Bear with me this is long & at times complicated. I have had NIDCM for 4 yrs with an EF of 20. I was placed on Coreg but could not increase past 6.50 twice a day due to low BP & body weight. I spent years with a doc that seemed caring & adequate & sought 2 outside opinions. I have an AICD due to the chroninc Afib & am now on Sotalol. Dig, Enalapril, coumadin & a couple nutrients round out my daily regime with Lasix & K tabs as needed. In fall of this year I went in for an echo. The results were still 20. I was sent to a HF specialist at this point because I felt awful.
There are plenty more stories about this Dr Howard Eisen one which involves Mark Meade as a transplant recipient. Google Dr Howard Eisen
Mark Meade & his wife Terry became "ebay friends at one point during my involvement with eBays focus group called VOICES. Last month Terry Meads husband was doing so well that he took Dr Eisen to a Giants game. As Terry (his wife) and I chatted online her suggestion to send a brief medical history to her to show Dr E resulted in a personal phone call from him & a follow up appt along with a bilateral heart cath..No blockages, but my EF is now 5-10. My VO2 max is 9, transplants are done at 12.
I am currently at home attempting to finish all out patient testing so that next thursday I will be presented as a case to be officially listed & get my beeper...
Throw my abd problems into the mix & that necessitates a virtual colonoscopy, as well as a CT scan of pelvis & pancreas. Sadly snow is inundating us causing the one day prep to turn into 2. I would love to hear from other transplant patients & chat with them if we have any on board..
Am I scared you bet, has the moral aspect of what has to happen for me to live entered my heart & soul, you bet. This was NOT what I expected from the disease process, but as I began to decline last few months I urge you all to listen to your bodies, never settle for a diagnoses that feels wrong, Speak up when things are NOT progressing. I will be here as much as possible & pray I can help others or that others can help me.. This has been a safe haven most of the time & I can only hope that it will be again since I have no where else to turn living in the sticks..