I was told you have to be cancer free for like 3 to 5 years otherwise you risk the chance of antirejection for kidney transplant bringing back the cml. I am seeing my nephrologist on Fri. She wants me to go for a consult in Pgh or wherever I want. I had my transplant at johns hopkins, but I have read where Cleveland Clinic is top for kidney transplants. It's just the farthest away from home. I know it will be nothing like my 90 some day stay in Baltimore. I'm just worried about risk of rejection. That is why I saved that as a last resort for bmt. I just kept thinking try the meds, they are working on more stuff. It will buy me time. Just such a stressful situation after so much I have dealt with. Will keep you posted and will most likely be asking for more advise and opinions. Thanks! Have a great day! Terri In a message dated 7/30/2013 9:54:25 A.M. Eastern Daylight Time, wa2...@gmail.com writes:
Hi Terry, Nice to see you here on this forum. I was wondering what happened to you. Sorry to hear about your kidney problems. I also have kidney failure and am on dialysis. All of this started over 23 years ago from all of the chemo and radiation I had for my bone marrow transplant and as time went by my kidneys got worse and worse. You may want to look into a kidney transplant in spite of you dealing with your CML. I think that you would probably be a candidate even though you have CML. I know that if you had any strokes or a heart attack then you would probably not be able to get a kidney transplant. No matter what, you need to get on some kidney transplant lists. If you have a live donor that is willing to donate to you then you need to have them tested as soon as possible. Just so you know there are some hospitals that have a program that if they do not match you they can still donate and in turn you will get someone else's kidney. So far I am on four lists but I also have a possible live donor. I am in Pennsylvania for the summer and once I get back to Florida I will pursue this. If I can ever help you just let me know Hang in there Terry. 18's (Symbol for life) Marty On Tue, Jul 30, 2013 at 9:28 AM, <_TEDBDD@aol.com_ (mailto:ted...@aol.com) > wrote: Theresa....I haven't gone through it, but I think you have a strong case. Press on! Tom in KY In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time, _Terrijeff20@aol.com_ (mailto:terrijef...@aol.com) writes: Hello, I was diagnosed in May of 2000. Started on interferon and arac. Moved on to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission until 2011. Everything quit working and I had to go with transplant at Johns Hopkins. They were terrific. I was put on disability. So now I am two years out and just became eligible for Medicare on June 1. I called to get drug coverage and they calculated the cost. Two days later I received a cessation of benefits, stating cml is in remission. I should be able to get a sedentary stress free job. In the meantime starting Feb, I developed headaches and high blood pressure. Creatinine went up. I was referred to a nephrologist with a gfr of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys are dead and dried up, this damage as I understand is irreversible. Since then I have dropped twice to 11% gfr and currently am at 21% which puts me at stage 4 chronic kidney disease. Severe function loss. Has anyone else dealt with this? I'm looking at poss transplant which they don't even know if I qualify as I am only 2 yrs remission from cml. I still take 800 mg tasigna daily to prevent it from coming back. So my other option is to prepare for dialysis. I am only 45 yrs old. Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot to deal with all of a sudden. Would love to speak with someone who has gone through this or knows of anyone. Thanks, Theresa Migut Johnstown, Pa -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . 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