Cirrhosis Support Group

Dennis type B+ = blood type. Only 10% of population have this, so the list is shorter. I've been told that there is a national shortage of good livers.

Yes, I know about listing at 2 sites, but we are 2 hours from Oklahoma City and the next closest is over 4 hours away. Would have been great had they done it while I lived in Michigan, we were 2 hours from both Detroit and Chicago.

Nazih Zudih transplant center is applying for permission to do living donor transplants. If they have received it or do so soon, we'll check out my 35 year old niece who has volunteered.

This is what I know: My blood type is B+, hence the reference to B+ transplant. The tx center I am affiliated with is a 2 hour drive from my home, on a good day. The next closest is more than a 5 hour drive, at Baylor University in Texas. I am aware of the volunteer air flight organizations. My choice at this time is to stay with the center closest to home. Regarding the ablation, I haven't had any experience with that issue, so Mike will have to help us out there. I was told by my hep that HCC automatically increases your chances of transplant at my center if no metastasis is present. I don't know what it does to the MELD score. I'm anxious to see what Mike finds out there too. Did this help any? BJ

Sorry, Mike already responded to this as I was writing.

Post edited by: bjlvls, at: 09/16/2010 09:28 AM

Dennis, I think Mike was referring to his blood type (B+).

Sorry, I didn't read page 5.

Post edited by: letsdance, at: 09/16/2010 02:11 PM

Thanks everyone for the clarifications! Sounds like a good news (fewer "competitors”)/bad news (lack of donors) situation. I'm working on raising donor registration but I can't seem to peddle fast enough!

BJ: Yes, HCC does increase the MELD. The amount of the increase is proportional to how aggressive the HCC is growing. I live between Milwaukee (2 TX centers) and Madison (1). Chicago is also doable (on a good day) in 2 hours. I elected to only list at one center. I guess I'm geographically lucky. Sorry you all can’t have the same situation!

Dennis

We're in the Chicago area, too, and someone said we should list (when the time comes) in the city and in Madison or Milwaukee. We were suppose to have our first meeting with the head of the transplant team at Northwestern on Mon. but that got cancelled yesterday. Jerry's also B+, Mike. I had no idea it was so unusual!

Meg: I HIGHLY recommend Froedtert Memorial Hospital in Milwaukee but then I'm a little biased! Dennis

Thanks Dennis. Personal recommendations are always welcome!!

Meg

Finally heard from the transplant coordinator about the results of the scans and what it means for me on the listing. Oh, yeah, nothing. There are 3 tumors, in size they are 1cm, 1cm and 1.3cm by MRI. The UNOS review board doesn't consider anything less than 2 cm. So, the reults aren't being submitted and we'll see how the tumors grow by my Dec. 6 scans.

Fo, for now, much ado about nothing. At least we can relax and wait.

According to the Milan criteria, "...small HCC (1 nodule < 5 cm, 3 nodules < 3 cm) has a very good chance of recurrence-free long-term survival after LT... Liver transplantation seems, therefore, to be the best available treatment for small HCC in the patient with cirrhosis..." Did you ask if your status has increased, even though your MELD score was not yet adjusted to reflect tumor size? I'll PM you with some documentation. Bobbi

Bobbi, they aren't going to submit anything to try to increase my status. The HCC stage would be T1 and they don't do anything until it is T2. Thanks for the info.