waiting for a liver
- This topic has 12 replies, 7 voices, and was last updated 15 years, 7 months ago by
.
-
Posts
-
I am thinking of you both while this waiting period continues and hoping for the very best outcomes. The waiting must be awful but try to keep positive and know that this is the very best chance of getting rid of this terrible disease.
The very best of luck to you to you Cathy and to your dad Daleymom.
PaulineWell, my dad’s MELD is now a 34. He is starting to get some ascites now though and that isn’t good. He may need another transfusion as some of the blood counts are struggling. He will remain in the hospital until a liver is available! I just hope and pray that we can some how benefit from the loss and tragedy of someone else and that their family will know that their loved one lives on. I encourage all to make sure they are organ donors…like someone (might have been on here) once said “We don’t need our organs in heaven, and heaven knows we need them here.” Love it. Hang in their Cathy and I will be praying for you as well! Keep us updated!
Wow daleymom, my heart goes out to you. I ,too was just a drip away from surgery, all my IVs in place. It has been 6weeks since my first call. I have now been on the list for 2 months now. My MELD is 24 and other tired I am ok. The waiting is unbelievablely strange , your whole life is on hold, but it is my hope. Your dad will be in our prayers and those are our lifeline. Cathy
Not sure what a good MELD score is but I am praying for whatever a good one is all around here. Welcome and please continue to share your experiences with us.
Patty
My dad is also waiting for a liver. We are in Utah where they are also doing transplants after a strict protocol. Unfortunately he is taking a turn for the worse. We had a possible liver two weeks ago but after being taken to the hallway of the OR found out it was not acceptable. It is really hard. His MELD score is a 33 as of today. I hope that yours doesn’t have to get this bad. It is a horrible thing! Please pray for my dad and we will pray for you too!
cathy…thanks for the great information. Hoping for you to be called real soon. And, please stay in touch.
Best wishes,
MarionI just read about Vincents mom-it sound so similiar, the only difference they knew right away that a liver transplant was the main and only hope. Ihad to go through a week of testing-mri, bone scan,colonoscpy,mammogrom,blood work, counseling etc.. to see if I qualify. Once I qualified Ihad to complete chemo and radiation. After treatment they did surgery looking for no new growth-they didnot care if it hadn’t changed. I was the presented for liver transplant list which I was accepted. People with cc can qualify for extra points to move you up transplant list which I got!! (I will continue oral chemo while waiting)
My doctor is William Chapman MD (apparently world renown) He has told me
most dr don’t even know this exsist as an option to it . Barnes -Jewish St. Loius MO. and the Mayo Clinic are the only 2 places doing this clinical trial for approx. 2 years. My insurance (BCBS) has approved it. I have hope and the only real cure “lots of prayers” Good luck and you are in my prayers.Cathy….welcome and thanks for sharing this hopefully story of yours. Being that you are on top of the list seems encouraging and I am hoping for you to be called again real soon. If you are up to it possibly, you could inform us more about the liver transplant study you are part of and the required criteria. Stories like yours give hope to all of us.
I am so happy for you to have found us and I am sending tons of good wishes your way,
MarionHi Cathy,
I hope and pray that you can get the liver transplant! It must have been so disappointing to find out that the liver was not acceptable. But don’t give up hope. You can be a success story.Cathy D,
Hang in there. I know you must feel as if you were on a rollercoaster.
Just know that you are in my thoughts and prayers. Don’t give up hope. We’re glad you found us and we are all here for you.
Hugs to you,
Pam
I was diagnosed July 2008. I had become incredibly itchy for about a month and after 2 weeks of doctors nonsense, I finally was scheduled for an ERCP. The ERCP changed my life as I knew it. Thank God I live in the St. Louis area because the doctor knew exactly where I needed to go to be treated. I was transferred from the first hospital to Barnes-Jewish Hospital and put under the expertise of Dr. William Chapman, a world known transplant specialist. He immediately knew I needed to be in his clinical trial and after months of my previous doctors putting me off and bumbling thru my symptoms, I finally had competent care givers driving the recovery vehicle. He immediately told me about the liver transplant study, and that the success rate was very good. I completed 3 rounds of chemo, gemcibine and 5-u IV. Then 6 weeks of radiation, exploratory surgery to make sure nothing had spread, and then was put on the transplant list. Thanks to my having cancer and my rarer blood type, I received extra points and was put at the top of the transplant list for my blood type. After being on the list for only 2 weeks I got the call and after 17 hours at the hospital I was waiting for the surgery team to approve the liver and at the last minute the donor liver was not acceptable. I thought the doctor was joking, but he was not, and that was 2 days ago. Now I have a little taste of how close the cure is, and how scary the thought is of it not happening.
The one constant thru all of this has been the wonderful people that have touched my life in a way I could never have comprehended without this experience. I have met people with cancer and without who have changed me forever. The love and prayers from complete strangers have enriched me in a way I can never explain.cathy d
- The forum ‘Introductions!’ is closed to new topics and replies.