Its so confusing, my husband has never been sick a day and in March he went into a hepatic coma with a ammonia level of 290. Who knew what a ammonia level was. Not us. Well now he is totally disabled and waiting for a lover transplant. I wrote to the Senator of our state and the congressman for help. It is so hard to get a hospital to accept you as a recipient. I wrote to many organizations and we are still testing to see if he is a candidate. Why not he has all the blood work done and his MELD # is 21. But we are still testing and still not on the list. It takes a act of congress and alot of finances to get anyone to listen. He is 45 and not ready to give up. We are praying and I will not stop learning more and more about this disease. Hepatitis C is a very dormant disease you can have it for years and never know. All you out there scared or confused do your own research it helps. We are not giving up her in Florida.
Last edited by lori1216; 06-24-2008 at 06:13 PM.
Reason: liver transplant
My husband had a serious liver disease which destroyed his liver. In July 2000, he had a liver transplant. The new liver is still working wonderful. My prayers are with your husband and you. I know what you are going through.I hope you'll stay in touch.
My husband had something similar. He had a kidney stone and when they did the CT scan they discovered his liver was in serious trouble. After months of testing they finally decided he had an autoimmune disease that attacked his liver. At the time it sort of seemed to me that they just couldn't come up with a diagnosis and so said auto immune. His MELD is 20, but he's doing great right now. Do you have good insurance? Liver transplants are very expensive. DO you feel he is getting good care? If not try a different medical facility. You'll have to research online to find where they do liver transplants.
The very best of luck. The chances are pretty good, you know. At least he didn't cause his liver to fail. From what I have seen the medical profession don't look too kindly on those whose livers fail due to heavy drinking or drug misuse. Hep C does not fall into that category.
Hang in there. There should be light at the end of the tunnel. Mind him and mind yourself.
i know they have to do things in very srict ways just because of the huge supply and demand of any given organs,but i would think they could place him but just at alower status just so he could accrue time? my son had a liver Tx back in 2000,but he was not actually placed on that list til things really hit the fan. this was despite him actually presenting with this "suprise" liver failure thing being IN portal hypertension and vomiting up blood at the time,and also only down to having about 20% liver function left. once they were able to do the TIPS procedure,they said he could go for years before having to go that route,BUT unfortunetly only a few months later he developed a horrid case of pancreatitis and his condtion changed as well as his original Dx. he was not 'officially' placed on that list til things were really really going down hill just from oct 99 to may 19th when we had to rush him to the ER of the university hospital where he was going to hopefully obtain the eventual tx. once all that occured THEN the tx commitee felt he NEEDED placement. its all pretty screwed upthere ya know?
i don;t believe they used the same scoring methods back then that they do now,such as the meld score? in order for anyone to actually be placed on that list,the transplant committee at any given hospital has to arrive at certain conclusions about how really bad the patient is doing,and chances of survival with Tx vs stability in conditon and other things too numerous to even mention. you CAN try other hospitals who do tx too. possibly getting placed on their Tx list? it all goes into the general 'list' but being on any given hospitals list makes them just aware and looking for 'you' for that organ,you know what i mean? it all kind of comes down to what his docs really feel and the tx committees at the hospitals who meet weekly to decide those particular decisions. i know when my son was finally placed,we were told(and this just gave me the shivers) that 'depending upon the ins co decision,we will be placing him on the list" scared the crap outta me since i didn't know at that time just what in gods name was actually going to be covered by our ins co. thankfully it was not an issue when it was needed.
the thing here is,if your hubby is considered to be 'stabilized" it could take a bit longer to get him placed vs someone who is not actually stable? it just comes down to what the actual 'needs' are of the patient and if they even can wait,you know? any other medical complications would also factor in even if the scoring would dictate otherwise too. like i mentioned before,alot of different factors go into that placement decision,unfortunetly.
so,you were not even aware that your hubby was even sick til the ammonia level caused that coma to occur? has he reached portal hypertension yet or had the TIPS done to try and help that if he has? this is what made the difference with our son. when we were literally "whisked' out of the childrens hospital we were in in their ER that day after he vomited up blood at school(to the university of MN),they were actually talking an immediate tx. we went from,that morning to sending what i thought was a completely totally healthy child off to school in the morning to possibly looking at a liver Tx that night. what a freaky day,let me tell ya. it was an 'immediate' type of situation til they decided to actually try,for the very first time at any hospital other than one in califorina to attempt a pediatric TIPs on him. once that was accomplished and he was doing much better,any mention of the list or even the transplant was kind of placed on the back burner type thing? the placement,like i said,did not actually take place til his condition just really started to totally deteriorate and he was actually dying a bit each day. THEN things got really ugly.
what exactly IS your hubbys overall medical status right now? have they had any good success at getting that ammonia down to a much safer type level?what is it at right now? the overall 'stability" of his condition will ultimately play the biggest factor in any list placement. sorry for you having to deal with all this. but you sound like you are doing everything you can here and THAT is something. if they realistically have not yet even finished doing the huge workup and testing that needs to be done,that too could be holding things up with any placement at this earlier stage too ya know? they just wont know his total full status medically at this stage yet. if the patient is considered to be "stable' overall,they need to wait til ALL the results come in so it can even be brought up with the transplant committee and even discussed as well. they just really need ALL the hard facts and results before that placement can even be considered,thats all. as long as he is stable and they can treat the ongoing symptoms with good results,that placement may just be a bit further off too. i do know originally,like i mentioned at the beginning here,when we first started with this whole nightmare,his GI doc did mention getting him placed just to accrue time on that list,then for some reason(but he also was much much more stable after the TIPS was done),it never got really brought up again til much later when things were just horrid for him. i am wondering if they even go that route anymore when considering just how many people really need the organs,ya know? believe me, i do know what you are going thru here and you DO have my total and complete empathy there. hopefully his condition will not deteriorate rapidly and he still can have some good quality of life once they can get everything more stable and settled down for him. like you mentioned in your post,when dealing with hep C,alot of things can change with this condition,it is not something that just follows a very direct course like other conditions,so that may also be playing a part in the wait for the placement.
i really do hope he stabilizes and wont need any transplant for quite some time yet. under the right conditions when living with hep C,it can actually be a pretty long time before he would even realistically actually NEED that tx. it comes down to alot of underlying factors and complications and his true 'need' at that point. i amjust hoping for the best for the both of you. good luck and please keep us posted. FB