Hope for a cure: Tom’s allo transplant journey (Part Nine)

Here is the latest from Tom in Ohio.  Turns out he had a bit of a scare late last week:

The great scholar Mike Tyson once said “everyone has a plan until they get punched in the face”. This week was one long “punch in the face,” but the plan is back on track.

I mentioned in my last update some of the blood type mismatch issues I was having, but the team felt the worst had passed. Turned out at that point the worse had yet to come. Saturday morning I woke up feeling more tired than normal, but figured my numbers were dropping so I wasn’t concerned. As the day went on my fatigue was to the point that i stayed in bed. When pill time came I couldn’t stand and concentrate long enough to get my pills straight. At this point the plan kicked in and the caregivers took over checking my temp, organizing my meds, and flushing my Hickman.

thermometerThe instructions that had been drilled into my head were to monitor my temp and call the hospital immediately if there was fever or severe fatigue. There was no temp, and “severe fatigue” is pretty subjective so we fought on.

Sunday morning everything had worsened except still no temp. Around noon the call was made to the transplant doctor on call. After some discussion—mostly about the fact there was no temperature—the decision was made to continue to rest and keep my already scheduled Monday morning lab appointment.

Monday morning I had to fight to get out of bed. My wife had to tie my shoes; still no temp. Made it to the appointment and labs revealed my hemoglobin was down to 6.0. I was given several bags of red blood cells over the course of the day but my hemoglobin was not increasing enough, I was admitted.

Each day in the hospital consisted of blood counts followed by a blood transfusion, my normal meds and anything else that were deficient being administered. On Wednesday, my counts finally held with steroids. I was told if they could hold one more day without steroids, I could go home. The numbers held and I was discharged late Thursday. I went in today for labs and my numbers remained stable; hemoglobin at 9.0 and all other counts at expected levels. It looks like the first bump is behind us.

In evaluating what happened I have determined a couple things. One, it’s clear I waited too long to call. Two, severe fatigue is too subjective a description.  Finally I focused too much on the fact I wasn’t running a temperature. From the hospital’s perspective, more questions should have been asked.  When I met with my team at the Monday appointment, the consensus was we waited one day too long to take action.

This was a good experience.  I now know what “severe fatigue” feels like. My caregivers and I know what to expect. It also showed me that although fever was our focus, it’s not the only thing that matters. I never had fever spike during this whole episode.

Time to rest.  Thanks for your support!

Courage conquers

Glad things seem to be back on track!  A reminder that things are rarely routine following an allogeneic stem cell transplant.

Feel good and keep smiling!  Pat

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