Let me get to my story. I have been sick since birth. The first surgery was on my eyes at age 16 months. I was a sickly child with lots of illness. Then at age 19 I had two strokes. I have had surgery for curvature of the spine. I had an experimental heart surgery back in 1972. I was sent to Stanford to be considered for a heart transplant. I decided I was not ready. I had a 4-year old to raise.
Johns Hopkins continued to keep me going. I was quite sick for the next 20 years. Then I went through a divorce. I remained single for 10 years. During that time I became more incapacitated. I was placed on the transplant list at Johns Hopkins. I waited for 16 month... I had two false alarms. This meant going to Hopkins to receive a heart and having to return home with my old one.
Then the magic miracle happened. December 12 1989: I got my heart. It was a good one. I was in the hospital for 11 days and then discharged to go home. Five weeks later I enrolled in college. I took an aerobic class; something I had always dreamed of doing. I was going to start living and become self-supporting. I met a man at church five years after my heart transplant. We were married on Valentine's Day. I was quite active after my transplant.
However, two years ago I went into rejection. They put me on a medication call Celcept. It is a wonderful drug but the side affects have brought me to these Neuropathy boards. It took me and my new Doctors a while to figure out this disease (PN).
Well I am here and I do protest. I have tried medication for pn, but I have all the side effects. So I have had to stop taking the medications. They had upped my dose of elavil only to cause fast heart rates and swollen feet. So tonight I have cut back the dosage. I am hurting. I have taken my pain medication. I am hurting.
The things I do which give me some relief involves keeping busy with projects. I quilted a quilt for a little friend who is in the hospital with Cystic Fibrosis. Her name is Amy. Please pray for her. She is my hero! I like to read but I go to sleep. That is good. But it is never enough. I also teach Sunday school in my church. But I am becoming less mobile.
So thank you for this board. Thank you for letting me tell my story. I stay up half the night searching for something to help. My mind is kept busy with all the information and posts I read.
I just recently went to a neurologist he told me I needed to have another test. I told him I did not want one. He called me a wimp......Well I saw a new Neurologist yesterday. She was very caring.
When I think of everything I have been through this is the worse...........Did you know when you have a heart transplant you have to have biopsy routinely. They numb your neck and then run in a catheter and snip off little pieces of the heart to see if you are in rejection. AND THIS DOCTOR CALLED ME A WIMP.........well between you and me, I am now...
I have done everything to be compliant with my medications and doctor appointments with one thought in mind...this will give me life.
But now this has given me pain in the feet and hands. So, as you might expect I am on a search for an answer. IF they can give me someone's heart they can fix my feet... And HANDS! So everyone keep posting and they will fix all our feet! And hands!
May God Bless us all........
Margaret May --
danlyn@fcc.net