Have Hep C which I got from a blood transfusion in the 70's. Diagnosed in 2002 and went thru 6 mo.,8mo., and then an 11 mo. treatments that ended in 2006Tests show I'm non-detectable Hep C. Moved to Montana in 2008 from Ohio, a dream of mine, and after testing in Oct. Gastro said I have Chirosis damaged liver. I knew that, but he wants to put me on a liver transplant list as soon as possible. I had been experincing quite a bit of pain for the last 6 mo. but I'm not to sure about the transplant. I starting taking Milk Thistle and pain has subsided quite a bit to my surprise. I don't know if I should seek another opinion or since he is the specialist, I should heed his advice.
His referrals which are the 2 closest transplant center to me are, the University of Washington in Seattle and the other is the University of Utah in Salt Lake City. If you have or if you know of someone that has had a transplant in any of the 2 Centers, Please let me know. Also, if they could share their experience with me, that would really help me. If fact, any input in this area would be greatly appreciated.
First, your local doctor cannot get you on a transplant list. You'll have to go through a detailed process at the transplant center of your choice. I recommend Denver over SLC or Seattle. We went through the liver transplant process at UW. It's expensive and difficult to travel back and forth to Seattle from Montana. There has been a huge amount of turnover in that program as well. Everytime we met with the transplant team is was a new bunch of attendings and surgeons. Denver has more affordable housing options for post-transplant. We know several people who have had successful outcomes in Denver.
Thank-you for info, I was leaning toward UW, but I think you have changed my mind. I did notice that there was one in Denver, I did read somewhere that they had an outstanding center, the distance is a consideration, but anywhere is going to be a problem from MT. I live between Great Falls and Helena.
A consideration which makes more sense is to go to the Cleveland Clinic. I was hosptalized there and was very impressed with care and services. Our families live only 2 hrs. from there and I could probably stay with my mom or sis, even my bro would take me in. But, my father-in-law is facing major surgery for cancer removal within the next 30 days and my family is dealing with one of my brothers fighting stage 4 spinal melanoma (cancer). So, we've been reluctant to tell our families.
My husband hasn't been supportive, he won't even ask me anything about the surgery. If I mention it, it's like I'm talking to myself. Facing this alone is killing me, I have no one to turn to for support, and I need my family big time! In fact after I post this, I'm going to call my sis. Please if you have time and if you don't care, please share the experience with me whether you are the one who had the transplant or you're the caretaker!! Bless you for responding!
Dear Unconventional, I did call my sis, and started balling like a baby!! We talked and she told me to fly back home right away and said she would even pay for my flight. She said that she would help me in any way she could. She even volunteered to donate me part of her liver! She said I could stay there as long as I needed and she would drive me !! My younger sis called and she said the same thing and she is also willing to give me part of her liver! They want me to get back asap.
They want to make the med arrangements to see if one of them are compatable. They figure one of them should be able to be a donor!! Needless to say, everytime I think of them, I start crying! I never even considered any of my family as donors. Maybe one of them may be able to donate or maybe not, but I can never ever forget that they volunteered!! The support is such a gift especially after not having any! I feel that a big part of my burden lifted off my shoulders. I don't feel so scared and now I dont feel alone. My husband all of a sudden, he cares!! Yeah!! He just doesn't want me to be with my family as always!!
It sounds like you guys have been thru a lot!! 3 yrs is a long wait!! Hopefully, if one of my sisters are compatible, my wait will be less. I don't know how it works. I plan to call Cleveland today, and let them know about my sisters. Then go from there. I guess I better call my GI. and let him know about Cleveland ask for my MELD. I had a great GI in Toledo, I wonder if I could go back to see him! I also do think a therapist will help! Especially dealing with the non support of my husband, this has literally gotten me down!!
I thank you for sharing your experience with me and also for the valuable info!! I just wonder, was it you or was it your spouse that had the transplant, and how are you both doing? I don't want to be snoopy!! I just wonder!! I pray that everything is well with you!!
May i ask what your symptoms are for the Chirrosis (sp?)?
I currently have NASH but have scarring with it. My hepatologist said I will have to deal with the symptoms of chirrosis, I have diabetes and my bs are not controlled and I wonder if that is a symptom of the chirrosis.
Hi, first of all, I haven't heard of NASH, but I will look into it within the next few days. When I was diagnosed with Hep C, my doc sent me to the heptalogist and he did a liver biopsic with a needle and that is how I found that I had Chirrosis. I was fine one day and then one day I started feeling weak, very weak (fatigued)! My experience with Chirrosis is the following: I thought I had a bad case of the flu, even walking was an effort!! Since 2007, I have felt occasional pain on my right side, liver area! Doc said it was inflamation of the liver. I noticed an occasional drink flared it, now, alcohol is off my menu. I do know that the liver has to make more of an effort to motabolize what we put in our system. My occasional pain has been every day pain since mid 2009. I guess more scarring detected by bi-annual ultrasound is why my GI suggested liver transplant. Remember, this is my experience, but there are excellent web sites that could help you, search Chirrosis. I have learned the function of the liver, and how in order to live, we need it!! Keep posting and keep sharing!!