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@hogan_g1937, Your husband sounds like an amazing man with his strength and determination. I hope and pray that treatment is successful, and that a transplant is soon.
For me, the hardest part was the time before the transplant while I was enduring all of the ESLD symptoms. My husband and I had planned for every scenario for what to do when I got my call - but when I did get the call, my mind went completely blank! So it was my dear husband, who got me pointed in the right direction. Your husband is fortunate that you are there for him:-)
I was asked to write about the time leading up to my transplant. I want to share it, maybe you and he can find something helpful, or maybe you might have some ideas of your own to share. https://connect.mayoclinic.org/newsfeed-post/staying-positive-while-waiting-for-a-transplant/
How are you holding up to all of this?
Rosemary
Replies to "@hogan_g1937, Your husband sounds like an amazing man with his strength and determination. I hope and..."
@hogan_g1937, You sound like my husband! He says that if I'm okay, then he is okay, and especially the no hospitalization part:-)
When will you know if they got the cancer?
Thanks for the compliment.
I once met a man in the lobby at Mayo, who was waiting to get his results about his liver cancer treatment. Then, I ran into his wife a few weeks later in the elevator, and she was ecstatic and told me that he had received his transplant. Miracles do happen in the transplant world!
As an FYI - I want to point out a part of Connect called, Pages. You might find the Transplant Pages of particular interest. There is a variety of featured articles about all kinds of transplant topics, including liver transplant, aftercare, and individual success stories. It is easy reading, short, and informative. https://connect.mayoclinic.org/page/transplant/
Sending you hugs, hope, and prayers.
Rosemary
@hogan_g1937 I too had malignant lesions in my liver, they were taken care of by ablation. For me also, liver cancer increased my MELD score. I presume you go higher because they want you to have the opportunity for a transplant before a recurrence of any malignancies. I am trying to remember exactly when the ablation was, I believe it was in June of 2015, and I was transplanted in September of 2016 with a MELD of 28. I am not really certain of this but I believe the MELD only gets updated every three months but that the transplant center does have some discretion in deciding who will get a liver. I had gone downhill quite a bit so I think that may be why I did get the liver with only MELD 28, in Boston the MELD score is generally in the 30s before a transplant takes place. After transplant I found out that when they dissected my liver it was pretty much spent. The other variable though is blood type -- A, AB, and B generally get transplanted at a lower MELD and I am type B. I guess that's because a type O liver can go to anyone whereas the other types have to go a person with the same blood type.
I can't help but notice that all the people who are waiting or have had transplants are very happy with the hospital they have dealt with. I think the people in the transplant departments must be very special in caring for their patients, I know that they were at MGH. I was in there again in December with an unrelated condition but they put me in the transplant unit because having been a transplant recipient makes a person need special consideration. Some of the nurses remembered me, more than a year later, and they were all just as nice as they had been when I was there following my transplant.
JK
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Hi Rosemary, I am holding up good I think it's because he has not been sick in a while and no hospitalizations in over a year (yeaaaaa). However he has a bad gall bladder that is to risky to remove now and a hernia that keeps him in pain daily. Glory to God it could be worst. I thank God that he is doing as well as he is. The liver cancer scared me because I was told and have read that if the cancer spreads there will be no transplant. Praying that they got the cancer with the chemotherapy embolization a week ago today. So glad I found this sight. It makes me feel so much better and less worried when I hear such amazing stories. Thanks again for sharing your story with me. Beautiful picture!!