Breathing Problems and PPS

9 Sep

Me caught asleep by my Husband. Notice the Walkman earphones

When I was first diagnosed with PPS in 1986, I got one bit of “good news”.  I would not have breathing problems with Post Polio Syndrome because I had did not require an Iron Lung when I had Polio as a child, and I did not have “Bulbar” Polio.  WRONG!

  We all know today, that ALL of our muscles were involved with Polio.  Some of us came out with no discernible residual effects, some were left with braces, crutches and wheelchairs for a few years, and some have even been using wheelchairs, crutches and braces all of our lives. After re-training my muscles to be able to crawl, sit up, stand and walk,  I “only” had an “S” curvature of my spine, and an underdeveloped right leg.  I was fitted with a back brace, which helped to almost eliminate the scoliosis, and after several years of Physical Therapy, I walked without assistance. This happened right before I started first grade at 7, a year late because of my physical limitations.

PART 1 of the “Nightmare”

The downward spiral….

OK, as I am prone to say:  Fast-Forward to 1986…..In spite of the fact that I was diagnosed because of Shortness of Breath  (SOB) by my Allergist, who referred me to a Neurologist for evaluation for PPS…they told me that my breathing would not be a problem…for the reasons I stated before: no Bulbar Polio and no use of an Iron Lung.  

In about 2002, I started to have a great deal of pain in my trunk muscles and across my chest.  I thought this was simply from sitting up for too long.  A new recline/tilt wheelchair helped this pain a lot!  But it persisted.  I would take NSAIDS to get through my day. The pain became excruciating at times.   My Medical Supplier loaned me  a  Bi-Pap  ….Medicare had said that I did not qualify for one because I didn’t have “Sleep Apnea.”  Post Polio Muscle Respiratory Weakness was not recognized by Medicare as diagnosis to qualify for a Bi-Pap machine from Medicare  at that time.  I simply “fell through the cracks”!  

That helped for a while,….Later, my pain increased….. I was taking 3200 mgs. of  Ibuprofen a day!….the limit according to everything I had read….  My condition deteriorated.  I became weaker and weaker.  I would not be able to finish a sentence when talking without stopping for breath.  I could not walk across a room.  I could only take about 6 steps with my walker without having to stop and sit down on it. For some reason, talking on the phone was even harder than talking in person. 

A personal aside:  My wonderful friends at church organized a group of ladies and their husbands…some of whom I didn’t even know,  (they sat on the “other” side of the church!) and they started bringing my husband and me dinners every day.  These ANGELS from my church fed us for about 6 months!  They said they were willing to do it for years, if the need still existed! 

Anyway, back to my story:  I went to my Primary Care Physician (my brain was too fuzzy from lack of Oxygen to think to see HIM while my Physiatrist was trying to get me on Bi-Pap). He drew blood and sent me home to wait for Oxygen to arrive to use with my Bi-Pap. Before the Oxygen got there, they called me and told me to get to the hospital STAT and to NOT drive myself! 

My Potassium was down to about 3 (I forget, some levels were 2 and some 4) Mg was super low and he said that my Hemoglobin  was so low that my red  blood cells couldn’t carry enough oxygen to keep me alive!  He put me in the hospital and started me on Oxygen (with Bi-Pap as mechanical support), gave me about 3 units of whole blood, Magnesium and  FIVE BAGS of Potassium IV!  It takes about 2 hours per bag of Potassium, so that was 10 hours of that.  It was one of the most painful things that I have ever been through!  Potassium IV burns like fire!  I had 3 nurses all of the time and they kept my arm iced down.  The next day I felt reborn! 


The “why

Now that they had me stabilized, we needed to find out “why” this had happened.  As it turns out, My borrowed Bi-Pap machine had stopped working.  It was making all of the right noises, but not pushing air.  So, my breathing muscles were being overworked (causing the pain, just like walking too far) and the NSAIDS had caused bleeding ulcers!  My Dr. told me that the Ibuprofen was such a good pain killer that it killed the pan that IT caused! 

I needed a new Bi-Pap machine.  They rented for about $750/month!    I had to get one through Medicare! If they approve you, they also provide service, parts and repair.

My Physiatrist ordered a Pulmonary Function Test to be done in the hospital.  It showed that I was at 31% of “normal”.  The report that my Physiatrist got from the PFT said that the opinion of the Respiratory Therapist was that I wasn’t trying. They must have discussed the results,  because when I went for my ABG (Arterial Blood Gas…blood drawn out of an artery to get your CO2 level) it was the same Respiratory Tech….no problems. 

Needless to say, with these numbers, even though Post Polio Respiratory Muscle Weakness wasn’t a diagnosis to 

 qualify me  for a Bi-Pap machine, I got my new Bi-Pap. 

I was told later by one of my Doctors, that if I had not gotten  the new Bi-Pap machine, that I might have been dead in 6 weeks!

I think that now Medicare does recognize PPS and Breathing problems and you can get a Bi-Pap with this diagnosis.


SOME Warning signs that you might have PPS Breathing problems:

SOB, WEAKNESS, HEADACHE, MUSCLE PAIN IN CHEST AND TRUNK AREA, TROUBLE TALKING WITHOUT TAKING A BREATH, PROBLEMS BREATHING WHILE LYING DOWN (like someone is sitting on your chest, or you can’t get enough air…in or out..) COGNITIVE trouble thinking, remembering, word finding, etc.  Some of these are general PPS symptoms, but get worse if you are retaining CO2. 

When your breathing muscles are not strong enough to expel Co2 you can get CO2 build-up, which can lead to coma and deathSimply giving the person O2, without Mechanical Support (Bi-Pap) will make this WORSE, sending a message to the brain that says, “We are getting enough Oxygen, so the muscles don’t have to work so hard.”  This causes more CO2 to build up….My Pulmonologist told me today that using a Bi-Pap was like a SAFTEY NET for Post Polio Sundrome, especially if we need Oxygen Support!


What IS a Bi-Pap?

My Bi-Pap Machine

You may have heard of a C-Pap.  Some people wear a C-Pap at night for sleep apnea or snoring.

Bipap on top of Humidifier and storage drawer...hidden in day time by tablecloth

C-Pap stands for “Continuous Positive Air Pressure”.  A Bi-Pap is “Bi-Leval Positive Air Pressure”  A C-Pap will not work as well in Post Polio Respiratory Muscle Weakness because our muscles are not strong enough to breath out (exhale) against the C-Pap blowing the air IN!  A Bi-Pap stops blowing in for a set period to allow the natural exhale of CO2!  Once you get used to wearing a Bi-Pap, it actually breathes for you, just like the Iron Lung did long ago!  The Iron Lung did it externally, while the Bi-Pap does it internally, by blowing air INTO your lungs (room air, usually is sufficient).  After 8 hours or so of sleeping with your Bi-Pap, your breathing muscles have had a good rest!  It’s just like putting your legs up and not walking so that the muscles can rest!


I store my machines under a bedside table…notice the bed side rail.  I attached the hose friom my Bi-Pap to it so that it won’t “pull” out of position while I sleep.

It comes with a handy carrying case so you can take it with you when you travel…just tuck in an extension cord along with the rest of the equipment.

Of course you have to get used to wearing the mask and head gear, but that is nothing compared to living with constant pain and shortness of breath, or worse.  They make many different masks and headgear.  After a while you can find one that you like more than the others.  Your Bi-Pap Air Pressure INHALE and EXHALE are set by your Respiratory Therapist and your Doctor.  Just keep your filters clean and hold your breath every week or so to make sure it is still pushing air….if I had known to do THAT, I wouldn’t have had my near death experience.


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