Link to Carol's Corner Q & A

CAROL THOMPSON, POLIO SURVIVOR AND VENT USER, EMBARKS ON A FOUR-PART NARRATIVE DESIGNEDTO TEACH US ABOUT HER LIFEAND THAT OF THE LIFE OF AN AVERAGE VENT USER. THIS FIRST ISSUE RELATES HOW SHE SURVIVED POLIO ONLY TO BE BESET BY OTHER RELATED RESPIRATORY PROBLEMS THAT ULTIMATELY LED TO HER BEING A VENT USER.

By Carol J. Hinkley Thompson

Please click on this link! It is crucial for anyone and everyone with respiratory conditions. http://www.ventusers.org/vume/index.html

How did I end up on a ventilator in 2008? What brought me to this place
in life? The first thing that comes to mind is Polio, in 1950. That summer, with an epidemic coming, our strong disciplinarian mother kept us indoors, away from people, water, light, out of the heat, and we had to take two naps each day. In October, we attended the State Fair; the danger was over. Within 2 weeks, I was in the hospital
with Polio.

I remember the sudden onset, and falling when I tried to walk as if someone let go of
me. Weeks later, I awoke to find my left arm affected, and something was on my
chest (there was nothing there). They kept asking me to read huge alphabet letters.
Everyone was kind but we were all in isolation, and there is little memory of anything
until I was moved to a room with others in machines. I loved that doctor in there; he made me laugh, and had us use signals to show we were breathing on purpose
when he checked us.

My life change after Polio; walking was the only goal, in fact, no one would help me once I was home. If I fell, I had to roll to a place to get up on my own. My young life had been that of a “Tom-Boy.” Nothing stopped me. I ran, climbed, twisted, rode standing on my bike seat with arms outstretch, climbed 40’ White Oak trees to the tops, and danced better than anyone. After Polio, all that ability was gone but I didn’t relate it to my illness.

I could never again kick a ball (much less connect with it), run across the fields, or climb very high without being exhausted. I hid my new limitations though, feeling it my fault, ashamed because I started to gain weight that next year, hard for an 11 year old. The doctors did a breathing test for the thyroid (BMR) quite often and put me on thyroid pills. I was a “minus 36;” that’s all I knew.

The only breathing problems were constant bouts of bronchitis, and “croup.” It seemed I’d even have it when I had played very hard, or had a lot of work to do. Within 15 months, I had a terrible headache each day, until the fever started and it pulled my head backward. Our little sister had just been born and I had to care for her many evenings when our mother went to visit a neighbor. Fearing Polio again, I used a bath towel around my face to give her the bottle, and my 7-year-old brother pinned it on for me. I had spinal meningitis, with 106° fever, and had to have hourly spinal taps for a
long time; I was in a coma within a few hours of being taken to the hospital. The spinal fluid still had the poliomyelitis virus. I only remember being put into slushed ice during those weeks and a resident doctor who never left me (a Dr. Birch). Something was placed in my "mouth," I thought because I was coughing so hard during the spinal taps. I only knew what was going on now and then. The doctor slept with his head on the bed behind me. I was on my right side. Otherwise, I couldn’t speak or move, but I could hear many doctors around my bed talking about me, often saying I wouldn’t "make it" but I tried hard to yell out to my pediatrician (Dr. Johnson) to assure him that I was really OK. I knew I was not going to die!

Meningitis also lasted for months. I couldn’t forget the headaches for over 30 years; for some reason, a pending headache made me fear dying. There were other strange symptoms. From that time on, feeling "suffocated" happened whenever I was ill, or fatigued, if I went to sleep. I thought it was "just me" and not exercising enough. Another strange "thing" when I went to sleep tired. Sometimes, I thought I was awake but could not call for help, feeling suffocated, sweating, confused, and frightened.
(Continued next issue)

Do you have a question about breathing symptoms, or your health care? If so,
please email Carol Answers, advocatecj@ windstream.net To begin, one answer will be published in the next issue of Everything Respiratory.

Carol’s Corner -
A Question and Answer Feature by Carol J. Hinkley Thompson

Q:  Can sleep apnea cause migraines; is there a correlation? My husband has suffered migraines for years and they have worsened as his apnea has progressed. He is not helped with CPAP and doesn’t want more testing.

Dora in California

A:  Sleep apnea eventually causes serious health problems that could be prevented. Moreover, it’s foolish to ignore prolonged sleep interruptions. Never settle for “it’s just insomnia,” either—don’t “treat” it—see a neurologist. 

Migraines are associated with sleep apnea in teens and children for sure, and maybe a form of common morning headaches that come with sleep disturbances, but if he hasn’t seen a neurologist about the migraines, he should because he may be experiencing cluster headaches, have a “neck” problem, severe tension headaches, or something entirely different. 

He’s obviously fed up with the treatment; that is normal; he’s exhausted. Don’t let him give up, though.