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Patients & Caregivers

Scott Inman

Scott Allen Inman passed away January 16, 2009, just shy of his 38th birthday. Born February 14, 1971, Scott was hospitalized with pneumonia when he was 18 months old. He required tubes to drain fluid from his chest and remained in the hospital for 20 days. This was the first of many long hospital stays throughout his life.

No doctors knew how to treat him so some just said he was faking it to get attention. One in Asheville, NC, said I was paranoid.

He was diagnosed with hydrocele and underwent surgery two times and was supposed to have another. “No!” I said, “not till we know why the fluid keeps coming, and from where.” The doctor said only that “sometimes these things just happen.” Scott also had big blue vessels and a large hand-sized lump on his left side. I finally got his doctor to send him to a vascular surgeon here in Asheville, who diagnosed Scot with varicose veins. When he couldn’t explain why a five-year-old child had varicose veins, I asked him what he thought about me taking him to Duke Hospital. “You might as well,” he said. “You’re not going to be happy till you find something terrible wrong with him.” I felt like he stabbed me with a knife.

Two weeks later we were in E.R. where a doctor we never saw before, and for whom I’m eternally grateful, had Scott in ambulance on his way to Duke University Medical Center after calling ahead for them to be prepared for a strange and unknown case. Of course in those days they had to treat him along cancer patient lines, though they knew it wasn’t cancer. Scott had Harrington rods put in and also had radiation treatments when he was 9 years old. Our wonderful Dr. Falletta kept Scott alive past his expected years.

Just like Jana he was small but in remission for about 10 years, from age 18 to 28. He got married and had a son, Michael—16 years old now, 6 feet, 4 inches tall and healthy—who loved his dad.

Trouble came in last two years of Scott’s life. Scott was lucky he had lots of support from family. I took care of him from beginning to end.

It was during this time that I met Jana Sheets, founder of the LGDA. I was so sorry to know another person had this horrible disease, but to speak to some one who said she knew how it felt when doctors and other people think I am imagining all the things I try to tell them are wrong, because this disease effects in some way so many parts of the body, was like a great burden lifted. At that time I knew it was too late for my son and everything that happened to Scott had happened to Jana at same age. I prayed she would not follow in death the same age but did right down to same month. I talked to Jana by phone and came right by the hospital when visiting my home in Clayton, but we somehow always missed each other. God’s handiwork; it would have made it even harder to lose her so close after Scott if I had met her in person.

We were able to keep Scott at home as he wished until the last two days when he could no longer swallow his pain medication. We moved him to Elizabeth House Hospice in Hendersonville. At the end he slipped away quietly.

I often wonder how different our lives would have been had he not had this horrible disease, but that is something I will never know. I do know he is at peace now and I will see him again in his new perfect body.

If I live long enough, I hope to write a book about this disease and how it takes over the lives of all family members and becomes the center of all lives in so many ways. I am going to write a story about our battle. I have so many records, most from Duke where they saved his life and treated us with respect and dignity. Scott never forgot any of you to the end and gave thanks to you and God for all the extra years he had, especially with his son. I thank you and God for being able to put a name to his disease and know some one out there knows my pain. We are going to help these new cases coming up. We know what we’re fighting now.

To families: never give up hope, even when it LOOKS hopeless, there’s a tomorrow.

God bless!

Patty Inman Chappell