I haven’t written here on the blog all month because I’ve been dealing with a medical emergency with my partner, Ryann. It has taken almost the entire month to figure it out, and we are still waiting on final test results. Here is a more detailed update.
Ever since he got Covid-19 in March 2020, Ryann coughs for a while after getting minor colds. So when he coughed throughout February, we figured it was just the aftereffects of a sinus infection. However, at the beginning of March the cough got much worse. By Friday the 3rd, he couldn’t talk without being cut off with a severe cough.
We went to our clinic’s 24-hour urgent care, and they took a chest X-ray and ordered a CT scan, but their own CT scan equipment was out of order. We had to go to the local ER to get that scan, and they sent him home after making sure there wasn’t a clot. They told him to follow up with his Personal Care Provider (PCP), and luckily there was already an appointment made for Wednesday the 8th.
When we went in for the PCP follow-up appointment, Ryann’s condition had worsened. He was breathing shallowly, coughing frequently, and fading in and out cognitively. His doctor was very worried, and she ordered thorough labs to investigate. She also ordered a pulmonology referral for the upcoming week.
They had Ryann stand up to walk while checking his blood oxygen level. After less than a minute, he was lightheaded and his oxygen was at 88%. For reference, doctors start to worry if that amount drops below 94%. The doctor ordered an oxygen machine so Ryann could breathe with assistance at all times, and told him to return to the Emergency Room if his symptoms worsened.
A few days later, Ryann’s breathing and coughing was even worse despite the oxygen, and we went back to the ER. They re-did the chest X-ray and CT scans, but again could not determine the cause of his symptoms and sent us home after several hours.
Then on Thursday the 16th we had to go to a larger clinic in another town to see the pulmonologist. Ryann was subjected to more advanced tests there, and even the specialist was concerned but baffled. They did a test to check his lung capacity, and his lungs were not filling up. The pulmonologist ordered a bronchoscopy which sends a camera into the lungs to investigate directly and take tissue samples.
The next evening, on Friday the 17th, we had gone to bed when Ryann kept getting notification from his apple watch that his numbers were at dangerous levels – his heart rate was sustained at 130-150 bpm for over three hours, and when he stood up to use the bathroom, his oxygen dropped again to 87%. He chatted online with a health professional who encouraged him to call 911.
When the ambulance attendants arrived, they determined that Ryann needed to be brought into the ER immediately due to respiratory failure. They moved faster than I’ve ever seen and called a Code Three in his room to stabilize his breathing. I was lucky that they let me stay at his side, and it was a frightening night. They gave him some medicine to bring down his elevated heart rate. This helped some, but he was still wheezing and coughing, unable to take deep breaths. The doctor admitted that it was an odd case, and once came by to stand and stare at the vital signs with a look of puzzlement on his face. At last, Ryann was told he needed to be hospitalized for further testing and treatment.
I went home around 1 a.m. to get some sleep. For the next five days, I was back and forth between home and the hospital while Ryann waited out the weekend for the specialists to get in and start moving through their waitlists. He encouraged me to take care of myself, and I begrudgingly left his side after several hours each day. They treated him with a heavy round of antibiotics for signs of sepsis, but this was not the root of the severe symptoms.
On Tuesday, he had an echocardiogram (to rule out structural issues, it came back clear) and the long-awaited bronchoscopy. This revealed a rare condition called Hypersensitivity Pneumonitis (HP). This means the lungs flare up in response to an extreme allergic reaction. He also had pneumonia on top of this. His lungs showed immense inflammation, and once this was confirmed, they started him on steroids.
We went home on Wednesday, but he will be taking the steroids for another six weeks.
The danger of HP is that it is an immune disorder that requires lifelong management. If the lungs are inflamed for too long, pulmonary fibrosis – or scarring of the lungs – will develop. This leads to a dramatic reduction in overall life expectancy. The only way to remedy this alongside steroids is to avoid the allergen causing the inflammation.
As for the allergen itself, the test results will be interpreted for us on Monday, the 27th. They are running samples against a panel of possible allergens that are in our living space, like dust, mold, and pollen. If staying in this building means prolonged exposure to the allergen, we will have to move.
After this update, I’m going to resume regular blogging. Updates on Ryann’s health will be posted on his CaringBridge site.
Thank you all so much for your support and concern during this time. It means everything to us.