kimk

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

Cathy,
I’m so thrilled to hear of your progress. Yes, my husband also got CMV (even though his blood work showed he had the antibodies for it). He was on the right track, they sent us home to Seattle and boom! he felt sick again. But the Mayo got him on the right antiviral meds and he recovered quickly. Aren’t doctors amazing? John’s hepatic vein was damaged in radiation, but during the surgery they gave him a new one (from a cadaver). We recently reached out to his surgeon, who said just knowing that John was doing well was thanks enough. Good luck to you too Cathy. All the best.

Betsy,

I am not an expert, but I believe DIA stands for Digital Imaging Analysis and its a test used to detect cancers. FISH stands for Fluorescence in-situ Hybridization and it looks for mutations in chromosomes. I believe its the FISH test that is so cutting edge. One of these tests (I’m not sure which one) was developed at Mayo and requires a special machine. At the time, I recall John’s doc saying Mayo was one of the few hospitals to have such a machine. So much was going on then, that I didn’t ask more questions. I hope this helps. All the best to you.

Kim

Thanks to all for the well wishes! Yes, Gene posted a link to the story in the paper about my husband. We are in the skiing business, and he has a bit of a following. I am currently writing a memoir about our experience, tentativey titled, THE NEXT FIFTEEN MINUTES, in which I draw upon our lives as skiers and adventurers in order to get through his grim diagnosis. Like any difficult situation, sometimes the only way through is in short increments–for us it was often only fifteen minutes at a time. The future is certainly bright. Next week, we are hosting the Olympic Games at Cypress Mountain, one of the ski areas my husband manages. Dreams do come true!