I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: stauffenberg on December 16, 2007, 12:48:28 PM
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There has been a lot of news coverage lately about Isabelle Dinoire, whose face was so badly mauled by her pet dog that she had to wear a mask all the time to keep from frightening her neighbors. Her doctors considered reconstructing her face, as is the usual procedure, by taking strips of muscle and skin from other parts of her body and sewing it onto her face, but they decided this would leave her looking too ugly, with multiple stiches and imperfectly matching tissue all over her face. They decided instead to give her a complete face transplant from a cadaver, and the whole world is enthusing over the results.
However, two problems are little discussed. First, she has to take immunosuppression for the rest of her life to keep from rejecting the face, but like all transplants, it will probably not survive for anywhere near as long as she will, so she will have to deal at some point with her new face literally rotting off her skull. Another problem is that the dose of anti-rejection medicine has had to be so high (she has already had to fight off two acute rejectioni episodes), that she has now developed renal failure from the renal toxicity of the drugs and has to be on dialysis!
So what do you think: was it ethical of the doctors to give her a face from a cadaver, knowing they would have to use immunosuppressives which could destroy her renal function? If she had had autografts, as most people do, taking tissue from herself to patch up her disfigured face, she would have looked less presentable but would never have had to worry about kidney failure. Were her doctors trying to get rich and famous by performing the first cadaver to human face transplant, even at the expense of taking the unreasonable risk of renal failure and all the other potentially lethal side-effects of immunosuppressive drugs on their patient? Is it better to look like Frankenstein if that is the price you have to pay to stay off dialysis?
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I don't think I've ever seen a question as difficult as this.
I've tried to put myself in Isabelle Dinoire's place & thought would I rather have my face or my kidneys.
I've seen her new face & it's not good, not bad, just OK. Rejection and/or kidney failure never occured to me & that's where the difficulty comes in.
I just don't know. I can't answer this question.
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If you look at how normal she looks in this photo- which shows just after transplant, and one year later...
this is so hard to ponder, I think I would want to die if I didn't have a face.....what a choice- dialysis or no face...she may end up with both- dialysis AND no face.
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Was she not told of the possible problems. my God a face rejection and kidney failure as possible outcomes. For me patch me up with my own skin...Boxman
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Again, we're back to the issue that no one who isn't on dialysis can truly understand what dialysis is like. I've no doubt that they informed her of the risks, but I doubt they gave her an opportunity to talk to someone on dialysis, or visit a clinic and see what it was like. Did any of us really get what it meant when they said we would be starting dialysis?
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I wonder if the Dog is OK. ;D
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The dog, a Labrador, not long after the attack on its master got a severe respiratory infection and died.
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What do any of us know will be the outcome when we are faced with medical decisions. The transplant drugs that some of us are on are relatively new. Does anyone really know what the effects are going to be over time? Look at all the people that end up on dialysis after other medical treatments.
Here is something I think about often. When Prograf is used for other organ transplants it is very hard on kidney function. I don't know how I'd feel knowing that there was a possibility of another transplant in my future.
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Romona, after getting a transplant there is always the possibility of having to get (need) another one depending I guess on your age and or outlook...Boxman
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I wondered the same thing when I saw that on the news the other night: what happens to her if her face rejects? And was it worth it? Her face isn't great but I guess at least she has one. But has one for how long? I guess none of us can judge her decision not being in her shoes.
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If she was to reject the graft she would probably be back to about where she was prior to the transplant. Before receiving it she was so disfigured that she didn't go out much and when she did would only do so while wearing a mask. Because of the transplant she was able to resume a reasonably normal life that would have been impossible without it. In another article I noticed that she has been on Prograf, Cellcept, and Prednisone, all fairly standard immunosuppressants. Prograf is nephrotoxic and depending on the levels used is probably what caused the secondary kidney damage that has been reported. Any of us who have been on dialysis would probably agree that even a short lived transplant is well worth the reprieve it offers. Her case although not one of life and death is certainly one where her quality of life was tremendously improved by the transplant.
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Here is something I think about often. When Prograf is used for other organ transplants it is very hard on kidney function. I don't know how I'd feel knowing that there was a possibility of another transplant in my future.
I think the key here is keeping Prograf levels right, just enough to do the job but not so much that damage is caused. In Isabelle Dinoire's case I'm gonna guess that she was immunosuppressed to the max. Because of the groundbreaking nature of the face transplant I'll guess that the guys responsible wanted to prevent rejection at any cost. Her Prograf levels have likely been kept far above where the usual solid organ transplant patient would expect to be.
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I have to say `each to his own' here. My mother was attacked by a German Shepard when she was five years old. There was no reconstruction and she lived with these horrible scars(dog took most of her nose off)and people's stares and rude remarks.
She died at age 74.
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What a terrible situation. However, I agree with Boxman, it's not worth the risk.
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Kidney Failure and Dialysis. No.......................................................
Rather feel healthy than look pretty.
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I guess what I am trying to say is what if a different organ is needed. What if liver is next to go. Small bowel? I don't know what I would do if I was told I needed another organ.