Kelli's dad

"No one knows how painful it was to watch a healthy and active man be brought down to nothing."

Hello everyone , My name is Kelli Schoolcraft. My Father had scleroderma. He died Jan 8 1998. One year ago he was an active (very active) 70 year old man. My husband was his best friend and they rode in the woods every weekend . He had buddies he four-wheeled with 3 and 4 times a week. This man was like a 35 year old person with tons of energy. Then about a year ago he started getting short of breath - not a lot, just every now and then. He also had ulcers on
the ends of his fingers. The pain at night was almost unbearable. They were also tight and blue looking. He went to his family doctor and she sent him to a dermatologist - he didn't have a clue to what was wrong with Dad's fingers. He was then sent to a rheumatologist, where they told him he had scleroderma.

We had no idea what scleroderma was but was soon to find out. By now his breathing was getting worse, still the doctors didn't know why. He was then sent to a cardiologist , who told him he had a minor blockage and need angioplasty. During the surgery they tried to put a stint in his artery and lost the stint . The doctors had to work feverishly to try to retrieve the stint - they finally got it. After they sent him home the breathing kept getting worse, so as it turns out the heart blockage wasn't making his breathing bad, it was the scleroderma. Soon after the heart surgery he developed shingles, once again even more pain ( he suffered terribly with the shingles.) So now he is told he needs to go to a pulmonologist,. That's when he was given the death sentence. The doctor told him his lungs were shot and he needed to go home and get everything in order. He came home and sold his car, his fourwheeler (which he dearly loved ) and gave his 4-wheel drive to my husband. No one knows how painful it was to watch a healthy and active man be brought down to nothing.

The doctor recommended he go to Pittsburgh Hospital to see if they could help him. By then he was getting dizzy and passing out, his blood pressure was low, he couldn't breathe...everything was going down hill. Our
hopes for Pittsburgh were high. We really thought they could do something doctors in Charleston hadn't thought of. My husband of 15 years went with him and was prepared to stay as long as it took .

Our hopes were dashed when in two days after extensive testing they told us he wasn't a good candidate for any procedure. Half his heart was completely dead, his lungs were too bad and he just couldn't stand any surgery. He came back and bought a motorized wheelchair that allowed him to get from room to room. My brother and I had to start taking shifts and staying with my dad and mom. He couldn't be left alone and she wasn't able to wait on him. She had smoked for 50 years and couldn't breathe herself. By now I'm staying with them most of the time and it's getting close to Christmas (what a Christmas.) My mom dies Dec 22 ,
1997 and my dad dies Jan 8 , 1998.

I've lost both of the most important people in my life so quickly I still can't believe they're gone. I hope and pray someone somewhere will find a cure for this awful disease. It has torn my heart out and because of it I will never be the same. Please don't give up out there. I know it's hard but hope is everything and I pray that they will find a cure or even a treatment for this terrible thing they call scleroderma. If you need to talk or ask questions please feel free to e-mail me. Your friend, Kelli

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