Combo Survival Guide  all information compiled by Trishamn, Lacey & Freyja

This information got me through all aspects of Side Effects from Hep C treatment

Shore to Shore for a Cure...

I'm fourty two years old and have HCV. I found out about four years ago……………
When I first found out I was HCV positive, I was devastated. I was sure that my life was going to end the next day and it terrified me not knowing what was happening. My original diagnosis came from a nurse practitioner and to say the least, she had no bed side manner. She proceeded to tell me I had Hepatitis B and that I could no longer be seen at that office. (This by the way was a misdiagnoses). So off I went, tail tucked between my legs, to see the specialist. If a health care provider could treat you like this how on earth was the rest of society going to treat you? Was a thought that I couldn't get out of my head. Thank god I did find a specialist who assured me I didn't have to worry about pushing daisies yet and the illness in fact was not a casually spread one.

Hepatitis can be a very manageable disease and yes there is treatment for it. My Dr assured me that you can live a very healthy life if you take care of yourself. There are support groups on the net that can lead you to resources and organizations that can help with medication and most off all education and awareness.
I have been searching and searching for information about this illness. The more I read the less I know. I dont understand why this disease isnt being taken as seriously as some of the other diseases. Maybe we just are not being loud enough to be heard. So for others like me who want everyone to here our voice, I am attempting to hike from NJ to CA. My progress will be very slow. But I will do anything I can to help spread the word. I cannot set up fund raisers and such but if anyone is out there who would like to use my effort to promote their drives, I will be posting on Facebook my daily progress. I'm going to survive this hike as natural as possible, and I don't mind catching rain, but a fresh bottle of water along the way and some high fives with other HCV sufferers would mean the world to be. Please follow me on my journey. http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455

I can sit home and feel sorry for my self because I have this illness or I can go out there a spread awareness . At this time do not qualify for assistance with the medication. So I have nothing but time on my hands. To much time to just sit here, and hopefully enough to receive treatment.

So this begins my journey. Shore to Shore for a cure...

I'm with you,
Betty Vega - keep us all posted

Just an update..So far I have a 190 plus fans on the HepC awareness page. You can view it here..http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455 I need all the help I can get..It is not a donation page..I do need your help voting for me on the prilosec sponsorship page. Im only asking for a little support and a place to rest my head along the way.

If any one can help coordinated things with other walks or fund raiser along the way please let me know. I WOULD LIKE TO MAP THE TRIP WITH THESE THINGS IN MIND.

Thanks again a reply now and would make my day..hint hint

Im' leaving on the 13th for my hike across The U.S. to tell as many as I can to get tested. Some of you know what I'm talking about and some of you might not. I would put the link to my page up but I have been blocked from another forum and think that might be why..But any way I hope to see some of you along the way..I am going to be in DC for the rally on the 19th. Then I'm heading south. I will be traveling down the east coast across the south and up to Cali..See you around

Theresa

You Go Girl...Betty

Albina's Hep C Story

My name is Albina,I am 34 years, I have never done drugs, never had a blood transfusion, never shared needles.  Just a difficult labour 8 years ago, with forceps, some dental procedures during these years, but no blood transfusion.

I was diagnosed on September 2009.  Just by coincidence, routine test, although I had a long time feeling tired and almost the first to catch the flu. Almost every month just like menstruating.

When I heard about the virus I remained completely indifferent, I didn't know anything about it.

Now I know a lot of things.I am genotype 1; low viral load, 256.000, fibrosis test 0.20.

I thank god, and I hope to continue doing well.

Yes I am tired, Yes I still catch the flu, but at least my lab tests are good.

I have not done the biopsy, and I do not know when I will have one. I had an US and CT Scan because of a hemangioma on my liver to check for tumor. I am having another US on May, since doctor wants to keep me under surveillance. But I am happy! I have two kids, who are negative. My husband who is negative. They love me.

I have a family that loves me, parents, brother ,sister, and I feel happy.

The virus is not gonna beat me!  I have promised in silence to my family and to myself!

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~

Geno 1's CAN clear! by Carolyn

Carolyn Diagnosed age 42 grade 1 stage 2 VL 6,170,000 Genotye 1a. Did treatment for 48 weeks. Difficult but a positive support system was major factor. Just today in fact, my 1 year EOT results came back. I am still clear. I'm going to go ahead and call it cured. Geno 1's CAN clear!