I have watched three series of Salk Symposium videos on sleep disorders from 2009, 2010, and 2011. The first time I felt a bit scared. They were talking about PPS and other serious breathing disorders. I felt it was being presented to other medical people and some of it a little above my understanding. It was hard to listen to some of it because some of it was about me and perhaps I didn't want to look into the possible future. As a child I was in an iron lung. Even though it was good information, I didn't want to dwell on it.
The following year I watched the new videos. They were even more interesting and I absorbed more because I had already e-mailed back and forth with Gladys Swensrud. She explained some acronyms and things that I did not understand. After this I started referring to my condition as neuromuscular and my pulmonary doctor agreed to switch me from the BiPAP to a Respironics machine with a backup feature after he graciously consulted with Dr. Benditt, one of the Salk presenters whom he already knew.
My pulmonary doctor is one of the nicest doctors I've ever had, but I think I am a bit of an enigma to him. He diagnosed me with respiratory failure because of my poor lung function and my low oxygen level, but supplemental oxygen did not seem to help me.
Although it was reassuring to have the feature that will spontaneously trigger a breath if the sleeping patient does not, to be honest I did not notice any change. As I did not feel better I kept going to Apria to ask for the machine to be checked. I was getting more tired and in my head I was sure it was the machine - not me. They were very helpful giving me a loaner while they checked the machine, eventually switching me to a ResMed VPAP ST. In the meantime I was networking with other polio survivors and learning more from my own research. It was really quite exciting! I wanted to get my doctor to agree to some treatment changes. But it is very hard to get an appointment with him because he is part-time, so I decided to build my case. From what I learned from some other polio survivors I really respect, and reading stuff on the web, I didn't want to wait for my doctor's approval. I felt I needed to prove something first to me, and then to him.
First I gradually weaned myself of the supplemental oxygen. I had already purchased a small finger oximetry monitor from Amazon.com so could check my O2 level any time I was awake. With or without oxygen the reading was hardly different. Next with guidance from my new special PPS friend Rick I changed my bi-level settings to lower the EPAP (expiratory positive airway pressure) and gradually increase the IPAP (inspiratory positive airway pressure). I tinkered with the other settings as well. Changing them slowly over days and weeks to what seemed the most comfortable^ What I noticed first was a feeling of more energy and the ability to enjoy a little more activity. And I felt pure joy about not having to carry my little oxygen canister around and have prongs in my nose anymore. Without seeing me, my doctor did prescribe an overnight oximetry test which showed I had just adequate oxygen level for most of the night. By the time I saw him at my long awaited appointment he could see right away I looked better. He authorized Apria to take away the oxygen generator I affectionately named the screamer because of the horrible alarm noise it makes when you turn it on.
I have no medical credentials at all, but I believe I was previously holding on to my carbon dioxide because my lungs were not being properly ventilated. I was hypo ventilating, breathing so shallow I practically stopped breathing for some periods of time. When a person receives supplemental oxygen it suppresses their natural incentive to adequately exchange air. People with asthma or other lung disease can benefit greatly from supplemental oxygen, but people with weak breathing muscles can get their own oxygen from the air if they have good ventilation support. Also, the weak breathing muscles make it hard for a person to exhale against air pressure so a lower EPAP pressure can help them expel the CO2. It is important to have adequate difference between the IPAP (inhale pressure) and EPAP (exhale pressure) settings.
After viewing the third series of Salk videos I decided to try using a Liberty mask. Two things I like about it are: no pressure mark on my nose that I often get from the full-face mask and secondly I can put my glasses on if I want to see something while I am in bed. But I seem to have allergies or a head cold at present so the nose pillows bothered me and I went back to my old mask after just two nights with Liberty. I will try it again later.
When I went to my last doctor appointment his nurse said it must have been pretty scary for you to be in an iron lung. I said "No, it really wasn't, because back when I was seven years old I was young and dumb." I had never heard of polio. For me it felt like a very bad flu with a high fever. I was struggling to breathe, so after the initial examination when they placed me in the iron lung it was such a relief to be able to relax and let the machine take over the breathing. I was accepting of having my body in a box and just my head outside resting on a pillow. Fortunately, the iron lung helped me recover and I was soon weaned off and able to breathe unassisted. Of course there is a lot more to my personal polio story but this is just focused on breathing.
I am sincerely grateful to the Salk Institute for organizing the breathing symposiums and hope they will continue in the future. I also think it is important for polio survivors to do their own research, to network and share what they learn. Doctors are great but they can't know everything about us. It is important for each of us to manage our own condition. Before PPS I didn't really know many other polio survivors, and then I didn't really know many with breathing issues like mine. Now I have learned so much from my PPS friends at Polio Outreach of Washington, in Renton, Washington, and more specifically about breathing issues via Hilary Boone in the UK, Gladys Swensrud at the Salk Institute, and Rick VanDerLinden in Southern California. I am very thankful to everyone.
Janet Whitworth janhat55 @ comcast.net
Originally published in the PPS Manager, www.ppsmanager.com