Successful Transplant
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Your story is really an encouragement, I will let my brother know. He also feels okay after the surgery and hopes to fully recover.
Marion,
The match to find the living donor took quite some time. This was certainly the most frustrating part for us. Due to privacy issues for the potential donors, we were left in the dark about the process. And yet the potential donors looked to me to explain the process to them. All potential donors must be relatives or close friends. The clinic denied some keen donors for reasons we never understood, but perhaps they wanted to make sure the individuals really cared about my husband and wouldn’t back out at the last minute. At times it felt cryptic and glacially slow. The clinic would only test one potential donor at a time. Then we would find out that the donor was not a match and weeks would go by until we heard another one was being considered. It was torturous to think that the cancer could be regrowing. I was not considered as a match, and I felt helpless to watch it all unfold while my husband went through 14 ERCPs and numerous stent changes. He grew weaker and weaker every day.
When John received the right lobe of the donor’s liver, it grew to normal size in 3-4 weeks. For the donor, his remaining lobe regrew to the full size of his former organ in the same amount of time. For several months, however, the donor suffered from some digestion issues, and had to take several different medications to sort it out. Now, he is back to his pre-surgery health, but it took a toll on him–both physically and mentally. It is difficult to fully express our gratitude to the donor, when he so selflessly sacrificed himself for my husband. He is truly our hero.
I have spoken to other donors during our visits to the clinic. Others seem to have tolerated the surgery better. Certainly a deceased donor provides fewer complications, but for cc patients the meld score rarely matches the true need to get those cancerous ducts out of there.
The biggest concern for my husband was post-surgery complications. He did get an infection in the fourth week that needed high doses of antibiotics. That set back his recovery a few weeks. But when that cleared, he felt terrific. After a year of being sick, he felt healthy for the first time. The pain from the surgery was nothing compared to the pain caused by the radiation and the earlier pancreatitis that occurred during his first ERCP.
I hope that answers your questions.
Cheers,
Kim
Kim…thanks so much for sharing your story with us. You mention “living” donor; I am wondering how difficult it was to find a match. Had the donor experienced any complications? And, how well and in which time period did the donor recuperate?
Hugs,
MarionKim-Welcome to my world I am alive, due to two transplants!! I do remember being diagnosed and reading your blogs, thanks for the inspiration. Thanks for posting another transplant success story, I can’t wait till our column is as busy as the others.
I remember all the feelings you mentioned, the wait, the staging surgeries but 3 years and 4 months later I am here!
Lots of prayers for my transplant buddy-CathyDearest Kim, what a totally amazing story and you have given so many others a barrel full of hope with this. Congratulations on your book, that is very exciting and I am going to look it up. Thank you for this wonderful update and please let us know how things move along. Wishing you both the very best!
Hi,
Your husband are among the few of the chosen ones that God’s Grace is upon him in the time of needs. It is a gift that forever shows God’s Grace is His own choice and nothing is related to the character or behavior of the person he chose. But He is always watching.
Congratulation to such a good and uplifting experience for our members.
God bless.My husband received a living donor liver transplant at the Mayo Clinic. Last May he celebrated the fourth anniversary, and he is cancer free. He had PSC for 19 years, knowing that he would someday need a liver transplant. When his liver function took a turn for the worse, we assumed it was the PSC. The PSC was causing problems, but the main culprit was cholangiocarcinoma.
He went through the Mayo Protocol under the guidance of Dr. Gregory Gores, which included chemo, external radiation and internal radiation.
The hunt was on for a living donor, since the PSC wasn’t far enough along to garner a deceased liver. He was on the UNOS list, but the cancer would return before he got a liver. The docs figured he had about 150 days maximum from the cancer treatment to the transplant. A good match was found on day 180. We were worried it had taken too long and the cancer had spread. The day before the transplant was scheduled, my husband went through a staging surgery in which the surgeon opened him up to make sure the cancer hadn’t spread outside the bile ducts. If it had, the transplant would be off. Waiting for the results of that surgery was the longest day of my life.
My prayers were answered when the surgeon returned to the waiting room to let me know the cancer had stayed put. The transplant was a go. The next day, my husband received a partial liver that regrew in about four weeks. He was back to his normal activities, including running a ski area, surfing, cycling and golfing within a few months.
Since then, he is doing great. The PSC has returned, but the docs assure us the chances of another transplant are small. The docs keep a close eye on him, and the cancer has not returned.
When my husband was diagnosed, I found this forum and read every line, searching for hope amidst the stories. Unfortunately, these stories are all too rare. But I did find tremendous hope and love here, knowing that even in our darkest moments, the best in human nature endures. I also wrote a book about our experience, called The Next 15 Minutes: http://www.amazon.com/The-Next-15-Minutes-Strength/dp/1933016116.
I hope that our story can provide a glimmer of hope to others, knowing that doctors and surgeons are working to find a cure.
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