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May 5, 2019 Latest post:
May 21, 2020
Thank you for coming to my Caring Bridge site. I am overwhelmed with the care, concern, prayers, and love so many have shared as I journey through some serious medical problems. Sharon and I often have not been able to communicate regularly to everyone about my condition and treatments so I hope this website will be a way to keep you up-to-date with my progress.
Since November, I have been dealing with leg wounds that started from one small scratch on each leg. Due to a rare autoimmune condition called pyoderma gangrenosum (pyo·der·ma gan·gre·no·sum -(try saying that real fast). I saw my wound specialist, Dr. Dhillon, in mid-December and thought we were on the way to healing as I had with other slow-healing wounds in the past. Instead, while I was in Nebraska for holidays, the wounds (in the words of Dr. Dhillon) “blew-up”. Since then, we have had a number of twists and turns thinking they were getting better only to have them grow in size again.
Pyoderma gangrenosum is more common in people with autoimmune conditions and it may have been inadvertent exposure to gluten and my underlying celiac disease and a related skin condition called dermatitis herpetiformis (also gluten sensitive) that contributed to the worsening of the wounds. We will never know for sure but I must be especially careful about exposure to any gluten so am only eating food prepared in our own kitchen right now.
In January, I began 30 days of Hyperbaric Oxygen Therapy (HBO) at the Banner University Wound Clinic in Phoenix. After stopping HBO (yes, they really do call it “HBO”), for just a few days, the wounds flared again and I was back in the HBO treatment tubes for another 30 days.
On March 26, the wounds seemed to have quieted down and it was time for some surgery to remove tissue that wouldn’t grow again. A planned 2 or 3-day hospital stay turned into an 11 days rip (we did have a nice view of Camelback Mountain for much of the time). I came home able to ambulate with assistance and a walker. Our son, Chris, arrived from Hawaii and the wounds seemed to be improving. With a fancy new walker/transfer chair, I was able to walk with him part-way around our block. My sister-in-law, Sandy Johnson, also came to help during my stay in the hospital and made the return home easier for us.
Mid-April, the staples were removed and things were looking up only to have them turn around in a day or so with worsening of the wounds. With the help of a new surgical team headed by Dr. Sabeeh (a plastic surgeon) and a solid plan developed by him, Dr. Dhillon, Dr. Ackerman (my medical dermatologist), and Dr. Mengesha (my internist), I had surgery on April 25 to place an artificial skin-type product called Integra. The hospital stay was shorter and easier and I am home now with a long road of recovery ahead. Due to pain and the need to be very careful not to dislodge the Integra, my mobility is now very limited.
My medical care providers say my job is to keep my legs up and work on healing the wounds and not to work on mobility or regaining fitness levels right now. I have begun infusion therapy with a drug called Remicade to decrease the inflammation that causes the wounds to grow. It also depresses my immune system and makes me susceptible to serious infections so we are limiting visitors to a handful of family members and friends right now. I also have Home Health folks coming in for physical and occupational therapy.
I go to the wound center for dressing changes three times a week and we don’t usually know what they might find as the old dressings are removed, although my pain levels sometimes give us a clue. The last visit, the left leg was looking better and the right not so much.
As we regularly tell the doctors “We have hikes to go on and a trip to Hawaii to plan”. We are anxious to get through these challenges and on to what we really want to be doing. Check back for updates and I’ll try to share some stories about the adventures we are having along the way.