I’m Back - 8/7/2022

It was Day 5 (May 11) and I was feeling a bit cocky. I still felt perfectly fine – nothing like what I remember from 13 years ago. I obviously disturbed the transplant gods as the next day that I woke up and remember anything was May 19 when they were removing the breathing tube. My memories were swiss cheese-like for the next couple of months.

Between May 11 and now, I believe a little miracle or two happened. I very easily could have died several times. It pays to go to The Mayo. Since then I have battled multiple challenges – a cytokine storm, Cytomegalovirus (CMV), West Nile Virus and Cocci Pneumonia. The doctors were fighting so many different diseases that they struggled to find the real cause of each of my symptoms.

When Julia left off, it was July 5 and the doctors had just suctioned out my lungs and were awaiting results from the biopsies to shed light on what was causing the latest fevers, delirium and pneumonia. The pneumonia was a by-product of a weakened immune system that allowed dormant cocci spores from a bout of Valley Fever from 2015. If you missed that battle, you can catch up on that blog entry here.

Once they figured out the culprit and a treatment plan it took two additional weeks of therapies at the Mayo. Finally on July 22 I was able to return to the rehab hospital and start all over.

After arriving at the rehab center we began 3-5 sessions daily between physical therapy, occupational therapy and cognitive exercises with specific tasks associated with each session. The repetitions have increased, the weight has increased and more difficult exercises have been added. I came into the center walking approx. 80 ft in a session with the assistance of a walker. Now I can walk 500 ft per session with a walker. Arm exercises used bands and no weights three weeks ago and now I can use both bands and weights up to 2.5 lbs. I am able to shower and dress myself with minor help. And I’m looking forward to continuing therapy from my new home sometime in the next.

This is going to be a long journey as I have significant weakness in all extremities. I think it will be at least a year for me to get back to where I was before the transplant.

Otherwise, I feel great. The myeloma continues to remain controlled with better results than I’ve had in years. I’ve gone 3 weeks without any fevers and a week without any blood products. My body is finally adjusting to dialysis 3 times a week.

I want to thank you all for your caring support. I know there have been prayers said in many languages and I think God heard them. Without all of you, I wouldn’t be here.

John