LIVING WITH LUPUS | Irene
Story by Irene
In my childhood years, I had a lot of infections and pain but answers were seemingly unavailable when my parents took me to the doctor. When I was 18 years old, a new symptom appeared, bruising all over my body with no accompanying injuries to explain how the bruises began. My doctor referred me to a haematologist and I was immediately admitted to the hospital. After a battery of tests, I was diagnosed with leukemia. This was back in 1971 and lupus was still a veritably unknown disease. After six months of various treatments, my blood tests were not showing any improvement. The next seven years, was an ongoing saga of specialists, tests and hospitalization.
Finally in 1978, I was referred to a rheumatologist specializing in autoimmune diseases. This rheumatologist ordered special blood tests that required forwarding to the United States for culturing. It was at the next appointment, a few weeks later, that I finally received the diagnosis of lupus. I felt a tremendous relief with finally having a name for what was causing all my problems. I was told that my life expectancy would be about 30 years of age. Any information obtained through my personal research indicated this disease was fatal. My rheumatologist started my treatments with large doses of Solu-Medrol intravenously introduced to my blood stream. This procedure was called ‘pulse therapy’. The ‘pulse’ treatments meant going to the hospital every two days and the therapy lasted 2-3 hours. It did improve the ‘severe flares’ that I had been experiencing every couple of months. The rheumatologist also prescribed an anti-malaria medication called Plaquenil in an effort to control the amount and severity of my flares. Each time I had a severe flare it affected another organ of my body and the symptoms were always so different.
At this period in my life I was trying to work full-time and raise our young son. There were many days I wasn’t sure if this disease was in fact not going to ultimately win this battle. In the early 1980’s, the lupus was attacking my liver and heart. In 1984, I was hospitalized and scheduled for a liver biopsy. This should have been a routine procedure but as many lupus patients are aware, some routine procedures are a rarity when dealing with “The Disease of a Thousand Faces”. Complications after the biopsy caused the abdominal cavity to fill with bile. Lloyd, my husband stayed with me day and night, sleeping on a chair at my bedside. After the third day, I was experiencing severe pain and tightness in my chest. After notifying the nurse of these symptoms, there were many doctors called in. Throughout the night, I was slipping in and out of consciousness and at times starting to see the ‘bright light’. Lloyd was told to call in the family. My heart was racing at what seemed to all an uncontrollable rate (in excess of 250 beats per minute). Because of the trauma to my heart, they were unable to give me any anaesthetic for this next procedure. They first had to make a cut in my left shoulder area, insert a tube directly into the heart and pump large amounts of liquids to try and convert the heart rate, even when they had successfully converted the heart they still considered my status to be too unstable to administer any anaesthetic or even pain control medication.
During this time my stomach cavity had increased in size by over 4 inches, this meant that there was a desperate need to drain off the bile that was invading my body. They made an incision on each side of my belly and immediately drained off seven litres of bile. They then inserted tubes into the incisions on my abdomen leaving a mechanism in place to continue to flush and drain the abdominal cavity while the liver healed over. After two weeks in observation, I was finally able to come home. As my body was in an extreme state of exhaustion, I had many severe flares over the next few years. The liver had been permanently damaged, but the doctors still felt that the heart was fine.
I continued on with the conviction that if I did more and stayed active, I would then be taking charge of the disease, rather than the disease taking charge of me. Once I passed my 30th birthday, I was sure the severe battle had been won. I made a pact with God, ‘if I lived a very disciplined healthy life style, he would aid me in continuing to take control of my own life and thereby my future’.
In the early 1990’s, I was asked to take part in a research study for autoimmune diseases. After a number of months on new medications, I was finally able to get a good night’s sleep. Life improved and I was able to return to work and even take on a management position. For numerous years, I managed with the ‘flares’. In 1995 my body was traumatized with the loss of my father. Again the disease took over and I finally had to quit my job. Luckily God had given me my first grandchild in December 1994. I realized how special this new life was to me. I had a strong desire to want to see him grow up. Soon two more grandchildren arrived and they helped me to learn to enjoy my ‘retirement’. We explained that Grandma had ‘little muscles’ and therefore not able to lift them, they were so wonderful and understanding as they crawled onto my lap with just a steadying hand rather than a bold lift from the floor.
In 2004, my heart started showing problems. In 2006 I needed to go to a Calgary hospital and under go a procedure called ‘electric heart ablation’. The ablation was very successful. So I have learnt over the years, never take life for granted and enjoy the ‘special things’ in life, the love and support of family and friends.
I am now able to put some of my energy into helping other people with lupus. Over the last ten years, I have seen the research for lupus growing and more hope for earlier diagnoses. The future continues to hold new promise and the day is coming when we will know “the cure for Lupus”. God Bless all who read this.