is "OK" to say that.  It is OK to say I HATE DIALYSIS! 

[kellyt]

I think that people who have lived through it personally would be best to assist.  I agree with Rerun that it will be like any other loss, but the experience of someone who's actually had this particular loss would be extremely beneficial if it were me.

Good Luck.  What a wonderful service you are providing.   

[meadowlandsnj]

I think that people who have lived through it personally would be best to assist.  I agree with Rerun that it will be like any other loss, but the experience of someone who's actually had this particular loss would be extremely beneficial if it were me.

Good Luck.  What a wonderful service you are providing.   

From experience you do go through a grieving process.  And having a living donor (my mom) it affected her also.  I think it did her more damage than it did me.  I used to say when I had the transplant I'd never do dialysis again.  Here I am three years later on dialysis.  MY mom, however, took it abnd is still taking it harder than me.  She went into a depression when I went back on dialysis--knowing that they don't last forever.  She still is kind of depressed about it but I bounced back pretty well.  I knew the last year of it it was going--no change of meds kept my creatnine down and I had protein in the urine.  I had time to process it and plan a strategy of how to deal with it.  I didn't go into it thinking everything was going to be 100% perfect and I was right, it wasn't. 

Donna

[kevno]

Losing my transplanted kidney was not a shock for me. It never worked properly, i was always told it was going to fail So always knew I had to go back on dialysis. The transplant lasted nearly seven years, at the end I was very ill. I knew I had to go on dialysis, but i agreed to CAPD which I was on for 13years never wanted Heamo. Been on Heamo for 7years. HATED EVERY MINUTE OF IT!!!

Every failed Kidney Transplant as a different story. People have different feelings about losing their transplant. It is going to be very hard for you to find the words to say to them. But I am sure you will.

[willieandwinnie]

Keith.  What a wonderful support you are providing for folks. Keep up the good work. 

[twirl]

speak from your heart
you are a wonderful person
with much to offer

[boxman55]

speak from your heart
you are a wonderful person
with much to offer

I second that...Boxman

[paris]

You are offering a great service.

[petey]

I was Marvin's living donor in 2000.  When the transplant failed (contracted same disease -- IGA Nephropathy) in October of 2003, it hit me hard.  Marvin was okay with it.  He went right back to hemo without batting an eye -- just something he said he had to do.  I struggled with it -- even though I knew going into it that it wouldn't last forever.  We were hoping, however, to get more than 3 years and 3 months out of it.  About a year after he went back on dialysis, the transplanted kidney started causing him problems, and he had to have it removed.  That was even harder for me.  It's hard to explain it, but it felt like a piece of me (even though I had given it to Marvin and considered it "Marvin's kidney") died before the rest of me.  That's a strange feeling -- this organ that used to help sustain my life, then was a miracle in a miracle operation for Marvin and kept him healthy for three years is now dead.  I remember thinking, "If they take it out, there's no chance it will ever start working again for him."  DUH !!  It was gone and would never work again -- I knew that, but I don't think I had accepted it.  You just keep hanging on to anything.  I asked for the kidney after it was removed from Marvin (don't ask me why -- at that time, I think I thought I would bury it -- sounds strange, I know -- but you're not really thinking straight when all that comes crashing down on you), but the hospital wouldn't let me have it.  They said -- since they're a research hospital -- that they would use it for research.  I guess that was the best thing.

I have found that most failed transplant patients just want to talk -- so, whatever it is they want to talk about, go with them.  They want someone to listen.  And, the words "You'll get another one" usually don't offer much comfort at this time (at least it didn't for Marvin).  With time (it's now been almost five years since all this), my disappointment over the failed transplant has eased and I have hope again. 

[keith]

The lady finally came to her first meeting and she just vented for almost the full two hours , but she said that she has not given up and she is trying to get back on the transplant list and she also said that she needed something like this to help her and her family and i think that she may have even cried while she was listening to our feed back it was a brake through for her.  to everyone for giving your it was well needed