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Old 12-15-2008, 06:37 PM   #1
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When do you qualify for a liver

I have advanced cirrhosis, my question which I can't get answered is when do you get on the list. My doctor says you have to wait until the liver fails.

I asked about a resection from a donor and he says no to that too. I am confused as to what I do qualify for soon.

I can't work, I sleep most of the day, my ammonia levels are at 147 with medication. I have stomach pain a lot. My memory is awful. I feel just awful and would like my life back some how.

I have autoimmune hepatitis and fatty liver. Now I read that women are on the short list to receive livers. Men seem to match more for the larger livers available. Women and children seem to compete due to size which is just awful.

I wish someone could explain to me who qualifies for a resection from a matching liver and why everyone doesn't. There doesn't seem to be a place to find information or I am looking in the wrong place. Anyone who knows please share with me. Thanks
GCB

 
Old 12-16-2008, 08:12 AM   #2
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Re: When do you qualify for a liver

have you checked out the UNOS site at all? UNOS is the governing body over all transplants that take place within the US. there are many possible resons why a person may or may not be able to utilize the live donor option. alot depends upon what is causing your failure and what YOU actually 'need"to have replaced. my youngest son was all set to recieve part of my hubbys liver way back in 2000,we had a date set and he(my hubby) had undergone all the testing and everything was a go for june 26. well, unfortunetly,my son was re dxed with something even worse than we first were told he had which would require a new cadaver liver since they needed the 'whole' liver,including the billiary tree. when they do the donated lobe,it is normally attached to that tree among other things,so if that has to go,well that kind of takes that option off the table. their could be something else that is not quite right(even you own anatomy) that could also exclude this option for you too. your doc should be able to answer all these questions for you,or the transplant coordinator who is supposed to be assigned to you by this time.

getting o nthe list is kind of involved. despite our son only having about 20% of his liver function left when we even found out(at age 12) that he actually was even sick,and with a horrid liver disease we never knew about,to boot, he stil was not actually placed on that list til several months later when other things started to fail. it kind of goes by your overall condition and how long the transplant committee feels you have before you would actually need the organ. its more involved than that and takes into acct your labs and other needs you may have to have too,but it comes down to who needs it the most at any given time. and then it goes by status.

you should be able to speak to someone at the hospital where you are seeing the doc you are seeing or where you would be going for a possible tx when that time actually comes. normally,they will set you up with that transplant coordinator to help guide you thru all this and also answer your questions too. but do go to the UNOS(united network for organ sharing) website. unfortunetly i dont have that URL,but you should be able to track it down pretty easily. it explains the whole process pretty clearly. unfortunetly becasue the need far outwieghs the supply,the criteria to be placed on that list and your status has to be very strict or the wrong people would be getting organs much more direly needed by someone else who only has hours to live,not days or months or years,you know what i mean? our son was down to only days and listed in grave condition when he got his miracle. unfortuently that is the way it is. i do hope this helped some. if you have any other questions,please don;t hesitate to ask,i will answer what i can for you. good luck to you with this, Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 12-16-2008, 07:45 PM   #3
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Re: When do you qualify for a liver

Marcia, it sounds as though you and your son has been through quite a lot but everything is going well now. I am happy for you. Thank you so much for sharing your story and the information. I now understand why my doctor said I would not go on the list until my liver fails. Its very confusing when you are in this position but until they can say exactly what is going on with me I will be in limbo. Plus this has all been a surprise.

Now I have an excellent doctor and hopefully we will find exactly what my options will be. Tomorrow my new doctor has ordered an abdominal ct and we will see if maybe I might have similar problems as your son did. It might explain my pain. thanks for the website. I will go there and find what I can.....you have been so helpful. Take care and enjoy the holidays with your son.
Gcb in pgh

 
Old 12-17-2008, 08:34 AM   #4
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Re: When do you qualify for a liver

no problem Gcb. please keep me posted on how things are going with you. i have just been truely amazed at how well our son has done since that Tx was done. he turned out to be as big as his dad(didn't know just what effect all those meds would have on him) and the liver itself has been just an absolute wonder so far and we are comming up on the nine year mark on june 7. amazing difference in lifestyle too compared to pre transplant. it just was not what i had expected ya kniow? i assumed we were in for the same type of crap we had to go thru before tx with all the ER visits and everything else that always 'needed' to be done,but if he didn;t have to take meds every day and get his labs checked every other month(it started out twice a week post op after discharge) you would never ever know this kid almost died from liver failure at age 13. he was dxed in oct 99 and had that Tx in 2000,one month after his 13th BD.

just learn as much as you can about the whole process and also what exactly you are dealing with,and get all records of any testing too.this does help,espescially if you have to make a visit to an ER(been there done that one to death). having all that important info in one expanding type of folder just really does help tons when you have to go that route,trust me. it gives the docs a good baseline to start from and see the progression of your labs and functions too. i kept that folder handy at all times as it contained everything all docs needed to see,ya know? just a really good suggestion for you. just get copies of everything,including getting all doc notes from any docs you have seen. this info is important too. you do have the right to obtain all of your own medical records from any doc you see or hospital you have to go to too. this is just 'your' medical history all in one place and accessable when needed. this folder also went to every single doc appt we had too. unfortuenately,becasue of my own major medical issues goingon since 03,i have had to do this with my crap too. it does make alot of things much easier just having everythig all in one place. it just helps. good luck,and please keep me posted on how things are going. Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-18-2008, 08:21 PM   #5
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Re: When do you qualify for a liver

Thank you for the advice. I will follow it completely. It is wonderful that your son is doing so well. Really good to hear. I am sorry to hear you are having health problems. It sounds as though you have had enough and very kind of you to share with us on the board.

I don't see my doctor till January so I get to wait for my test from this week. He seems to be following the basics with the abdominal ct and blood work. I just have to learn about what it all means.

I went from having asthma and bronchitis constantly to not being able to wake up. After insisting on my pc last year doing more tests they found I had sjogren's (autoimmune) which then led to finally noticing my liver enzymes were high and had been high for years but not enough for anyone to say anything or notice.

The auto immune doc got all my past blood work, sent me to a liver specialist, they did a biopsy and told me it was cirrhosis. Autoimmune hepatitis and maybe fatty liver disease combined but I don't fit the profile for fatty liver. Now its advanced. I am 57 and I was always very active. I am not ready to not be active but I don't seem to have a choice.

I really am happy for you that your son is doing well, it had to be such an awful experience as a parent. Have a very Happy Holiday and enjoy your family. May you have a very Happy and Healthy New Year.
Gcb in Pgh

 
Old 12-19-2008, 08:17 AM   #6
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Re: When do you qualify for a liver

thanks G, and right back at cha. please keep me posted. good luck,Marcia

 
Old 09-28-2009, 12:46 AM   #7
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Re: When do you qualify for a liver

Quote:
Originally Posted by gcbpgh View Post
I have advanced cirrhosis, my question which I can't get answered is when do you get on the list. My doctor says you have to wait until the liver fails.

I asked about a resection from a donor and he says no to that too. I am confused as to what I do qualify for soon.

I can't work, I sleep most of the day, my ammonia levels are at 147 with medication. I have stomach pain a lot. My memory is awful. I feel just awful and would like my life back some how.

I have autoimmune hepatitis and fatty liver. Now I read that women are on the short list to receive livers. Men seem to match more for the larger livers available. Women and children seem to compete due to size which is just awful.

I wish someone could explain to me who qualifies for a resection from a matching liver and why everyone doesn't. There doesn't seem to be a place to find information or I am looking in the wrong place. Anyone who knows please share with me. Thanks
GCB

 
Old 09-28-2009, 12:56 AM   #8
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Re: When do you qualify for a liver

I am not an expert but I am a liver transplant recipient.The first thing I can tell you is that you need to go visit a liver transplant facility.They use a scoring system called a meld score.Basically it is liver function tests.The higher your score the higher you get on the the transplant list.If you are a drinker you will need to go through a program first.
I went through alot of the same things you describe and went to Seattle UW Medical Center 1 !/2 years ago and I am doing great good luck!

 
Old 09-28-2009, 09:36 AM   #9
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Re: When do you qualify for a liver

glad to hear that bragle. they did not astart using that meld score thing til i think around 2002? it does sound like a much more accurate way of seeing the bigger picture/need tho. i hope things continue to go well for you too. what happened with my son WAS an absolute miracle. and 'just' in time. i really hope things are going okay with GCB tho, haven't heard anything there for quite a while as you can see? take care bragle, Marcia

 
Old 11-15-2009, 06:03 PM   #10
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Re: When do you qualify for a liver

Quote:
Originally Posted by gcbpgh View Post
I have advanced cirrhosis, my question which I can't get answered is when do you get on the list. My doctor says you have to wait until the liver fails.

I asked about a resection from a donor and he says no to that too. I am confused as to what I do qualify for soon.

I can't work, I sleep most of the day, my ammonia levels are at 147 with medication. I have stomach pain a lot. My memory is awful. I feel just awful and would like my life back some how.

I have autoimmune hepatitis and fatty liver. Now I read that women are on the short list to receive livers. Men seem to match more for the larger livers available. Women and children seem to compete due to size which is just awful.

I wish someone could explain to me who qualifies for a resection from a matching liver and why everyone doesn't. There doesn't seem to be a place to find information or I am looking in the wrong place. Anyone who knows please share with me. Thanks
GCB
Hello I am not an expert but I am a transplant recipient.I know there are several things that influence transplants.Age,whether you drink or do drugs any other health issues.I went in to the transplant center and they did liver tests to determine my meld score which is a combination of several blood tests.Basically the meld determines how bad your liver is.the higher your score the worse off your liver functins are.

 
Old 04-19-2010, 03:10 PM   #11
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Re: When do you qualify for a liver

i am also confused about the same thing and dont know where to go to get answers. the thought of waiting untill the liver fails seems insane to me. i am also wondering about grafts and why that isnt done .

 
Old 04-21-2010, 08:48 AM   #12
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Re: When do you qualify for a liver

sorry you are also in this situation. just exactly what do you mean by 'grafts"? just a wee bit confused. grafting what to where? are you currently seeing a good liver doc? thats the first thing, then depending upon your overall condtion, that would determine when you get placed on the list and your actual status too? unfortunetly it IS only that the serious demand for any organs far outweigh the overall supply that has to dictate who can obtain an organ and when. it would seem a little crazy to get an organ when you are not down to a low function vs someone who has only days to live? its just the way things are. there are people like our son who we did not have a clue was sick til he was well into the portal hypertension stage and down to having only 20% function left, but they were able to give him the TIPS procedure which helped get rid of that more immediate life threat, so what we thought was going to be more immediate, went to what we were told at that time could be years til Tx was needed. but then he became seriously ill and ended up with a worse Dx which DID move up that need a ton to actually only months. then you have people who suffer whats called acute liver failure from toxic exposures that can just happen to the liver who if not transplanted almost immediately, will simply die. those will ALWAYS get moved to status 1a pretty much. these are people who were just fine til that one toxin was exposed to that pretty much wipes out that liver completely,so these are the little unexpected types of things that can also impact anyones overall status even when ON that list too? while i know it sounds at times illogical to just wait to get to that bad point, or even unfair to even do things the way they do, they have to just to save the ones who would litterally die within days if not actually transplanted first, if they actually can even "find" that match, ya know? believe me, i WILL myself be facing the need for a kidney and possibly a liver too depending upon how MY wonder disease progresses here too so i do know how you feel.

just exactly what IS your current health status at? what is the liver problem caused by? how are your labs? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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