Might be time to be more concerned about you brother and finding a doctor who knows something........... Good luck
Any suggestions on how to find such a doctor when he has no insurance and they really don't seem to care.
It begins with a referral from a Dr. at a County hospital where uninsured low income people go. If he is cirrhotic, he will get a referral to a liver specialist or gastroenterologist. It takes time and there is paperwork, but hopefully you can help him with that.
There are non-interferon treatment drugs in the works. The drugs you refer to are not the only possibilities for a cure.
Good luck to your brother.
On top of what Rivll suggests get in contact with a teaching hospital in your area that run trials, there are people here that are being cured... Where theres a will theres a way........... Wishing him the best.
Once you do I think you will find out that someone who was able to do 48 weeks and just finished with these current meds are not so far along that they only have 6 months to live...... I find that outrageous coming from a doctor.........
"the doctors say there is nothing that can be done and he will probably only live 6 more months"
Is your brother on a transplant list, what is his MELD score, wishing your brother all the best
My brother is not on a transplant list. The doctor that I did speak with (who works the nursing home) told me that he wasn't a candidate because he was not consistent in taking his medicine. ..which I do not believe is true. She said they wouldn't waste a liver on someone who didn't show they would be willing to take their meds after the transplant.
He was taking his meds prior to this last setback. He went through almost a year of the shots and seemed to be doing OK until they stopped the Hep-C treatment. His blood test had showed he was clear.
Only a few weeks after the treatment was halted, he was having trouble speaking and walking. He was having leg spasms. Turned out his ammonia levels were up so high it was messing with his head and causing muscle spasms. So of course if your not in your right mind you wont take your medications as required. My family had to take him to the ER.
They did a blood test said the virus had come back with a vengeance.
Now he sits in the nursing home with his hands and legs swelling. They are providing the medicine that helps to clear the ammonia from his system, but poor thing has to go to the bathroom 4 or more times a day with the nursing staff helping him..and he is so embarassed. He cant walk without assistance he moves very slowly and he seems to have trouble thinking clearly.
I don't have details of his blood counts so I cant answer you on his MELD score. My family is supposed to meet with a social worker tomorrow and meet with his doctors next week. I don't know if he is cirrhotic, but from what Im reading it sounds like he is.
can-do-man..I will try to look for a good teaching hospital..but not really sure what will be in WV.
Rivil, do you have any links you could share to the non-interferon treatment drugs that are in the works?
Anyway..I do thank you all for your well wishes. I also wish the best for everyone here who has this disease and those you love.
Here is one link. You can do a search on it for your region.
I recommend you find another Dr., preferably a Hepatologist. What that Dr. said to you was out of line and anyway it is not her decision, it is the transplant team's decision.
The link below serves people from W. Virginia. See if you can get an appointment with them.
Good luck to you.
"Jefferson has the lowest mortality rate among patients on the Region 2 (Pennsylvania, New Jersey, Delaware, Maryland, Virginia, West Virginia and the District of Columbia) liver recipient waiting list, and our patient and graft survival rates (91% and 87% respectively) surpass Scientific Registry of Transplant Recipients (SRTR) benchmarks as well as Organ Procurement Transplant Network (OPTN) regional and national levels. These impressive results allow us to accept patients with higher morbidities than those accepted by other centers in the region.
To date, more than 670 patients have received transplants here at Jefferson and the United Network for Organ Sharing (UNOS), which administers the nation's policies on organ transplantation and procurement, designated Jefferson as a liver transplant program for both live and deceased donor livers. We are also one of only three adult-to-adult living donor liver transplant centers in the region."
Sorry Zooey, I posted before I was finished.
It looks like an excellent transplant center and if they take him in they will handle his treatment options. Call them asap.
Hang in there.
I wish you and your brother all the best.
Yes, it sounds like your brother has Cirrhosis (advanced scarring) and ESLD (end stage liver disease). He has as cites (swelling) and he has Hepatic Encephalopathy (HE) or cognitive problems due to high ammonia levels. He needs to be seen by a hepatologist, the only type of doctor who can help him. His symptoms can be managed for awhile, but he needs to be assessed for a liver transplant, as he could develop life threatening symptoms at any time.
Im am treating at Jefferson and i can not say enough about the great treatment and treating doctors there i go to Jefferson in Philadelphia PA but my thought is they are all connected good luck to you and your brother