|Eagle River, Alaska
I met her and her husband in February. She was an inpatient and was placed on the transplant list that very day. I was there for my semi-annual heart biopsy. She had heard of me and wanted to ask me some questions. She has primary AL amyloidosis and was in much worse condition that I had been prior to my new heart. But, she was initially afraid and did not want a heart transplant. Finally, with her doctors' urging and her husband's support, she acquiesced and agreed to go on the list. But she was still nervous. When Barbie and I entered her room she was surprised to see how healthy I looked. We answered her questions and named her fears such that they no longer lurked in the darkness of uncertainty. When we parted she was visibly relieved and increased in hope.
I knew from what she told me of her symptoms that without a heart transplant she would not be long for this world. I silently prayed that the heart would come soon. It did. Within a month I got word from her husband that she had an uneventful surgery and recovery. She had an early heart rejection, but this was reversed with ridiculously high doses of I.V. steroids (Solumedrol: nasty stuff) and has done well since.
She called me today to ask when she should be rechecked as to the status of her amyloidosis. We discussed this and her new side-effects. She spoke of a wicked 'Prograf' tremor (Prograf is the major anti-rejection medicine that we take everyday, forever.) This causes a bad 'intention' tremor. This type of tremor gets worse as the effort at fine motor movement increases. So when the spoon begins at the bowl, it is not that bad. However, when it finally reaches the lips it is like eating soup on a roller coaster during an earthquake with a magnitude of 7.2 on the Richter scale. It is messy. I reassured her that this would greatly improve in 9 - 12 months. I gave her suggestions on managing her light-headedness after sitting for long periods. Barbie and I reminisced on how we never knew what the cause of all of my early side-effects were and how it would have been nice to have someone to call. The doctors tried, but patients understand these thing better; we live through them every day.
It was amazing to hear her describe her new life. She is no longer short of breath; no more oxygen tanks. The defibrillator vest is gone. No more pain when eating. And the nasty swelling in the legs is gone. She now walks a mile a day. What a miracle.
This should be momentous news; such an amazing event. But it happens to regular folk every day all over the world.
Fame is a funny thing. Some people actually seek it, but they are always disappointed.They often proffer some salacious tidbit that immediately vaporizes into cyberspace as they remain unsatisfied. Fame is an empty promise. I define fame as when 51% of the people who have ever heard of you have never met you. I would rather be famous among 50; within a small group whose lives you have touched while becoming better for having met them, either physically or through our ever expanding virtual world.
In this group we know each other. We share our stories and listen and understand. We give hope to each other and enlighten the path for those that follow. In this group we are each enriched as we share our small victories