After Transplant Questions

Hi Jayne Louise,

Welcome to the forum.

We are a group of patients and caregivers of liver patients.

Our senior moderator will have a lot to post about your case as hers is nearly the same, but she is out and about this morning and will post in later.

I'm a caregiver and we have had a similar ride. Several posting here have recently been through the transplant process, so you should get lots of advice.

First, I'm sorry it has come to this, but barring transplant, your options have expired.

Mike has had Hep C for 40 years but they didn't find his tumor until he was well through the evaluation process.   He was transplanted May 1, 2011 and is doing pretty well post transplant. He is 62 and glad to be alive.

UNOS allows posting when the patient has a MELD score of 15. Most centers post the folks, but they don't allocate livers by time on the list initially, but rather by the seriousness of the patient's illness. So a patient with a MELD of 40 from a poisoning or 38 from Auto Immune hep, would get their turn at bat before one with a MELD of 25 or so.

YOu can sign up at more than one transplant center or transplant region if you have the funds and flexiblty to fly off to a center when your number comes up. That's how Steve Jobs had a shorter wait time than many.

AND, the US is divided into regions and the donor organs go to the region of orgin FIRST and then may be sent off to other regions, but the supply always lags behind the needs. This leads to some difference in average wait times and average MELD at transplant from region to region.

I am in Florida as is Connie, the moderator I spoke of above. Mike and Connie were both transplanted at 22 or 23, I forget exactly just now. They were both given an extra few points becuse in addition to End Stage Cirrhosis, they had Hep C AND a tumor less than 5cm.

The chemo embalization is helping to keep your tumor small enough not to cause you to be dropped from elegibility. They can do that again if need by, by the way.

I worry about your moving nearUCLA. But maybe you are in CA already...and I worry because the average wait times and MELD scores are longer and higher than some other places!!!!!

I read something awful here once...choose a state with no motorcycle helmut laws...all that freedom to choose causes extra traumas (silly motorcycle drivers).

We see our Veterans are not transplanted until the mid to high 30s.

Note that not only blood type is a factor...weight and time on the list are other factors. And they want as much matching stuff from the donor as possible...identical twin would be best!

What is your MELD now? Is your center using the modified MELD that includes sodium level?

Hospital stay after transplant = depends on how sick you are going in. Those in pretty good shape...a week or a bit more. Some, however, who have gone way downhill before face long hospitalizations and longer recuperations.

There are lots of labs and check ups after. 2ce a week, 1ce a month, 1ce a quarter, 1ce year...and the progression along the way varies by the variable health of the recipient. Some folks sail through this and go back to work in 3 months. Others are disabled forevery. Who knows.

The alternative if transplantation is not available for you...sorry...what ever additional chemo or resection can be arranged locally...or go to India where you can buy a liver lobe.

Tough answer. Sorry.

Best,
Mama Lama

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.

Hugs,
Connie

Hi Connie,

Sorry to piggy back on someone elses thread. I have a question for you. We live in CA, my husband is treating at UCLA all we have is an HMO do you know if they will cover you in another state? I guess I should call them. My husband has already been told he won't give organ offers until he reaches 30-35 that mean's he still has to get pretty sick. Or does it? Right now he's at a 9, we will find out on Wednesday if he will get the MELD exception due to the tumor size.

Thank you in advance
Barbara

I agree with Carol's response. His HMO most likely will not be valid in another state. Give them a call. Also, in the case of Mayo, they will not accept an HMO. The tumor should bump the MELD to 22.

Hugs,
Connie

B, Start a new thread for that and let's continue with JL's questions here. Carol

JL,

I can hear the anxiety in your "voice." Waiting is tough.

Can't make any recommendation about moving, but you seem pretty good with your computer.

UNOS has a GREAT online data base. The list all the regions and centers and have subgroups for
ORGAN, CAUSE of illness, MELD score, Sex, Blood Type.

You can almost figure out where an female AB+ patient, in your hospital, sits on "the list".

Here is the main page, work through the notes to figure out how to do the reports, you set your parameters and then run the report for your special situation. If you are having trouble and need help to work it out, sent me an email directly -- see the envelope at the left side of the post..click on it and type away.

URL: http://optn.transplant.hrsa.gov/data/about/OPTNDatabase.asp

Cut and paste into browser, I forget how to make it a sticky link.

Best, Carol

PS: Mike was sick a long time. But from listing in February 2011 to transplant in May 2011 was pretty short. Those extra points for the tumor really helped as it brought him to 22...the average MELD at which Jackson transplants! I think UCLA has a higher average MELD.

Post Edited By Moderator (hep93) : 8/12/2012 11:18:33 AM (GMT-6)

I went to the URL: http://optn.transplant.hrsa.gov/data/about/OPTNDatabase.asp site and it was very helpful, thanks again. Our moving is not merely because of this liver thing, we have been in a rent controlled TINY apt for 5 yrs but my husband has finally won his VA appeal and I will now receive a pension should he pass away first (ironic), although he is 13 yrs older than I...but also, we will have to move as our income will be higher..no complaints there, this has been a 6 year battle and we finally won.

When we first got the cancer diagnosis last yr we had plans and tickets to go to Anna Maria Island in Florida (in 2 days believe it or not) and the docs said go...I have never felt such peace and calm as there...so now we may be able to actually move...big indecision as to go thru another transplant evaluation and all that entails but the stats ARE so much better and faster for a transplant there....

I am 55 and have passed all tests but still have Arterial blood gas, dex scan and 1 more quantitative Hep C blood test for eval ..and of course results of chemo embolization this Wed. I will keep posting, have been reading many past posts and this is a wonderful site.

Well my husband really wants us to move to the Tampa area...they have the good hospital there that does transplants and a great VA...I am wondering about double listing now and what kind of time frame they give you...like if I was in CA still and Tampa called, how much time to get there and vice versa...We are pretty confused and up in the air right now but will find out results of my chemo-embolization tomorrow so that will give me a much clearer idea as to my chances of transplant. Getting last 3 tests done THIS WEEK and so may be presented to tumor board next week depending on tomorrow's results. I'll keep posting! Thanks so much! Would VA transport if my husband is the vet but I am the recipient?

I got "the call" from Mayo at 3 AM. They said I had to be there by 7 AM or the liver would go to someone else. So 4 hours. Since I live only 12 min. away, I took time to make calls and finish packing.

The VA transported Debbie/cable poodle along with her VA husband, from FL to PA. I think it was a private plane, but I could be wrong. You should call the VA with any questions you might have. VA also paid for accommodations in PA, and I believe they also got some meal vouchers.

Hugs,
Connie

Got great news! Chemo-embolization was a success, and they still can't identify the other 2 "lesions on other side of liver as cancer. AFP dropped from 9000 to 1460..still way high but a Big step in the right direction! Labs next month and 2nd month, scan in 2 months, and another appointment. Said to go ahead and keep trying to get on the list. Husband is adamant about us moving to Florida, probably Tampa area...Bradenton? that area.... don't know if I should double list or just list down there, got some reading to do. Suggestions?
Thanks!
Jaynelouise

Yes! Good advice from ML/Carol! Great that the chemo worked well for you. Bradenton is about 10 miles north of Sarasota...Tampa is 50 miles from Sarasota. So if you move to Bradenton, you would only be about 40 miles from Tampa and could be in Tampa in less than an hour. I'm in NE FL, on the Atlantic side, but my heart is in the Gulf area...Sarasota. Bradenton used to be a one-horse town, but like Sarasota it has grown tremendously.

Do keep us updated!

Hugs,
Connie

Costs are somewhat high on the Gulf Coast, at least in that area, but probably less than in CA. Do let us know how your conversation goes.

Hugs,
Connie