It appears that I have pseudo-Host Vs Graft Syndrome. For patients like me, who received their own stem cells, this problem, while with severe symptoms, is usually easily treated. The team reached this conclusion by all the other test being negative and how profoundly I’ve responded to three days of high dose steroids.
So, I went from feeling horrible on Monday morning to feeling halfway decent this morning. I felt so well that yesterday we did a 5-mile urban hike (Pete Gross House to Lake Union to Pikes Place Market and back).
This morning I felt so well that I was able to walk down to meet Ramsey and Denise for coffee at the Cascade Coffee Works. This was the first time I’ve had a cappuccino since I was admitted to the hospital (before the transplant) on June 9th. There are two reasons I’ve avoided espresso. The first, was that the transplant process made everything taste like a burnt cat turd soaked in bleach. Since espresso taste a little burnt to start with, it was unpalatable. The second reason was that I’ve had (one of my main symptoms) Godzilla-diarrhea (my term for this awful symptom). Espresso has the tendency to move the bowels and I didn’t want to take any chances with that. Since going on the steroids, my taste buds have finished returning to normal and the diarrhea had stopped so it felt safe.
It was truly a milestone this morning to have coffee with Denise and Ramsey (although Denise doesn’t drink coffee).
We met with the team today and we have a new (tentative) plan. We will finish the course of high-dose steroids on Sunday and then start the taper. The concern is that the symptoms will start to return. The studies show that 79% of the time, the symptoms do not return. So, our new discharge date is a week from today, July 17th. Please pray that the symptoms do not return and it would launch us down a new pathway of trying to figure this out, possibly going back into the hospital.
Tomorrow is my birthday. My wonder kids has gotten me a ride on a float plane, flying out of Lake Union, around Seattle and back to the lake. It has been on my bucket list. Now, just being alive (but 10 lbs lighter and hairless) is enough of a gift. Mike
8 responses to “UPDATE: New Discharge Date”
Happy Birthday Mike….I like celebrating everyday. I love the news you had to share today. I will continue to pray for you and Denise.
Happy Birthday Mike. It was so good to read your post today. Glad that you were able to share so special outing with your family.
Praying for you. So much progress and pain. So many hurdles. I’m so glad that you’re able to celebrate this birthday and pray that a year from now most of your current sufferings will have passed. Here’s to restoration and healing and hope… Happy Birthday!
Happy Birthday, Mike! Enjoy every minute of your birthday flight! Know you will be home soon and enjoying a thriving recovery. BJ & Sharon
Happy Birthday Mike!!I’m praying that your symptoms won’t return
Happy Birthday Mike!!! Such good news along a path of dire suffering. May you continue on your path to recovery with less and less of your horrible symptoms. Wow, a float plane, that’s on my list too!! Blessings on you and Denise!!
Happy belated birthday!!! Continued prayers and thankful for the good moments. ❤️🙏
On Wed, Jul 10, 2019 at 7:51 PM J. Michael Jones wrote:
> J. Michael Jones posted: “It appears that I have pseudo-Host Vs Graft > Syndrome. For patients like me, who received their own stem cells, this > problem, while with severe symptoms, is usually easily treated. The team > reached this conclusion by all the other test being negative and h” >
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