New Member, JessesWife:
My husband and I have been married for not quite 4 years, he used to see the doctors in FL at the VA, they done some routine labs and such, and then sent him a letter via the US mail, that he was positive for HEPC, They done a liver biopsy and told him, it'd be 10 years or better before he would start having any problems, well, they were sadly wrong. In 2008 we were in FL on a weekend getaway, when he became dramatically ill, but refused to go to the ER, I told him if he weren't better by morning that he would be going like it or not. By daylight, I had to call the paramedics to come and pick him up, he had blood running out both ends. He was taken to Jacksonville, where he spent nearly a month. The team of drs there all informed me that he was in critical condition. They had to go in and band esophageal varices and then drain off some of the acites. This is a good man, who has not drank or used drugs for over 25 years. The blood specialists down there believe he got the hep C from 13 pints of blood that was transfused in 85 before they screened for such things. He's had a rough life, got hit by a semi in 85 that caused the loss of his R. leg above the knee and the loss of use of his R. arm. Since he got out of the hospital in Jacksonville, and we returned back home to GA, I found him another GI doctor, I didn't trust the doctors at the VA no longer. He's gone through EDGs with argon to seal bleeding/or seeping varices in his stomach. The doctor has told him on several times, if his liver was better they would just remove his stomach and build a new one. But All surgeries for him are off. He has a continual problem keeping and maintaining a steady level of blood level and has required many blood transfusions, he's up to nearly 300 pints now. He's on oxygen almost daily because the acites will compress his organs against his lungs and make it impossible to breathe. He goes through stages of encephalopathy several times. He spends more time in the hospital than at home. A couple of weeks ago, his dr come in and told him, basically with the exception of continuing the transfusions, they've done all they can do, and that he was terminally ill and if he decided that the quality of life he had right now, wasn't worth it, then he could just start refusing the transfusions and he would eventually bleed out and die. I was hysterical, I've known for a long time that he was terminal, but for the doctor to have come right out and tell him, and then I have to deal with him and all the depression that happens, was rough. Currently he's back in the hospital again, because after the doctor run some tests, to see if he could find out what set off this bout of encephalopathy, only to discover it was an infection in the blood, they blamed it on the PICC line, but they've removed it and put another one in, and still he's being treated for a blood infection. The doctor said even if he chose to continue transfusions, that would only be good until his body built up too many antibodies and started rejecting the blood.It breaks my heart, I feel for everyone who is going through this same kind of problem. Like with my husband and myself, we depend on each other, he's got family down here, but they're not much help, it's like they're afraid they'll catch it too. Take care to everyone
Post Edited (hep93) : 5/11/2010 1:24:02 PM (GMT-6)
Jesse'sWife, welcome to the forum. I live in Jax Beach and was going to Shands for a number of years...which, I assume, is where Jesse was. They diagnosed me with liver cancer, but said there was nothing they could do. Additionally, it took so long to get an appt. with an oncologist that I took matters into my own hands and went to Mayo. Mayo literally saved my life. I'm assuming that Jesse has Champus or some type of insurance through the VA. If he has military insurance or Medicare without a supplement, I think you should ask for an appt. at Mayo Jacksonville to get an expert opinion. There are not many insurances that they will take, but I do believe they take military. They do not take HMOs. If he is up to the trip, I'd suggest calling their appt. line (they have an online site) and request an appt. with a hepatologist. It may be that his liver disease has progressed to a point where nothing can be done, but they will be honest with you, and if there is anything at all that can be done to save his life, they will do it. Of course, they would first have to evaluate him.
My heart goes out to you both.