My SJS Experience, by Don Smith

Don Smith October 13, 2003, I underwent a tonsillectomy and biopsies in other areas on the left side of my throat, due to a lump that was found by my primary care physician. It was diagnosed as cancer and surgery was performed to remove the infected lymph nodes and some muscle on the left side of my neck, on October 27. On December 8, I started radiation treatments on my throat.

On January 21, I went for my thirtieth of thirty-three radiation treatments, but the doctor told me that I needed to check into the hospital, instead. She took me to the Emergency Room, to be admitted and they took vital signs. Suddenly, I was put on oxygen and told that I had to be sent to another local hospital, because they weren't equipped to handle my needs.

On the fifteen minute ambulance ride, I tried to get the paramedic to have the driver turn on the lights and siren, to make the ride more exciting, but she wouldn't do it. At the same time, my girlfriend, Heather, and my primary care doctor were being called and told that I probably wouldn't live through the night.

I recall being taken into my room and IV's started. The next thing I was aware of was that, when I woke up, I was very weak and I was taken for a bath and dressing change. For the next couple of days, I wondered why everyone kept saying, "You look great," whenever they saw me. There was a mirror in the room and I saw some of the damage that had been done to my skin from my face to my legs, by Steven-Johnson Syndrome. I didn't look great, at all.. When one of the doctors mentioned how much better I looked than when he had seen me nine days before. I remind him that I'd only been there less than a week.. When I mentioned this to Heather, she told me that this was my second week in the hospital. Even now, I have no memory of the first week, whatsoever. The nurses said it was due to some of the medications I'd been given, during the first week.

I was in the hospital for fifteen days and was discharged only because Heather, who lives over three hundred miles away. had arranged to stay in Grand Rapids to take care of me, for the first two weeks. Arrangements had been made to have the food for my feeding tube, the pump and other supplies delivered the evening that I came home. The nurse instructed Heather in handling all of that because I wasn't alert enough to follow her instructions...or to do it, at that time. Heather took very good care of me during the time she was here and made sure I understood how to handle everything before she left. I didn't realize how much help she'd actually been, until I had to do everything for myself. It wasn't until that two weeks that Heather was with me, that I understood everything I'd gone through. She told me of the phone call from the doctor, and how she'd called the Burn Center before I even arrived. I was most impressed with their treatment of Heather because she had called every hour on the hour, during that first night and day and they, in her words, were, "Wonderful with me."

After the first couple of hours, they told her that there was no reason for her to rush over, so she could take care of obligations at home, before coming to Michigan. Whenever she called, if they hadn't seen me recently, they'd check on me, and let her know how I was doing. They even gave the 800 number, to the desk, so that she didn't have to pay long distance charges. When I went back for a follow up appointment, I was greeted warmly by all of the staff who saw me come in. Those who hadn't seen me arrive, dropped by the examination room to see how I was doing and to say, "Hello." It was the same extra caring and concern that I'd received as a patient, in their care.

Realizing that they had literally brought me from Death's Door, to recovering as well as I had been, I wanted to show my gratitude in a way that acknowledged them forever. On March 29, I dedicated one of my favorite paintings, "Incongruity," to the Burn Center staff who had treated me.

The dedication statement reads: "This painting is dedicated to the wonderful staff of the Spectrum Health Regional Burn Center in appreciation for the highly professional care that Mr. Smith received during two weeks in January and February of 2004. “Even after discharge, during follow up visits, their care and concern were still evident. They are truly exceptional,” said Mr. Smith." The dedication, on March 29, was one of the most meaningful events of my life. None of the staff knew that I'm an artist and that was brought up to me, very pointedly, by a couple of them. A printout of the painting had been posted on the bulletin board and the colors were way off, besides being too dark. They were very happy with the actual painting. A room is being remodeled, as a Burn Center pediatric waiting room and the painting will hang there. I was told that the interior designers had been stumped as to what colors to use and were very excited about the colors in the painting. Perhaps that will be the color scheme of the room. The painting will fit, perfectly, I was told, because it will appeal to children and adults, alike. I'd expected everyone to rush back to work, immediately after the presentation of the painting but there were cakes and coffee, afterward. Again, they were showing that flair for giving extra caring attention, when it wasn't required. We spent some time, chatting and snacking, although I couldn't have any, because I'm still on a feeding tube. There are some in the freezer, to enjoy when I can eat normally. When I left, it was a very satisfying feeling, knowing that the people who probably saved my life, will never forget me, either