My Life with Hcv

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by
Trishamn

 

My name is Patricia Nolan, I live in the Washington, DC area where I conduct business development for a large middle eastern country.  I have an MBA in International Business from George Mason University, I am 35, single and I was diagnosed with Hepatitis C in October of 1997.  I am currently on Rebetron and have been undetected for the virus since week 5.  My current passion is finding out all I can about hepatitis c so that I can share what I learn with others.  I still remember what it was like to be newly diagnosed and have that "alone feeling" and it was so frustrating that no one was able to answer my questions.  Research, the passage of time, and love and support from a few close friends have helped me to deal with being hcv positive.  I am still in the process of learning and growing.  Here is what I went through when I was first diagnosed.  Its a familiar story.

August - October, 1997 The "runaround"
I had been seen my primary care physician (at Georgetown University Medical Center) for extreme fatigue and urinary incontinence problems (not bacterially caused) when they noticed that my liver enzymes were slightly elevated.  They ran every test in the book, then when those came back negative, they tested my for Hepatitis C.  I remembered that I was so glad when they told me I had that rather than diabetes-or something worse.  I really did not know anything about it.  I got a slim brochure from the doctor that produced more questions rather than answered them.  My doctor's said that they were going to monitor me for a few years, and that I should not worry about it.  They did not say anything about not drinking alcohol.  I told them I still had the fatigue, was there nothing they could do?  They decided to run a bDNA to check me for a viral load.  It came back negative, a doctor that was filling in for my main practitioner said that I did not have hep c-in a letter sent to my home!   I was ebullient!  But I was still so tired, after several weeks of phoning, I got to speak to my doctor, he admitted that I may still have hcv and that a negative bDNA does not mean that I don't have hcv.  I did not realize at the time, but a bDNA is not a sensitive test and only measures viral loads above 200,000.  My primary care physician admitted that he did not know a lot about hcv and that he would have to "read up" on it.  I told him that I would prefer not to be included in his learning curve, and could he authorize me to see a specialist.

December 1997 - February 1998 "It's all in your head"
I spent the next few weeks on the internet (it was scary back then, was not really a lot of really well laid out info, plus it was overwhelming and scary), and by the time I saw the specialist in December, I was scared to death and very confused.  I really wanted to know why I felt so awful all the time (could it be cirrhosis?).  On my insistance, the specialist ran a PCR and my viral load came back <2,000.  When he sat down with me in February, he said that with such a low viral load, I should not be feeling any symptoms at all.  He thought that I was probably depressed from the news of the hcv, and that numbers like mine are what they are shooting for with treatment.  I told him that it did not make sense, if it was the news of the hcv that depressed me, then why was I just as fatigued before my diagnosis?  Whatever.  I asked him if he knew of any primary care physicians that specialized in liver diseases, that if they were going to just monitor me, at least I wanted someone that knew what they were doing.

March 1998-I found a sympathetic primary care physician-joy!
When I met with my new primary care physician (at George Washington University Medical Center) for the first time, I told him that I had been diagnosed with hep c and that I felt horrible, but the liver specialist said that it was probably just in my head.  I asked him if there was anything I could do about the fatigue, night sweats and insomnia they were really having an effect on my quality of life.  He said that my symptoms sounded like those of hcv, not depression.  He said that if there is no underlying medical reason for those kind of symptoms, then they look for psychological causes, in my case, I did have a medical reason.  He admitted that he does not know enough about hcv to treat patients.  He said that I should go to the National Institutes of Health (NIH), and that they had the best doctors in the country.  He said that they may be able to help me, but that the treatment was chemotherapy and would be difficult.

May - August 1998 Tests, tests and more tests
It took me over 2 months to get up enough nerve to call NIH and make an appointment.   I'm pretty sure that I was in denial.  But I was really getting symptomatic, I knew that I could not continue to ignore it.  The nurses and doctors there were so nice to me, they checked off all of my symptoms (which now included an achy feeling in my right side) on a sheet.  They explained that how I felt was pretty common for people with hcv.  It felt so good to not be alone.  They ran another PCR and my viral load was 840.  Very low.  My alts were in normal ranges most of the time, but would spike up to abnormal levels on occasion.  In July they preformed a biopsy.   My doctors were confident that I would have negligible damage.  It turned out that I had mild to moderate inflammation in the portal areas, no necrosis, fibrosis or cirrhosis.  They said that I could wait, or they could treat me outside of the study, based upon my genotype.  I decided I would wait it out for something better-I was in no hurry to go on chemotherapy and possibly feel worse than I already did.

It was really hot and humid in DC that summer.  I spent many days and nights in my bed sleeping, trying to rest.  No amount of sleep seemed to be enough.  I had never been so tired in my life.  I could not maintain my relationship with my fiancée any longer (it was just too much effort), and we decided to take a break from the relationship and see how we felt.  The fatigue started to affect my job performance, I was late coming into work by an hour sometimes two.  It did not matter when I got up, it just took me forever to get ready.  I decided that I could not continue like this anymore, so I called my doctors at NIH and told them that I would give treatment a try. 

October 1998 to present Doing the "Combo Mombo"
I started treatment on October 15, 1998 almost one year to the date of my diagnosis.   I think that the wait was good for me, it gave me some time to adjust and mentally prepare for treatment.  The first night was pretty bad, but within 2 days, I felt this "lifting" feeling when I woke up.  My feet actually felt light and I know that it's weird, but I felt like the virus had left my body.  Over the following weeks, the treatment sides kicked in, they aren't really bad for me now, but it's not a party either.  I started to post on the shn message board in December, looking to meet others, especially since I had gotten my first PCR and it was undetected I wanted to talk to others, to find out if I was "cured" or not.  I also wanted to know what did other people did to help with the nausea, headaches, bruising while on treatment.    I have met some people there that have been so supportive, they have changed my life.  I went to my first Wash support group in January and I've been active ever since. 

I am (hopefully) done with treatment in September of 1999 and I hope that I will continue to remain PCR undetected.  I have a lot of hope for myself. 

 

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