My name is Donna and I am 24 years old. My mother, 43, was diagnosed with scleroderma in December of 1995. Her symptoms at first resembled what most doctors told her was tendonitis, but when things got so bad she couldn't work, she finally went to see a specialist. Things were not too bad after that.
She started medication and things were looking up. I tried to help her by trying to find out information for her but there was not a lot to find. Then in May 1996, my mother was not feeling well and went to the physician to see what was wrong. Once there they found her blood pressure to be dangerously close to stroke range and immediately transferred her to hospital in the city (we live in a small town just outside of Winnipeg) My mother was in that hospital till November 1996.
Over the course of her stay there were many times that the doctors discussed the use of respirators to keep her alive in the case of respiratory failure. Her blood pressure damaged her kidneys and she was put on dialysis 3-4 times a week. Because of her hardened arms, she had a central line put in. Then the demorol they were giving her for pain built up in her system and she started to, I guess you could say slip in and out of reality. She wouldn't even know who we were sometimes.
Then after the blood pressure plateaued and the drugs wore out of her system, she had yet another obstacle to overcome. Her esophagus and stomach were affected by the scleroderma. They started a nasal tube for feeding, but still the retching continued. In October 1996, they inserted a PEG,(I can't remember the exact name of it) in her intestine and started to use that for feeding. She came home November 1, 1996.
So far she has been doing all right. I go over to her house everyday and fill her flexitainer with her Nepro and connect all her tubing and set up her machine for her nightly feed. I take her blood pressure daily and drive her into Winnipeg for her doctor's appointments twice a week. It has been a long hard time on not only me but my entire family. We have all been there through the good days and the bad. I just wish there was more information out there for the people who have scleroderma and for the families of those people.
If any one has any information I would gladly appreciate it.
UPDATE: 3/8/97
I just thought that I would send in an update on my mother's condition. Since she has been out of the hospital, she has progressed well. Last week, I took her in to have her PEG removed and next week she goes in to have her central line removed. Since her release from the hospital, her skin has softened somewhat and they can now take blood from her arms again. She is always on the go, you can never get a hold of her at home anymore. I am happy for her. She has come a long way from how she was in the hospital. She is doing a miraculous job at recoving so far. It really makes you believe that there is hope.
I would like to thank all those people who took the time to write with the great words of encouragement during this ordeal. Thank you from my family.
My address is: sklassen@mb.sympatico.ca
Thanks for listening.
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