Loss transplant having to cope going back to hemodialysis

[micole83]

I  was hoping to ask someone that had to return to dialysis after having an rejection from kidney transplant, I just wanted to know how long does a person still take their immunesuppression drugs, and the predisone.  Thanks

[Rerun]

After you start dialysis they wean you off your drugs pretty fast.....too fast IMO.  Watch coming off prednisone.  I had a really rough time.  One milligram a month.  That is what you should do no matter what they tell you.  If you have been on long term prednisone for years, your adrenal gland take a long time to wake up and start working.  So if you have been on 10mg.... take 10 months to come down.

I'm still on 2mg and can not go lower or I just stiffen up (joints).  I feel great on 2mg and so I take it every morning. 

Good Luck!                 

[targetmom]

I had to do this twice.  I was very lucky to get two transplants after being a living donor myself.  I t was quite traumatic.  My experience with coming off the drugs though was quite easy.  I stayed in the hosp for about 5 days while they tried to jumpstart my kidney and after that failed. I was taken off all immunosupprents.  I suffered no ill effects from this, other than the emotions associated with having to go back on dialysis a third time.
Here's praying that your experience was not like this.

[petey]

Marvin had to go back on dialysis after three years and three months with his transplant.  He didn't reject -- his transplanted kidney contracted the same disease that had destroyed his original kidneys (IgA Nephropathy).  The docs said they would stop all anti-rejection meds and the steroids immediately.  I said, "Won't that cause him to reject the kidney and hence cause further problems?"  They said, "It's not working any more anyway."  So, they stopped the CellCept, the Prograf, and the Prednisone the day after he went back on dialysis.  Funny thing -- he kept that kidney (even though it wasn't working anymore) for another year and two months.  Then, it had to be removed because it was trapping blood and swelling.  We always figured that when he stopped the anti-rejection meds that the transplanted kidney would have to be removed almost immediately.  Guess we were wrong.

[rookiegirl]

Marvin had to go back on dialysis after three years and three months with his transplant.  He didn't reject -- his transplanted kidney contracted the same disease that had destroyed his original kidneys (IgA Nephropathy).  The docs said they would stop all anti-rejection meds and the steroids immediately.  I said, "Won't that cause him to reject the kidney and hence cause further problems?"  They said, "It's not working any more anyway."  So, they stopped the CellCept, the Prograf, and the Prednisone the day after he went back on dialysis.  Funny thing -- he kept that kidney (even though it wasn't working anymore) for another year and two months.  Then, it had to be removed because it was trapping blood and swelling.  We always figured that when he stopped the anti-rejection meds that the transplanted kidney would have to be removed almost immediately.  Guess we were wrong.

Petey - is it common for the new transplanted kidney to develop the same disease?  This is scary for me because Iga Nephropathy is what cause my kidneys to stop working.  Now that I'm 3 months & 10 days post transplant, I'm worried.

Thanks - RG

[RichardMEL]

I think it depends on the specific disease and you'd need to talk to your neph about the chances. I have chronic(slow) FSGS. I talked to the doc about the potential for it to kill off a transplanted kidney. He said to me that there was a 40% chance of it happening, but even if it did because I had a relatively slow moving form of the disease it likely would run the same course with a transplanted kidney, and in all likelihood the actual kidney would fail or reject before the FSGS caused it to fail (unless it lasted like 20+ years). Either way I am comfortable with that outlook.

Of course others may face a different outlook.

[petey]

Rookiegirl --
When Marvin got his transplant, the possibility of his IgA Nephropathy attacking his "new" kidney was never mentioned to us.  We were clueless and didn't realize that it could happen -- now, rejection that was another story.  We worried every day and watched for signs of rejection.  No rejection signs at all.  When he started to have whacky labs (about 3 years with the transplanted kidney), his nephrologist (same one he's had for 14 years) said, "Maybe we better biopsy it for IgA."  I said, "There's a chance the IgA could return in the transplanted kidney?  Why didn't you tell us this before?"  He said, "It's rare, but it happens."

The biopsy showed IgA.  The neph said, "But, it sometimes takes years for IgA to advance to the point that the kidney is destroyed.  Let's not worry about it now."  Well, three months later, that kidney was functioning at 5%, and Marvin had to go back on dialysis.

When I asked the neph, "What are the odds that this could happen to Marvin?" he said, "One in a million."  Marvin typically has things happen to him that are atypical and "one in a million chance."  His body never responds in "text-book fashion."  He's so special !  Or, at least that's what I keep telling him. 

[petey]

...and, also...I forgot to say that if we had known in 2000 that the IgA could -- and would -- re-occur in Marvin's transplant (kidney from me), it wouldn't have changed anything we did.  That three years and three months with that transplant were great, great days for Marvin.  Was it worth it to him?  Yes.  As his living donor, was it worth it to me to donate and then have it only last a little over three years?  Yes, yes, yes, a million times YES.

Be informed.  Be aware of what might happen.  But, let tomorrow take care of itself.  Enjoy today and every day with your transplant.  You're a lucky girl!

[kellyt]

I asked my neph after reading about Marvin in a different thread.  That terrified me, BTW!    My neph also said it was rare but could happen.  Terrified I say!!!!

[rookiegirl]

I read an article from the National Kidney Foundation website about the possibility of Iga Nephropathy to develop again in a trasplanted kidney.  I don't know you guys can open the link.

http://www.kidney.org/atoz/atozitem.cfm?id=76

I'm going to talk to my Neph on my next visit to discuss prevention now to prolong the disease if it ever happens again.  Especially about the Fish Oil.  I remember years ago when I was Pre-dialysis, I tried taking the Fish Oil capsules.  But, I was taking so many of them at one time, I just didn't like it.  If I can take maybe 1 or 2 I should be okay.  I hear lots of good things about fish oils.

[petey]

When Marvin started having problems with his transplanted kidney, his neph put him on Fish Oil capsules to try to slow down the progression of the IgA.  Marvin was taking three (big ones) in the morning and three at night.  After a couple of weeks, he asked me to look behind his ears because he thought he was growing some gills!  That Marvin is a silly boy!

From everything I've read, though, I think Fish Oil does slow down the disease.

[Falkenbach]

I wonder if the same thing can happen in relation to CRF (CKD)? If I get CRF of my transplanted kidney, I will really have trouble coping.

[kellyt]

At one point, long before transplant, I was on 8 fish oil capsules a day.  EIGHT!  Every time I burped I tasted fish.  ick.  Also, I made the mistake of putting them in my pants pocket when I was leaving the house.  More times than I'd like to mention they got washed.  It's very hard to get fish smell out of bluejeans!  I had to wash them multiple times in a rough and then finally washed and soaked in vinegar.   

[Brightsky69]

rookiegirl - don't worry too much about IGA messing with your transplant. I have IGA and my transplant lasted 17 years.  Granted IGA may have played a part in messing up my transplant...but it took 17 years to do it.   

[rookiegirl]

Brightsky69 - thanks for sharing.  Wow 17 yrs.  I'm now 9 mos. post transplant.  Doing great except gained a lot of weight.  Not a happy camper about that.  Overall, life is good.

[Krisna]

I've had 4 transplants beginning at age 8.  After the first 3 transplants I was weaned off the Prednisone within a matter of months.  It's been too long for me to remember correctly.  After the last transplant failed I had another health problem that required me to stay on Prednisone.  I quit taking it though due to the fact that I was doped up on pain killers and forgot to take all my meds.  It caused my organs to start shutting down and my Nephrologist put me on Hydrocortisone.  I have been taking 10 mg a day since Jan. 2003.

My kidneys failed due to CKD of unknown origin and CKD is what caused 3 of my transplants to fail as well.  The other (#3) was removed due to infection after 9 wks.  I have been on dialysis for 7 yrs with no current plans for another transplant.  I need extensive oral surgery!

[Falkenbach]

At one point, long before transplant, I was on 8 fish oil capsules a day.  EIGHT!  Every time I burped I tasted fish.  ick.  Also, I made the mistake of putting them in my pants pocket when I was leaving the house.  More times than I'd like to mention they got washed.  It's very hard to get fish smell out of bluejeans!  I had to wash them multiple times in a rough and then finally washed and soaked in vinegar.   

Oh, when I was training my dogs I forever left smelly disgusting treats in my pockets that went through the wash - liver, etc. Ugh!

But back to the fish oil - what properties did your doc want you to have? Was it the Omega? If so, you could switch to flaxseed supplement (liquid or capsules). I couldn't handle the fish oil tablets repeating on me either (I took them of my own choice, though, to help with cholesterol) so I switched to a "Total Omega" supplement which is flaxseed based, capsules, with Omega 3 and 6, It's fantastic. No after-taste. And my total cholesterol went from 6.6 to 4.1.