It's a nice day today, here in Massachusetts, where I sit, south of Boston. The sun is out, the sky is blue, the birds are singing, the leaves are so green, the earth smells so good. Well what little I got to smell of it this morning.
I'm stuck inside, in a small dark room on the northeast corner of our house. Stuck inside with the computers and an air conditioner. It's because of the air conditioner that I am here.
I have asthma. The filtered air output of this machine is hopefully going to stave off another attack. It's probably a wasted effort, my lungs are tight now. I've already sucked on my inhaler as much as I dare.
I've already gotten to the point where I know it's moving to the next step.
I didn't always have asthma. I contracted asthma when I was 28 (almost 20 years ago), shortly after we moved to the Pioneer Valley in western Massachusetts.
You probably don't recognize Pioneer Valley by that name, but you may recognize it for the schools there. Amherst College, University of Massachusetts Amherst, Hampshire College, Mount Holyoke College, and Smith College. Or the people who called and still call it home like Emily Dickenson, Theodore Geisel (Dr. Suess), William Cullen Bryant, Kevin Eastman and Peter Laird (TMNT), Sojourner Truth, Kurt Vonnegut, Noah Webster, Robert Frost, Uma Thurman, Milton Bradley, Timothy Leary, James Naismith (inventor of basketball), and Rachel Maddow, to name a very few.
The Pioneer Valley also has another notable that no one really talks about outside the valley. It's not really the valley's fault, it's just a nature of where it sits, air currents and a megacity two states away. When the wind blows in from the south it brings all of New York City's air pollution with it. Then the pollution just sits there between the mountains in this beautiful valley, much like an unwelcome guest parking himself on your expensive sofa, eating your chips, spilling his soda and ordering pay per view.
When the humidity is high and the weather warm, the pollution turns into a toxic brew.
We didn't know this. We also didn't know my lungs were "weak." What we did know is that all of a sudden I had a cough that I couldn't get rid of. And sometimes that cough would become painful and machine gun like, never fully completing before the next cough came.
"Cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu."
The final "coughs" of the rapid fire becoming so weak, so obviously painful and so desperate because there was no air to back them up, that it not only terrified me, but everyone around me.
Many times I was close to passing out.
The doctors at the UMASS health center, Kaiser, and Cooley-Dickenson Hospital began looking at all possibilities. Could I have tuberculosis, or another lung disease? No one really knew. I told my doctor that it felt like my lungs were in spasm.
Could I have asthma?
It wasn't any type of asthma they knew. I rarely wheezed, I didn't start with shortness of breath. My peak flow even in the midst of an attack was good as well as my oxygen saturation numbers. But my doctors did some research and found a little known (at that time) but rising form of asthma called Cough-Variant Asthma (CVA). It sounded like what I had.
They tried me on asthma meds. A Ventolin inhaler made it worse, but Proventil inhaler was fine, it worked. The next step was to test me for asthma, which required them to make me have an attack.
At first my mind refused to even allow this. It was battered by the constant coughing, often swimming after an attack. My chest screamed back at me, it was sore and wanted no more. The muscles in my arms, shoulders, even my sides made their protest known. All with the same message, "NO! No methacholine challenge test! It makes no sense to breath chemicals to make you have an attack this painful."
My inner voice lost as my doctors spent a lot of time assuring me and reassuring me that they would stop the attack the moment they had a positive result.
The third dosage on the test was all they needed. The confirmation was strong and absolute, I had asthma.
In an attempt to mitigate the attacks, which were now very frequent, my husband and I decided that I should move back to Denver. We would take the money we had saved to move the kids out to join us and move me back. He join us when he finished his master's degree.
It didn't help. My attacks were just as frequent and maddingly I was now in a new hospital system that didn't know me. Every time I would go to Denver General (DG - now Denver Health) ER I'd have to explain what I had and why they needed to treat me just like any other asthma patient, even though I wasn't wheezing, and wasn't short of breath.
One one visit the freshly minted MD resident fought with his attending over giving me a nebulizer treatment. He didn't want to because I wasn't "presenting," I guess he thought I didn't hear him.
To make his "point" he just put saline solution in the nebulizer and did not add the medicine part, the liquid albuterol. It didn't work, I was still having the rapid fire coughing. And I knew what he did because I didn't get the customary "yawns" I always get after a neb treatment with albuterol.
I went to the DG clinc the next morning and told my doctor what happened. He wrote me a note that I was to present whenever I was taken the ER for an asthma attack. It said basically:
Dear Resident Baby Doc,
I don't care what you think. Give her the standard asthma treatment. If you disagree with me, come argue with me, but give her a nebulizer treatment with albuterol.
signed,
Dr. So and So head of DG Pulmonary
I loved him. I wish I could remember his name (really I do). Even living in the same city as National Jewish Hospital most of the doctors did not know about CVA. It's nice to have a doctor who is not only your advocate but also has muscle.
One evening a few months later I was being whisked into DG ER by paramedics again and as if by magic everything clicked. There was no explaining my condition to the staff, no arguing, no pulling out my "note of power." They all knew and I got treatment without argument or delay.
When things calmed down, when my head wasn't swimming and I was able to think I realized what had happened. I confirmed them when the nurse came to check on me. "Did you all have an inservice on me and Cough-Variant Asthma?" The answer came back yes.
During the course of my husband and my 2,000 mile separation I got pregnant during one of our all too infrequent visits. Since I hadn't received the relief we had hoped when moving back to Denver, and the mix up on my credit count had been found and fixed (and I was still 2 years away from finishing my degree) it was decided we all should move to Massachusetts this time.
Asthma is now something I live with and something I must alter my life to avoid known triggers. CVA has progressed to "normal" asthma. I now have the full symphony of the "supe, supe, supe, supe, supe" as I gasp for air and the "cu, cu, cu, cu, cu, cu, cu" of the rapid fire cough. Sometimes they happen within moments of each other.
Other times, it is like yesterday. I feel my chest tighten like a wad of the light airy plastic that covers clothes from the dry cleaner suddenly compressed in your hands. Then the cough comes. First slow, as if in warning of what is to come.
At first you sit hoping that you will be stable enough when the first machine gun cough comes, you bark/plead with those around you to get your inhaler before it's too late. Before the rapid fire begins.
Which is closer? Your purse, the one you leave strategically on the mantel, the one on your bed nightstand. If they can't find those there is the one in your car. Quickly!
"Cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu."
It's too late.
Time for the nebulizer.
One son frantically ask where the saline and the liquid albuterol is as the other goes to get your nebulizer. But I can't tell him, my brain is already being battered by the cough, I am dizzy, confused and disoriented.
"Cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu."
Oh gawd let me get on my hands and knees on the ground. I can't fall it I pass out from there.
Nebulizer's ready, tube and bowl hooked up. A call has gone out to my sons' dad, "Where is Mom's saline and albuterol?"
"Cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu, cu." I throw myself backward so that my back is on the seat of the sofa, my body is racked in pain, my lungs hurt but relief desperately sought by this move doesn't come.
My youngest son, who has set up the nebulizer looks on in horror as everything stops. My coughing stops, my lungs will neither take a breath or expel any air. "Oh please let me pass out," I beg inside my head.
Breath does not come.
It's all stopped.
"Mom! Mom! Take a breath!" comes an almost far away pleading
I wait. One or the other, breath or pass out -- please be quick.
My lungs expel and I can breath again.
The liquid albuterol and saline seem to appear at that moment and I begin a nebulizer treatment.
I spent the rest of yesterday in my sons bedroom with the a/c and a ton of DVDs. My sons spent yesterday putting the rest of the a/cs up. I do detest them and always wait to put them in. I like smelling the earth, hearing the birds. I hate feeling like I'm living under glass, hermetically sealed.
This morning as I walked in from running an errand my lungs tightened, and I retreated from the world to this little room. If tomorrow the same thing happens I will relent and go to the ER where I will be put on steroids both inhaled and a tapered dose. I hate it but it's the next step and I have work outside this room to do.
I wouldn't wish this on anyone, or any other families. To watch the horror come over a child's face as you fight for breath is nightmarish. What must he be thinking?
But it may come to more people.
Asthma is on the rise the world over. No one really knows why.
Hurricanes picking up oil and dispersant, making a toxic mixture in the warmth and moisture of the gulf, then being aerosolized as that hurricane makes landfall and moves inland won't be healthy. It could make many more lungs like mine.
I have no real ending for this diary except to leave you with this wish :
I hope that you and your loved ones, or anyone else for that matter never end up with CVA or any other respiratory disease.
*******
Updated to add: My asthma attacks NOW are altogether infrequent. Attacks this bad are rare now for me. Often I don't even need a rescue inhaler for months at a time.
I joke that my asthma attacks are like migraine cluster headaches; nothing for a long time, then all of a sudden, BAM! Several, very severe, days or weeks of each other.
One of the goals of this diary is for those who have not ever had an asthma attack to in someway understand what an attack is like.