bigtrout

Heather
I had the brachytherapy at the Mayo Clinic in Rochester, Mnn. It was part of the liver transplantaton protocol- first chemo and radiation, then about ten days of a break, then the brachytherapy for about a 24 hour period. During that time you are pretty well isolated due to radiation risk. Not real comfortable, but after chemo and the other stuff that you go through one can get through it pretty well.
I cannot speak highly enough of the physicians, nurses and staff at the Mayo- very caring, professional and helpful. I had the liver transplant operation in October, and so far everything is going very well.

If I can provide you with additional information please let me know.

Best wishes and good luck!

Marions

Thanks for the message. Here is the full story on me. 60 years old, married.

In September, 2008 I started getting jaundiced and went in very soon to see my family doctor. He got on step right away, and within that week I was given an ERCP and the diagnosis was CC. The surgeon recommended that I get into one of the main cancer centers since it was such a difficult condition.

My wife and I started calling the major cancer centers; we found many of them to be difficult to get appointments with, however with the Mayo in Rochester we got right in and had an appointment the next week. They reconfirmed the diagnosis and after some tests ruled out a resection since the damage to the liver had gone too far. At that point they discussed the possibilities of a liver transplant us and put me through quite a few tests. I got through those OK and was put on the waiting list for an organ. I also went through their standard (as I understand it) radiation and chemotherapy treatment, which lasted three weeks. Then after about ten days of recovery had an additional radiation treatment (brachytherapy).

We were told that it took about a year to work up through the transplant waiting list. That estimate turned out to be right on. During the year we waited we had multiple trips back to Rochester for regular check-ups in conjunction with ERCPs to change stents. I also had Ascites, and needed that dealt with about once a month, either at the Mayo or at my local hospital.

The waiting is a difficult thing since there is always the background concern that the CC would spread, or some other condition would come up that would preclude a transplant. I did work hard at exercising as much as I could to be as robust as possible.

In early September, 2009 I had the staging surgery at Mayo (they open you up to make sure that everything looks OK). At that time they recommended that we stay close by (within 12 hours of Rochester) since I was starting to get up on the list.

We were fortunate to obtain lodging at the Gift of Life Transplant house, which is very comfortable housing, at a very reasonable rate, for transplant patients and their caregiver. Their facilities at Gift of Life have recently about doubled in size, so they will be able to handle more patients now. You have the opportunity there to get to know other people going through all kinds of transplants and troubles, which helps to keep one’s perspective.

Out of the blue on a Sunday afternoon (Oct 4) we received a call from our surgeon and got the news that an organ was available, so about midnight that day I went into surgery. So October 5 is technically my second birthday.

Due to complications with the surgery I had a lengthy hospital stay of about 2 and half months, but I came out of it OK- kind of weak and pretty skinny, but OK nevertheless. As I understand the statistics, there is about a 70-80% chance of 3 year survival at this stage, maybe higher.

Since getting home I have regained about 20 pounds and am back on an exercise program. So far things are going good; we go back to the Mayo in March for a check up.

I cannot speak highly enough about the physicians and staff at the Mayo. Everyone there is very professional, and treated us extraordinarly well, with caring and sensitivitiy in everything they do. The nursing staff during my hospital stay was uniformly spectacular.

In summary, I have gotten this far because of the loving care and support of my wife and family, along with the quality of medical care received. Given the terrible nature of this damned disease I consider myself to be a pretty lucky guy.