The Road to...The Happiest Day of the Year

As one passes from day to day, it is hard to imagine how one decision can cause a cascade of events to occur, which continues for many weeks, months and even years to come. Last year, one small decision, which seemed rather insignificant at the time, has dramatically changed my life.

On July 10, 2018, I underwent a procedure called an ERCP. This entailed a scoped being placed down my throat, through my stomach and into my small intestine. A small, flexible scope was then extended up my duct and into my pancreas. A large cyst was found and drained. Before the procedure began, I was informed I would have to be placed on the hospital ventilator. Due to having issues in the past using hospital ventilators, I am always leery about turning off my ventilator and switching to a foreign machine. The anesthesiologist was extremely kind and very knowledgeable about ventilators. I trusted her; I allowed her to switch me to the hospital ventilator.

Within a week of having the procedure done, I noticed my sputum had changed. It now had a fluorescent hue to it along with a sickly sweet smell and taste. My heart sunk. I knew I had acquired another respiratory infection. I was fairly confident it was from the hospital ventilator and was a bacteria called Pseudomonas

A few weeks later, I went to the emergency department and was hospitalized. I was sick, but I had a clear chest x-ray, normal white blood cell counts and a low grade fever. A sputum culture was ordered. It came back positive for Pseudomonas. When the doctor informed me of the results, I was happy. See, I am sick. This is a new bacteria. I will be given antibiotics and soon be on the road to better health. The physician, however, believed differently. "This is a colonization. You do not have an active infection." I interjected, "But wait! Colonization means the bacteria is a normal part of my respiratory tract. I have NEVER had Pseudomonas in my sputum before. If I am colonized with Pseudomonas, I would have had it show up in my previous sputum cultures. I am not feeling well. Surely this is the causative agent." The physician dismissed my claim and said, "You do not have an active infection. You are not sick." The medical professional dismissed me home without any antibiotics.

Two weeks later, I was slated to undergo IVIG (intravenous immunoglobulin) treatment. I tried to come up with a reason why I should not have the IVIG, but nothing seemed to contraindicate the IVIG. Within 20 minutes of the IVIG being infused, my mast cells rejected the treatment. I developed an anaphylactic reaction. I was wheeled down the hall to the emergency department. I was given immuno-suppressant drugs and admitted to the ICU. In a few days, my health stabilized. I was given my last dose of immuno-suppressants around 11 a.m. I was discharged home in the afternoon. In the evening, I noticed I was very fatigued. I thought I was just tired from spending several days in the hospital.

Around 11 p.m. that night, I abruptly became extremely ill--violent shaking chills, high fever, confusion, nausea, pain throughout my body, etc. (For more details, click here) I struggled through the night. In the morning, my parents drove me to the large medical facility nearly 400 miles from our home. Once in the emergency department, I am informed I am being admitted to the ICU. I had a large hole in my lung due to Pseudomonas. During my stay in the ICU, the exact same doctor I had just two and a half weeks previously, who said my Pseudomonas infection was just a colonization, severely scorned me for having IVIG. "You have an active infection. IVIG weakens your immune system. You should have known better..." I really wanted to scream out, "Wait! You just told me 2.5 weeks ago I did not have an active infection!" But I refrained from pointing out the physician's error.

I spent 12 days in the hospital and acquired two additional bacteria. After a brief period of feeling better, I began to feel quite ill. Upon discharge, I was running a fever. My white blood cell count was elevated. I was coughing up copious amounts of blood. My doctor prescribed IV antibiotics; they did not seem to be working. I suffered through four days of worsening health. I finally decided to go to a local emergency department. My chest x-ray revealed the Pseudomonas was all over my lungs. I was admitted and spent more days in the ICU. Upon being released home, I am put back under the care of my doctor 400 miles away.

Since I was admitted to the hospital, his prescription for IV antibiotics was made void. My doctor decides to place me on a relatively newly approved drug. He submits the paperwork to the infusion company. I have to wait for them to process everything and get insurance approval. In the meantime, I look at the calendar. In two days, it will be Yom Kippur (the day of atonement). This is supposed to be the most joyous day of the year. After having a very turbulent summer and now fall, I wait eagerly for that glorious day, the tenth day of the seventh month on God's calendar. Oh, the day is going to be filled with lots of singing, prayer and happiness. I can hardly wait for the day to come!

(For the link to Part Two click here)