Health Update

This year I promised myself would be a year of health. I was going to spend no days in the hospital and have few medical appointments. But like most of my hopeful thinking, this was nothing more than me pleading with God for an easy year.

Starting in September (2019), I was extremely ill. I was going around and around with my doctors. I was told I was not sick. I then became extremely ill in late October. I spent six days in the hospital and finally received the IV antibiotics I so desperately needed. Unfortunately, I was discharged home with only a short course of antibiotics. I was still sick when the antibiotics ended. Due to the holidays, I was unable to follow up with my doctor until January.

I fought through November and December, visiting urgent care and the emergency department (ED) a number of times trying to get a dose of IV antibiotics here, and another dose there to tie me over until January.

Finally, my January appointment with my infectious disease (ID) doctor came. The appointment went extremely well. My doctor suggested I get a port since it seemed I was going to need IV antibiotics frequently to fight off chronic respiratory infections, which I will most likely have for the rest of my life. Things went a little slowly getting the port placement procedure set up as the paperwork was never submitted to interventional radiology, but eventually everything was arranged for me to get my port.

One week before the procedure, I became frightfully ill. Normally, I would have gone to the ED at the medical center where my doctors are located, but during this episode of sickness, it was not possible to make the 400 mile journey. Instead, I fought through the severe episode at home and hoped I would be well enough for the port to be placed.

The day I got my port is a day I will never forget. There were numerous roadblocks and obstacles which kept me from having the procedure done. (In retrospect, I should have abandoned the procedure. But I was determined to get a port placed.) It was late in the day when everything was arranged for me to get the port. The procedure was one of the worst things I have ever endured. I was supposed to have "twilight" sedation in which pain medicine and a sedative are administered to help make you feel sleepy. I never became sleepy. Instead, I was shaking uncontrollably in pain! My heart was beating at around 140 beats per minute during the procedure. I was given more and more of the twilight medicines, but nothing helped.

After the procedure, I continued to shake in pain. I was dismissed home and told to take Tylenol for the pain. The pain never went away. Moreover, I began experiencing very serious symptoms including intense head, neck and arm pain, dizziness, nausea, blacking out, chest pain, shoulder pain, pins and needles in my arm and hand, and I lost feeling in parts of my hand and shoulder. The pain and pressure in my head and neck would get so bad I thought my head was going to explode.

I went for a follow up appointment two weeks after my port was placed. I expressed my concern about these symptoms. The interventional radiologist told me I was just sensitive to pain. I was given a referral to a pain management doctor.

I tried to endure the symptoms, but everything was growing worse day by day. I contacted my ID doctor and told him there was something wrong with my port. He told me to go to the emergency department (ED). So, my mom and I drove nearly 400 miles to the ED at the hospital where I had my port placed. The doctor who saw me in the ED was only a resident doctor. He simply consulted the doctor's notes from my interventional radiology appointment and told me to go see a pain specialist. I was sent home even though I was shaking and screaming in pain.


(Link to Part Two click here)