Friday, April 9, 2010

40 Years Living with a Time Bomb

I was just diagnosed with HCV stage 3. At this time, that's all I know. I have known that the disease was with me for 40 years. It’s been like living with a little time bomb in my body, not knowing when it was going to go off. Well this week, it went off. I finally went back to my liver doctor and all it took was one blood test for him to put me on the fast track. The biopsy was next, and I got the call 3 days ago. Stage 3 and that's all I know. This is something I wrote, describing the time line of how I got here:
ok, here is the 2 minute elevator ride explanation for me:

When I was 17 I did what 17 year old kids did ..It was 1969...fill in the blanks... i went to Woodstock too.
Shortly after, I woke up one day and I turned a lovely shade of yellow jaundice. Hep non a/b in 1990 I wanted some life insurance, so they did a blood test; elevated enzymes. The doctor said they were slightly elevated, no biopsy needed. I didn't get the life insurance.
5 years ago I had a physical and blood test came back with really elevated enzymes...the DR said we need to do more blood work. Nope, don't want to do it, so I didn't. (Denial)

Last year I got the shingles (ow) more blood work, and the doctor said you really need to see a liver dude.

In March I finally saw the same DR that I saw in 1992...blood tests, biopsy, and phone call....treatment immediately. Not good...ground floor, 40 years later, and now I have to get off.

I am new at this, and I don't know what is going to happen and I am really worried. I’m thinking that if I did something sooner that maybe I wouldn't be in this mess today; but you can't turn back the clock. What has helped me for the last 3 days is the support and help I get from people I don't even know. Taking the time to answer my many dumb questions. They are a life line in a sea of doom. I’m really worried, mostly because I don't know what's happening. Thank you for being one of those people that helps someone like me.

Thanks so much for who you are Uncle Dudeness.............

Uncle Dudeness - Biopsy Results

I just got the biopsy results from my DR today, and he said it was worse than he thought. Although he is a liver specialist, he is sending me to another liver specialist at Yale. today, I found myself just staring down with no thought in my head. Blank. I feel lost, I don't know what to expect. I posted the results at Janis. I hope Step will look at it soon, cuz i am clueless.

Anna's Story

My name is Anna. I live in western Sydney. I am 62 years old. I work in a legal firm.

I started injecting drugs in about 1969. At first it was amphetamines, then anything I could crush up and inject. I've injected mescaline and LSD, tranquilisers and speed. In my stupidity, I thought that if you couldn't shoot up a drug it wasn't worth doing. I was living in Canada at the time.

When I came back to Australia, it wasn't very long before I found my drug of choice - heroin. I first went onto a Methadone program in 1975, but Methadone was always considered a backup for withdrawal symptoms for times of unavailability (for whatever reason) of heroin.

I spent the next 19 years as a junkie. I had a co-dependent man who was extremely violent, and he made me do the most horrendous things to obtain junk. Finally, in 1994, I had had enough. I did not want to be a middle aged heroin addict. I decided to leave my man and go to Sydney. This turned out to be very fortuitous. I believe that to quit any addiction, you need to get away, make new friends, find a new drug-free lover and run from your junkie environment.

I moved from Melbourne to Sydney in 1994. I was quite ill for a couple of months but still found a job and attempted to shake off my junkie mentality. I had a little help with Codral Forte, and I drank quite a bit of alcohol.

In 1994 I was diagnosed with psoriasis. I went to a doctor who suggested I take Methotrexate to control my psoriasis. Methotrexate can have a detrimental affect on the liver and its use needs to be supervised. I had a blood test which showed I had hep C. I wasn't concerned at that stage. I didn't take the diagnosis seriously. I continued to live my life "to the fullest". In time, the junkie mentality faded. I was still drinking nearly every day.

I continued to take Methotrexate unsupervised for a long time. In 2003 I found a GP I liked and discovered that I had hypertension which required blood pressure medication. I had regular blood tests. My liver functions were rising. I looked into hep C treatment. In 2006 I went to a gastroenterologist and received advice about treatment. I didn't like the sound of it. I was afraid of the liver biopsy.

In 2007 I stopped drinking completely and discontinued taking Methotrexate. My liver functions were still rising and my GP said I should seriously consider Interferon treatment. I went to a Sydney Hospital where I had an ultrasound, a CT scan and a biopsy. My fear of having a biopsy was completely unfounded as the procedure was painless.

With a positive attitude, I started the interferon/ribavirin treatment in January 2008. I had heard and read some pretty negative things about it, but was adamant that the drugs would not affect me and that I would be able to fly through the 48 weeks of treatment.

Unfortunately, that was not to be the case. Within six weeks after starting treatment I was anemic. As a consequence, I was prescribed "Epo" to boost my red blood cells which I had to inject twice per week. The “Epo” did give me a little more energy.

Prior to the treatment I was a strong advocate for exercise. I walked five days a week for an hour during my lunch period. Sometimes, when I was feeling weak, I had to force myself to exercise. Then the horror of the treatment really began. One Friday evening, seven weeks or so into the treatment after walking during lunch that day, I started to develop cramps in my feet and lower legs. They were excruciating, and I was hopping around the bathroom screaming with pain. The cramps that night lasted about five minutes. I did try and walk again but the same thing happened. I discontinued exercise of any description.

The cramps got worse and worse. I'd be at my keyboard at work and my hands would cramp. Also several times at work, I would drop to my knees crying in agony. I informed the hospital and was told this was an unusual side effect. I was instructed to drink plenty of water and also to drink Gatorade and tonic water. None of these helped, and I suffered a great deal. Every day I would get cramps in my feet, lower legs, the inside of my thighs and hands with no relief in sight. Eventually, the hospital gave me a prescription for 300mg quinine sulphate. I took one tablet daily. They did ease the cramps but made my hands shake and my heart flutter. One night, even though I was taking the quinine, I had cramps in my legs for nine hours straight. It was a terrible night and the memory of it will stay with me forever.

I also had severe pain in my left shoulder and upper back. My GP sent me to a physiotherapist but it didn't help. I was convinced it was tendonitis from my years of typing. I purchased several creams and lotions for this condition but they offered only temporary relief. Once again, the hospital had no answer for this. Another unusual side effect I was told, but wait, there's more . . .

The right side of my face started to swell,, also my right ankle. The swelling in my ankle made it difficult to do anything. Sometimes in the evening, after a day of walking around, my whole body would ache. It was particularly bad in the mornings. I could feel my eyes were swollen when I woke up. The hospital had no answers for me regarding the swelling. My GP told me to take time off work and elevate my leg, which I did, to no effect. Eventually, my GP told me that one of my blood pressure medications, Felodur, could be causing the swelling. I stopped taking them and the swelling went down. The hospital said that Interferon had nothing to do with this problem though I had been taking Felodur for years and had never had an adverse reaction before.

I was prescribed Panadeine Forte for pain. Unfortunately, codeine makes me itch. I couldn't take the tablets as I'd scratch my psoriasis and make it worse. The treatment also had a severely detrimental effect on my psoriasis though not at first, but as I got into the treatment, I got psoriasis in places where I had never had it before. I knew that Interferon would affect psoriasis. It broke out all over my back and I would be unbelievably itchy 24 hours a day. I tried everything to ease the itching. The hospital gave me antihistamines but they were of little help.
After 24 weeks I stopped the treatment. It wasn't working. I still have hep C.
Now my psoriasis is the worst it's ever been. My shoulder has stopped aching and I no longer get cramps. My right leg still hurts when I exercise. It has taken four months for me to recover, but I feel that I will never be as well as I was before the treatment.
Having said all of the above, I do not wish to put anyone off trying to get rid of their hep C with interferon/ribavirin. I should have stopped drinking years earlier and tried the treatment. I'm sure I would have had more success than I did.

I was willing to go to week 48 if I was responding to treatment.

Inspirational Quote by Edward Everett Hale

I am only one, but I am one. I cannot do everything, but I will not let what I cannot do interfere with what I can do.

~Thank you Correen~