Hi, Seth, and welcome to the forum. I'm so sorry that your father is battling this disease. I know how concerned you must be about him.
The only thing I know is that the Mayo Clinic DOES take other factors into consideration when evaluating and listing for a liver. There are conditions that will override a MELD score, if they feel that the patient in question is going to die within a week if he doesn't get a liver. I'm not sure if other transplant centers have the same exception, or if they go strictly by the MELD score, which (as you know) can go up and down while the patient's symptoms indicate that he is sicker than the MELD score shows. It is very frustrating, I know, as I've seen many spouses and loved ones here battle with the same things you are.
Since today is a holiday, we may not get many posts. But check back over the weekend, and I'm sure you will get some input from others.
Seth, I suppose they think it's the most equitable way to assure that the sickest patients get listed and get livers. Perhaps one day they will rethink this particular method, but for now it's all we have. As I mentioned previously, if your dad gets really, really ill--death being imminent--then he could possibly be moved to the top of the list. The very fact that he is listed is a good thing. Also, the fact that he is generally healthy except for the liver sequellae, is also in his favor as far as being accepted for transplant and surviving it.
Have they found the source of the bleed yet?
Did you get your dad that steak? Glad the transfusion helped him.
Do you mean how long have people been listed w/o getting a liver? That's one I'll have to leave up to those who have been there, or are currently going through that. The fact that your dad is generally above 20 is good. What transplant center is he using? I do know that Mayo has the shortest wait time in the country for a liver--about 2 1/2 months.
I find your post very interesting. I won't be able to post much tonight as I am very sleep deprived. My husband is on the transplant list at Vanderbilt Medical Center in Nashville. His liver Dr. there has made it his mission to study on nutrition. I totally believe what you are saying. As for the MELD score being the end all. You do get extra points for symptoms other then the three you mentioned. Such as low sodium level. Also for the fluid in the sack around the lung. My husbands MELD was an 18 all last year. He was being drained sometimes twice a week. They were considering doing a TIPS but his Dr. at Vanderbilt did NOT want to do that. After reading some of the old posts on this forum I am so glad he didn't. He did have to take what I would call lethal doses of diuretics that on a few occasions just about destroyed his kidneys. He finally stabilized in July after a year of in the hospital as much as he was out. His body is tired putting it mildly. His MELD went down to a 10 last month but is now starting to creep up agian. And the swelling is getting bad again. Her we go on that horrible ride again. One of those be careful what you wish for. I feel for you to be going through this for 10 yrs. And your poor dear Mother. I am suffering from major burn out so I can not immagine what your Mother must be going through. What do you do. Just keep going. We have no choice. Also we were told that the average time for waiting for a transplant at Vanderbilt is 15 months. But that is just adverage. My husbans blood type being O means he will have to be at about a 25 to get to the top of the list. Also Vanderbilt runs a very strick transplant program. If you don't follow the rules you can be listed. That way anyone that is on the list does not have to compete against someone that is not going by the rules. It totally makes sense. I'm rambling so I need to try and get some sleep. My thoughts are with you and your family as they are with all these wonderful people on this forum. We are all like family. Please stay with us as everyone here shares their experiences its a tremendous help.
I love your post. You are very articulate and helpfull. I== like your mother have spent many hours reading and trying to understand this disease. Not being in the medical field has made it much harder for me. But I too am surrounded by a great support system of family and friends. Our adult children do read as much as they have time about this horrible disease. As I tell our friends it consumes all of my time. Our world is now all about ESLD. Its all we now have time for. That and trips to the ER and Dr. Not to mention the three hour drive to Vanderbilt every 90 days. That is until something life threatening happens. This month we are deep in to blood transfusions. They are coming every two weeks now and it is taking two to three to get his HCT up so he can at least function. Next week back to Vanderbilt for a scope. To try and find the bleeds. They have told us they may not find any. I'm not sure if that is good or bad news. I think his MELD should be rising this month as both legs are swollen to the point of seeping fluid> Yes, it is horrible. I do try and take care of myself. At least the best I can as I watch my best friend suffering so. Thank you Seth for you imput and I hope you continue to inform us. I am very interested in the nutrician part of it. As I have a brother that is a quad. He was educated at the Univ of Wash. 20 yrs ago when he had his accident. They trained him very will on nutrician. His life expectancy at that time was 10 yrs. They did do a good job.