Cirrhosis Support Group

Short history of my dilema, dz05/2006 with cirhosis after a variceal bleed episode which took me to ER and next 4 days in ICU. Up till then no real clue except for some occasional Edema (typically following a long flight). I managed to get my lab test numbers in line with "normal" reference numbers and was taken off a transplant list around 11/2006.

Problems have resurfaced and have gone to ER twice (I could tell ammonia levels were rising - 1st trip) (2nd trip due to blood loss- varices) both resulted in multiple night stays in ICU again. Endoscopic variceal banding performed each time also + 1 more time during seperate apppointment.

OK now my question(s) - My lab results numbers are fairly normal still, I do suffer from ascietes fluid build up which is a recent change. But I still question my Hepatologists opinion that my liver is shot and only option is transplant. THOUGHTS?

Always,

I understand you question. It seems like a oxymoron to say you need a transplant but your numbers are OK. The liver is a amazing organ continuing to do its thing until we wring every last bit of it out.It will work with very little of it left.

First let me say it takes a long time to get to the point where they actually do a transplant. So they try and get things going well before its needed.

With cirrhosis patients the hardest thing for Drs. to deal with is the speed in which we can decompensate.If they wait until the labs are right there is sometimes little time to get everything in order. I spoke with a transplant team member one time and he said that the scariest transplant they do are the ones that come in on a emergency basis for sudden liver failure. He told me that not knowing enough about the patient makes post transplant care much harder.

Since you have already been through the transplant process before you know how many test they do and how drawn out the process can be. Most people that I know on the list go up and down in priority and some do go on and off the list. If you are already on the list and decompensate then its much easier , and quicker for them to move you up in priority as needed.

No center ( that I know of ) will transplant before there is no other choice. Also I truly believe that is you are working with a transplant center that you have a greater access to the best possible care out there. Also it seems to make your other Drs. pay more attention. Just my 2 cents worth.

Gail

Update to my "situation":

I'll do my best not to sound as confused as I feel. After having 16 or so upper GI ligation edoscopies I still suffered another bleed episode. Desperate messures (scelegraphy)were required to stop it as the bands kept coming off due the amount of scarring on my esophagus. Decision was made to place a TIPS. No bleeding since, BP is running fairly normal and LF blood tests have come back with MELD in 12 to 14 range. So now what? I feel as though I'm getting dumber by the day, short term memory is shot, SEVERE abdominal cramps, scribble for handwriting (printing, cursive is impossible), constant fatigue yet can't sleep at night, and forget about trying to do any physical work. Social Sec. Disability pay doesn't cover all my bills, but financially my biggest concern is making sure my son gets to go to College (Just finished H/S Soph. yr. Honor student athelete).

Thanks for allowing me vent a bit and to ask for advice.

sumpin, this is the place to vent without anyone reprimanding or judging you. We all do. I can relate to many of your issues personally. It is the pits. My meld is low at this point, or it was 3 months ago. I have read that TIPS can help HE too.

Don't worry about your son, if he is an honor student and athelete he should be able to get some scholarships. Keep following your doctors orders. I will include you in my prayers. Take care, Bonnie

Alwaysumpin, just so you know, it could take years to get listed and once you're listed, it could take another couple of years or more to get transplanted. My advice to you is to go ahead and jump through all the hoops to get listed. You can always change your mind later, but at least you'll have the option of changing your mind.

Thanks!

Cets, aside from the psychological testing (if required) I think I've completed required tests. ie CT scan(s), MRI scan(s), ultrasound pics and reports, financial counciling, Wife and Sister have been in to attest support - transplant hospital is 2-1/2 hours drive. (Entire family met with local Gastroenterologist for same)

Can you think of snything I'm missing?

Does the frequency of labs / scans increase when officially listed?

Assuming I'm approved for listing, what reason can you give to be put on what I will call a "holding pattern"?

My thought is to go to the home page of two transplant members and to one of the site leaders, who has a meticulous website on liver disease, and who all offer and share an incredible amount of information. Click on their logo's to go to their home page:

mpmom - leader

dmanflan

mikealpha1

You said you were concerned with the hepatolgist opinion that your liver is shot. Solution -- get another opinion. Also, ask him/her what it is specifically that makes them say that. With that amount of varicial bleeding I would think you could apply for extra points towards transplant. My MELD was not extrememly out of line (13-17) unitl the last two months.

Frequency of testing is not determined by whether you are listed, but by the MELD score. As Capedrifter said, click on my picture to learn more about my transplant experience. I too have a 16 year old son going into 11th grade and the best thing I ever did for him was get the transplant.

Alwaysumpin,

Don't forget the stupid dental work and vaccinations. They usually send you a letter letting you know whether or not you are a candidate. The "holding" pattern is waiting for a match or until you are sick enough to be eligible. The organ usually goes to the sickest match on the list, not necessarily who's been on it the longest.

Of course there are health related exceptions, severe HE resulting in coma, liver cancer and a few other things. They are listed on the UNOS website. Also, different transplant centers may transplant at different MELD scores. Once you are listed, you might want to consider listing at a separate institution outside your transplant zone. As cold as it sounds, it's based on supply and demand. A transplant center in a less populated area may transplant a little sooner, a teaching transplant center may take on riskier surgeries, etc. You really do have to do your homework.

I hear ya, and knew all that from my homework. Guess I was more curious about Dr. recommending me to the board, gaining approval and then me saying "Hey that's great but could I hold off for a while" Comes off sounding pretty flakey.

Somewhat unrelated question have you read about the use of "extended criteria" livers. I'm all for it but it sounds like they want to target healthier, low MELD score recipients in order to maintain overall survival percentages.

Also I thought vaccinations were on the "Not to do" list ie. flu vac. due to chance of vac. futher damaging liver.

Mikealpha - Thanks look forward to some further discussion w/you after checking out your site.