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..so 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 Betty...now I am tired lol..so 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
I feel the same way as you about treatment, I did Interferon + ribivirin in 1998, then they added an anti-flur drug. I also did Infergen, tried Halt-C, I failed at all treatemnts, and was taken off each one due to the constant hospitalizations. By 98 when this was occuring I had just been dx w/ Hep C, which we figure I got from a blood transfusion I got in 1979 when I had my son. The following yr I had my 3rd and last child, 1980. Seventeen years later she was dx w/ Hep C via blood donation (Red Cross). She was asymptomatic and I then was tested also and was well into liver disease, hence alot of the health problems I was having.
ReplyDeleteThey didn't know much about children born to moms w/ Hep so mny daughter was of interest to my docs too.
After the interferon,(I strongly believe, at the very least, it gave me neuropathy with crippling pain in my feet for over a year, which has now burned itself out just leaving me with numb feet ankles down and very poor balance) But anyway...the interferon sparked my 1A genotype hcv into action and by July 28 2001 I was being transplanted after having been listed about 14 months. Top say I was lucky to be alive is understatement as I was in coma June 3 to Sept 9 of 2001, ventilator dependent, diabetic (the steroids) and many other things... Anyway made it out and rehabbed to learn to walk, sit, etc again, and after 18 mos of getting my body together as much as possible despite fibromyalgia, migraines, balance and neuro issues, frequent pneumonia, arthritis, diabetes, weakness very profound...but other than that I am doing fine. Haha. Can't work, blew my 4021k in 1999 to pay for interferon which they said would "save me" and wasn't covered by my health ins plan as it was "off label" use for that drug at that time. So am scraping to survive on disability, which is pathetic. I am a nusre, but not able to work anymore. My daughter is now listed (28 yrs old, just started w/ symptoms about 3 yrs ago) and very close to getting her liver transplant with a MELD of 21, shes very sick and I stay with her 4-5 days a week (she lives 20 or so miles from me) and care for her and her kids & hubby while she waits for "the call".
They are already talking to her about "doing treatment" after she gets her transplant. She is unsure which was to go and I cannot advise her on such a personal decision. She has seen what I went through.
God Bless you all, hope you make it through and if ya don't, we'll get together on the 'other side' and have one heck of a party!!!!