I wish I had a story to contribute that had a happy ending - I am writing just to let people know how wonderful this page is - and I know that if my family was aware of it, my mother would have received the kind of care and support that would have extended her life.......and helped us to deal with her disease. My mother, Dolores, was diagnosed with CREST syn- drome after many, many visits to the doctor with varied symptoms (cold, blue hands, shortness of breath, difficulty in swallowing, etc., etc., etc.) She was diagnosed at age 65.
Other than these symptoms, my mother was an active, happy wife and mother of 6 grown children (she and my dad lived in an in-law apartment on my home.....and they contributed greatly to the lives of myself, my husband and
our 7 children). When my dad passed away unexpectedly 2 1/2 years ago, my
mother had a very difficult time.......but fought through it, started working at our local library, and was healthy and active.
When my mother was diagnosed with this disease, we did some research at the library, and found very little information. We asked the doctor what we thought were all the right questions - and what we were looking for of course
was a prognosis. We received very little information from the doctor - and
were basically told that it was a progressive disease and that we should not even worry until the synptoms worsened! She went through intermittent periods where she was on medication for "burning stomach", had her esophugus stretched, etc. - but never was admitted to a hospital!
In May of 1997, my mother began to lose weight, and had frequent diarhea. The doctor told her it was probably due to greiving after my fathers death. Her
symptoms continued......and the doctor prescribed medication for the diarhea.
In the meantime, she developed extreme dryness in her mouth, terrible itching all over, and heartburn (she had 3 or 4 esophageal stretches previously). The doctor kept trying different medications - and the sad thing is, he never prepared us for what was going on. In November of 1997, we insisted that she see a specialist in this disease (of course, insurance restricts how this is
done) - she was referred to a Rheumatologist. My mother was feeling somewhat better at the time of her visit - and her main question was "what is my prognosis, and what should I expect to
face?" The doctor's answer was that my
mother was far from being in any danger at the time, and that as long as her
kidneys were functioning, etc., she had nothing to be concerned about. He told
her to schedule a pulmonary function test, as she was having shortness of
breath. Three weeks later, she was at work and experienced what she thought
was a little stroke - she was brought to the emergency room.......where the
doctor confirmed that he thought she had a TIA......and until we fought with
him, he was going to send her home with asprin, and gloves for her reynauds!!
She was finally admitted, and we insisted that we get answers to why she
continued to have a burning sensation in her stomach, diarhea, shortness of
breath, inability to eat without becoming nauseous. We overheard a nurse tell another nurse that we were "pains in the neck". To make an agonizing story a little shorter.......my mother spent 2 weeks at this local hospital. She was discharged far sicker than she was on admission. She could hardly walk, couldn't eat.......and we had no answers - we were told to wait until all the test results were in. In the 2 days that she was home, I made several calls
to her doctor, as my mother had lost 10 pounds, and was so weak she couldn't
get up.

In total frustration we finally got the name of a wonderful specialist at Tufts NEMC (a friend of a friend knew an 80 year old woman who raved about the doctor who treated her for the same disease) - we called this "stranger" who was so kind and concerned - he

 confirmed that it wasn't an "over-reactive family", that my mother was gravely ill. We immediately brought her to NEMC. Upon admission, her creatin level was dangerously off, she was dehydrated, her
blood pressure was unstable, etc. The staff at NEMC involved us in every
aspect of her care, did numerous tests, etc., My mother was in kidney failure,
and started on dyalisis. She had a severe bowel infection that would not improve no matter what the doctors did. This disease effected her brain as well, as she became seriously confused. We spent 4 weeks, day and night, with her and watched her change from a healthy smiling mother and grandmother to a
confused, frail old woman. My mother died with my son and myself at her side
on January 30, 1998.
I know this story sounds convuluted and not very organized - and yes, we are
all still feeling angry and are in disbelief......but I truly believe that if
we were provided with answers and support in the beginning of my mother's
disease, that the outcome would be different. Maybe she would have lived
longer, or at least we would have been a bit more prepared. I think if we
have anything to give to other patients it's just to let them know how crucial
it is to have a physician that understands the disease. Just don't accept one
or two opinions....and be aggressive in your search for help and support.
Most of all God bless you all.

Thanks for listening.........Judi

My e-mail is Scarps9@aol.com

Return to tribute page

copyright 1998 A. Yaussy