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Respiratory Muscle Weakness and PPS

30 Jan

20130713_140209

 Linda and her husband Terry

guy peeking at e-mail

Hello from Beautiful South Carolina!

I haven’t written an entirely new Post to this Blog for some time. I guess the reason (excuse) for that is that when you have a Blog about having Post Polio Syndrome, you have Post Polio Syndrome and don’t usually feel like writing a new post for the Blog. I guess another “reason” could be that I have been just plain lazy in neglecting my Blog. For this, I apologize.

I wrote this simple summary explaining Respiratory Muscle Weakness a few months back, because there is so much misunderstanding about how Post Polio can effect someone’s breathing.

Before posting the article to my Post Polio Support Group on Facebook, I had it reviewed by my Physiatrist and my Internist who both said that it was “excellent”. I would welcome any comments about your personal experiences with RMW.

Rainbow1

Respiratory Muscle Weakness (RMW) and Bi-Pap and C-Pap use

Written  by Linda Rowan

Have you ever been told that you have Respiratory Muscle Weakness? (due to Polio) You can have this even if you didn’t have a diagnosis of Bulbar Polio or were not in an iron lung. This is what happened to me. I use a Bi-Pap at night and have to sleep almost upright (O2 level drops if you lie flat). The Bi-Pap machine (Bi-level Positive Air Pressure) pushes room air into your lungs on the INhale and then the pressure backs off (or lowers) on the EXhale (Bi-level pressure) so we can get rid of CO2 by exhaling it. (which is what people who are “normal” would do naturally.) Most “polios” who have Respiratory Muscle Weakness have trouble exhaling against the Continuous Positive Air Pressure (C-PAP) of a C-Pap. This happens because of atrophying (weakening) of the diaphragm and other respiratory muscles, (chest muscles and intercostal muscles) which are between the ribs, due to Polio. A Bi-Pap lowers the pressure on the exhale so that we can rid our bodies of excess CO2.

If you have Respiratory Muscle Weakness, and are given Oxygen without mechanical support (a Bi-Pap), the lungs “send a message” to the brain which signals the Respiratory Muscles: “we are getting enough oxygen, so you don’t have to work so hard.” Then if the respiratory muscles aren’t working to push air in and out of the lungs, the CO2 can build up which is very dangerous, and can be life threatening. (it would be helpful to read Dr. Oppenheimer’s article on this subject).

This is very complicated. Insurance companies have tried to put people with Polio Respiratory Muscle Weakness on C-Pap because I have been told they are much cheaper (by my Physiatrist). I tried to use one that my Respiratory Technician brought to me ( just to see what it was like) and had a feeling like I was being smothered.” I could not exhale against the continuous air pressure rushing in. *Every Post Polio does not need a Bi-Pap instead of a C-Pap.  For instance, if you have Sleep Apnea and Don’t have RMW, a C-Pap may work well for you. We had to submit a lot of documentation to Medicare for them to approve a Bi-Pap for me: A Sleep Study (interpreted by a qualified Sleep Technician and/or your Physiatrist or Pulmonologist) A PFT (Pulmonary Function test), the  VC (Vital Capacity) of your lungs, (mine was 31%) were required. And an ABG (Arterial Blood Gas, done in Respiratory at the hospital by a Respiratory Technician) to test if you are retaining CO2, was done, and a prior diagnosis of Post Polio Syndrome. If you have Respiratory Muscle Weakness and are not on Bi-Pap (yet), you may experience some or several of the following symptoms. Talk to your Pulmonologist or Physiatrist ASAP.

  • morning headache
  • confusion, or other cognitive deficiencies
  • excessive daytime fatigue and sleepiness
  • shortness of breath, and inability to have a productive cough
  • problems speaking without taking breaths between words
  • unexplained muscle pain in the chest and trunk muscles
  • trouble sleeping lying flat

Some of these symptoms may also be caused by other problems, such as heart trouble, (shortness of breath). The purpose of this article is primarily to explain what Respiratory Muscle Weakness is, and the difference between a Bi-Pap and a C-Pap.  I hope that after reading this you have a better understanding of RMW.

IMG_1416                                                Here’s to hopes of much warmer  days ahead!

Recommended Reading:

Oxygen Not Recommended for Hypoventilization for Patients with Neuromuscular Disease

(Dr Oppenheimer’s article and others):

http://www.lindacrabtree.com/cmt/anesthetics/anesthetics_article3.html

Summary for Anesthesia Issues for the Post Polio Patient:

http://www.post-polio.org/edu/hpros/sum-anes.html

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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! 

PART 2

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 DEFICIENCIES..like 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.