How Many Transplants Have You Had?

[Beth35]

So I just joined this forum yesterday and I was curious about how many of you had more than one transplant?  I kind of thought my transplanted kidney would last me at least 20 years.  I was hoping my kids would be a lot older so that things would be easier on me but here I am ten years later and still fairly young needing another kidney.

When I first went to get worked up so that I could be put on the list, I remember a lady coming to speak to a group of us about her transplants.  She had like five or six!   I wanted to cry but they assured me that technology was better now and so kidneys last longer than they did in the past.

So I'm curious.  How many transplants have you had?  What was it like being told you had to do it all over again?  Did you wait on a donor list or did you get a kidney from a family member?  I'd love to hear your stories.

[Jess21]

What info I've heard is "Average" life of a deceased donor kidney is 7 years.  Live donor tends to be averagely a little longer.  Of course, this is all averages.  My neph has seen people with transplants over 30 years and still going strong.  It all depends on your body's factors..why you have the disease, your anitbodies, etc etc etc.
I'm 22.  I haven't had a transplant yet.  I know with current medical knowledge, I'll probably have atleast 2 transplants in my life.  I can't say I'm thrilled about it, but hopefully thru biopsies and everything, doctors will be able to tell when my kidneys are failing again (if they fail again...they still can't figure out why they did in the first place!) and I'll be able to skip having dialysis again.  Only time will tell.

[Romona]

I had one transplant, but got both kidneys. My donor was 13 months old when he died. When I first started going through all of this I was discouraged. I knew two people with transplants and met another one at my family doctors office. These people were all on the second transplant. I had no confidence that my transplant would work like it did. It will be three years in June. I have met so many people since my transplant that are doing so well. I have met people that have had multiple organs transplanted. I would do it again if I had to. I hope not. It has taken a long time to feel as well as I do. I had so many minor things crop up that I feel like I haven't had a chance to really enjoy my transplant.

[bette1]

I had one transplant that lasted almost 12 years.  I am currently waiting for a second transplant.  I would get another transplant in a second even if it only lasted for a few years because the quality of life is soooo much better with a transplant vs dialysis.  I was only 19 when my kidneys failed so I was prepared that I would have to have multiple transplants throughout my life.  I just wish there wasn't such a shortage of organs.

[Beth35]

I was 20 when I first started dialysis and I guess my head was in the clouds because I thought I'd be old before I had to have another one.  LOL!  The thing for me is surgery scares me.  I worry about dying in surgery.  Now that I have two kids I have a whole new set of fears as I don't know who would help me take care of them while I recovery.  But one step at a time.  I'll worry about that when I get there.  I'm sure that once my kidney fails I will wait at least five years on dialysis.

[petey]

My husband Marvin has had one transplant and is currently waiting for his second.

Marvin was 39 years old when he first went on dialysis (four days after his diagnosis of IgA Nephropathy -- talk about a shock!).  He was on dialysis the first time for 5 years and 6 months.  I was FINALLY approved as his living donor, and we had the transplant surgeries on July 26, 2000 (the day before our 14th wedding anniversary).  We have the same blood type (O+), but we were a very low (1/6) antigen match.  His doctors thought he'd very likely reject my kidney (they were wrong), and when he didn't reject immediately, they said if we took care of Marvin, the transplant could last 15+ years (average life of a living donor transplant, according to the statistics at that time).  We were so pumped, and we took every precaution and followed the doctors' orders to the T.

Three years later, Marvin's transplanted kidney showed signs of IgA Nephropathy, too.  A biopsy confirmed that the transplant had contracted the same disease that destroyed his original kidneys.  The transplanted kidney lasted another three months after that (October, 2003) before Marvin had to go back on dialysis.

I was devastated!  I wanted the "average" 15 years out of that transplant!  I felt like Marvin had been cheated.  I was angry, sad, heart-broken, and at my soul's end.  Marvin, however, was extremely accepting.  He said this was his fate.  He went back to the center for hemo and just seemed to pick back up where he had left off three years and three months before that.  He was so brave and so optimistic.  He said another transplant would come along for him.

That was 5 and a half years ago, and he's still waiting for that second transplant.  Marvin now has a very high antibody (PRA) level -- 98% -- (because of my kidney), so, to me, it doesn't look promising.  However, Marvin still believes his time will come.  Sometimes, I think I'm just pretending to believe because Marvin believes so vehemently.

We have been doing home hemo for the last 20 months, and this makes dialysis -- to us -- much more bearable.

[twirl]

zero

[Beth35]

Wow, I had IgA Nephropathy too.  They tell me that is what caused my kidney to fail.  I have B+ blood type which they tell me is a rare blood type.  So having a transplanted kidney can make it harder to find a match for another one?  I didn't know this.

[Chris]

I thought more would have replied that they had more than one transplant already.

[paris]

I know we have several members that have had two and some have gotten a third one.  Hopefully, some will respong to this question.

FYI --     Blood transfusions, transplants and pregnancies can raise your antibody levels.  You body keeps building antibodies to fight off these "foreign objects" that are in our body.    Something I knew nothing about until donor after donor was rejected.  There are ways to get around the antibody problem. 

[Beth35]

Wow Paris, thanks for the info.  I knew that blood transfusions had that effect but I had no idea that pregnancies or transplants had the same effect. 

[monrein]

Just had my second one, four weeks ago today.  My first was cadaveric (I was 31) and it lasted 23+ years. 

[Wattle]

   Still waiting for my first.

[Beth35]

Yeah, it took my five years of waiting on dialysis to get my first.  I was hoping I wouldn't need a second but here I am.  How long have you been waiting Wattle?

Just had my second one, four weeks ago today.  My first was cadaveric (I was 31) and it lasted 23+ years.

Wow, monrein, that is great, 31 years for cadaveric!  I wish mine lasted that long.  Good luck with your new kidney.

[babi68]

zero for me. been waiting nearly 6 years. hope one will come soon. liz

[monrein]

Yeah, it took my five years of waiting on dialysis to get my first.  I was hoping I wouldn't need a second but here I am.  How long have you been waiting Wattle?

Just had my second one, four weeks ago today.  My first was cadaveric (I was 31) and it lasted 23+ years.

Wow, monrein, that is great, 31 years for cadaveric!  I wish mine lasted that long.  Good luck with your new kidney.

Actually 23 years Beth, I was 31 years old at the time, but that's still pretty good I figure.

[Beth35]

Oops.  I meant to say 23.  That is very awesome!

Babi68, here is hoping your kidney comes to you soon!

[Wattle]

zero for me. been waiting nearly 6 years. hope one will come soon. liz

Babi68,  Have you requested a report from the Red Cross? They can tell you your antigen markers and if you have matched with any kidneys to date. What is your blood type?

Surely after six years you have done the required "waiting time" and you should be VERY close.   

I have only waited four years. But sheezzz it feels like a life time.

[MiSSis]

I received my first transplant from my twin brother on May 22, 1980.  It lasted for 3 1/2 years, which was considered quite good at the time.  After waiting 1 year, I went on the transplant list and waited another 3 years for a cadaver donor.  I received my 2nd transplant on Dec 31, 1987 and it lasted until Sept 2003, just 3 months shy of 16 years.  It failed due to complications following my 4th parathyroid surgery.  I'm now in the process of investigating whether or not I can be considered for a 3rd transplant.  I have more health problems now than before, most importantly I've developed coronary artery disease.  I've had 5 confirmed heart attacks, 16 angioplasties, 10 stents and I had triple bypass surgery.  Even though my heart is stronger now than it has been for years, my history of problems could prevent me from getting another transplant.