The Disease Continues

Lately, I have been experiencing increased times of feeling completely exhausted and no matter what I do I fall asleep.  I’ve also have been experiencing some memory loss and I seem to have trouble following explanations.  Often my brothers and I will email each other discussing things we've read or heard, and the other day I had to tell my younger brother that I couldn't follow nor could I understand what he was telling me.  When I told my Neurologist this, she ordered a MRI of the brain.  When that came back normal, she sent me to my Pulmonologist to have some CO2 tests done.

So this past Friday, April 19, after lunch, a friend brought me to the hospital.  I was scheduled to have a 24 to 48 hour test to see if I was retaining CO2.  The test showed that my CO2 level was elevated.  On Saturday Dr. L. made some changes to my ventilator settings which actually seem to make things worse.  Then on Sunday morning Dr. L, tried a number of different changes to the ventilator setting.

Here is what P. sent to our family last night.  I think she has explained what the Doctor determined far better than I ever could.

The tests this weekend showed that I have respiratory acidosis.  Because I do not breath deep enough, my body is retaining CO2 leading to a high blood Ph.  For some reason my kidneys are not compensating for it like they should.  Dr. L. tried decreasing my volume and increasing my breaths per minute (BPM) but I was unable to tolerate that.  She increased the volume again and decreased the BPM to 18 from 20 (I went in at 14).  That still wasn't solving the problem.  She increased the volume again back to 700 but then I was having high pressure and she was afraid his lungs would explode.  I came home at 16 BPM and 700 pressure, a slight increase but it really needs to be adjusted further to bring his CO2 levels in line with where they should be.  She has the results faxed to my doctor and Dr. L.’s partner Dr. S. who may have the company who supplies my ventilator asking them to come to my home.  If they come maybe they will be able to come up with ventilator settings that I can tolerate and which bring my CO2 down.  Sometimes it is a matter of adjusting to the changes.

Respiratory acidosis can be the result of my pain killers as well as not being able to breathe deeply enough to clear out all the Co2.  However in the end the doctor indicated that basically, this may be a progression of my disease and there may not be much they can do about it.