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Saturday, September 24, 2016

FIRST TRANSPLANT MEETING

On Monday I had my first meeting with the  transplant team.  They are very specific about what will and will not happen.  The oldest person they have transplanted lungs into was 73 at the time they did it.  She is doing well.  People seeking transplants must go through a battery of test including a heart cath, an echo cardiogram, colonoscopy, kidney function tests, miles of blood work etc.  This is to make sure that your organs a functioning well and can accept the stress put on your body as it adjusts to the surgery and the new lungs.  90% of transplanted people make it through the first year, 50% make it to five years. Some people have lived 10-12 years with a lung transplant.  The 50% at five years is kind of discouraging, but when you are diagnosed you are told that your life expectancy is 3-5 years.  I've already lived 2 of those years.  It is essential that you have a family team behind you as the recovery is slow and the patient needs much of assistance.  A patient is in ICU for 2-3 days and then in the hospital for about two weeks.  Afterwards there are many office visits and regular pulmonary therapy.  My son and I were impressed with the team.  They answered all our questions and I want to continue down this road.  After all the testing they could tell me I am not a candidate. If I am one I will be put on the national waiting list.  I really feel like I have nothing to lose, since this disease is going to kill me anyway.  If a lung transplant gave me 5 more years it would be wonderful.

This Monday I start a trial medicine that hopefully slows down the disease process.  2 out of 3 people will receive the actual drug for six months.  The others will get a placebo.  After the 6 month trial everyone will get the drug.  Something positive to do while I wait to see if I qualify for a transplant.....prayers appreciated :)

3 comments:

  1. Ok. So I have NOT read your blog since the Aug. posting and now feel quite crappy after my FB response to you yesterday.
    Holy cow! A trial drug and a possible lung transplant down the road.
    You are so brave, my friend. I admire your attitude. I'm sure there are moments that you want to crawl under the covers but then you forge ahead.
    So now I'll reword my response from yesterday: think of me riding along on your left shoulder as you move through this process. I can sing a jaunty tune or whisper an off-color joke. Whatever you need - I'll be there.

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  2. I'm inspired by your courage! Thank you for the update :)

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