My husband acquired his disease from a tattoo prior to the CDC's full knowledge of the nature of HCV. He is compliant - no drinking for years, no smoking, follows his diets, etc, etc. Since his diagnosis in 2003, he has undergone 3 separate treatment protocols for HCV beginning with a 48 week course of non-pegylated interferon in 2003, followed by a 22 week course of pegylated interferon in 2005, and most recently, 12 weeks of Incivek - which was the final assault on his system and threw him into full blown liver failure.
The last year of his life has been hell, with 9 hospitalizations, TIPS on 11/15, and doctors whom I have no faith in. His most recent hospitalization was to confirm what I already knew - compression fractures of the vertebrae, as part of the sequellae of his disease and prolonged use of interferon over the years. He is fractured from T8 - L4, after having L5 repaired by kyphoplasty on 3/11/13. As feared, it set off a chain reaction of subsequent fractures. In addition to the fractures, the 7 remaining teeth he had on the upper gum were broken off at the gumline during the TIPS and kypho when he was intubated, and have resulted in requiring dentures after he has had nearly $25,000 dental work in the past 7 years. No one, not even I, thought the decalcification would be so severe, and not one of the many specialists have checked his Vitamin D. levels until all these issues started occurring. In retrospect, I can't believe no one did - after all, HCV is a metabolic disorder leading to malnutrition. Why wouldn't his Vitamin levels be affected?
The TIPS worked fine until he had the first fracture back in December, but concurrent with the first fracture, he began to develop severe anasarca that is not well managed by diuretics, including Samsca (Tolvaptan) 30 mg daily (to the tune of $600.00 a DAY), plus Bumex (2 - 6 mg daily) and Aldactone 200 mg daily. I'm worried if we get to transplant he'll need a kidney too, but...wait, here's the kicker - he has persistent dilutional hyponatremia, which skews his post transplant mortality rates unfavorably. (How do I know all this? As I said, I'm a nurse for 30 years. What was I doing when I met my husband 9 years ago? I was working as a hepato/biliary/renal transplant nurse for NYC Regional Donor Net, while Dr. Oz was the head of Col/Pres cardiac transplant. Just a little irony, as this whole thing is fraught with.)
Well, after his last hospitalization (2 weeks ago) they sent him home in worse condition than when he was admitted - the anasarca was so bad they had to triple his diuretics (great canned hospital food), and he was so severely overmedicated by narcotics that he was a safety risk to himself, yet their best answer was to bring him back through the ED - which I refused to. I put him on a strict detox and bone building diet (after refusing to allow the Endocrinology team to put him on Forteo because of IT'S known side effect of increased tumor development and no long term studies - mind you, I HATE HATE HATE the FDA, most crooked agency in government, followed by a severe dislike of big pharma and hospital CEO's after 30 years of experience in some of the Eastern seaboards finest facilities...first hand experience is a real eye
opener, and I had worked for the former Editor in Chief of the Journal of Clinical Micro back in the 80's - I saw how clinical trials are finessed.
He's doing better this week, but I am so tired of everything. I've had to take over all the finances, household chores, vehicle maintenance, etc that he used to, plus my new job, plus, in an effort to save ourselves, pack up a 5 bedroom/3 bath home to downsize across country before 3 months is out. This all on the heels of having had BOTH his parents living with us for the past five years - his dad with end stage CHF (he died in May 2012) and his mom with mid to early late stage Alzheimers. (We had her institutionalized in August of last year when I could no longer cope with her needs and my husbands.) Neither of us have any siblings.
My adult children both live over 200 miles away and can offer little assistance. My husband's oldest daughter struggles with her own issues but remains involved, and he has two other children whom, despite never being a day late or dollar short with child support or failing to provide insurance coverage to, their mother is probably a borderline personality sufferer, and she has not allowed him to see his children in 3 years, despite our attempts to enforce through family court.
I worked for my state's largest and most solvent hospital system until I was fired in February when I was politically drummed out of the system because, as a self insured hospital, my husband was costing them too much money, and I was the third highest paid nurse in my category and managers were told to cut their budgets by 5% per annum. And those are just the highlights of our process.
Post Edited By Moderator (hep93) : 4/30/2013 4:53:14 PM (GMT-6)