Liver Transplant-End Stage Liver Disease

Something's brewing. How do you feel about this? Anyone with liver disease may need a transplant at some point in time. Themister treated twice, tried to outlive his sick liver and avoid end stage liver disease. But here he sits....transplant list, Mayo, AZ. Mayo transplants average MELD at 27-28.

www.cnn.com/2014/09/03/health/liver-transplant-fight/index.html?hpt=hp_t2

Thanks for sharing this interesting info. It appears to be an attempt to level the playing field. It won't solve the problem of too few livers. I don't know the donor stats in the U.S. but in Canada they're pretty low. It's too bad we don't have better ways to motivate people to sign their donor cards sooner rather than later. Right after someone has passed away is just not the right time for it.

I'm battle fatigued right now too although my summer was ok overall.

Great post.

Everytime someone has asked me what can they do to help, I tell them to sign their donor card...to tell their kids and grands to sign theirs....once we are gone, we don't need those organs and others can live on.

I firmly believe we should have an "opt out" system, not an "opt in" system...where those with illnesses or specific religious or ethical issues could sign an affidavit that would get them a pass...they could take their nice new liver or lungs or kidneys to the crematorium or cemetery...but for the rest...terrible things happen to good people and something wonderful could be the outcome for another person and another family.

My two cents.

Hugs,
Mama Lama

Deb...You have been a stranger this summer! You are battle fatigued, or you battle fatigue? I think both are something totally understandable. Are things still improved with the HE and life in general for you? It sounded like the move was a positive, over all...well, except for that broken wrist while you were packing ;)

As for the donor prob' in the US...too few organs, too much need.

6,000 liver transplants done per year, approximately.

15,600 people waiting, approximately.

1,500 people die each year while waiting for a liver transplant.

David, I agree with you on the transportation of livers. They don't hold up as well as kidneys, for instance. I can see both sides of the argument, would dual list, but so many get too sick to move.

It would be nice if transplants were performed before patients become so horribly ill, wouldn't it? But that only happens in some regions and some transplant centers in each region.

I have been following a complicated case. A fellow that stuck around UCLA too long. And nothing negative about the facility, just the amount of patients and lack of donors. He did treat his Hep C with Solvaldi. Luckily, a friend contacted Nebraska, and got this guy lined up to dual list. By that time, this guy was so ill he was unable to travel. Finally cleared to make the flight. Like many with high MELD scores, he fell off the list as he became too sick to survive. Then they tuned him up and he was back on the list, transplanted, and seemed to be doing well....then a bile leak and complications. Hospitalized months, rehab a month, and now back in CA.

Your region is really hard hit by the high MELD, and I wonder how the transplant surgeons feel about this. Big Hugs

There's a reason why you don't receive a transplant until you're almost at the "end." If there were sufficient donor livers to be had, that wouldn't be an issue, but there aren't. I found out a few years after my transplant where I stood. When I asked my surgeon how close I'd been, he replied; "maybe a week." So, you need to be close to death, but able to survive major surgery. I had ESLD for 4 years, barely getting through each day. I'd have loved to have had a transplant well before that. With a MELD score in the teens for those 4 years, had they given me a liver, other people in more serious shape would have died waiting. I acknowledge that this is how the system works. Obviously, it would have been nice to have a transplant once my liver went to hell, but in a way, I feel as if I paid my dues. It made me appreciate my new liver more than I would have, had it been too easy.

On the same subject, with so many Hep C patients taking the cure, there should be more donor livers to be had in the future. Had there been a better cure when I was first diagnosed with Hep C, there would have been no ESLD, hence no need for a transplant. I did do the interferon/ribavirin early on and was undetectable for nearly a year. Then a couple of cerebral hemorrhages caused such trauma that my Hep C came back harder than ever. Within a week, my liver was trashed and that was the beginning of my ESLD journey, which led to a transplant.

themiz,
I can't speak to the subject from the same standpoint as you. You're a caretaker, which is much tougher than being the patient. As a patient, I never thought I'd get a transplant. Being sick for years made me believe it would last forever and that was what I had to live with. I concentrated on getting through a day at a time, never looking towards the future. My docs never told me where I stood on the list and I didn't ask. I didn't ask, simply because I never thought I'd get one. The call was a complete shock.

In your situation (caretaker) is very frustrating as you feel helpless. I went through that when my sister was fighting ovarian cancer. That was much more difficult and heart rending than being sick, myself. I don't know whether this new UNOS idea is even viable. I have read there is a new method of preserving organs for transplantation, that would keep them "fresh" longer. It keeps the organ warm with fluid circulation. As far as I know, it's somewhat new and is only being used for hearts. There's nothing I'd rather see than themister and others in his situation receiving a transplant. Do you know where themister stands on the list? Most people waiting do know what the number ahead of them is. I'm glad I didn't know. Knowing would have made me crazy.

That organ assist sounds like the same thing, though the article I read is in the US and is (so far) intended for heart transplants. Also I don't recall it used any refrigeration. The biggest hindrance is that each unit is well into six figures for a single use.

themister being at 14 is just like I was for the better part of 4 years. Within less than a month, I went from 15, to 16 to 18, then in a week from 18 to 24. Three days later I got the call. I've never asked what my MELD score reached in the last 3 days. It happened very quickly. When the transplant coordinator called, she told me I was at #3, but they jumped me over the 2 folks ahead of me, because I was "the right size." My blood type is B+. Only about 8% of people have it, which makes getting a match a little easier than a very common, or uncommon blood type. It's entirely possible that themister could have his MELD rise quickly for no obvious reason. I think mine was due to 2 cancerous tumors that had begun to grow. They were so new that my blood tests didn't show any markers a week before transplant.

I am sorry that you have had to be a caregiver for so long. No one deserves that much responsibility for first your father and then your husband. They are lucky to have you in their lives. My partner deserted me early on. She didn't want to have to help. The important thing is that it made me more determined to live.

@david... You had HCC?