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Kathy R: Localized Scleroderma

Where does it start and where does it go after that? Does it ever end?

Flowers for Kathy by Sherrill Knaggs, ISN Artist I really do not know where to start with this. I am fifty-eight years young. I am a mother of three and grandmother of five, soon to be six. I live in Wisconsin and have all my life. I have been through a lot of things and really do not know the connection to any of them.

I was diagnosed with Localized Scleroderma when I was six months pregnant with my son in 1965. It started at the time with blotches on my right arm. After the delivery in December, I discovered that all the symptoms went directly to my left arm and continued to stay on that side of my body. Then it spread in clusters to my right leg, my stomach, and under both arms near my breasts.

Over the years a lot of it has cleared up, except my left arm looks like it belongs on a different person's body. I have no muscle form, per se, to it. I am limited in doing exercise as compared to my right arm. My fingers were really stiff, but after treatment by my chiropractor of manipulations to the back and hand in 1966-1967, this condition improved a lot.

I have lived with it as it is for many years and just dealt with it. I went through a lot of traumatic events in my life and moved on. I started getting really sick and weak in 1993-1994 and after a lot of intensive testing, I was found to have celiac disease. That meant eliminating wheat, rye, oats and barley from my diet. That was quite a challenge, but I found I did feel better when I changed my diet.

Then around 1998 through 2001, I became really ill again. I reached the point where I could not work anymore in 2000. I went on disability. Again I had a lot of testing by numerous doctors. My doctor who had diagnosed me with celiac disease, finally found that my liver was damaged to the point that the only thing that would save me would be a liver transplant. She introduced me to the University of Wisconsin Transplant Department. I went through intensive testing again to make sure that I was healthy enough to be deserving of a transplant. Thanks to God, I was, but had to wait like everyone else.

My health got so bad that I was admitted to the hospital because my significant other could not deal with me any longer. I do not even remember all of the year 2000. The doctors told him at that point that I would never go home. But thanks to a miracle, I received a new liver from a wonderful person named Stephen. I was in surgery for seventeen hours. It took a long time for recovery. I spent some time in a nursing home to learn how to walk again.

I am going to celebrate my new life on November 02, 2002. It will be two wonderful years. I am so happy to be alive and living so well. But there are still so many unanswered questions for me. My doctors are telling me that scleroderma is no longer a problem for me. I just would like to have some answers as to what brought up all of the conditions that I have dealt with most of my life. No one else in my family has had these things.

The transplant team said the reason for my liver being damaged is something they will probably never know for sure. I would just like to know if scleroderma, which I started with originally, has been a part of this or does it just go away? I have an appointment with my transplant team next week so I hope to ask them a lot of questions again. I want some answers but I also want the doctors to come up with something soon to help so many of us who are dealing with the problems of scleroderma.

Where does it start and where does it go after that? Does it ever end?

~Update 11-11-02~

When I sent my original story, I had made an appointment to see my transplant team at the University of Wisconsin. I had that appointment and had to undergo a deep doppler ultrasound and liver biopsy last Friday. It was discovered that I am going through a mild liver rejection due to my immune system getting screwed up.

Naturally, I wondered what had done wrong. My wonderful doctor reassured me that I have been doing everything right. It's just something that can happen with my weakened immune system. So I have been put on mega doses of steroids for three days and will taper down after that. I had been off that dreaded drug for over a year now and was feeling so great. But here I go again, flying higher than a kite. I feel like a cat on a hot tin roof. The side effects to this medicine are not pleasant, but you gotta do what you gotta do.

I never want to go through a transplant again, if I were to reject this one that I was blessed to receive in 2000. I also do not know if I would get the opportunity again since there are so many others on the waiting list now.

But anyway, I did not get an opportunity to really talk to my doctor about the scleroderma, celiac disease or other immune problems. I really want to know what the connection to all of this is. No one has ever connected any of these diseases to my satisfaction.

After I get through with this rejection episode, and I will, I need to find someone who will sit with me and really let me know what is going on with my body. I know I probably won't be able to change any of it, but I would like to know if any of this will be passed on to my children or darling grandchildren, and if there is anything that I personally can do to help them with advice in advance.

I have a sister with multiple sclerosis (MS) so there is a immune problem in the family, along with my mother who passed away in 1992, with a lot of the same symptoms that I have now with the gluten. Her doctors never told her about anything either.

I have an appointment with the transplant doctors again soon and I hope to get some serious advice from them, or hopefully they can suggest someone that can help me further.

I pray for all who are going through any of these problems. We all just want answers.

To Contact the Author

Kathy R.
Email: [email protected]
Story posted 11-12-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Disability
Liver
Localized Scleroderma
Morphea Scleroderma
Multiple Sclerosis (MS)
Pregnancy and Scleroderma
Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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