A Quest for Oxygen Will this be a good air day or a bad air day?

I didn’t know what to expect with my first trip to the pulmonologist so I asked several friends, just so I would have a little insight.  I arrived at my appointment, checked in and provided them with the usual information, insurance card and drivers license and sat down to wait.  The office was located in a very old building that had a musty smell and the waiting room was long and narrow with chairs lining two walls and a large flat screen TV at the one end tuned in to the news.  I was nervous, the office was very warm, I couldn’t stop fidgeting and all I wanted was for the appointment to be over.  I hate the unkown.  My name was finally called.  The nurse took me through a set of doors and had me step on to the scale and then back to a really small exam room that was even hotter than the waiting room. This initial visit taught me one thing, always where a lightweight T-shirt and remove my coat as soon as I get there.  The nurse took my O2 with an oximeter, my blood pressure, and went through my medication list and history.  After she had all the information entered I waited for the doctor.

Finally the doctor walked in and introduced himself with the usual handshake and smile, followed by the cursory, “What can I do for you today?”  I knew right from the beginning that I was not going to care for this man and he didn’t disappoint.  A doctor with a god complex is the last thing that I wanted or needed.  This was the type of man that formed his opinion within the first few second of looking at me and no matter what I said it wouldn’t change his mind.  The first thing I noticed is that he didn’t really listen and he didn’t want to understand that prior to getting sick in 2007 I hadn’t been to a doctor in 10 years, this was something that had come on fairly recently, not something I had been suffering with for most my life.  I didn’t argue, I answered his questions, asked a few, and waited for the appointment to end.  He wanted me to have a lung fuction test scheduled and he wanted me to do a sleep study.  He didn’t really explain his reasoning, he just assumed that I would do it.  I quickly found out that they were also the Sleep Breathing Disorders Center.  I felt like they were shoving this down my throat as they took me down the hall to show me the sleep lab and to schedule the study.  By this point I was very angry.  I scheduled the lung function testing because I understood the need and it would give me a base line for how my lungs function.  I also scheduled the sleep study.

A few days later I returned for my lung fuction testing.  My appointment was in the afternoon and I couldn’t have my inhalers that morning, which taught me a valuable lesson.  I’ll never schedule a test again in the afternoon and if I do, I won’t be going to work that morning.  I was really struggling by the time I got to the appointment.  My husband went with me and they allowed him to come back to the testing room with me which I was very grateful for.  I was given a brief synopsis of what was going to happen and she answered the handful of questions that I had.  She used an oximeter to check my O2 while she prepared to do the arterial blood gas.  I had been told this would be painful, but I definitely wasn’t prepared for it.  She stuck a needle in my wrist trying to get the arterial blood gas, but she couldn’t find it.  She dug around for what seemed like forever until tears  started to trickle down my cheeks at which point she gave up.  It was extremely painful and I told her if she needed to try again that it was okay, but I would need to use the bathroom first.  Thankfully she said it wasn’t necessary so we began the testing.

A lung function test or pulmonary function test (PFT) consists of blowing in to a machine and getting several consecutive readings.  They have you do different breathing patterns and then halfway through the test, when you feel like your lungs are about to explode you do an albuterol nebulizer treatment and then repeat the first part.  The testing itself was not bad, it’s just a bit of a breathing workout.  What they are looking for is lung capacity and if your lungs improve with the albuterol.  The test takes about forty-five minutes to an hour.  The pulmonologist will read your results later on and complete a report.

Approximately two weeks later I received my report in the mail and as I finished reading it I became very angry.  The pulmonologist concluded that my breathing difficulties were due to obesity.  Yes I am overweight, but I have been practically all my life.  Prior to 2007 I worked in my flower gardens, loaded trailers at work, moved equipment, all without any breathing problems.  I was never sick, but now I was getting bronchitis every couple of months and doing anything strenuous was a lot more difficult.  I cancelled the sleep study and follow up.  The one thing that I learned from my husbands acoustic neuroma was that if a doctor doesn’t listen, move on and find someone else.  Back to my primary care doctor I went.

Throughout 2008 I struggled with multiple bouts of bronchitis, the first time I had ever really been sick in my life. My primary care physician (PCP) really worked with me and we tried different combinations of medications trying to find what would work best for me. I felt like an outsider looking in on someone else’s life, could this really and truly be me? I had been healthy, I didn’t have a pill case, I didn’t go to the pharmacy unless I needed an over the counter medication or a greeting card, I didn’t have a container full of samples and inhalers, what had happened to that girl I once knew?

In March 2009 I was yet again sick and had been struggling for a couple of weeks to breathe easily. My PCP decided that it would be benificial for me to use a nebulizer as part of my daily maintenance schedule. I was a little scared and apprehensive, but if it would help I was willing to try. My doctor arranged for my nebulizer through a wonderful company, Apria Healthcare and later that day a representative from their company delivered my new nebulizer. Suddenly I had this machine that would help me to breathe freely and a packet of use and care instructions. At this point I was on Advair 250/50, Spiriva, Ipratropium Bromide 0.5 mg / Albuterol Sulfate 3.0 mg nebulizer treatments every eight hours, and a Combivent rescue inhaler. My life was suddenly not my own, it belonged to my asthma. I had to get up earlier in the morning so I could do a treatment before work. My half hour lunches were no longer sufficient because I needed time to do a treatment. In the evenings after dinner I had to do another treatment. The cycle was never ending.

Within the first two weeks I learned one valuable lesson. With cats in the house the hose for the nebulizer was not safe. One morning I was doing a treatment and I couldn’t figure out why it was taking so long. I checked to make sure the mouthpiece was put together correctly. Check. The machine was plugged in completely. Check. There was plenty of air space around the machine. Check. The hose was attached firmly to the machine and mouthpiece. Check. I checked the hose and there was a rough wet spot. Uh oh! One of my kitties was laying on the kitchen chair and decided that the dangling hose was the perfect chew toy. Good thing the machine came with a back up! I called Apria and after the customer service rep stopped laughing she assured me that a new hose kit would arrive within a day or two and she would send an extra to be safe. I ended up cutting a slit in a piece of heavy vinyl tubing and covered the hose with that. I figured if they did it once they would try, try, and try again. I had already learned to properly dispose of the empty vials because they would fly across the floor if batted at.

My breathing improved and although I had to plan my day out to make sure I did my treatments, life returned to normal. In September of 2009 I became really sick again and a common cold became asthmatic bronchitis. I was put on Prednisone (10mg) for the second time, the first being with Pneumonia in 2007 (5mg), given an antibiotic, and a cough medicine. I struggled for a month and my lungs were not clearing up, so in October my doctor decided to try extended release Theophylline. I was always careful when given a new medicine and would read the informational pamphlets that the pharmacy would give me with every new prescription and I wouldn’t take it until my husband was home, just in case I would have an allergic reaction. This practice became even more important. I took my first tablet that evening and when I went to bed my chest felt funny, but I didn’t really think anything was wrong. By the next morning things got progressively worse. I was sitting at my desk and my heart was racing, my blood pressure felt like it was going through the roof, my brain became foggy and I couldn’t think or focus. My aunt rushed me to my doctor where he gave me an injection to counteract the Theophylline. I quickly learned that after one of those injections I have about 15-20 minutes before it’s lights out.

Things didn’t really improve and I continued to struggle breathing and I had a cough that just wouldn’t go away. In November I was put back on Prednisone.

My family kept expressing their concern that my primary care doctor was not doing what was best for me and they didn’t understand why I kept getting sick and was struggling to breathe. They wanted me to see a specialist. I finally relented and made an appointment.

It was Thursday December 6th, 2007 and I was with my now husband, doing our weekly grocery shopping.  I had been feeling worse as the day went on and figured that I was coming down with a cold, but that night in the grocery store, things quickly escalated.  Our grocery store is not overly large, but I couldn’t make it down one aisle without having to pause halfway to catch my breath.  I was coughing and wheezing, a word that wasn’t even in my vocabulary at that point.  My chest hurt and all I could think about was going home and getting some sleep.  My husband, who has asthma, was concerned, but I refused his suggestion to go to the ER.  I didn’t go to the doctor’s, I hadn’t been to a doctor in ten years, I didn’t even have a primary care physician.  I went home and straight to bed.

The next morning I woke up and felt miserable.  I turned off the alarm clock and pulled the covers over my head.  Around mid morning the phone rang and it was work.  We were in the middle of a commercial project and our employees on site needed information that only I would know.  I got out of bed, threw on some clothes, bundled up and went in to work looking and sounding absolutely dreadful.  Thank god it’s my families business, so no one was there to judge, not that I cared at this point.  My mom and co-workers were scared that I was breathing the way I was.  I quickly got the answers our men needed, my mom called her doctor and begged him to immediately see me, and one of our employees that knew CPR drove me to the doctor’s office.  I huddled in the seat coughing and clutching my chest.

I didn’t have to wait long before the nurse took me back and the doctor gave me what would be my first nebulizer treatment.  Relief!  I remember how good it felt to have that elephant get his carcass off my chest.  The doctor was positive that I had pneumonia.  Blood work and a chest x-ray were completed over the next couple of hours and I was given a pile of prescriptions.  I was given strict orders of fluids, bed rest, and if things started to get worse to go to the ER.

Over the next couple of weeks I was in and out of the doctor’s office getting different prescriptions, nebulizer treatments, and inhalers.  Looking back I should have stayed home and gotten the rest that was ordered, but I was stubborn and was needed at work.  I couldn’t work a full day, but I did as much as I could before going home and collapsing.  I figured that it was pneumonia, it would go away and I’d go back to my normal.  I was wrong!  (Not something you’ll hear me admit often.)

I somewhat recovered from the pneumonia, but over the next six months or so I ended up being diagnosed with asthmatic bronchitis three times.  My life was forever changed, but I had no clue what was to come.