My Disease

I was diagnosed with a disease almost seven years ago, but I am just figuring this out now. The disease is bronchiectasis, which is a disease of the lungs. Here is a description of the disease.

I decided to write about this today and began my process by looking in my emails for the first time that I used that word. I found something very odd. I do not remember this at all, but this is the first email that I sent to my wife:

The first thing I asked myself is who is "she", and my second question was "how did I not remember this?" I looked on my calendar and discovered who "she" was. The doctor I am going to see in a month was someone I saw before! The next appointment is scheduled for 4/2.

As far as why I don't remember this, I am not sure. I actually saw this same doctor three more times after this diagnosis and once before! I saw her in late 2016, and then twice in 2017 after that April 2017 test and then again in 2019. When I reached out to her recently, she didn't remember that she had seen me. She was a big part of my lung treatment for two full years. She is at Baylor, where Marcia Katz used to treat me. Marcia, who was an expert in cystic fibrosis and determined that I don't have that, handed me off to another doctor there.

I am going to see Dr. Barto for a second opinion. I started seeing a pulmonologist in September that I really like. He is a young person, and I feel like he isn't a bronchiectasis expert. He has treated me three times now with steroids (40mg for 5 days), and I have appreciated this. I found this doctor through a referral from an ear, nose and throat doctor, who thought I might have bronchiectasis but realized he was not the right person to treat it.

So, I originally planned to write about my disease, but I have written about my poor memory of my original diagnosis. Getting back on track with my intent, I have struggled for many years with breathing issues. When I was a kid, I took a pill for wheezing. I outgrew this. In 1994, when Fran and I bought a house in New Jersey, I got hit with an infection in my lungs. This developed into a severe breathing problem. When I moved back to Houston, it was recurrent, and I went to Dr. Sam Weber, may he rest in peace. Dr. Weber diagnosed me as having nasal polyps and a deviated septum, and he fixed this in 1998. I had the surgery again in 2002, but I decided afterwards that I never would again.

For two decades now, I have had no surgeries. What I thought was going on was that my nasal polyps were leading to blockages that resulted in nasal infections, which were migrating to my lungs. The treatment was pretty simple: prednisone (oral steroids). I would lose my sense of smell, take the steroids, regain my sense of smell and clear up any wheezing. Sounds great, but steroids are dangerous. I developed osteopenia, and I had to treat that. This may not be a result of taking steroids, but it probably was. There may be some other issues too.

After my tragedy almost two years ago, I came home from two months in two hospitals with a lung infection. There were so many things to worry about, but we added this one to the list. I went and got an x-ray to make sure it wasn't pneumonia, which it wasn't, and we treated it with an antibiotic and a small amount of steroids. I got better. In late 2023, I had a terrible flare-up, and I went to see my ENT doctor. He referred me to my current pulmonologist, who I saw in September. I was really struggling with breathing. Later, after treatment with steroids, he had me get a CT scan, which confirmed in his view that I suffered from bronchiectasis.

I just finished treating the third flare-up since late 2023. The second one was in November, and then the third one was in February. I have three ways I can tell that I am flaring up: Climbing the stairs becomes difficult, taking a walk becomes challenging, and doing push-ups becomes almost impossible. More than these things, though, my noises at night bother Fran!

Since I started studying this disease more closely over the past five months, I have realized that the causes vary. Many people develop it from genetic factors. Well, I am guessing that is the case for me. My biological mother suffers bronchiectasis too. I am trying to better understand this. Perhaps it is a deficiency in the protein Alpha-1 antitrypsin. Here is a study on the topic of AAT deficiency.

I am seeing this second doctor because I want to know what to do. Infusion of AAT may be the route to pursue. If not, I am satisfied with the short-term high-dose oral steroid treatment. I also take Trelegy, a fantastic inhaled drug. My daughter has suggested finding some non-pharmaceutical approach, which makes a lot of sense. I have spoken with a nutritionist about finding the right herbal approach.

So, bronchiectasis is a pretty rare disease. I had never heard of it before I received (and forgot about) my diagnosis in 2017. I am managing fine, so far, but maybe some readers can provide advice if they have it.