Cirrhosis Support Group

From what I've seen the answer would be yes. As long as you inform your first center of what you are intending, there shouln't be a problem. Certainly, gamgam has had her sister registered at two centers, both in Altanta.

Ask gamgam if there are any issues??

Craig

I know we are allowed to register at more than one center but will the donor liver go to the highest meld score in the region? If so, why would it be worth it to register at both centers?

Actually, we are going to Emory for a second opinion and hopefully get Barb on their list. Right now, she is still just in process of being looked at and working on meeting the criteria for getting on the transplant list at Piedmont Hospital. It will be at least another 2 months before we know if she will actually be put on Piedmont's transplant list.

We are hoping that Emory will evaluate and put her on the list asap. If not, she is not going to last a whole lot longer. She gets a little better and then something else goes haywire. Right now, we are going haywire again.....and that was after her looking and doing so much better the is past Friday.

Good luck to you in geting on the list.

Just my thoughts: I am currently working thru Walter Reed in D.C, about a 4 hour drive from where I live. When I was first told I was sick Richmond would not take me (long story for another time). So while I will be w/ Walter Reed (and I guess that's actually Georgetown) I can still register somewhere else in this region too. I think in my way of thinking that yes, while the organ would go to the highest MELD in area, it never ever hurts to expand your possibilities. It's taken me forever to even get this far with the list and I'm still not on it because my MELD is too low. As I tell my husband, he can bet his bottom dollar when the time comes I'm not limiting myself to just one hospital. Good luck to you and God Bless :)

By all means register with as many regions as possible, hey Steve Jobs did it and got a liver quickly. He lives on the west coast and got his liver in Tennessee. What I`ve read is that different regions have more supply of livers per capita than others due to demographics with factors like motorcycle accidents (no kidding). I don`t believe there`s any advantage to registering in another hospital in the same region rather registering at a hospital in a different region that`s "doable" for you. That would up your odds. Within the same region you are still basically on the same list with all other candidates in that region. To the best of my knowledge. Therefore it gives you no more advantage to register multi times in the same region as the donor liver will go to the worst patient in that region. I`m going to double check that advice but I`m pretty confident as I`ve looked into it before on my own behalf...........Jeff

This is just my opinion based on y experience.
I was placed on the transplant list in august 1997 prior to the government stepping in and changing the rules. when I was put on the list I was told a year to two years would probably be needed before I would get a liver. during that period the feds stepped in and changed the rules saying the system and wait periods were not fair and unequal across the country. the new system was supposed to take care of that problem and new rules and criteria were established. As per usual when ever the government gets involved nothing was solved and disparities still exist. signing up at centers is still occurring although the new rules were supposed to make that unnecessary. The new system using meld scores does not take into count certain liver diseases that don't really effect the blood tests until death is very near. It also means that almost everybody that receives a transplant is near death and therefore recovery is much harder and longer and the cost is far greater. In my case I finally got a transplant 11 years after I was placed on the list. At that time I was just a few days away from death. I had not one ounce of muscle left I had been starving to death for months my kidneys almost stopped functioning. I had to spend 8 weeks in the hospital after transplant so weak that I couldn't even take a step for a couple of weeks. I had to have a feeding tube starting with a port line then a tube through the nose. My whole system shut down 4 weeks after transplant and I was given a 10% chance to live. I don't remember I was unconscious for 4-5 days. I then spent another 9 months trying to recover with many setbacks and restarts from square one. I'm still very weak and just in past month have started some normal activities. Had i received a transplant in a timely manner while I still had some strength and nutrients I'm sure the recovery would have been much easier and shorter. The cost far less and please realize my disease had no way to end but through death or transplant there was and is no cure. I happened to be very fortunate and lived 2.5 times as long as the norm. I don't mean to be negative but I believe the system as it now stands is really screwed up causes all kinds of unneeded suffering and additional expense. this is all just my opinion. By the way I did contact UNOS and ask questions and complain to some extent. I got political non answers and just a bunch of BS from them. I was laying in bed 24/7 so full of fluid I couldn't eat or breath and yet my blood tests didn't change for years.
I am extremely grateful to be alive and for surviving. It is a miracle of God and some incredible doctors and some incredibly generous individual and their family, but I don't have a lot of use for the system and am extremely upset that no one can explain it clearly and show that it makes sense.
God bless all of you and I hope everything works out and you get what you need. The system and the UNOS/government rules are unexplainable.

Gosh, I didn't know you could register at all. The team here in Shreveport has listed Chuck in Dallas and Little Rock. So 3 states all within 4 hr drive.

Reed, thank you for sharing the story and info with us. I am learning some of what you already know and you are right on about everything you said.

My sister, had she been treated properly and been sent to the specialists, etc. when she should have, would be in a recovery phase of an organ transplant right now.

Unfortunately, the system is so screwed up and it almost seems like its all set up to see how many they can let pass away instead of help and get people back to participating in society. That is all my sister ever wanted.....just to get back to her job.

So now, we are just adjusting to the fact that she is not going to be eligible to even get on a transplant list due to what appears to be several strokes. They will not consider her at all for transplant (from what we were told) but I want to get firm answers on several questions in the next few days.

Its a crying shame that they system is so messed up! I realized you don't take someone in for organ transplant that is still pretty healthy and has some function but my goodness, where do they draw the line in letting so many of you and your loved ones just waste away and all they will give you is the "political BS" as Reed mentioned.

I wish only the best for those of you fighting this disease and the process of getting through the system for transplant.

There is no way I can put into words just how taxing this whole thing has been for us. And for me, that is unusual as I don't often have that issue:)

Other than saying thank you again and letting all of you know just how much I have learned from you and appreciate so much all the kind words, advice and prayers, that God will bless each one of you and those that are caring for you as you continue to fight and (hopefully) move forward in the transplant process.

I will keep in touch as I am headed to Athens in a couple of days to get more solid info and see where we go from here with Barb and will let yall know as your friendship and encouragement is what has kept me going many days over the past few months.

Well....its me again. We got a call from the Dr that has been caring for Barb on a daily basis and he has been off for a few days during all the neuro stuff that was going on.

He said he has no reason for her stroke syptoms except that her ammonia is still quite high. He told us that there is no sign of any strokes on any of the scans done. Confusing to say the least! He said the radiologist was either looking at another persons films when he spoke with the Dr on call or somehow got mixed up because there are no strokes on the MRI's. Well, now I am more confused than before......but am glad that there was a mix up.

I am still attempting to process all this and feel like my brain is a little foggy now too.

Has anyone had neuro issues really bad when ammonia is up??