Thursday, April 22, 2010

Never Give Up Hope!!!!! An Inspirational Story by Ronnie

I just got back from an NA meeting. I got Hepatitis C from intravenous drug use (Heroin). I started using drugs when I was 12 yrs old. My introduction to Heroin was when I was 19 yrs of age. In 1997 I used a needle after my twin sister did (the first time I had done this). I knew she had Hep C. She was diagnosed with this curse of an illness in 1992. When the doctors first gave a name to this strain of Hepatitis. Before then, as you must know, it was referred to as NonA-NonB. Well, in my trusting nature I believed my sister had bleached the needle, however she didn't, and I foolishly trusted her. I don't blame her. I take full responsibility for my actions. Anyway, I saw a Hepatologist in 1999, and I had a biopsy done. Stage 1..genotype 1a. Though i had no symptoms of the disease he started me on Interferon and Ribavirin. 3 shots a week and 4 pills daily. I went through treatment while working and being a single mother. It was not easy,to say the least. My side effects were horrible. "Flu-like" symptoms,i think, is hardly an adequate term for what i went through. I was extremely sick,not from Hep C,but from tx. I was hospitalized 2 times with pneumonia and twice with kidney infections,dehydration came along with the 4 hospitalizations. This was over a course of 6 months. During my last stay in the hospital my viral load count went from 19mil to 13 mil. The doctor pulled me off the treatment. My immune system broke down completely. I did go on an anti-depressant before i started tx. The first side effect of tx. is not a medical one, but it is a psychological one.....Depression..suicidal thoughts. I went Thur both ,and i did attempt to kill myself once. Thank God it wasn't my time. So,now I'm pulled off treatment and i discover i have hypothyroidism, neuropathy,and osteoarthritis. I attribute these illness's to treatment,not Hep C. I wait one year..try to build up my immune system,and in 2001 i give tx. another try. This time i was able to take some time off of work..a few weeks here and there and again went through it as a single parent. My husband was in the last stage of brain cancer at the time. He was unable to parent. On the second round of tx...still the Interferon 3 shots daily,and the Riba, I lasted 5 months before I was pulled from tx for the same reasons as the first time. This time when the doctor pulled me I cried like a baby, as my viral count was 134, however he felt my life was being compromised. I did not goon an anti-depressant right away and felt like I was lost in a tunnel of depression and there was no light at the end of the tunnel. I could not get out of bed for days at a time, nor could I eat or sleep well. Similar experience with my 1st tx. Fatigue....YES!

I then went on the study for intergen..lasted one month. It was absolutely brutal on my body and mind.

Betty, I used to sugar coat treatment. I do not do that anymore. Our bodies naturally have a certain amount of Interferon in them. The amount that is in tx. is TOXIC....pure poison. It is up to each individual to decide whether tx. is the way to go for them. All react differently. My suggestion to those who have not gone through treatment before is to see a Hepatologist they trust, do some research on their own, and really be informed about treatment before undergoing it. I am now 54 yrs. old. I will never go through any treatment for Hep C again, except for a few supplements I do take.

I regret going through any treatment in the first place. In retrospect, I regret putting the needle in my arm. However I did and it is for me to live with. I do a lot of research on Hep C,  and I belong to several Hepatitis C Awareness Groups through-out the Country. I advocate for a "cure" at this point, a vaccine, and I try to provide info, support, and friendship to all that I come in contact with. In the rooms of NA, many people have Hep C. I believe their is a cure for HCV,I also believe that the Pharmaceutical Companies are making a mint off of those infected with the illness, and therefore have not disclosed this information. This is only my opinion after doing much research and speaking with many well-learned doctors who specialize in Hep C. The doctors are being paid very well also. I feel that I was used as a guinea pig as far as tx. goes.

I live my life to the fullest that I possibly can on a daily basis. I exercise, eat properly, rest when needed, and sleep as needed. I do not allow stress into my life....ever! I had let stress into my life and I realize that only made the Hep C progress faster. I do not let HCV define me, enslave me, or victimize me. I have been drug free since 1997 :).
As of last biopsy I am approaching Stage 3. I deal with this illness the best that I can. You know it's not my Liver that is giving me so many problems now. It is the neuropathy..more so the osteo. As I've said before to people I speak with...treatment, for me is the gift that keeps on giving.

So, this is my story up to this moment in my life. For those who read this I am not saying not to go through treatment, I am saying please be informed, and if you do not like the doctor that you are seeing, FIRE him/her. The doctor is working for you and getting very well paid for it. If you want a second opinion by all means get one.

Ok I am tired I will say goodnight to you and to all that read this.

As I have posted many times through the yrs. that I have been at Seekers...ALL Stay strong, never give in, never give up, keep the faith, always have HOPE, do not drink alcohol, do not take any drug without first consulting your doctor; that includes any herbal supplement, and live your lives to the fullest that you can. Remember the Liver metabolizes all that we put into our body....

God Bless and Peace to all...Ronnie

Stay in the Fight.. Don’t Give Up on your Liver!! Summer's Story

HCV and Cirrhosis have been the main focus of my life. In l980 my mother was diagnosed with cirrhosis of the liver. In the early 90”s they informed her that they had found a new strain of Hepatitis; it was called “C”. They gave her interferon for a time, but it made her so sick she didn’t want to take it anymore. I only wish that we would have understood what the outcome could bring by not treating this. In 2004, my mother died of liver cancer. I stayed with her for two years, watching her slowing deteriorate. She had two surgeries; trying to remove the cancer, but it was too late, it had spread. This was the most painful time in my life, seeing the mother I have, that was always so full of life and extremely active, die in this way. Needless to say I was so depressed, couldn’t get out of bed. Finally went to the doctor for my depression, and was informed that I had Hep C since 2002. They had over looked the test results. Talk about a BLOW! Losing my mother, then my other love, (my dog) and finding out I had Hep C, geno 1, all in the same month, sent me into the gloom of life. I told no one. Kept all my pain inside. The doctor told me that I needed to look into treatment, NOW! Of course, every doctor I went to irritated me because of, what seemed to be their lack of knowledge of the virus. One hospital said that they would treat me in a study, (of course, I wanted no part of being a lab rat). Anger was taking over my judgment, of what was real. I just wanted it to go away. Mentally knowing I had this and the thought of the same thing happening to me as did my mother, took me back to the doctor. This was 2007. I went to a Gastro doctor, he put me on SOC. He also told me that he had not treated many with HCV. Another, “OH BOY” moment. I went ahead and started the SOC, with a good attitude, that I would get through this and not let myself feel bad. Well….I gave it a good fight. After getting started, he checked me at 6wks; I had over a 2 log drop. So I continued. At the 24 wk point, checked again, and was back up to 2 million. He kept me on the meds for the full 48wks. At the end, he shook my hand and said,” sorry, maybe within the next 5 years they will have a new treatment”. I was a non responder. I found out through my brother the next week that his boss had gone into clinical trial study. He had just got the results of his 6 month post tx. He was SVR!!! I immediately emailed the study, (my luck had changed). I had gotten an email back just after I sent it. They wanted me to send all paperwork. They accepted me into the boceprevir study. I was at ND, by wk 12, and stayed that way through the 48 wks. The side effects were a little more intense this time around. I wasn’t sure if it was because only a month before I had just went though 48 wks of SOC, now back in the fight, or if it was because of the boceprevir. The fatigue, of course, was there pretty much all of the time. I also developed anemia. They had me on procrit shots, average, once a week. Finding out now, I was lucky in that respect too. I also had to take Neupogen, twice weekly for the last 3 months of the tx. All was do able though. I did loose about 60% of my hair. I’m now at 3 wks post tx and waiting for my results of my 4 wk post labs. I have a great feeling about this. I know that there is a chance that I could be disappointed, but so far I feel very positive. I would tell anyone that they should never give up, stay in the fight, the best way you can. Don’t give up on your liver. What this virus can do to it is nothing nice.

My thoughts and well wishes are for all that are fighting, or know someone fighting this battle.