I saw my new doctor again this past Friday for a followup from blood-work, and my recent trip to the hospital. As we were talking my father brings up the question/topic again of a liver transplant - and his feelings. He said I need to start planning for one. he recommended 4 places where he has sent patients, and have had good experiences. He suggested: Indianapolis, Ohio State University, The Cleveland Clinic, and The Mayo Clinic. After deciding where I want to go, will need to travel there to be evaluated by the transplant team. They go by factors - one major being something called a MELD score. MELD stands for Model for End-Stage Liver Disease. Right now my MELD score is about 15/16, and anything over 20 is dangerous. Even if the hepatitis B viral load drops, the damage (cirrhosis) has been done.
Needless to say I am scared, overwhelmed, frustrated, and confused. What ever the future holds I have a long battle ahead of me - something I plan on fighting. I truly hope I have the strength.
Posts
Good bye.
4 years ago
WOW. I'm so sorry to hear this. Jason, if you have faith hold onto it. He is there. I cannot tell you the things He has done in my life. I used to doubt, but I no longer have that option. I have a feeling that you will no longer have that option either. I will continue to keep you in my prayers. My daughter (6yrs old) woke up the morning before she was killed in a car wreck and very matter of factly stated "You know what Mama, it doesn't hurt a bit to die". I promise you, He is there for you.
ReplyDeleteGod Bless
Hey Jason, I'm sorry you have gotten here! I have so many friends in my liver disease circle who have gone this route, and it is always scary and uncertain. I also have many post-transplant friends who are now living full, healthy lives! I don't have first hand experience, but again I have many friends who have gone through this and based on everything I have heard and read I would take myself to mayo-Rochester or Mayo-Jacksonville if I found myself in need of a transplant. I wish you the best and I will be praying for you.
ReplyDeleteShawnee
Hey Jason! i just stumbled upon your blog, i too have had crohns since i was 12 yrs old. Im 23 now! but thankfully when i was 19 my doctor suggested surgery because i was lucky enough that the crohns was situated only in one area of my intestine. i had the operation, the surgeon said it was the worst he had ever seen! but he managed to clear it all out. till this day i am forever grateful to that surgeon, and to god i am in perfect health! i know that this is a rare case but there is always hope =) stay strong keep doing what your doing. You were put on this earth to do great things, don't let some silly thing called "crohns" get in your way! I'm on twitter too @purpleberryblue. Keep in touch yea? Peace
ReplyDeleteI know that you have a lot on you mind with the surgery coming up. I was hoping you might be able to shed a little insight on the research proposed in this article as you are much more educated on these matters then myself.
ReplyDeletehttp://www.dailyrx.com/news-article/better-kidney-measurement-12387.html
Was your diagnoses based on the AKIN measures and if so how did your Dr. facilitate the diagnosis to you?
Hoping the best for you Jason.
Jason,
ReplyDeleteI give you so much credit for sharing your very serious issues. You have taught me, and I'm sure many others how to continue day after day while all of this time waiting for what's next. I truly can't imagine the strength it has taken to be "there" for so many great friends in the CDSN group. Everything is for a reason, and there is a reason for everything. I will forever be grateful to have known & grown with your knowledge. Thank you for sharing your life.
All of my admiration and prayers go with you. Thank you. Warm hugs, Oka:0)/Gooftroop
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