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Leeben: Limited Scleroderma and CREST

Should one open a bottle of champagne when diagnosed with a chronic disease?

Champagne for Leeben by Shelley Ensz I am fifty-three years old and a registered nurse (RN) who does medical research. I was finally diagnosed with limited scleroderma and CREST only two weeks ago. There is the possibility of diffuse scleroderma.

Should one open a bottle of champagne when diagnosed with a chronic disease? I feel I should because I am finally happy that someone has put a name to most of the symptoms that I have.

In 2002, I first noticed that my hair was falling out in chunks, and I have now been diagnosed with alopecia areata. I had aches and pains in all my joints, and changes in skin and sleep patterns. I began feeling out of sorts with the world, was extremely fatigued and had memory lapses.

The most frightening symptom was the fast heart rate (220). I landed up in the emergency room (ER) a couple of times. I went to see a cardiologist who requested a chest x-ray. Lo and behold! A shadow. Being an ex-smoker I immediately thought cancer. I ordered a CT and PET scan and spent a whole night on the internet, until it hit me that I had a rare form of lung cancer- carcinoid cancer. This is a neuroendocrine tumor that was secreting ACTH - cortisol. I had the upper lobe of my right lung removed but continued to have symptoms and complications.

Things got to be so bad that I had to leave my beloved job because I was falling asleep in the afternoon and had no energy. I looked so bad that finally my oncologist caved in and ordered a brain scan. Lo and behold, I had a tumor on my pituitary gland. In fact I do not have a gland any more and my sella is empty. I did a full endocrine work up. I won't go into how many doctors I had to visit before someone took me seriously; it was a total nightmare!

I have severe growth hormone, estrogen, and testosterone deficiency that makes my situation pretty bad. There was also one nodule on the thyroid. I also had Hashimoto's autoimmune antibodies. I insisted on a biopsy, which indicated cancer. My lymph nodes along my neck were all enlarged. All the doctors agreed that I should take out the thyroid first. So I went into the op where I had a traumatic forty-five-minute intubation and landed up in the ICU with problems breathing and paralyzed vocal cords. There was so much fibrosis (now I know due to scleroderma) that they could not remove the other lobe and cut the nerves. It has been the most devastating thing for me, since the loss of of my voice has caused social isolation and dependence.

By chance I was reading an article about a possible connection between autoimmune antibodies and cancer. I asked my oncologist to order an ANA, RF etc. He never refuses me anymore. Sure enough, positive ANA with anti-centromere antibodies, and a very high titer. Now all the doctors find me interesting and I do the research for them. I have to be really careful about the medicines that I take due to interactions and possibility of metastasis to my liver.

My gastric reflux is very bad, which has damaged my vocal cords and esophagus. I also have atypical hemangiomas in my liver.

I am now trying to make some sense of my life and am trying to deal with the pain and discomfort.

~ Update 04-22-06 ~

Since writing the first time, my disease has become progressively worse. I have increasing kidney damage which limits the kind of medications I can take. I am trying to keep my blood pressure under control. This scares me as I do not want to go to dialysis.

I was recently diagnosed with Barrett's esophagus with low-grade dysphagia. I cannot seem to control my acid reflux and bloated feeling no matter what I eat or do. These symptoms really bother me.

I now also have a tracheotomy (a hole in the neck to breath through.) It was emergency surgery and my scleroderma flared up so badly because of the stress. The fatigue is indescribable. This operation has increased my difficulty with swallowing and now the pulmonologist informs me that it will be impossible to perform pulmonary function (PFT) tests.

My legs and ankles are permanently swollen and the pain makes me feel like chopping my feet off sometimes. To add to my misery I have finally developed Raynaud's. I am really sensitive to the cold and air conditioning. I live in Phoenix, Arizona.

I try and do as much as I can. I try not to miss the meetings with the local support group.

I would love to hear how people cope with multiple diseases and how to stay positive. I know that attitude is everything.

To Contact the Author

Leeben
Email: [email protected]
Story edited 04-13-05
Story posted 04-18-05 SLE
Update edited 04-22-06 JTD
Update posted 04-22-06 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Antibodies
Cancer and Scleroderma
CREST
Difficult Diagnosis
Esophageal Involvement
Limited Scleroderma
Reflux
Types of Scleroderma
What is Scleroderma?
PDF Brochure: What is Scleroderma?

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 Lenor: Polymyositis, Pulmonary Fibrosis and Raynaud's Phenomenon
 
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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