Question:
- Hide quoted text — Show quoted text ->It appears that all the SD patients that I have known who lost their lives to >this illness succumbed to lung disease. I don’t know what the actual >statistics are but I have done some of my own research regarding lung >transplants. From what I have read there appears to be an enormous >improvement >recently in the technology needed for a successful transplant. There also is >another medication other then cyclosporine that can be used to prevent organ >rejection. (I forgot the name) Scleroderma patients have always been >stigmatized and denied lung transplants with the excuse being that it would >not >be successful due to the problem they would have tolerating the anti >rejection >medication. Cyclosporine, is said to be very toxic to the kidneys. With the >advent of another medication that does not have this side effect I feel that >scleroderma patients should be given the identical consideration as any other >patients. SD patients should be judged on the individuality of their >condition. This is far from the case. I discussed this with my doctors and >was told that it is still automatically believed that giving a scleroderma >patient a lung transplant was a waste of the organ. I have never seen this >issue discussed at any great length. >If I am correct then it is time we start to address this issue. If there is >newer information I would appreciate being directed as to where it can be >found.
The following excerpt may help to answer your question, or some of it. It’s an excerpt from a recent AOL chat with Dr. Daniel Wallace, chief of rheumatology at Cedars-Sinai Medical Center (Los Angeles). Dr. Wallace is a renowned scleroderma (and lupus) specialist. BHostRonni: Is it feasible for SD patients to get transplants? BHostRonni: Isn’t the problem likely to recur in the new organ? SLE DOC: many scleroderma patients have received kidney transplants SLE DOC: over the years, and the reoccurence rate to the organ is less SLE DOC: than 5%. More recently, lung transplantation has been advocated SLE DOC: for patients with SD and pulmonary hypertension.
Response:
It appears that all the SD patients that I have known who lost their lives to this illness succumbed to lung disease. I don’t know what the actual statistics are but I have done some of my own research regarding lung transplants. From what I have read there appears to be an enormous improvement recently in the technology needed for a successful transplant. There also is another medication other then cyclosporine that can be used to prevent organ rejection. (I forgot the name) Scleroderma patients have always been stigmatized and denied lung transplants with the excuse being that it would not be successful due to the problem they would have tolerating the anti rejection medication. Cyclosporine, is said to be very toxic to the kidneys. With the advent of another medication that does not have this side effect I feel that scleroderma patients should be given the identical consideration as any other patients. SD patients should be judged on the individuality of their condition. This is far from the case. I discussed this with my doctors and was told that it is still automatically believed that giving a scleroderma patient a lung transplant was a waste of the organ. I have never seen this issue discussed at any great length. If I am correct then it is time we start to address this issue. If there is newer information I would appreciate being directed as to where it can be found. Also since many of us are being treated by very influential doctors possibley they could help to direct us in how to go about correcting this sort of treatment. Tamara
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