Question for those who have had 2 or more transplants

[Michelle]

Hiya all

I am not sure how many people this applies to but I need to get a handle on a decision I am having to make.
I saw the transplant surgeon on Monday and it appears that calcification in my abdomen isn't the primary concern, but he is more concerned about the scar tissue from previous surgeries which are many.
As I understand it the third one is usually placed inside the peritoneum but that option is out for me as that is where my sheet of calcification is, so they are proposing to either put it where the first one went or to move it off round the back and join it to my own ureter on the right hand side.
However this is the part that I need help with, as I have alot of scar tissue from previous surgeries at both sites and the surgeon told me that there is a small risk of not surviving the operation-probably under 10% but it is still double or even treble that of a standard transplant. This is because of excess bleeding and management of the scar tissue. It is an improvement on the 50% chance the original surgeon told me but its still quite high. So I am interested to know if others have had this sort of problem and what they were told about risks etc.
As it stands at the moment they think there is probably only a 50% chance of having a successful outcome when everything is taken into account as even if I survive they can't guarantee that they can get the kidney in. I could be cut in several places and still not have a transplant at the end of it.
The other hurdle is seeing what the transplant committee at the hospital think as there has been much discussion and this surgeon is alone in thinking it should go ahead although he has the support of my neph and others, just not the other surgeons. This could effectively veto the whole thing anyway but I have to decide what I want to do first. So in summary I am looking for the following information

Where did they place the transplants?
What extra risks were there to having multiple transplants?

I think its a matter of what risk I am willing to take and I have to weigh this all up now. At present dialysis is working well but that can't be guaranteed to last forever, but is a double/triple risk of death too much?
It would be my third and most defintely my final transplant if all went well but of course this raises issues of even getting a match in the first place as live donation would be out as its not ethically on to remove a kidney they can't necessarily use.

Its not been a great day but could be worse but I guess at the moment I am just so confused. As 3 years ago I am told that abdominal calification gave me a 50/50 chance of not surviving so was removed permanently from the list. Today I am told that its not an issue in itself or only to a secondary point as it rules out a site-but the second transplant went there as it was a 40 something year olds man into an 8 year olds body so not sure it be useable anyway-hence the massive scar tissue on one side.

Grrrr I hate this disease sometimes. As you can imagine I am feeling way down at the moment, confused, frightened and scared. I don't expect an answer or to be told what I should decide, just interested if others have had anything similar happen.

[Michelle]

Update to this is that I have seen yet another surgeon who also thinks its entirely possible to do this transplant and the risk is slightly lower mortality wise but a much higher chance of getting the kidney in. I am still so confused and VERY angry with the original surgeon as he could have thought about this possiblity 4 years ago. Instead he refused outright and I have lived with the idea that only a miracle would release me from dialysis. I don't even know where to begin in getting my head round this to be honest and my trust in him has been severley rocked.
I feel that things have happened since I have been on haemo-coming up 7 years in August which have worn me down so far its going to take alot to come up again. I need to make a decision about what I am going to do about being relisted for a transplant but my head is fit to bust with everything thats happened that a rational decision is not easy. Of course there is the possibility of counselling but the waiting list is so long that I need to try and help myself a bit.

[kevno]

Michelle,

Don't give up the chance of having a transplant, I have not. Been back on dialysis 18 years this May 26th. With all the operations I have had, I have been on and off the list more times than a yo-yo as been up and down. Like me with my leg  have seen 3 surgeons now. On Thursday the Surgeons have told me I need to make up my mind. You must keep that hope, if nothing else you will always have that to keep you going.

Only ever had one transplant.

Kevno

[Rerun]

Michelle, get on the list and then think about it.  You don't have to take one if it is offered.  If you get called, ask what the match is.  If it is a fair match, good match, or great match??

[Michelle]

I think my most difficult thing to cope with at the moment is I have been off the list all this time and had to live believing a miracle was the only thing that would enable me to even go on the list. When I saw the original surgeon it wasn't just what he told me my chances were but HOW. I was basically ranted at and almost accused of not having a right to go and see him and then at the end he rattled off a load of time scales I would possibly have before dialysis failed. It was a really hard time and took alot of getting over and I really only achieved that because I absolutely trusted him and didn't believe he could be wrong. To find out he was has destroyed my trust in him and it hurts to live with a shadow hanging over your head you didn't need to and it makes me so angry, hurt and upset.
This is the first time I have openly exspressed how I feel about this since one other time I did so on another board and found out it had gone to a third party, who had no right to know. Which was yet again something that hurt me as it was a place I trusted when I was down and I now am VERY unsure about posting there again when it is anything personal about myself.

[Naggy6]

My dr removed the first transplanted kidney to make room for the 3rd one.

They did say that they were not sure if they were going to be able to do that because it had been there for so long. But all worked out well, surgery wise any how.

[Black]

... I absolutely trusted him and didn't believe he could be wrong. To find out he was has destroyed my trust in him and it hurts to live with a shadow hanging over your head you didn't need to and it makes me so angry, hurt and upset.
... it was a place I trusted when I was down and I now am VERY unsure about posting there again when it is anything personal about myself.

Hi Michelle,

I understand about the trust issues and I think learning to cope with that is one of the hardest things any patient deals with.  If we had listened only to the "medical professionals" who have treated my husband, he would probably have significantly shortened his life and what he had left would have been of far poorer quality.

As to your current decisions, I can't really be much help w/ first hand information, but I can tell you that I have learned a lot from various message boards and used that information to do online research and as a starting point for questioning every medical professional we encounter.

I wish I had more to offer, but you seem to be doing a good job of carefully weighing all of the options.

Good luck.

Lorelle

[okarol]

My friend just had her 3rd transplant - she is 35 years old. Due to extensive scar tissue they had a challenge with hooking the ureutor to the bladder. But all is well and 10 days later her creatinine is .06!