Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Hi, my name is . I was a member of this group before, but had subscribed to too many groups, and cut this one. I left one of the groups I kept because of a disagreement; a mod was providing false information and insisting it was accurate. My position was and always will be that one should trust their doctor, but if you find you can’t, then it’s time to get a new doctor. They’re only human and they make mistakes but they have the real-world experience (and full background information) to make decisions. Of course, it’s important to provide that background information. Medicine should make sense, and if it doesn’t, ask questions or get a second opinion! I am 53 years and married to a wonderfully supportive woman who only happens to be a pediatric nurse. She does look out for me though. She attends all of my appointments, since my memory is at issue. I am also a recovering addict and did anything and everything for 20 years. When I finally went to treatment, I was injecting cocaine, which I am sure is how I contracted this virus. I’ve been clean and sober for 20 years now. For over 10 years I worked as a substance abuse counselor and went to school, culminating in a Master’s degree in Addiction Psychology. I’ve also taught psychology at the local community college. My disease has progressed to Late Stage Liver Disease (LSLD = cirrhosis, but my liver isn’t in immediate danger of shutting down) and I have developed hepatic encephalopathy, which is doing permanent neurological damage. I can’t work anymore. My memory is shot, the fog is terrible and I’m losing my sense of balance, so I walk with a cane. I can walk about a block, maybe two small ones, but that’s about it. Stairs are a killer. In September I was hospitalized for 5 days due to the encephalopathy. Currently, I am undergoing my third treatment. This time around I am doing Infergen, which is a daily injectable form of interferon. My second treatment was cut short by the insurance company. I was supposed to go 72 weeks, but they stopped it at 52. After several weeks of fighting with them, I was approved for the full 72 weeks. So, I’ve been on treatment almost 2 years, with only a short break in-between the two treatments. As my hemoglobin tends to drop, I am also on Procrit. I have great doctors, including a hepatologist and internist. I’ve had trouble with psychiatrists (I have mental health issues as well) but recently the insurance company approved for me to go see the shrink I’d seen for many years, but had to stop because of insurance (he’s not in-network). I’ve applied for SS disability, but was turned down twice. They said that since I had my arms and legs, I couldn’t be considered disabled! My attorney is appealing this decision, but my understanding is that we are now waiting for a hearing with a judicial judge which could take up to 2 years. Our money will not last much longer, so this is a source of stress as well. Well, I guess that’s enough for now. Even typing this much wears me out, though I can work a mouse without too much trouble. J Matchinsky Quote Link to comment Share on other sites More sharing options...
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