Where do I start? Over the last year my mother has rapidly progressed in a downward direction from her progressive systemic scleroderma. She has her throat stretched on a regular basis due to the tightening of the esophagus. She has been in and out of the hospital.
January 2003 started off terrible. Mom had been admitted to the hospital for a bowel obstruction, a common occurrence for her. She ended up staying for nineteen days. During this time, yet another specialist came to see her, suggesting she undergo a surgical procedure where a tube is inserted into the bowel to drain the obstruction. She was all set to do this when she developed a blood clot in her leg, from her thigh right down to her toes, so to this day she takes blood-thinning medication. Needless to say, her surgery was put on hold.
Her diarrhea is excessive, going up to twenty-five or thirty or more times in twenty-four hours. With the diarrhea being so extreme, it has managed to actually drain the life out of her body and she went down to eighty pounds, give or take a few. She eventually could not walk down the hall to the bathroom any longer, which lead to her needing to wear diapers.
After many visits to the doctors it was suggested that it is time for total parenteral nutrition (TPN) which is a feeding tube. We all knew that eventually she would end up needing TPN, but the words were too scary and all of us associated the feeding tube as the beginning of the end.
My mom has always been an active, vibrant woman, full of life, but this terrible debilitating disease sucked all that from her. But it did not take away her spirit. Her low blood pressure leaves her with very little to no strength. Her skin basically hangs on her bones. She is fragile to say the least.
The last straw came six weeks ago. We all gathered at my parent's house as she was going to be admitted the next morning for the insertion of the feeding tube, as it was time. She could not even lift her head up from the couch to say hello to her four grandchildren. As it turns out she had been bleeding internally, likely from the esophagus. With all the violent vomiting associated with the bowel obstructions, the doctors figure that it scratched her esophagus.
In the hospital, she had a blood transfusion, and things seemed to be getting better. On Good Friday, we almost lost her. Her body was drained of her magnesium and calcium. They say she had fallen asleep, and likely she would not have woken up if my dad had not had the nurses call in a doctor. By the grace of God, the doctor picked up on the problem through some blood tests and she pulled through.
Then mom and dad (her main caregiver, her soul mate, her husband and my father) were taken in an air ambulance to Toronto General Hospital. She now has her TPN and she is home with us. It does not look scary, and it is not the beginning of the end; instead, it is a new beginning for her. She still faces the gastro-tube surgery as I mentioned earlier on, which perhaps will be done by the end of the summer. But one day at a time.
I remember my mom saying to me one night, "I am not going anywhere, I still have things to do." She was right. The team of doctors in Toronto have given us back our mother. She has gained an amazing twenty to twenty-five pounds, and still has a way to go, but at least she is here. Every day is a new day, a stronger day.
My mom is our hero, and my dad is our hero for taking such good care of her. She is only fifty-nine years young. She has many more years ahead of her.
This disease is a terrible, devastating disease, that has no boundaries. I love you mom.
New email address needed 08-06-09 SLE
Old Email Prefix: jktoneguzzi
Story posted 07-13-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Total Parenteral Nutrition (TPN)
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: