As of today, it’s been about 4 years since my last “scare”. I am not sure where this came from or how I even got this next scare, other than my sister telling me all this time I have an autoimmune disease. After the Bell’s Palsy episodes, I did not feel stressed or out of balance with myself. I took up hiking and I found a trail on one of the mountains in VA to hike. I walked the trail every weekend for several months. Towards the end of May 2019, I started to feel tired all the time. All I wanted to do was sleep. I had to force myself to get up every morning and do my day-to-day routines. I STILL hiked up that mountain on the weekends. I contributed to being out of breath due to being overweight and trying to get back into shape. After I finished with my hike, I would take a few deep breaths and wait until my breathing returned to normal. I didn’t even think anything of it. After coming back from a weekend in North Carolina, I was having trouble breathing. Everyone said my complexion was a grayish color. I made an appointment with my doctor. He listened to my lungs and heard something going on. The “alarming” thing was my pulse ox was low. At the time I did not even know what that represented. Once I found out that the pulse oximeter measures the level of oxygen that your body needs to function daily, mine was low. The normal range is 95 or higher, mine was 90. He decided to take X-rays of my lungs, when he showed me the x-ray, it scared me. I have never seen my lungs look like that at all. The doctor diagnosed me with pneumonia. He prescribed my “favorite steroid”. Prednisone.
After one week of this, going into Memorial Weekend, I still was not feeling 100% because normally when I take Prednisone, I bounce back quickly. Going into the first weekend of June, it was the month end at work, I was thinking to myself, I can’t afford to be sick, I have way too much to do. I think it was on a Saturday night, I went to Urgent Care up the road from my house. Once I got into a room, one of the doctors there examined me, looked at my medical records as that Urgent Care was tied in with my doctor and the hospital in Roanoke. She listened to my lungs and took my pulse ox, it was 87. She ordered X-rays and pulled up my x-rays from my doctor and compared them to the x-ray that I did. I’ll never forget what she said. “I never go against a patient’s doctor, but this does not look good, and you belong in the hospital.” I will call an ambulance to transport you to the hospital unless you’re okay driving yourself there. I knew it was serious.
I drove myself to the hospital, got triaged right away because the doctor at Urgent Care called ahead and let them know I was coming and was a case that needed to be seen right away. By the time I got to the hospital and triaged, my pulse ox dropped to 85. They immediately started oxygen breathing treatments. WITH the oxygen, my pulse ox went above 95. After a couple of hours, they took me off the oxygen and it went back down into the 80’s. They told me that I would be admitted into the hospital for further treatment and evaluation. I was sent to the ICU on the pulmonary floor because at the time there were no beds available on the regular pulmonary floor. I called my sister to let her know that I was in the hospital due to my oxygen levels not being in the normal ranges. I would know more in the morning when the doctors saw me. By this time, I was moved out of ICU to a regular room. The doctors made their way to my room, they did an examination, but this time they did and ordered a MRI because it shows more than an X-ray can. They did not like what they saw. They told me that they did not know what they were dealing with and would not prescribe anything until they did a biopsy of my lungs before deciding what the course of treatment would be.
I was in a full-blown panic and called my sister to let her know what was going on. She was in a full-blown panic as well because she was living in Michigan, and I was in Virginia. She was not able to drive anymore with the condition of her Multiple Sclerosis. There are no hotels that have reclining chairs that she is medically required to have because she can no longer lay flat on a bed to sleep. We agreed that if it was worse, she would figure it out and come to Virgina. After I calmed down, I called my former roommate and best friend who is a pulmonary nurse with a prestigious hospital in Michigan. We talked for a long time; I told her what I remembered and what the doctors told me. At time of admission to the time I called Joy, I started out on 2.5 Liters of oxygen per minute and moved up to 4.5 Liters of oxygen per minute. She told me that this was not meant to alarm me, but she needed to prepare me for what was to come if it got to that point. She told me if my oxygen was moved to 6.0 Liters per minute, I would be moved to the ICU. I kept in touch with her the whole time I was in the hospital and was grateful beyond belief she was in my life and a pulmonary nurse.
My sister and I talked the morning of the biopsy. With everything that happened with our mother’s cancer and my situation, this may sound dramatic, but to us, it was very serious. I let her know where everything was in case something did happen even though it was a routine biopsy. We both said I love you to each other. I said I would call her when I was done with the biopsy. She knew it would be a while before she heard from me because I do not do well with anesthesia. It takes me a long time to get out of it. It was late in the afternoon, early evening before my sister heard from me. I told her that everything was okay and had to wait until the morning for the results. I called Joy in the morning to let her know that I was okay and waiting for the doctors to come and let me know the results of the biopsy. Joy being Joy gave me a list of questions to ask when the doctors were there. The doctors finally got to my room mid-morning and told me that the biopsy results were normal and there was nothing serious to worry about. However, they still did not know what it was and called it Cryptogenic organizing pneumonia. They felt it safe to come up with a course of action. While I was in the hospital, I was put on 40 mg of Prednisone. They kept me there until Friday because I finally came off the oxygen that morning and I was stable. My course of treatment for the next 6 months was to be on 40 mg of prednisone weaning down to zero at the end of the 6 months.
At the end of the 6 months of being on Prednisone, I was feeling like my normal self. However, my weight went back up to 300 and my sugar was through the roof. I had to get another MRI to see what was going on with my lungs. It all came back clear, and I was released with no follow up visits. In November, it was one month of being off the Prednisone, I started to feel the same way I did in June, I decided that I did not like the pulmonologist that I had when I was in the hospital and called my primary care doctor and told him my thought process and requested a referral to a different doctor. This new pulmonologist agreed with my thought process. Prednisone reduces inflammation and it also “masks” the problem, which was why my MRI was clear in October. He also was the one that confirmed my sister’s suspicions of having an auto immune disease. He decided on a different course of treatment. I already had a C-Pap machine due to my sleep apnea, the doctor added oxygen with my C-Pap machine for the next three months. He put me on 2 different steroid inhalers that did not come from the Prednisone family, but to help with the healing of my lungs. At the end of the three months, I was given a clean bill of health with follow up visits every 6 months to make sure that the issue did not return. With the “confirmation” from the doctor about having an auto immune disease, one would think that everything I went through, it would be the starting point of my lifestyle change…