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_ (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.
