Dad is getting evaluated to be approve to be sent to a transplant center.

Hi Everyone,   I've been coming to this forum for information for the last month.  My dad is 62 and currently being evaluated at Kaiser in California to be approve to be sent to a transplant center so he's going through the same testing they would do at a transplant center.    My dad has Hepatitis B, Cirrhosis, Kidney disease and he's had issues with HE in the past.   Once his kidneys were bad he was referred to a Liver Transplant doctor and has been seeing him for the last 2.5 years and get his blood work and ultrasound done every 6 month.   His MELD score was never high enough so we were told to wait on the evaluation.   At his 6 month ultrasound in late July, they discovered 2 spots on his ultrasound.   They couldn’t do an MRI with contrast because of his bad kidneys so they did some blood tests and CT scan.   According to CT scan it looked like it was 1 spot and AFP was in the 700’s; so they assume it was cancer.   We followed up with the liver doctor a month later and his AFP drop to the 100’s so his liver doctor admitted him to hospital to get hydrated so they can do the MRI with contrast.   However, the images were really bad because my dad didn’t hold his breath during the test so it was useless.   It was frustrating because we took a risk with his bad kidneys to do the MRI.   He started the evaluation on Oct. 15 and got all the testing done that week.   His case was supposed to be presented on Oct. 30 th but the meeting was canceled so it was presented the following Tuesday.   The case was presented and the committee requested a CT scan of the chest, Bone Scan and MRI with contrast.   I had to remind his transplant coordinator that his kidneys are bad so she checked with his liver doctor and they are holding off on the MRI to see how his kidneys are and this is the only test remaining.      Also, Kaiser doesn’t have a Liver Transplant program so they contract out to other transplant center.   During our orientation, they did tell us going out of state is an option and that UAB in Alabama is the best option and that Mayo in Jacksonville is no longer accepting contracts from them that are under Medicare.   Currently, my dad looks better than he did the past few years. He takes 2 walks a day and we’ve been watching his diet (low sodium).   It’s been stressful for me because it’s been 3.5 month and we are still waiting.   I’m worried that the tumor can be growing or spreading and then he’s not eligible for a liver transplant.     Does it normally take this long?

Hi Thing,

Well, this is very complicated. We may have someone here with UAB experience...HELLO, Members?

I posted a URL about the number of transplants at centers by organs yesterday for a member. Did you see that post? It is one or two below your thread. Look up as much as you can about both centers and make some decisions about what the MELD scores are when they transplant.

The MELD score is calculated with creatinine, bilirubin and INR. Do you have a recent MELD calculation? That should be most helpful. At our center, in Miami, where my partner was transplanted, the average score is 22. Also in Mayo JAX. But at the VA centers and in CA, the average MELDs are closer to 30. The patients are much sicker.

http://www.mayoclinic.org/meld/mayomodel6.html

You can calculate it yourself with recent lab results. Cope and paste the url into your browser, or search on MAYO MELD CALCULATOR in google or bing.

Please know that my partner was very very ill for over 8 months, with a qualifying MELD score, but had to complete an alcohol cessation program (6 months mandatory) and had to have his tumor(s) remain under 5 cm in total. The statistics demonstrate that post transplant success is best with those who do not have tumors over 5cm and who are not alcohol dependent at time of transplant. Those with active Hep C don't do as well either after transplant, but they are not denying them organs, thank goodness.

Best to your family. Many don't make it to the finish line...I hope your family has success.

Mama Lama from Florida

Post Edited By Moderator (hep93) : 11/13/2012 4:55:09 PM (GMT-7)

http://transplants.kaiserpapers.info/archives/171

This is what I was talking about.

Hello, Thing, and welcome to the forum. I had a transplant at Mayo FL in Oct. '11, covered by Medicare (no supplement.) Is it Kaiser they won't accept? I do know that they will not accept HMOs, which most supplements are. Once I was placed on the list, I got my transplant in 3 mos. I also had liver cancer. I was treated once when the tumor was 4.9 cm, since the cut-off is 5 cm. Your dad's cancer will buy him extra MELD points as an exception.

Will whatever transplant center he goes to do their own evaluation? I think Mayo would.

Has your dad applied for SS Disability? If he is approved, he would get Medicare in 2 yrs.

I know nothing about transplant in Ala. I hope that your dad will be able to hold his own until he can be listed. It's good that he is looking better and walking. However, that tumor is growing, I can guarantee. It's a very aggressive cancer and grows rapidly. As you know, it has to be under 5 cm. He will most likely need chemoembolization to shrink it if it gets to, or near, that point.

Hugs,
Connie

Has anyone thought about a live donor?

I don't think Alabama is currently doing live donor too because they haven't done any since 2001 and only have experience with 6 live donor prior to 2001.

They haven't mention anything about a live donor and done some research myself. I have been diagnosed with a fattly liver so I wouldn't be a candidate. But it is something to think about.

I am still waiting to hear back from his transplant coordinator regarding the MRI w/contrast, she needs to check with his liver doctor. This is the only test remaining that the committee is asking for.

Also, my dad has been developing a lot of brown rashes/spots on his back and it's itchy. Any ideas to help the itching?

Thing , UNC Chapel Hill has a great Hepatology / Transplant program . I am currently not on the active list there at the moment ( Due to improved health ) but I know many people I have spoke to that have traveled from all over to get the quality care they provide . They have the Ronald Mcdonald house and other facilities for families also very close by or within the campus .

My step daughter also is seen there for her hearing impairment ( Completely Deaf ) , She had a cochlear implant installed and her hearing almost normal . Two of my dearest friends are cancer survivors that have been treated at UNC , That place has had a profound effect on so many peoples lives that it's unreal . Duke University is also close by UNC and they have some of the highest awards in medical excellence .

I live in the lower southeastern part of NC so we have to drive 2-1/2 hours one way ourselves just to get there . I'm actively considering moving closer to Raleigh so we don't have to incur the expenses of traveling back and forth routinely between myself and my step daughter . Hey , It's a biased opinion but from my experience with hospitals I don't feel comfortable in anyone else hands . Just too much to lose if ya know what I mean .

A. Ziffle

Thing, do you know that St. Pete is on the Gulf Coast and Mayo is on the Atlantic Coast, in Jacksonville--all the way across the state in the NE corner?

Hugs,
Connie

It's Connie, not Carol.

Hugs,
Connie

Don't worry Thing !! Connie and Carol are easy to get confused . Just look for the typos , One hasn't misspelled a word since birth and the other has . .

Sorry ladies I just couldn't help it , Must be the nicotine patches .




A. Ziffle

To make thing more confusing, both of our initials are C A!!!!!  We send e to each other like that...

Dear CA

Hugs, CA

Ha ha...good one A.Z.

David, you mean living donor? St. Pete certainly would be closer to Tampa General, if Kaiser would approve them and TG accept Kaiser.

Hugs,
Connie

David,

I'll ask if they contract with Tampa General.