Tuesday, June 2, 2015

Cardio Pulmonary Rehabilitation

Today, Shelbie had her first Cardio Pulmonary Rehab session.  I had my doubts about doing this but it didn't take long for me to see the value in this.

I'm never thrilled about the hospital in the big city.  I hate it.  But every now and again, we have a nurse that really makes a difference.  Today, the respiratory therapist we worked with was amazing.  She had spent a fair amount of time researching Dyskeratosis Congenita before we arrived and she was pretty well up to speed.   She spent an hour and a half counseling us about what the care plan would be over the next three months.

I have always thought that I should limit the kids' activities so they don't 'wear' out their lungs.  You know, the more you stress them, the quicker the disease will progress.  I told her about my concern.  She set me straight on a few things which I was so appreciative of.   I love being taught new things.

She explained that a big part of your lung function has to do with how strong your diaphragm muscle is.  It's one of the largest muscles in your body and it is mainly responsible for keep your lung function in tip top shape.   It is the thing that makes your lungs expand.

They discovered this during the Polio days.  Polio is a virus that attacks the muscles.  It would attack the diaphragm and people would lose their ability to breathe and have to spend time in an iron lung.   Cool right?

So, she said that the stronger they can get Shelbie's diaphragm, the better off her lungs will be, even as the disease progresses.  The diaphragm can compensate for poorly functioning lungs.   She went on to explain that the heart and lungs are so closely tied together.  Rarely do you see heart problems without it affecting the lungs and vice versa.  They rely on each other working properly.

They are going to start Shelbie on oxygen.  At first I felt panicked that we had arrived at that point.  It feels like a setback knowing my daughter needs oxygen.  She reassured me that it will help her and she doesn't have to be on it all the time, just during exertion.  Because Shelbie is in bone marrow failure and struggles with low hemoglobin and hematocrit, she isn't moving oxygen efficiently through her organs, including her lungs.   This is adding to the other lung issues and putting undo stress on her heart.  Because she has heart arrhythmia, adding oxygen should stabilize her heart rate and keep her safe while they run her through these rehabilitative exercises.

So, in the long run, it's going to be a good thing I guess.  Well, it will be.

After leaving, I felt a lot of peace and I believe we are doing the right thing for Shelbie.   I try not to think too far into the future about where this disease is going to take us.  It's scary but this is one thing that may prolong what feels inevitable.
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