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Suereal's Story

SueMy name is Sue. This is my story.

I was born in Chicago in 1956 and had the perfect 50s childhood in an upper middle class area and was raised in a wonderful family. When I was a teenager the world around me was changing and in turmoil. Being the adventurous soul that I am I wandered into danger in the city and met artists, writers drug users etc - you know the drill- anyway I experimented for a minute in the world of drugs. This was only a short period as I am a moving on kind of person and cant stay in one mode for long. I traveled a lot and lied about my age and worked in the medical profession hoping to get my nurses degree. I was around a lot of blood and in those days or maybe in those hospitals there was no fear of blood.

In 1977 when I was 21, I settled down and got married and had my daughter Karen. Money was tight but we were happy. I got into real estate and had a wonderful career and my income helped raise our entire standard of living. I traveled in style now (no longer the hippie) and everything was going really great. The marriage went downhill but I found a life outside of it and did not waste any time feeling sorry for myself. My career just kept getting better and I developed some wonderful friendships that filled the void in my marriage.

In 1989 at the age of 33 I went on a diet. It was a fad diet at the time (Oprahís first one) and was medically supervised. The diet was a high protein liquid program that involved 5 drinks of yuck a day..I didnít eat solid food for 7 months. During this time I felt dizzy and very weak..The diet Dr. said to add more salt and not to worry. The diet ended and I started getting the shakes and breaking out in welts. I saw several Drs. and they all said I was stressed from my career and not to worry. This continued and I started to get colds a lot. At this point I got scared and thought maybe I had aids. I was tested and it was not aids.

In 1990 I was on a realtor committee that did public service activities and I ran a blood drive for the Persian Gulf crisis. I donated blood and thought nothing more about it until I received a letter from the blood bank stating that I had tested positive for HCV. At first I thought it said HIV. I read it again and saw HCV and had no clue what that was. I called the blood bank and was recommended to an infectious disease Dr. At my first Drs appointment he ran more bloodwork and the next appointment he said I did have hepatitis c virus. I asked him if I was going to die and he said yes.. I asked him how long I had to live and he said they don't know anything about this disease yet but in 3 or 4 years they will know more. I again asked him how long I have to live and he said the longest I have heard of anyone going with this is 8 years. Well that was a shocker at the age of 34 my whole perfect life collapsed right there. My daughter was 13 and all I could think of was how much she needs me.

In those days there was no internet and I was totally alone and in the dark about what to do next.. I had never even heard of anyone with this disease and felt alone on an island. I went to a gastro Dr. and was not too satisfied with him as he also was learning. At that appointment all the nurses came out to meet me since I was such an unusual case. This really scared me and made me think I was REALLY going to die. Next I did research which required long hours at medical libraries. I read some studies and the one that made the most sense was by a researcher Dr. Jorge Rakela. At the time he was at Mayo clinic and I telephoned him. When he returned my call I was amazed. I told him about my situation and he asked me to send my medical files which I did. He then called and asked me to come to Mayo clinic in Rochester Minn. I went alone and was terrified. Dr Rakela was wonderful. He explained that this disease is a long term illness and that I should get regular bloodwork to keep tabs on it since it is silent. He said to not drink as it's a liver disease.

While at Mayo I also saw a world class psychiatrist at the suggestion of my Dr. because I was deeply depressed. He started me on Prozac (antidepressant) which I credit with giving me back my sanity and happiness. Without Prozac I would have been depressed for 10 years..With Prozac I have had a wonderful decade in spite of the hep.

The toughest part of this disease is in my mind. I had a hard time accepting the fact that I was no longer superwoman and would have to slow down. I tried to run my business as I had before hep and this just didnít work anymore. I also learned to say no more. At one point I actually ran away from home and moved to New Orleans for 18 months because I felt labeled and got sick of the poor Sue looks that people gave me.. I just wanted to be me again. After that I reinvented myself and learned that there was more to me than my career.

Next I began seeing a local hepatologist and researcher at Northwestern University Hospital and am happy with him and have been a patient there since 1992. I have had 3 biopsies over the years and a lot of blood work. Things have changed a lot in the last 10 years. There is much more information and technology out there today.

Itís been 10 years and I am still here. I took a few years off of real estate to try treatment and for the last 2 years have tried pegylated interferon and the regular 3x a week combo interferon.. Even though I am not a sustained responder, treatment did do some good as I don't need as many naps now... I had a huge car wreck in Aug 2000 and at that time the combo treatment which had previously worked perfectly stopped working.

The one thing I want all of you to know is that even though we have a disability, life and time does go on. Don't waste your precious time with a bad attitude. Do the best you can do and try to enjoy the life you do have. My life is different than before hep but in many ways fuller. In the 10 years I have fought this disease I have lost many young healthy people I loved. They died in car wrecks, fast moving cancer, heart attacks etc. So you see we never know what is going to happen anyway even if we think we are perfectly healthy. My life has gone on and although its not the way I had planned it, life is still wonderful... The biggest difference is my eyes are opened and now I really see that life is mostly out of my control and all I can do is take the ride and enjoy the good parts and coast thru the bad, cause its all part of the ride.....

 

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    Page last updated: March 7, 2003


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