Wednesday, March 18, 2015
About five days after my last post here, what I thought was the flu totally knocked me off my feet. Several days later, I felt better and thought I was on the mend. But no, IT hit me again, this time leaving me with shortness of breath and a nearly constant cough. I had spikey fevers and chills. I had no energy. As soon as I received confirmation that my new medical insurance was in effect, and a good friend had crabbed at me for not going to the doctor sooner, I hightailed it to my primary doctor.
And so began a journey to solve a medical mystery. What was wrong with me? I could not think of anything else.
My primary doctor admitted me to the hospital. There my attending physician, Dr. M, gave me a preliminary diagnosis: pneumonia. After tests and X-rays, he added dehydration, failing kidneys, hypercalcemia, and pneumonia in the connecting tissues around the small air sacs in the lungs. Heavy-duty hydration took care of the first three, and heavy-duty anti-biotics took care of the pneumonia. I made a remarkable recovery, according to Dr. M when he discharged me.
For the first week at home, I had a normal recovery: sleeping a lot, eating, walking, etc. But the following week, I began to lose ground. About 2 weeks after my hospital discharge, the spikey fevers and chills had returned, the shortness of breath and coughing. I headed for the ER of the large University hospital which is also a teaching and research hospital. The ER doc thought the pneumonia had returned, put me on anti-biotics and admitted me.
My Internal Medicine team at the University hospital consisted of an attending physician, Dr. S, residents and medical students. I was a patient as well as an educational tool, something I really like. So my Med Team visited me in my room not long after I arrived there, and immediately started asking questions about my experience with this illness. They decided to dig deeper to find out if there was an underlying condition contributing to the pneumonia and I heartily approved. I felt better on oxygen and really wanted to solve the mystery of this illness. About 12 hours later, they decided to stop the anti-biotics. They didn't think the pneumonia had returned.
The next 2 days were intense and full of blood draws, nasal swabs, CT scan, a bronchoscopy with lavage and biopsies, and a heart ultrasound. Because there was a possibility that I had something infectious, I was moved to a private room for isolation and anyone coming into my room had to gear up with gloves, protective gown, and mask. The private room really helped me get some sleep which I really needed, but a hospital is still one of the noisiest places at 2 a.m. We had to wait over a weekend for all the results, especially the lung biopsies, and I met my Pulmonology team during that time. Gradually, some results trickled in. Malignancy was taken off the table fairly early. A plethora of possible nasty bacteria and viruses also were knocked off the table. I was improving, working with Physical Therapy, walking, eating like there was no tomorrow.
Monday afternoon we finally got the biopsies results: Interstitial Lung Disease. Infection was still on the table -- they had some possible nasties that grew slowly in culture if at all -- as well as drug toxicity, and my Sjogren's Syndrome. My new pulmonologist, Dr. K, ordered a Pulmonary Function Test for the next morning, then I could go home.
As a Successful Patient, I understood how medical detectives work -- they often don't have a solid, definite answer and must be patient as the body reveals what's going on. And so it was with me. They were certain of the Interstitial Lung Disease but not its cause, and the cause would determine the treatment. So, I came home still on oxygen to wait and see what happens.
Waiting with patience can be really hard. I'm used to dealing with chronic illness, so I've just settled into a recovery and taking care of my other lovelies. I'm grateful that I don't have a malignancy. I'm grateful that this lung disease is treatable and not terminal. I'm immensely grateful for friends who have been taking care of me. It will take me some time to return to 100% and figure out my new normal after I have the pulmonary re-assessment in early May and my doctors determine the best treatment for me. I expect that it'll take time for me to return to regular posting here, to my normal essay-writing schedule for clients, to my fiction writing as well as my part-time job.
So, that's why I disappeared for a while. I'm back. Stay well out there.