That question hits me often – especially as the father of three. Why did I get CTEPH, a rare problem that might be more common than we think?

I sometimes call myself a medical scientist. I do that because the most important thing one learns while getting a PhD is how to think scientifically. How to be aware of bias. Learning to disprove the null hypothesis (Google if you are interested and it will be explained better than I can). How to do literature searches and extend them with a citation index (of course in the 1980’s that mean going up and down stairs in the ‘stacks’ a couple times per week, to check the new editions and find the articles cited in the past to make sure you didn’t miss anything). The WORST thing possible would be to learn that the project you are working on has been completed by someone else somewhere else, maybe in a better way. That would mean restarting your research and changing direction.

I use the term just as teachers are always teachers, docs are docs, and nurses are always nurses. Electricians are always electricians. Plumbers are plumbers. Those skills are permanent, even if a person retires. I’m sure I’m missing so many people… chefs who now do different jobs. Accountants. Salespeople. Businesswomen and businessmen.

But my nature is always ‘why, and how do we know?’ I have disagreed with other docs many times over the years. Sometimes I’m right, sometimes I’m wrong. I’m almost always disappointed that the other docs aren’t more curious. A patient diagnosed with dementias who never had dementia. People with broken hardware whose own doc refused to believe it and wouldn’t see her until I ordered a CAT scan. She was not crazy! Now we share something else! (hi, BTW)

Now it is my turn. Nancy, thankfully, pushed me to get a stress test. I collapsed. The APNP in the room began making calls to get me in to a cardiologist, who usually scheduled weeks or months out — he came to our town once per week from Milwaukee. The APNP suggested, as I was discharged (at my own demands) with an O2 sat of 88% – 90%, that I get a ‘cardiac calcium scan.’ That shows a narrow piece of lung tissue, and determines if the coronary arteries contain calcium. It cost $49 without using insurance. I was able to get one the next day!

Get Here ASAP!!

Two days later the coronary results hit my Aurora app — no calcium. Oh well, so much for CAD. Besides, who wants a median sternotomy? But on the third day after the test at my office, with a patient in the waiting room, my phone blew up. Call from the clinic operator. Call from that APNP at the stress test., Calls from my primary care. All leaving messages (because I rarely answer my phone at work): call us immediately!

Hi btw to the person who was there, and got cancelled… sorry! I called back – I don’t remember which office. “Get to us immediately. You can’t drive — should we send an ambulance?”

“I’m fine. I’m working… can I come after work? What is going on?” I hadn’t checked test results since the day before.

“We can’t get into that. We need you here now. Is anyone there who can bring you?”

“My wife is here and I guess she could.”

“Do NOT walk to her car. Have her get as close to the door as possible. Don’t use stairs. Have her pick you up and drop you in front and we will have a wheelchair there for you.”

WHAT a crazy morning. They wheeled me back for a chest CT. As I waited for that machine, a woman came up said “I’m squeezing you in for an echo”. I told her I can’t because I am waiting for a CT. “I know – it is all being coordinated and they will wait until we are done, and I’l bring you back.”

It is as if I was transported into the Canadian healthcare system!!! That is a joke directed at a Canadian who knows who she is. Hi, btw….

The next few days I had U/S, abd/pelvic CTs (to rule out cancer), and dozens of blood tests. The cardiologist ordered a real EKG. I saw him that same week and he heard, for the first time, that I had a gallop — a sound that occurs in some situations including pulmonary hypertension. I got the echo results back… the tech made some noises during the exam like “Hmm. Shhhh.” And “HMMMM, I’m going to have to move you.” Maybe they always say those things, I thought? Just looking for clues.

From my pulmonary arteries

The biggest blood clot may have saved my life, despite blocking much of the blood flow to my lungs. The bigger problem was all of the distal disease, in the tiny vessels to sub-segmental parts of my lungs, that did not/could not show up on a cardiac calcium scan. Articles earlier than 2020 say they can’t do much for those people. Then I read about Madani Forceps. Two weeks later I met Dr. Madani, in my hospital room, the night before my big operation.

The echo in town before surgery showed my R heart was 2-3 times too large. it didn’t show the hole between my atria call PFO, but that was found and repaired during my surgery. The EKG showed signs of pulmonary hypertension, and it all came together. But here is the kicker…. that one big mofo clot at the top of my pulmonary artery… I think I posted a picture? THAT showed up in that $49 scan. The following week, the pulmonologist who comes to town once per week — actually to Oshkosh, a town 15-20 miles away– said “I’ve been reviewing things for the past week. We need to get you to San Diego.”

I have a favor to ask of all of you. I have mentioned how much I love writing and I like it even more if someone is reading. Please forward this to any friend can you believe we find it interesting. I am looking at my numbers, which is easy to do on WordPress. Right now about 150 people read this each day. at one .10 years ago I was in the thousands per day – 800,000 per year. I doubt that will ever happen again but let’s see if we can boost things and I promise to keep working!


3 Comments

Stephen beck · September 11, 2022 at 8:08 am

Wow. So glad you’re better. I am a suboxone providing physician that followed your blog and learned so much from your posts. Suboxone saved my son’s life as well as many others I treat. I missed your posts over this past year. Obviously I didn’t know you were sick. I never even heard of your illness (I am an internist) and had to look it up on “up to date.” LOL. Good to hear you’re recovering.

Stephen Beck

    admin · September 11, 2022 at 8:29 am

    Thank you!! If you have a moment, email me: drj@suboxonetalk.com . You know how it is out there… state agencies begging docs to treat addiction while adding more and more regulations that keep docs away. I’ll save your email in case I need to ask about a tough case. You’re welcome to keep mine.

Stephanie Jane · September 12, 2022 at 3:58 pm

Please keep writing! This is definitely interesting to read. I remember being in your office maybe close to when you were scheduled to have the stress test. You’d gone up the few stairs to grab something from your desk and back down. You were winded and mentioned that you’d had some difficulty breathing. I think we talked about my dads bypass surgery and his symptoms leading to it. I thought about you a lot that week and when we got the letter I thought- oh no 😞

But can you believe we’re past it,you’re here and writing again!! Feels like just a few months to me, but the stress you’ve had I’m sure it’s felt like a lifetime! We’re so happy you’re well.

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