Hi, MaryLouise, and welcome to the forum. I am the moderator that Carol mentioned. I do have a similar history as yours, except that I didn't do treatment for hep C. I was diagnosed in '93 and at that time, the only treatment available was interferon injections 3 x a week. They made my white count drop dramatically, so the doctor took me off treatment. I had contracted hep C in the late 60s.
Like you, my liver was compensated. Aside from fatigue, I had no symptoms for a long time. I was getting a routine sonogram annually to check for liver cancer. It was fine until '05 when the US revealed a huge HCC, completely filling up the rt. lobe and metastasized into the inferior vena cava. I was not a transplant candidate. I underwent chemoembolization to shrink the tumor, but it was not shrunk nearly enough. However, it did shrink the part in the IVC to the main tumor. Then I participated in a drug study for TheraSphere, which were microscopic beads of radiation to the tumor. It killed the tumor, but also killed the rt. lobe. In '06, I underwent resection of the rt. lobe, in which the entire lobe was removed. I was doing well for 4 years until an MRI in March of 2011 showed I had a small tumor in the remaining left lobe. They said that transplant was my only option, though I did have a chemoembolization.
Mayo, where I was being seen, started transplant evaluation immediately. Mayo is very, very thorough, and I had tests and consults almost every day for 6 weeks. It was very grueling. Because of the new cancer, I went from a MELD of 7 to 22. I had been on the list for 3 mos. the day I had my last chemoembolization and that bought me 3 more points. So I was actually a 25 when I had my transplant about
3 months later. At the time of the final chemoembolization, my tumor was 4.9 cm. As you know, the cut-off for transplant is 5 cm. for a single tumor. I've forgotten the limitations when there are several tumors. They will always try chemoembolization--sometimes several times--to reduce the tumor size. It generally takes about
6 wks. for the treatment to do its job. Also, I don't believe they will do this more than every 3 mos.
I don't think your AB blood type will cause you less wait time. It's a rare type, so you will probably have a longer wait. I'm O+, the most common blood type.
California does have a very long waiting list. It would be better for you to move to AZ and go through Mayo in AZ, which means obtaining the records from your current center. Even so, they may want some tests redone or more added. I will say that Mayo does push forward patients with HCC.
Some of your questions are difficult to answer, as every center is different. Mayo has the shortest wait time in the nation, though Florida Hospital in Orlando also has short wait times.
I have a blog on here about
my pre-transplant and transplant experience, as well as a continuing one on post-transplant. Most all patients have a few problems post transplant and I've had my share. For the past 4 1/2 mos., I've been fighting leg ulcers and infections in them. Being immunosuppressed, it takes a long time to heal. Nobody knows why these ulcers are appearing. And no, I don't have diabetes.
I was in the hospital post-transplant for 8 days, though they were trying to get me out at around 6 days. I didn't feel comfortable enough with the drugs, and told them so. You will need a good support system. Mayo insisted I have a caregiver with me at some of the pre-transplant evaluation appts., as well as while I was in the hospital (with me from morning to evening) and someone with me 24/7 for the first month post transplant. The original caregiver got sick and so did my backup, so I had to get my sister to close her shop in Charleston, SC and come down to fill the caregiver role. She stayed 10 days, but could stay no longer. Since I was doing fairly well at that time, my transplant coordinator said I could be on my own.
I really did need her help that first week or so at home. I came home with 2 drains that had to be cared for and ran into some problems. There are a lot of meds that you will go home with. At Mayo, they ordered everything I would need from a specialty pharmacy, which delivered them to the hospital just a day or so before my discharge. Those meds (totaling 21 including BP and vitamins) had to be set up in a pill box for a week at a time. They pushed protein in my diet. I developed steroid induced diabetes immediately following transplant, and they were giving me insulin. However, before I was discharged the glucose levels became normal and have remained that way. I did have to do finger sticks for about
10 days after discharge.
I had to return to Mayo at 8 AM the day after discharge, which was at 8 PM. For a week or so afterwards, I had to go every day for labs. There was also a test or meeting as well. Everything that you've had done prior to transplant will be done again, plus some...like ultrasound of the bile ducts. You have to have these clear 3 x before they will remove the drain...several weeks later.
Eventually, the labs and tests, etc., will be less frequent. At 10 1/2 mos. post-transplant, I am now only having blood work once a month. However, I do have other scans and Wound Care appts., etc., due to the leg ulcers. I've also had several hernia repairs prior to transplant and afterwards. I am experiencing some joint pain, which I feel is a result of taking Prednisone for 4 mos. after transplant.
I hope I've answered most of your questions. If you have more, please feel free to ask.
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Post Edited (hep93) : 8/15/2012 4:14:54 PM (GMT-6)