Sunday, June 28, 2009

June 28, 2009
For those of you who don't know, I have been diagnosed with familial amyloidosis. It is an inherited disease caused by a gene mutation which results in a misfolding of the transthyretin proteins produced by my liver. As a result of the mutation, my body is unable to rid itself of the build up of a plaque formed by these proteins called amyloid.  Amyloid tends to gravitate to, attach, and then eventually destroy organs in a persons body. In my case most of the damage is being done to the nervous system and it is starting to involve my heart. I have numerous symptoms that have developed, most notably my impaired ability to walk, digestion problems and muscle deterioration.   If it goes unchecked it is usually fatal within 7-10 years of symptom onset. My symptoms appear to have started in 2007. The only current treatment to help stop or slow its progression is liver transplant. I am listed for and currently awaiting transplant at the Mayo Clinic in Rochester, Minnesota.
This will be my outlet for letting people know how I am doing after I receive my upcoming, planned liver transplant. For all of my friends and family who read this, thank you for your love and support. Once I have the surgery I will remain in Minnesota for about one month. They won't let me have any flowers in my room, but cards, letters, phone calls, prayers, good wishes, emails and texts will be greatly appreciated. I am unfamiliar with what to expect in my recovery, so I think from here on Jeanine will be in charge of the blog for the next few entries. Love to all, Rick

3 comments:

  1. It is wonderful to hear the surgery went well and that you are already getting out of ICU. Thanks for recovering so quickly, the suspense has been hard on us.

    When will you be getting out of the hospital and moving to the Mayo house? Suzanne and I want to plan a trip to visit with you.

    Tom

    p.s. Jeanine, our thoughts are with you. This must have been incredibly difficult for you as well.

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  2. Bossman...you be lookin' fine as frog hair split 4 ways!!!!! Sendin' lots o' love and smoochas to you and jeanine!!!! We all miss ya tons and tons :)

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  3. It's not surprising to me hearing things are going well, I knew it would just take some time. But I'm very glad to hear it and I'm sure it will only continue to get better. Love you dad, and yes I have been getting the mail and paper.

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