Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Ami, my husband was transplanted 2-4-04 and by May 2004 he was already having symptoms of PSC again...In October of 2004 they confirmed that it was back...however, they put him on a maintenance dose of Cipro and he has done wonderful thusfar... Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Ami, my husband was transplanted 2-4-04 and by May 2004 he was already having symptoms of PSC again...In October of 2004 they confirmed that it was back...however, they put him on a maintenance dose of Cipro and he has done wonderful thusfar... Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Ami Fox wrote: > Well, that answers one of my big questions I had, which was how common > IS it for PSC to return after transplant. It's not really sure how common recurrence is. Some reports put it at 15% other at 30%, and now this report with 45%. With the small numbers in studies, it's hard to tell what the actual percentage is... they all have a relatively large margin of error. Let's hope the smaller numbers are more accurate! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 > > No kidding, because (and I hope no one gets upset with me for this), but occasionally I wonder, with the strong-ish possibility of recurrance, the side effects of the prograf and cellcept, the prednisone he'll be on for life with the lung tx and all the complications that go with IT (including him now being insulin dependant and him having mild osteopenia BEFORE the lung tx) . . . . . .. . part of me sometimes wonders if we've been doing the right thing for him, or if we're just prolonging him being sick. Ami- I responded to your post last night - but don't think it went through. Sorry for duplication if my response did go out. As you think about what is best for your son and as you make the many decisions about his medical care, please remember that you are doing the very best you can for him. Many people will freely give you their opinions, which is all that they are - THEIR opinions. THEY have not lived in your situation, they do not know what suffering has endured, nor do they know what he may have to endure in the future. I would encourage you to continue to ask the doctor's for their opinions of the risk and benefit from each procedure, and expected long-term outcomes to help you judge how 's quality of life may be affected. You will get differences in opinions from doctors, which is also difficult, but hopefully you will feel like you are making the most informed decisions you can. It is clear from your posts how much you love each of your children. I hope that you feel supported as you think through the many hard decisions you have to make. And if someone is critical, please remind yourself that you are making the best decisions you can on 's behalf. Joanne (, Ca., mom of , age 16, UC/PSC Feb 2006) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 > > No kidding, because (and I hope no one gets upset with me for this), but occasionally I wonder, with the strong-ish possibility of recurrance, the side effects of the prograf and cellcept, the prednisone he'll be on for life with the lung tx and all the complications that go with IT (including him now being insulin dependant and him having mild osteopenia BEFORE the lung tx) . . . . . .. . part of me sometimes wonders if we've been doing the right thing for him, or if we're just prolonging him being sick. Ami- I responded to your post last night - but don't think it went through. Sorry for duplication if my response did go out. As you think about what is best for your son and as you make the many decisions about his medical care, please remember that you are doing the very best you can for him. Many people will freely give you their opinions, which is all that they are - THEIR opinions. THEY have not lived in your situation, they do not know what suffering has endured, nor do they know what he may have to endure in the future. I would encourage you to continue to ask the doctor's for their opinions of the risk and benefit from each procedure, and expected long-term outcomes to help you judge how 's quality of life may be affected. You will get differences in opinions from doctors, which is also difficult, but hopefully you will feel like you are making the most informed decisions you can. It is clear from your posts how much you love each of your children. I hope that you feel supported as you think through the many hard decisions you have to make. And if someone is critical, please remind yourself that you are making the best decisions you can on 's behalf. Joanne (, Ca., mom of , age 16, UC/PSC Feb 2006) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 > > No kidding, because (and I hope no one gets upset with me for this), but occasionally I wonder, with the strong-ish possibility of recurrance, the side effects of the prograf and cellcept, the prednisone he'll be on for life with the lung tx and all the complications that go with IT (including him now being insulin dependant and him having mild osteopenia BEFORE the lung tx) . . . . . .. . part of me sometimes wonders if we've been doing the right thing for him, or if we're just prolonging him being sick. Ami- I responded to your post last night - but don't think it went through. Sorry for duplication if my response did go out. As you think about what is best for your son and as you make the many decisions about his medical care, please remember that you are doing the very best you can for him. Many people will freely give you their opinions, which is all that they are - THEIR opinions. THEY have not lived in your situation, they do not know what suffering has endured, nor do they know what he may have to endure in the future. I would encourage you to continue to ask the doctor's for their opinions of the risk and benefit from each procedure, and expected long-term outcomes to help you judge how 's quality of life may be affected. You will get differences in opinions from doctors, which is also difficult, but hopefully you will feel like you are making the most informed decisions you can. It is clear from your posts how much you love each of your children. I hope that you feel supported as you think through the many hard decisions you have to make. And if someone is critical, please remind yourself that you are making the best decisions you can on 's behalf. Joanne (, Ca., mom of , age 16, UC/PSC Feb 2006) Quote Link to comment Share on other sites More sharing options...
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