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Marilyn: Diffuse Scleroderma

I had known for several years something was wrong — I just could not convince anyone else of it.

Flowers from Gene by Shelley Ensz When I was diagnosed with diffuse scleroderma two and a half years ago, it was no surprise at all. I had known for several years something was wrong — I just could not convince anyone else of it, until one day at work, when my coworkers noticed that while sitting having coffee, I was very short of breath.

As a nurse, you would think I would have picked up on this myself. At the time, I also had a very sore back and could not remember injuring it. I was sent off the ward and instructed to have blood work done to find out what was going on.

At this point, I had severe heartburn, shortness of breath, severe diarrhea, and many little things going on. My blood showed a positive ANA titre. From there I had several other tests done: bone scan; MRI of the head, neck, and stomach; CAT scan. You name it, and I had it done. When everything came back, I was told I had scleroderma, the bad kind.

My heart, lungs, and kidneys were involved. I had reflux and managed to aspirate, which put me back in the hospital once again. At this time, I was told there was not much they could do for me. I was forty-one years old and that was probably as far as I was going. I took this lightly and was not going to lie back and die. I fought them the whole way. I started having trouble with my breathing; every time I laid down, I would lose my breath. It felt as if a flap was closing over and I had a very difficult time getting my breath back. I was sent to a sleep disorders doctor, who discovered I have severe sleep apnea, which could not be controlled with a continuous positive airway pressure (CPAP) monitor. I had a tracheostomy because the damage that was being done was irreversible and causing brain damage. Since my tracheostomy, I feel like a new person. My skin has softened somewhat. I still have reflux, but not as severe. I feel like I have recaptured ten years.

I have stuck faithfully to the medication the doctors have prescribed. Things are looking up right now! Presently, I have six doctors looking after me: a rheumatologist, respirologist, gastroenterologist, sleep disorders doctor, trachea surgeon, and a gynecologist, along with my family doctor. They all stay in touch with each other and discuss any changes made as a team. Things are great again. I can even remember things that happened last week, last month, and even some things that happened last year. It is great!

I have been doing a lot of searching on the Internet trying to find more information on this and I am finding this website very informative.

~ Update - December 2000 ~

Recently, I agreed to take an antidepressant medication and things are even better than they were before. Finally, I am able to get some weight off and I can see a real difference. My skin is not tight and bound down as it was. It is actually becoming movable, more pliable! My stomach problems continue to bother me, but they are under control with medication. I have not aspirated in months. This is unbelievable. I continue to feel better since my tracheostomy. It seems to be doing its job. I am breathing much easier and able to sleep at night, something I have not done for years. All in all, the improvements are outstanding!

I would really like to talk with people who have scleroderma, but particularly those who have diffuse scleroderma. I am from Canada and I have been working with the Arthritis Society trying to find a support group, but our very large town does not offer much.

~ Update - January 2002 ~

A lot has happened since I last updated this story. I continue to have problems with aspirating. In September 2001, I had a G-J (gastrostomyjejunostomy) tube inserted into my stomach. This was done because the motility in my stomach is poor and foods were not digesting. I was having difficulty with swallowing, choking, and aspirating on everything. I had my throat stretched several times, yet I continued to choke. Since I have had the tube, my stomach feels much better. I am not having as much discomfort and things are looking better once again.

I still have the tracheostomy. I was hoping this would only be temporary, but I guess I was wrong about that. I am still having problems with shortness of breath. Right now, my biggest problem is water retention. But I should not really complain about it, because I feel too good to complain.

Take care and do not give up the fight. There is always a brighter tomorrow, if you want it!

~ Update May 2004 ~

I still have a lot of things going on. I had a tracheotomy done because I was having a hard time sleeping and the lack of oxygen going to my brain was causing severe brain damage. I have had the trachea for three years now and it plays a big part in my life. I am on oxygen all the time. I get very short of breath on minimal exertion. My oxygen saturation level drops drastically without the oxygen.

I have a difficult time with fluid retention and take high levels of diuretics. When my fluid levels are up I also become more short of breath. So I am constantly trying to keep myself from getting too short of breath.

My feeding tube had to be removed a year ago because of a massive infection in my stomach, but I am having it replaced tomorrow, so I will be resuming my feedings also. I managed to have the feeding tube out for one year but the doctors think it is time to put it back in. I have been having a lot of reflux and have been aspirating into my lungs, which is very dangerous also.

Now for the good things. My skin has loosened up a lot. It is still dry and tough but it is more pliable than it has been for a very long time, and I do not feel like I am trapped inside of my skin anymore. I am still on a long list of medications but I seem to be holding my own right now.

Every day is a new day and we have to work with that in mind. There are ups and downs, but we have to keep on moving on.

To Contact the Author

[email protected]
Story posted 4-21-00
Update posted 12-9-00
Update posted 1-28-02
Story Edited 7-30-03 JTD/V1
Update posted 5-4-04 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
ANA titre
Aspiration Pneumonia
Canadian Scleroderma Support
Diffuse Scleroderma
Feeding Tube
Pulmonary Fibrosis: Oxygen
Skin Fibrosis

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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!

Go to Marina: Diffuse Scleroderma

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