April 26, 2006 at 6:44 pm #14090kathyjMember
Congratulaions on your speedy recovery from the transplant! Way to go!
I’ll return to Rochester on June 12th for appointments, we hope to be able to return home on the evening of the 14th. It looks like we will miss meeting each other.
I’ve been having some problems with my hemoglobin, I’ve had to have two blood transfusions, one in March, and the other one yesterday. When the level goes down to 8.0 then Mayo wants me to have the transfusions. I do feel a lot better after I receive the red blood cells but wish the iron pills I’m taking would help more to raise my hemoglobin levels. Mayo will do a bone scan in June to see if there is a problem with my bone marrow. If there is, I don’t know, yet, what the treatment will be for that. Otherwise I feel pretty well, I do have some back pain, especially at night when I’m laying down, but it seems to go away during the night and is gone by morning. I think that’s strange but something I can live with as long as it doesn’t get any worse. When I return to Mayo in June they will also do more blood tests, a CT scan and an ultrasound to see if the mass they discovered in March has grown or stayed the same size and to see if my CA-19 level has changed.
Yes, we did tour the transplant house. It’s a great facility but we have a motor home and prefer our privacy over the communal living arrangement at the Gift of Life house. We found many other Mayo patients at the RV park we stayed in – Autumn Woods – and were able to meet new friends with whom we have stayed in contact. We like staying at either the Kahler Inn or the Brentwood Inn for the convenience of closeness to the clinic when we are there for a short stay. We’ve taken the motor home there twice, each time we were there for a two month stay. Do you live near Rochester? We fly into Minneapolis, rent a car, and drive down to Rochester.
Thanks for responding and maybe we’ll meet sometime in our course of follow-up appointments. Again, congratulations on your successful transplant! We are so pleased that we went to Mayo for our treatment and feel very confident that they will find a cure for most problems, if you go to them before it’s too late for treatment.
Olympia, WAApril 20, 2006 at 7:52 pm #14089mnaussParticipant
I had my transplant on March 20th. A liver became available while my wife (my living donor) and I were waiting for our surgeries to be scheduled. Mayo had told us that if a deceased liver became available that they would go that route because there is less chance of complications. I was released from the hospital March 29th and stayed at the transplant house for about two weeks. Things were looking very good so we were given the go ahead to go home on April 11th.
Did you ever tour the transplant house? It is a very nice facility, we had the chance to meet some very nice people. It was helpful to hear all their great stories and the miricles that take place each day at Mayo. Not all the people had stories of success but it was also an inspiration to see how positive these people were and how they were making the best of a not so good sitituation.
We will return to Mayo June 19th and the third week in July. If you happen to be there at these times maybe we could have lunch or just a cup of coffee. That would be nice.April 6, 2006 at 2:13 am #101kathyjMember
I discovered that I was having problems a year ago while on our trip home from Arizona and Mexico. I discovered that the whites of my eyes were turning yellow so we stopped in Lake Havasu, Arizona, at a walk-in clinic. I had also been experiencing changes in my urine and bowel for about a week, I thought I had the flu but it didn’t go away. The doctors at the clinic did some blood draws and determined that I didn’t have hepatitis but thought I needed a CT scan. The scan showed a blockage in my bile ducts so they suggested I contact my doctor back home in Olympia, WA to see what he would suggest. He told me he would meet me at the emergency room as soon as I could get there. I flew home the next day. Since it was Easter weekend there wasn’t a physician on call that could do an ERCP so they decided that I should go to Virginia Mason Hospital in Seattle for further diagnosis.
Virginia Mason recognized the problem right away and after three attempts were able to get a biopsy to confirm that I had cholangiocarcinoma on April 15, 2005, and that I would be a good candidate for a liver transplant at Mayo Clinic in Rochester, Minnesota, the only facility authorized in the USA to use a cadaver liver for this type of cancer. We traveled to Mayo at the end of May. After much testing and consultations I was accepted into the transplant program. I had to stay in the area for two months to undergo further testing, chemo treatments, and radiation. In the meantime our daughter checked out the Mayo Clinic website and found out that she could possibly be a candidate to be a living donor for me. She had to lose 25 pounds and then contact Mayo again. She met her goal by the end of summer and, after two trips to Mayo herself, she qualified to be my donor. In the meantime I had chemo at home, Xeloda pills. We underwent the transplant on November 16, 2005. She returned home with her husband on the 25th of November, I had to stay in the area until the end of December. I did have some trouble with bile leaks but the recovery was somewhat uneventful other than that.
I returned to Mayo at the end of January to go through testing and to have a drainage tube removed. At that time the CT scan didn’t show any problems although my CA 19-9 was elevated to over 1300.
I returned again at the end of March for the four month checkup and the CT scan showed a 2 cm soft mass between the liver and the stomach, snuggled up next to the portal vein. They attempted via ultrasound and endoscopic ultrasound to do a biopsy but they weren’t able to get a direct line to the mass and weren’t able to do the biopsy. They have suggested that I come back in two to three months so that they can check the mass again and do a bone scan to see if anything can be done, my CA 19-9 is now above 7400. I’m feeling fine, the liver is doing great, it has regenerated to the original size, and the bile ducts are clear. They don’t know if the mass is malignant or benign or a lymph node or a fatty mass. The biopsy would be helpful.
Our daughter has returned to work, she’s a teacher in an elementary school and has a 3rd grader and a 2nd grader. She was off work about six weeks. She’s doing well.
I just wanted you to know that there is hope in a transplant but it’s no guarantee that cancer won’t return. The physicians and staff at the Mayo Clinic in Rochester, Minnesota, are very caring and helpful. I would recommend them to anyone.
Is anyone else out there who has undergone a transplant for cholangiocarcinoma? I’d like to hear from them.
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