Donna’s Hep C Survivor Story 3
My name is Donna and in 1989 while giving birth to my twin sons by c-section i had complications and required a blood transfusion. That’s how the docs think i got the hep c virus due to the high viral load, didn’t look like tattoo or needle stick or etc……anyway I was diagnosed with cervical and uterine cancer in 1994 and during the pre-surgical testing they discovered I had hepatitis C.
I lived through the cancer, but come 1999 upper quadrant pain and fatigue came along. I had testing and liver biopsy, and my liver was pretty eaten up. When I found out through Johns Hopkins Hospital that a living donor was possible, my sister stepped up and tested compatible to be a donor all the way until 2 days before surgery. They had taken another look at her cat scan and noticed that right where they would have to separate her liver there was an artery and the surgery would be too risky. This was a hard blow as I was getting considerably more ill, but nothing was worth risking my sister’s life.
One of my twin son’s had a husband and wife mentor team (big brother and big sister) the husband Steve McCann decided he wanted to be the donor for me. I couldn’t believe the brave act he was prepared to do for me especially considering that he and his wife had a 17 month old boy, their first child. Steve went through all the neccessary testing and on 12/10/01 we had a successful 21 hour surgery. It has been 6 1/2 months and I am doing quite well and so is he.
Now we are doing fundraising due to the fact that my work 3 months prior to the transplant called me into the office and told me I was suspended without pay and told to leave the office because they felt I was contagious and the other employees felt threatened. I had been the medical billing supervisor for 5 years, and was a very faithful hardworking employee despite the hepatitis C. It was a pain management practice, so the doctor I worked for was also a treating physician of mine (supposedly) I had a lot of pain from my spleen and he could have done a procedure to block the pain but instead he treated me with narcotics, which eventually lead to a high tolerance and addiction.
The doctor I worked for had used my confidential information against me and my chart became public knowledge for all of the staff to see. They knew I needed a transplant but I never told them why. Apparently they must have helped themselves to my chart. I could not believe that a medical office was throwing me out because of hepatitis C, as we had many patients with hep C as well as HIV.
Anyway I now have an attorney and have filed a complaint with the Department of Labor, but the staff and management from my former employer is lying. They’re saying they’ve seen me bleed and I was a threat to them. I have been so degraded and so back stabbed that I am devastated. I’ve written to the press, because I want this story told. I want people to know what happened to me so that no other employer ever does this to another employee again, but I just can’t get the story out. I see some pretty unimportant issues that get attention on TV and the newspaper but few like this one. I need to let the public know that employers can not do this. This is not acceptable and the public also needs to know exactly how the virus is transmitted so that no one else has to go through what I went through.
I told myself I will win and will. Its just a matter of time. Because I was not employed and just got out of a transplant surgery, I had no insurance either. During all of this my sons hid the fact that they also had hep C. They don’t know if it was me or it was from tattoos. My younger of the twin is bit of computer whiz. He got online and started doing research for type of treatment is needed for hep C genotype 1, he found out that the Harvoni drug cost $94,000 in the US. He even had a friend in California go down to a pharmacy in Mexico, and the price of Harvoni in Mexico was almost the same about $80,000. He kept searching and then he got on a forum for those with hep C and found a gal named Melissa McKnight who had gone through similar situation with her father. She ran a non profit and a hepatitis C pharmacy called Sunny Pharma.
Melissa referred my younger twin to Kumar to have hep C treatment sent to us in Kansas City. We were little worried because the meds were coming from India, but Kumar said we will give you folks a money back guarantee. I wasn’t really worried about the guarantee, I didn’t know if the meds were good or possibly even dangerous. Well we all took the plunge and two weeks in to it, we started feeling much better than before.
My eldest twin, had his viral loads checked and he was already clear. We called up Sunny Pharma and Kumar said complete the treatment, go the full length of 84 days. Its not worth it to take the risk.
This gave me even more confidence regarding my hep c virus. Well, after 12 weeks, my sons and I got tested. It took almost a week and half to get the results back because of Christmas. Well, we got them back, we no longer had hepatitis C. The hep C treatment cost from Sunny Pharma was less than $3,000 for all three of us.
My youngest son, reached out Melissa and gave her a big thanks. She was so happy, genuinely happy. I called up Kumar at Sunny Pharma and he was extremely happy but was concerned and wanted our family to get tested again in another 6 months. Kumar reminds me of a typical Indian man that is over protective and cautious. Great guy and very open heart. God bless him and Melissa for helping us get through this.