To the ER
On Sunday night, July 3rd, things were getting worse. I was breathing heavy without actually doing anything strenuous. I was just sitting. What’s worse, I was feeling pain in my chest. I told my wife it was bad enough to take me to the ER.
The closest hospital is a small one in Oberlin, so we headed there. As soon as they heard the word “chest pain” they were concerned and hooked me up to an EKG machine. I knew I didn’t have a heart condition, and wasn’t surprised that everything there was normal. They took me for chest x-rays and we waited as the doctor looked them over.
It was not a good sign when instead of getting results from the x-ray, I was told the doctor now wanted a CAT scan and the nurse started putting an IV in my arm. I’d never had a CAT scan.
Finally, a couple of hours after first arriving, the doctor came and told us that I had pneumonia and that my lungs looked “pretty bad”. He gave me prescriptions for a couple of antibiotics, a referral to a pulmonologist and told me to follow up with him ASAP.
The days afterward didn’t get any better. I missed three days of work. On Thursday night the 7th, I was supposed to take my daughter to an Indians game but was still too sick. I had bought tickets to the Cleveland Orchestra for Friday night and we had to cancel that, too.
The following week I went back to work. Despite the rest and the antibiotics, I wasn’t feeling any better at all. But I couldn’t miss any more work. I also had developed a dry cough. This week, I saw the pulmonologist in Lorain who showed me my CAT scan from the ER.
The inside of your lungs is supposed to look black on an X-ray or a CT scan. Mine were full of white splotches. The doctor said this was very abnormal but he couldn’t tell exactly what was wrong. There were too many possibilities and more information was needed.
He told me that it would probably take a bronchoscopy to be sure what it was, but that he was leaning towards “hypersensitivity pneumonitis”. A bronchoscopy is a procedure where they stick a scope up your nose, down your throat and into your lungs. A doctor can look around and also use tiny forceps on the scope to take very small tissue samples. He gave me a number to call at the Cleveland Clinic and said it would probably have to be done at their main campus.
The Cleveland Clinic number was to their department for Interstitial Lung Disease. It was the first time I’d heard the term, but hypersensitivity pneumonitis is a form of ILD. It comes in many different forms, you can read more about it here. I was able to get an appointment with a specialist about a week out.
Some ugly numbers
On Saturday, July 23rd, I received some results in the mail. Every summer we have a voluntary health screening at work. They draw blood and do a pretty thorough battery of tests on it. Most of the focus is on your weight and cholesterol numbers, but the reports include a lot of other information as well.
Healics is the company that does our screening, and I knew something was wrong when they actually called me at work on Friday. That’s extremely unusual. They told me that a couple of my results were something that I should call my doctor about right away. Check out the numbers below. They are from the past 5 years, with 2016’s results on the left hand side.
I did call my primary care doctor, Dr. Hussain, on Monday, and she wanted to see me immediately. I got her up to date on everything and she pulled up my CT scan from the ER. She noticed something on the CT scan that no one else had. She saw lesions on a couple of my vertebrae.
I didn’t know it at the time, because she didn’t say it. But I know now what she suspected. The pulmonologist happened to call me while we were there, so I handed her the phone so she could talk with him as well. She excused herself and left the room to talk to him. Not good. When she returned, she made me an appointment for me with an oncologist about the bone lesions.
Myeloma?
On Wednesday morning, July 27th, we went to see Dr. Escuro, the oncologist. We were in denial at the time of what kind of a doctor an oncologist is.
They took blood and he ordered more tests, including a 24-hour urine test. I had to pee in a big jug over 24 hours and take it back to the lab at the hospital. He was concerned that I might have multiple myeloma, a cancer that occurs in bone marrow.
Other tests that he ordered were more CT scans, this time of the brain and abdomen, plus a nuclear bone scan.
On Friday, I saw the pulmonologist from the Cleveland Clinic, Dr. Khabbaza. I had to do some breathing tests while I was there. That wasn’t fun. You have to inhale as deeply as you can and then exhale as hard as you can, for as long as you can, all into a large tube. We had to start over a couple times because in my condition it was painful and made me cough. My breathing was still going downhill.
He looked at the CT scans of my lungs and said that, indeed, a bronchoscopy was necessary to know exactly what was wrong. However, he was leaning towards sarcoidosis, which is a different form of ILD. We went into the weekend with more questions than ever.