Aa
what next?
My 50 yr old husand has hep-c. Diagnoses 14 yrs ago. Been getting worse lately. Edema for quite some time. Now ascities also- recently had paracentesis- but looks like is filling up again. Encephalopy at times, but his personality has definately changed. Very apathetic. Sleeps most of the day- hardly any energy. Varicies yes (no bleeding) . Very low platelets. Constant gall bladder attacks and at times pancreatitis. Horrible cramping and lots of other stuff. Doctor is advising transplant.. but when? How bad does it have to get? What to exepct next?
Mike's comments are right-on. The prediction of "how bad" does it have to be before he gets a transplant is a tricky one. It depends on a lot of things, region, blood type, MELD, etc. Your MD should be able to explain this to you.
UNOS/OPTN is chartered with allocating donor organs to recipients in a way that gets the donor organ to the "most needy" individual, as you probably know. Here is a link to UNOS policy on allocation of donor livers that might help you understand.
http://www.optn.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf
If you navigate on the site to the section entitled "Data", you can create custom reports on transplant statistics such as state, blood type and including MELD scores of recipients at time ot transplant. The aforementioned policy will help you understand the meaning of these data.
http://www.unos.org/data/
It has been about 16 months since my transplant, and things have surely changed. I am sure the need for donor organs has only increased. But, without knowing any particulars about you or your region, etc. it looks like not many transplants are occuring at MELD scores below 20. The bulk of the transplants are at MELDs of 25+ or Status 1.
I know the whole process seems overwhelming. I wish you and your husband strength and luck.
UNOS/OPTN is chartered with allocating donor organs to recipients in a way that gets the donor organ to the "most needy" individual, as you probably know. Here is a link to UNOS policy on allocation of donor livers that might help you understand.
http://www.optn.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf
If you navigate on the site to the section entitled "Data", you can create custom reports on transplant statistics such as state, blood type and including MELD scores of recipients at time ot transplant. The aforementioned policy will help you understand the meaning of these data.
http://www.unos.org/data/
It has been about 16 months since my transplant, and things have surely changed. I am sure the need for donor organs has only increased. But, without knowing any particulars about you or your region, etc. it looks like not many transplants are occuring at MELD scores below 20. The bulk of the transplants are at MELDs of 25+ or Status 1.
I know the whole process seems overwhelming. I wish you and your husband strength and luck.
Yes, he is currently listed for transplant. His meld scores have gone anywhere from 14-20. He hovers around 17- so the meld score is not that high- but our doctors are concerned that he is worse shape than what the meld score shows.
Livers for transplant candidates are allocated on the basis of the MELD score which is number arrived at by a formula which takes into consideration 3 factors:
1) Bilirubin
2) Creatinine
3) INR or International Normalized Ratio - basically the ratio of a patient's prothrombin time to a normal prothrombin time - clotting time.
A patient must be referred to a liver transplant center for evaluation and, if the patient qualifies, then he/she is listed for transplantation.
Generally, the higher the MELD score the higher the position on the list of candidates waiting to receive an organ but, body size and blood type must be compatible also. So sometimes a person with a lower MELD score will get a liver before one with a higher MELD score if body size and blood type dictate.
Without knowing much about your Husband's condition I would think that the next step would be for his doctor to refer him to a transplant center for evaluation. That would be my recommendation because I think it is wise to be evaluated sooner rather than later, even if he does not presently qualify for listing. For one thing, he gets into the system and is seen by people who are highly skilled and very experienced treating people with end stage liver disease. Another benefit is that you and he also become familiarized with the facility and some of the personnel and I think that is a big advantage if, and when, the time comes for transplantation.
As far as your Husband's condition and what he can expect in the way of symptoms, I cannot predict what may occur next. Different people manifest different symptoms at different times but I will say that it can be difficult and I think a transplant center would be able to give you a better idea of what to expect and the measures that would help him with his discomfort.
I think you should speak with his doctor and ask him what he thinks the next step should be and if he thinks your husband should be evaluated by a transplant center.
Good luck, Mike
1) Bilirubin
2) Creatinine
3) INR or International Normalized Ratio - basically the ratio of a patient's prothrombin time to a normal prothrombin time - clotting time.
A patient must be referred to a liver transplant center for evaluation and, if the patient qualifies, then he/she is listed for transplantation.
Generally, the higher the MELD score the higher the position on the list of candidates waiting to receive an organ but, body size and blood type must be compatible also. So sometimes a person with a lower MELD score will get a liver before one with a higher MELD score if body size and blood type dictate.
Without knowing much about your Husband's condition I would think that the next step would be for his doctor to refer him to a transplant center for evaluation. That would be my recommendation because I think it is wise to be evaluated sooner rather than later, even if he does not presently qualify for listing. For one thing, he gets into the system and is seen by people who are highly skilled and very experienced treating people with end stage liver disease. Another benefit is that you and he also become familiarized with the facility and some of the personnel and I think that is a big advantage if, and when, the time comes for transplantation.
As far as your Husband's condition and what he can expect in the way of symptoms, I cannot predict what may occur next. Different people manifest different symptoms at different times but I will say that it can be difficult and I think a transplant center would be able to give you a better idea of what to expect and the measures that would help him with his discomfort.
I think you should speak with his doctor and ask him what he thinks the next step should be and if he thinks your husband should be evaluated by a transplant center.
Good luck, Mike
thanks for getting back to me- I really appreciate iti.. and hopefully I'll hear from others too!
thepreacher
thepreacher
Well honestly it sounds pretty bad to me, he seems to be in a lot of discomfort and pain with all of this.
We have a few members who have been transplanted sucessfully and are living full productive lives on this forum.
Hopefully one of them will come in and let you know the answer to your questions. I have not been transplanted so I'm not much good in the help department on this one - but I wanted to make sure you knew that someone read your post and that we are here to help you and your husband as much as we possibly can.
We have a few members who have been transplanted sucessfully and are living full productive lives on this forum.
Hopefully one of them will come in and let you know the answer to your questions. I have not been transplanted so I'm not much good in the help department on this one - but I wanted to make sure you knew that someone read your post and that we are here to help you and your husband as much as we possibly can.
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