My Personal Experience with Beating Hepatitis C
Horizons in Hemophilia, April 2012
By an Anonymous Member of the Georgia Bleeding Disorder Community
The HTCs and HoG are staffed with excellent doctors and support personnel and I thank all of them for their dedicated work helping people like me. I met Cathy Dowis for the first time during an annual visit to the Emory HTC where the usual blood work and questions took place, all in all a routine visit. A few weeks later I received a devastating call from Cathy. She told me that my blood work showed elevated liver enzymes indicating Hepatitis C. My first response was "What? Hepa...Hep" I could barely get the words out. I felt nauseous and shocked. Later I felt angry...angry at contracting something normally associated with (from the general public's mind) unsafe behavior.
I inherited von Willebrand Disease and during my childhood I suffered miserably from nosebleeds which required regular trips to the hospital for Factor VIII infusions. The hospital was like a second home to me for many years. During one particularly bad episode, I bled for over 8 hours and by the time I was treated, I had lost so much blood that I needed a blood transfusion. This was in the 80’s; before anyone knew to screen for Hepatitis C.
Cathy was empathetic and patient with me on the phone as I regained enough composure to be able to ask questions like "What exactly is that?" and "If it was most likely from a childhood blood transfusion, how on earth has this been undetected for so many years?" Cathy directed me to go to Emory and meet with a specialist. I went online read about Hep C and the treatments and chose to be in denial for the next few years.
A few years later during another annual visit to the HTC, I met Francie Lasseter who usually worked at Emory Crawford-Long, but happened to be there that day. She asked if I had considered treatment for the Hep C. I had read about several treatments, but had no interest in them due to horrific side effects. Francie explained that there was a newer "Pegylated" version of Interferon that had been successful with fewer and less dramatic side effects. She suggested that there would be no harm in at least talking to a Hepatologist. I concurred; what would be the harm?
A few weeks later I went to Emory Crawford-Long's "Infectious Disease Clinic" -- the name needs some marketing geniuses to spruce it up and make it sound more welcoming. This is where I met Dr. Melissa Osborn. Dr. Osborn is a great soul; she is both compassionate and respectful. After further tests she confirmed that I had Hepatitis C, but *thankfully* the type that responds well to treatment. We discussed what "treatment" involved and I agreed to consider it.
For the next week I dedicated hours of time searching on the Internet for other people's experiences with Pegasys and Ribavirin. The results from my search varied from "horrible" to "downright nightmarish" with stories of people too fatigued to work, too nauseous to eat and just too sick from the treatment to live their lives. While I'm not the type to be easily influenced, the fact that I had found nothing positive certainly made me think that the treatment was worse than the disease. Hep C "might" kill me, but treatment "would" make me very sick.
I conveyed my fears to Dr. Osborn during a follow up visit and we came to an agreement. I would try treatment and should the side-effects impact my quality of life to the point where I could not work or if I became otherwise miserable, we would simply stop. There was nothing to lose; I'd be technically no worse off than before starting treatment.
So my treatment plan was Pegasys and Ribavirin for the next six months with regular blood monitoring.
You'd think if you can give yourself an IV that a little subcutaneous injection would be easy, but I trembled that first time and ended up sticking myself about five times. By injection number three it was no big deal. The first night after the first shot of Pegasys I felt a bit feverish--but to be candid, I'm not sure if that was self-induced from the worry of how my body might react. By shot number three I had no side effects.
The Ribavirin pills didn't make me feel sick as long as I took them after eating some type of carbohydrate. On an empty stomach one pill was enough to make me feel as though I'd been kicked in the stomach, a feeling that that lasted several hours. You only make that mistake once or twice! Drinking lots of water was important for keeping any nausea at bay.
The sub-q shots left me with small bruises so I had to rotate them around my abdomen. At one point the bruises were taking so long to heal that I thought I'd be left with polka dots--they took a few months post-treatment to clear up, but they did, every single one.
As for the other hair-raising side-effects I read online that deterred me from treatment for so long...I can honestly say that my personal response didn't even come close to the horrors that I read about. I didn't feel fatigued; in fact I continued to hike regularly--sometimes 10 miles at a time! I didn't lose any weight, become depressed or have reason to stop working or socializing. I did however, lose a couple of extra strands of hair every day--it wasn't noticeable to anyone else but me.
The routine blood tests were uneventful, I got used to seeing the same technician and after a couple of visits she remembered to use a butterfly instead of a straight-stick for drawing blood. It was nice getting the results and seeing the numbers go down. Beating the virus is a wonderful feeling.
The biggest issue that I experienced was not one that others had written about, so it may be isolated to the type of VWD I have or just pure coincidence. As an adult I would have one nosebleed every few years. While I was on treatment the frequency increased to about one per month. Thanks to HoG and the client assistance program this was not as disruptive as it could have been. Post-treatment the nosebleeds ceased and I've been fine for years!
I suggest that anyone considering treatment conduct their own research and become comfortable with their own decision, whatever that might be. However, also consider your sources: the majority of blogs and websites I found were written by people that may have been involved in high risk behavior which in itself would take a toll on the body. I'm not a medical expert at all, that is simply my observation.
The intent of writing this piece is not to provide pseudo-medical advice, hence the deliberate omission of PCR viral loads and other test results; the intent was to communicate, from one member of the bleeding community to another, my personal experience with beating Hepatitis C. I have not been asked by anyone from HoG or Emory to write this. The words, the sentiments, are all mine.
I wish you the best and hope you have a healthy, happy and fulfilled life. Thanks Cathy Dowis for your many, many years of service. Thanks to Francie Lasseter for putting the bug in my ear that saved my liver, and perhaps my life. Thanks to Dr. Osborn for your candor, compassion and for being as much as a friend as a doctor.
Thank you to HoG and all the staff at the HTC for everything that you do. You do help us to live "normal" lives.