What Exactly Am I Asking For?

After meeting with the doctors on Monday I am encouraged and feel more at peace.  I understand now why they made their decision and I respect it.  Stanford has been an amazing facility for me.  The team that I have here is like a family.  They support me through different means than everyone else in my life. 

Tuesday I sat down with my doctor to review my medical history.  I realized as he took notes that I have been through a number of trials and to a transplant board that might look dismal.  It appears as proof to why I would not be a good candidate for transplantation.  However, as I was reviewing it I saw it as multiple accounts where I defied the odds.  The rejection, the cancer, the infections, the bleeding, I survived it all.  I don’t give up, my body doesn’t give up, my God doesn’t give up, then my doctors shouldn’t give up either.  I am not just a survivor, I am a fighter and just as I fought my way to victory through all of those trials, that should be proof that I can fight my way through a challenging surgery. 

Now I realize that it isn’t just a surgery I have to survive, it is the compromising of my immune system afterwards.  I will be fighting against the world and I will be fighting against myself.  Please understand the severity of the request I am making.  I don’t just want lungs. I also need a liver.  This would not just be a double organ transplant, but a re-transplant as well. 

It has been explained to me that a re-transplant is a very complicated surgery in itself.  My second liver has attached itself inside of my abdominal cavity with scar tissue.  The surgeon will have to carve out that liver.  Once the liver is removed the vessels that attach to my liver will have been cut now for the second time.  Depending on how strong the walls of those vessels are will determine how much is left to re-attach the new liver.  The vessels can easily fray and deteriorate leaving very limited tissue to work with.  It is questionable if the stiches made will be able to hold in place.  If all of that went well there would still be the long surgery to replace my lungs.   

The average life expectancy for someone after lung transplantation drops to 50% after the first 5 years.  Most of those transplants were not in someone with the bacteria I have in my lungs.  B Cepacia is one of the most deadly bacteria to be colonized with and most facilities won’t transplant someone who has it because the survival rate is so small.  This has changed over the past few years because research has identified that there are different strains of the bacteria and some are more deadly than others.  I fortunately do not have the worst strain, but it still makes me a risk for transplant. 

Stanford’s CF program is still very young and they do not have much experience transplanting patients with B Cepacia.  The doctors have not experienced success in those transplants with B Cepacia that they have done.  The reason that they said no was because they did not feel they could do my case justice.  They didn’t want me to come out of surgery and to have diminished my quality of life.  There is still hope that another facility that has had success would be willing to take a risk with me.  I have been told that they have sent other patients with my bacteria to another facility that was willing to do the surgery and they are doing well. 

My doctor wrote a personalized letter about my history and in the next few days it should be sent to several different facilities.  The moves are being made and prayers are being said.  I am at peace knowing that I am following God’s plan and am not at mercy of these other hospitals.  He knows what is best and I don’t have to live in fear of the unknown. 

Thank you to all of you who have been praying, who have sent encouraging messages, and who have taken the time to read my blog.  What encourages me the most is just knowing that you are there.  I know that sometimes it’s hard to know what to say, but it’s not about the words, it’s about your presence.  Even when someone just “likes” a post it lets me know that you care.