Post 74 - A Note from Fran

Several of our friends have been inquiring as to how Steve is doing with his new Bi-Pap machine. I've decided to post an entry to let you know about our trials and tribulations with this BOX.
Eventually it's going to be good, but until then, it has been frustrating and I am completely sleep deprived.  The machine has a modem and SIM card so that the doctor and Medicare can read the results. The doctor wants to make sure it is working and Medicare wants to make sure that Steve really needs this expensive gadget.  According to the technician that has come to the house twice now, this high tech machine is learning Steve's sleeping and breathing patterns ???? 

Steve has obstructive apnea and also the more dangerous type called Central Apnea.  The brain of an MSA patient neglects to tell the lungs to push air out to start breathing when sleeping.  This machine is suppose to "read" this and push a bigger burst of air out of his lungs. ( I think, or at least this is what I understand). This very smart machine has an alarm to warn you that you are having an apnea episode.  The technician neglected to tell us about this alarm.  The first night when this alarm sounded I jumped out of bed thinking the condo fire alarm went off. It then proceeded to go off another dozen times that night and every night thereafter.  Steve has learned to reach over and silence it. If he doesn't then I get up and gently wake him.  BUT remember this machine has it's own brain and agenda.  It only stays quiet for 90 seconds and then automatically re-activates itself.

I will regress to tell you we go to bed earlier because it takes time to get the straps, mask and tubing attached and plugged in correctly.  There is a small humidifier inside this box that gets filled with distilled water every night. Every morning the mask, tubing and filter has to be washed and dried.

I hope this does not sound as if I am complaining because nothing is further from the truth.  I am thankful that all these medical advances are available to us.

Steve is still in good spirits but he is getting more tired and exhausted with time. Our Christmas was delightful with our children here  but it took a toll on him.  He has not wanted to go out to a restaurant now for over a month.

Hopefully he will be in good form soon and write the next post himself.