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Sharon

My name is Sharon. I was born in 1954.

In April 1996 I had surgery to remove a lump in my parotid gland. I noticed the lump there three years prior and it was slowly getting bigger. It turned out to be a maltoma (a Non-Hodgkins Lymphoma). Subsequent blood tests revealed that I have a Positive ANA ( Anti-Nuclear Antibodies). I was sent to an oncologist. I decided against treatment as I was told the radiation therapy would cause me to lose my teeth on that side and there was a possibility that the chemotherapy, could cause other problems in the future. My surgeon was sure he had gotten it all, so I decided to wait and see.

I have a checkup every six months and so far, so good. Then I went to a Rheumatologist. Eventually I was diagnosed with Secondary Sjogrens Syndrome and Raynauds. He told me to come back when I had any symptoms as it was a chronic, incurable autoimmune disease, and there was nothing he could do until I got worse. I did not like his attitude and did not go back. I was devastated, I had a disease I could not spell and nobody had ever heard of.
My girlfriend , who is a nurse, was and is a great support. We hit the medical library at the university and got a lot of information. Meanwhile my mouth was getting drier . I cannot swallow a mouthful of food without a mouthful of water or I choke. If I try to talk for long without sipping water, my tongue sticks to my teeth and the roof of my mouth. Bottled water has become my closest friend: I don't go anywhere without it.

My teeth are a big concern , as the lack of saliva causes decay and deterioration. I have an extreme fear of dentists , I can cope with everything else except going to the dentist. However I face that fear every 6 months , as I know it will be worse if I don’t go.
My nose dried up, as did my vagina and my tears. I started getting dry eyes and I have trouble focusing, even with my glasses. I now use eye drops 2 – 3 times a day and see an ophthalmologist annually.

Towards the end of 1999 I started to feel very fatigued and needed to sleep in the afternoon. My arms and legs had a dull ache. I noticed small red spots appearing on my fingers. I requested an appointment with another Rheumatologist, one who was more compassionate. I attend Freemasons Hospital in East Melb. She is wonderful! In Feb. 2000 I had my first visit. I underwent extensive testing . The results were that I have Limited Scleroderma (CREST.) CREST is a form of Systemic Sclerosis (Scleroderma) which is characterized by
Calcinosis : (calcium deposits) usually in the fingers . (which I don’t have.)
Raynaud's: Raynauds is an extreme spasm of blood vessels in response to cold or stress. The fingers and/or toes become white and/or blue, and may become red on re-warming.
Esophageal Dysfunction: Loss of muscle control of the Esophagus ,which can cause difficulty swallowing;
Sclerodactyly: a tapering deformity of the bones of the fingers; ( which I don’t have )
Telangiectasia: small red spots on the skin of the fingers, face, or inside of the mouth.

In April 2001 I had a gastroscopy as the heartburn was getting worse. That revealed that I had Long Segment Barrett's esophagus, a pre-malignant condition of the esophagus, the tube that carries food from the mouth to the stomach , and two ulcers. I was started on Prilosec which I consider a miracle drug. After over 5 years of dreadful heartburn, within a 2 weeks I was almost pain free. Within a month I was able to eat bananas and tomatoes, and drink the odd glass of red wine again. And was sleeping much better.

In May 2001 I had an attack of terrible chest pain, so I had an ultrasound which revealed one large mobile gallstone . The following week I was in the hospital and had my gallbladder removed , I spent four days in hospital. During the next 6 weeks post-op, I had niggling pains and discomfort. Then one morning I woke up in agony, with pain like I have never experienced in my life. I was taken by ambulance to intensive care, where subsequent tests revealed I had either a small stone in the bile duct or bile duct spasms.

The following day I had an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure in theatre, where the gastroenterologist performed a Sphincterotomy. Within 24 hours of the procedure the pain increased rapidly, and I was diagnosed with acute Pancreatitis as a complication of having an ERCP. I spent 10 days in hospital on Pethadine and ice only. It took a month for my liver function tests to return to normal. I made a complete recovery ,and regained the 7 kilos I lost !

In September 2001( 3 weeks before our eldest son’s Wedding, ) as a routine test prior to my six-month check up with my Rheumatologist, I had a heart echocardiogram and lung function test. Unfortunately it revealed that I now have Secondary Pulmonary Hypertension (PH). I wonder just how much more I can handle. PH is high blood pressure in the pulmonary artery which takes blood between the heart and lungs. It can be caused by Scleroderma and also by other diseases. Initially there may be no symptoms at all. Later, symptoms include shortness of breath, weakness, and fatigue with exertion. As it progresses, patients become very tired after only slight activity. Eventually, patients experience right-sided heart failure and death. However, the course of mild to moderate PH in scleroderma patients is still unknown, and its possible that it may persist unchanged for long periods of time.

Apparently the scleroderma has shrunk the vessels between my heart and lungs, so my heart has to work much harder to get the blood across to my lungs so I can get enough oxygen. I have been short of breath and very tired and sometimes feel like someone is sitting on my chest, but I just thought it was because I am overweight and have autoimmune disease.
I am under the care of some extremely dedicated health care professionals whom I trust and respect . Every 6 months I have routine tests and scans, etc. It is important to me to be able to make choices regarding my treatment and to be well educated about the diseases I have.

I have a very loving and compassionate husband . I know I am lucky to be surrounded by a very supportive network of family and friends. I enjoy painting , going to art classes , “doing lunch” with friends , romantic weekends away , and spending time with the family including our granddaughter, and our little dog “Tess.”

I do not know what the future holds for me, but I know with all the loving support I receive, I won’t have to face it alone.
In the meantime my Motto is : “When the going gets tough, the tough eat chocolate.”

Information on the above disease’s can be found at
The Scleroderma Foundation of Victoria
St. Vincent’s Hospital
41 Victoria parade
Fitzroy Victoria
03 92883651

Sharon - bertsha@tpg.com.au