Right after meeting Dr. Tsai, I had hoped that getting a bone marrow transplant would be in the near future.  That future is taking longer than I expected.  It is now the end of March and there is no set date for me to be transplanted.  I really was hoping that it would have been done by now and I would have been on the way to recovery.  Instead, a pneumonia put me in the hospital one time.  Neutropenic fevers got me there a couple of times.  A blood stream infection with pneumonia provided me with even more hospital days.

All this makes living very frustrating.   I can’t even take a shower with this apheresis catheter in my chest.  It’s needed for the stem cell transplant.   I wouldn’t have let them put the catheter in if I knew it would take this long to get the transplant.  One of the infections (cellulitis) came about because of the catheter.  That sucked.  Still, it has to stay.  You just cannot pull it out and put it back in when needed.  I spent a day getting loaded up with platelets just so the doctor that put the catheter in would feel comfortable enough to do the procedure.  I guess he didn’t want me to bleed out during a relatively simple procedure.  I would have the same problem if I had to have it removed, so why remove it.  Besides, the cellulitis around the apheresis port is pretty much near gone.  It almost looks more to be a bruise than anything else at this point.

For the neutropenia, Granix injections have boosted the WBCs and neutrophils into a normal range.  That should help the antibiotics fight infections.   I don’t know if it helps the antivirals or antifungals fight too.   After platelets, the lungs are my biggest issue right now.  Pneumonia, some kind of infection, whatever is going on in there is keeping me from moving on.  The latest: albuterol inhalers, albuterol via nebulizers and some other crap (acapella) that I haven’t yet received are intended to clear up the crud in the lungs.  Oh yeah, more CT scans and chest x-rays.  The latest word: some improvement, mostly stable, but worse than the first set of pictures taken.  There is a lot of crud in my lungs.  CRUDa very useful word.

Back to being frustrated.  Some days it’s obvious; other days it is not.  I tire easily when doing anything physical, but I have to keep trying and keep up my strength.  I can go back to doing things that I was doing pre-MDS, such as scanning my negatives into Lightroom.  I lost interest when all this MDS shit started and still don’t feel up to doing any scans.   I should make an attempt at it again.  I can’t do anything in the basement because it is dirty, dusty, unhealthy for me.  I would be afraid to cut a piece of wood for fear that I would cut me and bleed out.  The doctors don’t want me going to restaurants or other places, especially when crowded for fear of infections.  I go to the store; nowadays, I wear a mask and wash my hands much, much more.   I suppose I can go places away from people and take pictures, which I like to do, but the weather has sucked and wherever I go, I have to stay near the car.  I would be afraid to wander away and not have the energy or strength to get back.  Doing this blog helps.  It makes me use my feeble brain, kills time, lets me vent and provides others updates on me.  Trying to stay optimistic is hard work.




One thought on “Frustration

  1. Ray, you have been through a lot in a short time. Do not get down. You are in good hands. I am praying for you. Take care. Joanne Beasley


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