Introduction

[Guest guest]

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