Life with Mikey, 2

Short story

Kathy did it again. Her determination to understand, her insistence on getting data vital to making informed decisions, and her fearlessness at asking questions, resulted in Dr. O.

We are very happy to have found Dr. John Olerud at UW Medicine. Much more aggressive approach to treatment. I’m feeling better and Kathy says the sores on my back are responding.

Long story

Appointment was Tuesday 03Jan. It was the first day of winter quarter, and one of the folks in that small exam room was a first-day student. Two were internists — one rotating out and one rotating in. A dermatologist who was about to fly. Dr. O. And me and Kathy.

One advantage of being in a teaching hospital: Dr. O. was teaching, and we were included as “students” (we just weren’t asked to answer “what would you do” type questions). He was patient, kind, knowledgeable, thorough. We were physically in his presence for ~90 minutes.

We’ll be seeing him every two weeks for the indefinite future, which includes blood work. Bumped Prednisone again (now 120 mg) and have added Mycophenolate. The goal is to be able to decrease P and increase M after treatment stops creation of new sores. If M doesn’t work, there’s Rituximab. Or prednisone infusion (sounds like “chemo” but the drug is prednisone). He has other patients in remission; we didn’t ask how many cases he has seen.

Existing sores on the torso are visibly reduced; sores on face/mouth, not so much. Some tiny pinpricks are now bumps, but the number of new pinpricks (tiny red dot) is greatly reduced and the bump development is slow. Chewing is still a challenge, but pureed Five Guys hamburger tastes like a Five Guys hamburger. 🙂

To say I’m feeling better doesn’t do justice to the *wake* up I felt Friday. (I didn’t know I was foggy). That wake up was two fold: mental and food. Shasta, dinner was awesome!

I don’t have the words: care giving. Without her, what this would be like?!!?!?!?. Yes, I’ve provided support. This be my first receiving as an adult!

Food volume consumed has gone up considerably in the last 4/5 days. I’m not getting a full signal… and even after having consumed a meal there seems to be constant temptation to eat more. so I get to figure out how to balance energy level with food consumption.

Acupuncture is helping with mouth pain.

Kathy and I are getting our first-ever flu shots Friday, since Dr. O thinks we should.

That’s all for now. Thanks for the well-wishes.

PS: This is Dr. O – he was a catcher for WSU and played minor league ball while attending med school (seven summers)


Thanks for listening
Mike, Kathy @ Katie

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