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Saturday, September 24, 2016


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 :)

Thursday, September 15, 2016


 So much has happened in the last month.  I went for my check up with my pulmonologist about a month ago.  My numbers were down, meaning my lungs are not functioning as well as they were since my last visit.  We talked about a new trial drug that my doctor is involved with.  He asked if I wanted to be involved in the study and of course I said yes.  While there I asked if I would ever be considered for a lung transplant.  The answer was that my numbers were low enough that I could be considered now.  NOW???  Good news and bad news.  Gosh, my lungs are now bad enough that a transplant is a consideration?  Scary, but then maybe good because at least there is some hope, right?  Would I want to do this......yes, yes, yes.  I want to live, I want to watch my grandchildren grow.  I want to see sunsets, eat ice cream, make more beads........, and so it begins.  On Sept 22 I go for my first meeting with the transplant team.  The evaluation is extensive, lab work, CT scans, heart catheterization, colonoscopy etc.  All used to evaluate my potential for being a candidate for new lungs. It will not be decided over night.
I was told I should take someone with me to the first interview, someone who could also ask questions and take notes  HB is so forgetful these days. He said I need to take someone else.  I have a good friend who is a nurse and I thought maybe I should take her, but then I thought of my son.  Oh  he probably wouldn't want to go, but he has a great memory, and he is the closest family I have here in Louisville.  I gave him every chance to say no, but he said yes, and that made me happy. So the adventure begins.  I am happy, scared, worried, excited, sad, all at the same time.