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Old 07-16-2005, 01:46 PM   #1
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Exclamation End stage liver disease need information

My husband went to the hospitol by ambulance last year July 2004 because he was vomiting blood and he stayed there for one week. They told me he had end stage liver disease they did the banding and he was in ICU due to a semi coma for four days. It has now been a year he no longer works and is on disablility he takes very good care of himself and has not had a drink in over a year he is on a low dose of methadone and he is taking all the medications like Lactalose Zoloft Lasix and Sprilactone I think that is how you spell it. My question is latley he has had a strange body oder the whole rooms smells kind of like strong urine and he is sleeping more he has lost so much weight since he has had this disease he has a hard time swallowing food or water at times Is that what happens with this disease Im just so scared all the time. Three of his friends have died this year of the same thing that I dont know what to do at times. He is eating well but is there anything I should look out for should I be concerned? He goes to the doctor on Tuesday but doesent tell me much since he is a regular doctor.

 
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Old 07-26-2005, 02:25 PM   #2
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Re: End stage liver disease need information

has he had an ammonia test? has he been evaluated for transplant anywhere?

what liver disease did he have?

 
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Old 07-26-2005, 06:27 PM   #3
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Re: End stage liver disease need information

Quote:
Originally Posted by Chochies
Thank You very much for the information it is a great website. My husband has hep 4 cirrhosis stage c and he cannot get a transplant due to his stage of hepatitis but he is maintaining his weight and eating mostly veggies and lean meat mosr chicken than red meat. thanks again
I know Thanbey already said this, but your husband's hep c/stage four cirrhosis is exactly why he SHOULD be considered a candidate for transplant, or at least evaluated for it.

I am very worried about the medical advice you are getting. Please take up T's suggestion of contacting a transplant center. This is very important--maybe the difference between life and not much life.

Please come back and let us know what more you learn.

Thanks.

sean

 
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Old 07-29-2005, 10:35 AM   #4
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Re: End stage liver disease need information

Thanks for all the replys. The hepatolagest the hospitol told us he would not make it through a liver transplant because of deterioration of the liver he also has diabeties and the hep doctor said that would infect the new liver. His doctor also told us he would not be eligible for a liver transplant but I am going to look into it. My husband has not had any alcohol in over a year and he was a heroin addict but stoped using three years ago. He is on a low dose of methadone 20 gms a day so I dont know if that is what prevents him from the transpland. The doctor said his liver is very bad. He has been taking very good care of himself. Once again thanks and I will let you know what happens.

Last edited by Chochies; 07-29-2005 at 10:53 AM. Reason: forgot to mention

 
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Old 07-29-2005, 07:41 PM   #5
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Re: End stage liver disease need information

Quote:
Originally Posted by Chochies
Thanks for all the replys. The hepatolagest the hospitol told us he would not make it through a liver transplant because of deterioration of the liver he also has diabeties and the hep doctor said that would infect the new liver. His doctor also told us he would not be eligible for a liver transplant but I am going to look into it. My husband has not had any alcohol in over a year and he was a heroin addict but stoped using three years ago. He is on a low dose of methadone 20 gms a day so I dont know if that is what prevents him from the transpland. The doctor said his liver is very bad. He has been taking very good care of himself. Once again thanks and I will let you know what happens.
Diabetes is not infectious. It is, or can be, a very serious medical problem, especially if not controlled by diet and avoiding sugar, alcohol, and so on. But it is NOT a liver disease. I think there is some miscommunication going on.

The hep probably WILL reinfect the new liver. this is common and is part of what transplant centers deal with.

The severe deterioration of your husband's liver, to say it again, is WHY he should be evaluated for transplant. They do not do these things unless the person is likely to die otherwise. In other words, serious liver disease cases get higher priority for transplant--unless the patient is so sick that he or she is unlikely to survive the operation, of course. This is for the transplant center to determine--it is a key part of their evaluation of the case. It's not up to your local doc, or the hepatologist, either. The transplanters will also want reassurances that he is not currrently abusing drugs or using alcohol at all. I don't know what they will think of the methadone. You should go find out, asap.

I am uncertain what is being missed in the communication, but it seems a serious gap or series of gaps. Try doing your own research tryhcop.org, other sites. Start slow, question, question, question, but don't stop until things make real sense to you.

Sean

 
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Old 08-01-2005, 12:54 PM   #6
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Question Re: End stage liver disease need information

My husband went to the doctor on Friday and I asked the doctorif he could refer my husband to a transplant center and the doctor said my husbands cirrhosis is to advanced that he would not be eligable for a transplant. So what do I do? I live in San Diego County in California, so do I just go to UCSD Medical center? We have Medical insurance through Social Security. I took my husband in to the hospitol on Saturday for a nose bleed and diareha and he had a bad ordar coming from his body. They sent him home and told us to just keep an eye on him and if he got a fever or any more nose bleeds to take him back. They told us his ammonia level was high that is why he had a bad oder. Thanks again. P.S. Can anyone tell me why my husband has a hard time swallowing for or water? His doctor did not say anything about it, prabably because I had so many questions to ask. And how often should he do lab tests on him he hasent done any labs in two months because he says he look fine

Last edited by Chochies; 08-01-2005 at 01:06 PM. Reason: forgot to ask again

 
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Old 08-01-2005, 01:04 PM   #7
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Re: End stage liver disease need information

Quote:
Originally Posted by Chochies
My husband went to the doctor on friday and I asked him if he could refer him to the transplant center and the doctor said my husbands liver is so advanced that he would not be eligable for a transpland. So what do I do? I live in San Diego county in California, so do I just go to UCSD Medical center? I took my husband in to the hospitol on Saturday for a nose bleed and diareha and he had a bad ordar coming from his body. They sent him home and told us to just keep an eye on him and if he got a fever or any more nose bleeds to take him back. They told us his amonia level was high that is why he had a bad oder. Thanks again. P.S. Can anyone tell me why my husband has a hard time swallowing for or water? His doctor did not say anything about it, prabably because I had so many questions to ask. And how often should he do lab tests on him he hasent done any labs in two months because he says he look fine.

Call the transplant center or show up at the ER at UCSD. You cannot, by law, be turned away for the emergency room at UCSD. It doesn't guarantee a transplant, but it guarantees you will see someone who knows whether he is eligable for a transplant or not. You may have to fight for your husband to get to a hepatologist, but you sound to me like you are up for that if it comes to it.

Thanks for keeping in touch. Now, get in the car and GO.

thanbey

 
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Old 08-01-2005, 01:11 PM   #8
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Re: End stage liver disease need information

I did speek to the hepotolagest in the hospitol on Saturday and he told me again that my husbands condition is week and he would not be eligible because he would not make it. My husband is also animic not sure if my spelling is right but I have asked so many questions.

 
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Old 08-01-2005, 01:44 PM   #9
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Re: End stage liver disease need information

Quote:
Originally Posted by Chochies
I did speek to the hepotolagest in the hospitol on Saturday and he told me again that my husbands condition is week and he would not be eligible because he would not make it. My husband is also animic not sure if my spelling is right but I have asked so many questions.

If your husband has been seen by a board certified HEPATOLOGIST at UCSD, and he has said that your husband is too sick for a transplant, then I have to concede that you have done everything you can.

If you need the services of a hospice, then you may find them to be very helpful to you and your husband.

What I am having difficulty understanding is why your husband has been sent home under the circumstances you describe particulalry if he is not a candidate for a transplant.

I hope by this time you are in touch with IMKINDLY. She is far more knowledgeable about this situation and what the possibilities for you are than I am. I strongly encourage you to contact her through the resources on the website (web log) under "end stage liver disease resource"

thanbey

Last edited by thanbey; 08-01-2005 at 01:46 PM.

 
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Old 03-16-2006, 10:27 PM   #10
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Re: End stage liver disease need information

Its been a long time since I posted. After reading all your replys I finaly listen and went to the message board with Imkindly and persuaded the doctor to refer my husband to a hepatologist and after all the tests my husband will be refered to a transplant center at UCSD. The doctor found a dark spot on my husbands liver when they did a CT scar and they think it might be cancer. They are going to check with other specialist to see if it is and what they are going to do. Thanks for listening.

 
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Old 03-24-2006, 12:34 PM   #11
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Re: End stage liver disease need information

Quote:
Originally Posted by Chochies
Its been a long time since I posted. After reading all your replys I finaly listen and went to the message board with Imkindly and persuaded the doctor to refer my husband to a hepatologist and after all the tests my husband will be refered to a transplant center at UCSD. The doctor found a dark spot on my husbands liver when they did a CT scar and they think it might be cancer. They are going to check with other specialist to see if it is and what they are going to do. Thanks for listening.

I cannot begin to describe to you how gratifyiug it is to know that you followed through and it has made a difference. Thank you so very much for returning to post.

Radiofrequency ablation is done in radiology and it is the best single way to eliminate lesions on the liver when they present as a complication. It is recent technology but not experimental any more.

Be sure to bring this up with the specialist and insist on a consult about it specifically.

And, please come back and let us know how you are doing.

thanbey

 
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