Part Two: 102.6 degree fever. You are not sick.

We arrive at my doctor’s appointment a few minutes ahead of time. I see an odd sight: the waiting room is packed with people. I know the physician must be running behind. As I sit and allow my heater/humidifier on my ventilator to moisten my lungs, I can feel the thick, sticky sputum in my lungs spring back to life.

(My heater/humidifier requires an electrical source for power as it does not have a battery. This means, while traveling, my lungs are filled with cold, dry air. This causes my airways to become ridgid. My sputum becomes too thick to cough up or move around my lungs. Once my lungs are rehydrated, my airways open up, and my sputum thins out, allowing it to move around my lungs. This causes me to cough. And soon, my lungs are free and clear from the accumulation of sputum, and my breathing returns back to normal.)

As my lungs absorb moisture, lots and lots of mucus begins rumbling around my lungs. Soon, I am violently coughing, and coughing up lots and lots of “junk”. Thankfully, the wait to be called back to a room is only about 40 minutes. I am grateful to be leaving the crowded waiting room. A medical assistant takes my vitals. My blood pressure is normal. My heart rate is 109 beats per minute. The medical assistant notices I feel warm. She takes my temperature using a forehead thermometer. It reads 96.8 degrees. I tell the woman it is not an accurate reading. She finds an oral thermometer. This device reads 102.1 degrees. The assistant copies down my vitals to my medical form and leaves.

A short while later, one of my pulmonologist’s fellows enters the room. I have had this fellow before. She is rather rude. I tell her of my recent health decline. She tells me it’s nothing to be concerned about. She listens to my lungs. She tells me there is nothing wrong. She leaves. A short while later, the medical assistant returns to take another set of vitals. This time the oral thermometer reads 102.6 degrees. My blood pressure is 142/83, and my heart rate is 136 beats per minute. She leaves. The medical assistant returns with the forehead thermometer. This device reads 98.3 degrees. Clearly there is an issue with the forehead thermometer. The medical assistant reports both temperature readings to the fellow.

After what seems to be an unusually long delay between seeing the fellow and seeing the pulmonologist, my doctor finally enters the room. She seems to be tired and in a negative mood. She tells me all my symptoms are due to my chronic pseudomonas infection. I am just going to have to live with it. My mom interjects, “But she has a fever of 102.6 degrees!” The physician says I have a temperature because I am wearing a thick jacket. She continues to state when my temperature was taken without my jacket it was 98.3 degrees. I tell the doctor the readings were taken at the exact same time. One was using the forehead thermometer, and the other was using the oral thermometer. Obviously there is an issue with the forehead thermometer. I go on to say I also took my temperature using my own thermometer. It gave me a reading of 102.1 degrees. I have a fever. The doctor dismisses the information.

The pulmonologist goes on to say she briefly reviewed the notes from the infectious disease doctor. She also called the doctor. They both were in agreement my symptoms were due to me being colonized with pseudomonas. Despite coughing my head off, coughing up lots and lots of sputum and fighting so hard to breathe I can barely say more than a word or two without gasping for my next breath, my doctor tells me I am not sick.

At the end of the appointment, she finally says, “Well, if you think you are sick, you are free to roll across the street (to the emergency department).” I am against going to the emergency department (ED) because my physician, who knows me and my medical case, says I am not ill. My mom, on the other hand, insists I go. By this time, my head is spinning and is throbbing, my body is screaming in pain and I am becoming extremely confused. I tell my doctor and mom I need to go to the hotel and lie down. Then maybe later I will go to the ED. My physician says she will have the fellow call over to the ED and let them know I will be coming. We part ways. My mom and I head for the hotel.


(For the link to Part Three, click here)