Gladys

Her doctor tried to get her to take Prozac to help her but we both decided against this. The fatigue continued throughout the summer and she began to lose weight. She also had stomach problems and her circulation in her hands became poor. Her family doctor mentioned "Raynaud’s." We read up on it and, because there was no alarm from the doctor, accepted it as a minor ailment.

Gladys went to see her sister in Toronto in September. Her sister was not expected to see Christmas and this was very stressful for her. Gladys continued to have stomach problems and felt tired all the time. On the third week of December, Gladys was out Christmas shopping when her family doctor called me at home. She demanded that I track down Gladys and get her to the hospital right away. Her blood test that she had earlier in the day was abnormal and they were afraid that she may take a heart attack.

She was admitted to the hospital and underwent several tests. This was the first time the word scleroderma was mentioned to us. Her doctor mentioned the diagnosis but said that Gladys would have to see a rheumatologist in Halifax to confirm this. Again, the alarm bells did not fully go up as our minds and hearts were with her sister who was critical in Toronto.

Gladys was released from the hospital on Dec.23 1995. Her sister passed away that evening from cancer. She was 39 years old. Because of Gladys’ ill health, her doctor would not permit her to travel from New Brunswick to Toronto to attend the funeral. To say the least, it was a trying time for us.

In Jan 1996, Gladys was again admitted to the hospital with abnormally high blood counts. This was when her doctor stepped up her efforts to have Gladys admitted to a larger hospital in Halifax.

On March 10, 1996, Gladys was admitted to the Queen Elizabeth hospital in Halifax. The doctors there quickly diagnosed her with scleroderma. She spent 2 weeks in Halifax and went through numerous tests. She was given medication for her circulation, for her stomach problem and steroids to fight the scleroderma.

Although we spoke to the doctor every day, not once were the deadly effects that this disease explained. We did read some on it and believed that we had plenty of time to fight this and everything would work out. We were wrong.

After returning home to the Miramichi, Gladys continued to feel bad. Her doctor stated it may be a side effect of the steroids. She spent one week in the hospital in Fredericton because of serious stomach problems but was released in late May feeling a bit better.

Our social life had taken a serious step backwards. Gladys loved to canoe and spend time outdoors but was not physically able to do this. She tried to keep up her hectic schedule with the two children and did so much on her own stubborness.

On June 24, 1998 Gladys asked me to take her to the doctor’s office for her appointment. I found this odd, as she always went alone before if I was working midnights, but she woke me up to take her. One look at her in the doctor’s office and her doctor put her in the intensive care ward of our local hospital. Gladys was taken by ambulance to Fredericton for an echocardiogram on the 27th of June. The results were that her heart was enlarged and was not pumping as it should be. She was rushed to Halifax on July 2, 1998.

Once there, she was placed in intensive care. Her heart was enlarged and her lungs were filling up with fluid. Numerous specialists saw her over the course of the first week. She was examined buy a transplant team for a possible heart and lung transplant but we were told that she was not a good candidate as there was no guarantee that the scleroderma would not attack the new organs. Doctors tried numerous medications and even tried chemotherapy to stop the progress of this disease in her heart and lungs. We were encouraged to bring our children down to see their mother, as things were very uncertain. Throughout all this, Gladys only worried about me and the children. Her big concern was to get better and return home to get our oldest ready for grade one .

After three weeks in the hospital, I cornered the doctors and asked for

a diagnosis. He stated that it was extremely rare for the heart and lungs to be effected in scleroderma cases and he was doing everything he could do to help. He said that Gladys could have three months to two years to live but he could not be certain. Throughout this her elderly parents were extremely upset as they had just lost their only other daughter the previous December.

When the doctors gave me the diagnosis, I was optimistic that Gladys would return home and lead a normal life again. I was wrong. On August 5, she became very weak and had difficulty breathing. Her parents had just left the day before for home feeling good about Gladys as she appeared to be feeling better during their visit. A visit from the doctor confirmed that she was critical and would only last a few more days if the new medication did not change. Her brother and I were the only family there and we decided that her mother could not take watching another daughter die, so we decided not to tell her. Gladys’ father was informed. On August 6, in the early hours of the morning, Gladys passed away. We were alone at the time, something we both wanted.

Gladys wanted an autopsy performed so that her death may be able to aid someone else with this terrible disease. It confirmed that both her lungs and her heart had been severely damaged by the hardening of the connective tissue.

At her wake, most people had never heard of scleroderma, much less understood it, so my sister and I insured that educational information was available to all who asked.

She was so much looking forward to seeing the movie about scleroderma "For Hope" that when it was aired in October of 1996 I lay on my couch watching and spoke silently to Gladys and to all who have died from this terrible disease.

This story is not meant to scare anyone who has scleroderma but is meant to open your eyes to what could happen. It is a tribute to a wonderful wife, mother, friend, and person who encouraged me to go on with my life and to make her children proud of her memory.

Kevin H. harek@nbnet.nb.ca

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