Today I saw a Heart Transplant / Heart Failure Specialist and she stated that I did not qualify for a heart transplant because I have a form of sickle cell with beta-thallasemia (blood disorders), shrunken kidneys (probably from my diabetes) Diabetes also caused gastroparesis, bladder paresis, and peripheral neuropathy. Not not only did she tell me I'm not eligible for transplant but I'm not eligible for assistive devices (LVAD). What I am able to do is trade in my Medtronix Secura ICD for a bi-ventricular ICD, some procedure when they go into the right side of the heart through the neck not sure what this is for, but she did say we are in no hurry to do that procedure. We changed my meds from Toprol XL 125mg 2xday to Coreg 12.5 2xday and lasix 120mg a day to torsemide 100mg 2xday. I have SOB, swelling (gained 8lbs yesterday!) My EF is at 30% but both of my ventricles are stiff, so I have diastolic and systolic heart failure. My EF has been steadily going down over the last year
So my question is this: are there other people out there with heart failure that do not qualify for a transplant due to other health problems? and how are you handling it? what are you doing to prolong your life? share some trade secrets :)
You may want to consider trying to be reevaluated by a different transplant team. My daughter had several different health issues: a stroke at 10, a coagulopathy, juvenile rhuematoid arthritis as well as decreased kidney function and restricitve lung disease and she was accepted for transplant. try a different center.
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