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Michele: Surviving Daughter of CREST Patient

In Loving Memory of My Father

Sunset by Sherrill Knaggs, ISN Artist I have a story to tell that is very sad to me. I lost my father this summer on July 28, 2004, to a very rare and horrible disease. I have been having the worst time dealing with his loss and thought this might just help me, and possibly someone else, to tell his story.

My dad was diagnosed only four months prior to his death with CREST Syndrome.

He often suffered with puffy hands, pain, and joint stiffness. Just this past winter he had some breathing issues and had tests done. While he was going through all these tests and seeing specialists, they came to the conclusion that he had this rare but livable disease called CREST Syndrome. He was doing well and it was manageable. I got the impression that he did not think this disease was a big issue. He would often joke, laugh and make fun of his disease.

Then about one month after his diagnosis he ended up in the hospital with a bad case of pneumonia. It was now evident that the scleroderma from the CREST had started to affect his lung function. As before, my dad was able to handle all of this with a joke or two. I guess that is how he comforted himself through his very short but difficult journey with this disease.

Upon departing from his first hospital visit with this disease, he was ordered to use oxygen all the time, and to return for chemotherapy treatment. He was also given a prescription for steroids. Although he did not want to be seen with the oxygen, he did the best he could to use it. He did not use it all the time, but enough to sustain his oxygen at a normal level. Also, he seemed to do well with his chemotherapy and medications. However, he did lose a lot of weight and appeared to be weak at times but was able to hold down his coaching job that he loved so much.

About two months after his hospital stay he had his chemo again. This time it affected him badly. The treatments made him sick and the steroids kept him up nights with agitation. He seemed to suffer for about two weeks and then he was feeling better. Around the time he was feeling better he had testing done for lung function. I had gotten a message on my cell phone from my dad stating his results from the tests. On the message he was so happy that he cried that all was going well with him. I guess there was that scare that something may have gotten worse with him and he did not want me to know this. He seemed overjoyed and confident that this disease did not get the best of him and I was very happy.

About a week after he had gotten the test results he came down with shingles. The doctor treated the virus with antibiotics and stopped his steroids. Everyone, including myself, felt that the shingles was not a big deal. We figured it is nothing compared to what had been happening to him these past few months. My dad looked terrible and I knew in my gut that something was wrong. I did extensive research on the Internet as I have been doing regarding CREST syndrome and did not find anything that seemed bad about having shingles, so I did not worry about it.

A few days after he started treatments, my parents went upstate to my father's hometown of Brockport, New York, for a family reunion. My father, with shingles, drove about seven hundred miles upstate just to be there for this reunion. On the day of the reunion he talked to family and friends about death. Surprising to no one he spoke about his last wishes and thoughts, but surprising to everyone was that that night he went to the hospital with breathing problems. It seemed as if the scleroderma in the lungs was creating a problem again.

After two days in the hospital undergoing tests, there seemed to be nothing wrong except his lung function, which was excellent just two week prior, and possible problems with the shingles. On that day, I was notified that he was in the hospital and actually had the chance to speak to him. He reassured me that everything was okay and he was doing well. He wanted to know how we were doing, since we were seven hundred miles away from him, and he spoke with my three small children. I was hoping that would lift his spirits and I think it did. We ended our phone conversation with "I love you's" and said goodnight.

The next morning I got the call that he had gone into septic shock and was not doing well. I gathered our things and we all got in the car and drove up there as fast as we could. Upon our arrival I was unsure of what was taking place. I did not know that what I was about to be dealing with would be so difficult. I was hoping to get there and we all could cheer him up, especially his grandchildren, but that was not the case. As I walked in the quiet and dim lighted hospital room I was in shock to see my dad laying there lifeless! He was in an induced coma due to difficult breathing from a massive heart attack that occurred that morning. I just had no idea.

My brother and I stayed the night with him so our mother could get some rest. I watched, touched and felt nothing but lifeless sadness as he lay there in that bed. I knew it was bad when he started to burn with fever during the night and I knew I would have to accept whatever had to be.

The next morning we had to make some real difficult decisions regarding resuscitation and also letting him go. It seemed as if his systems started to shut down so quickly and my brother and I had decided to let him go quietly and peacefully. I did have problems with that and I still do now, but inside I know it was for the best. He suffered so much horror and then happiness and I think he knew he was dying inside. For my own selfish reasons I wanted to keep him alive and in my heart I knew that was wrong, so I had to let my daddy go.

I am actually going through a very rough time right now dealing with my dad's death and that is why I am writing this story. I want to try to help myself and if I could help someone in the process, then I know my dad has touched another life! He was so loved. I never knew how many others loved and appreciated my dad as much as I did.

My wish is that may all of you have all the success in fighting this horrifying disease. I do not know why things happen to us in this world but I am working on believing that things happen for a reason. Maybe my father's death has contributed to something or someone else who needs help, that is my prayer.

To Contact the Author

Email: Withheld by request
Story edited 09-11-04
Story posted 9-20-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
CREST Scleroderma
What is Scleroderma?
Survivor Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Michelle D: Limited Scleroderma and CREST

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)