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, <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, > 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 > ------------------------------------------------- > > 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 > To unsubscribe from this group, send email to > 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+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > > -- > -- > [CMLHope] > A support group of 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 > To unsubscribe from this group, send email to > 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+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of 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 To unsubscribe from this group, send email to 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+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
