Wednesday, March 24, 2010

Thelma's Story


My name is Thelma.

I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.

Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.

I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.

My motto is “it’s best to have done it than to wish I could have done it”.


Loretta's Story

I won’t be starting treatment for another month, but this is my story so far.

Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.

I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.


It may sound strange, but Hepatitis C has turned out to be one of the best things that ever happened to me. As a person with a history of problems with drugs and alcohol, it finally got me to clean up my act. Moreover, both the disease and the treatment have made my life immeasurably richer than it might otherwise have been.

I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.

I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.

I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.

Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.

When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.

However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.

Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.

I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.