After my diagnosis, my new pulmonologist said “if I was in your shoes. I’d get to San Diego”. That initiated a flurry of research about my illness and my options. I even went to Twitter and learned my account was suspended in 2018 for selling Rayban sunglasses. I don’t know who or how, but I set up a new account and discovered CTEPH support groups and University programs. I teach (barely) at the Medical College of WI, mainly because that allows me to have access to their electronic library, which I use often. I wanted to know, why did I get CTEPH?

I found articles stating that patients should go to a ‘center of excellence’, defined as a program that has done 50 PTE (some call it PEA) surgeries per year for several years with mortality rates below 5%. I found articles showing a tight correlation between cases performed and mortality, ranging from 2% for the busiest to 100% for the place that did one. But the articles do not tell you who is who, which was frustrating. From what I could find, UCSD has done the most by far (I was patient #4669). I saw on Twitter that Temple celebrated #300 a while back. I believe those are the highest in the US, but please comment if I’m wrong.

I’m lucky because my situation, I learned later, was especially difficult. I had a lot of disease in the smaller branches of my pulmonary vessels, areas that were not operated on a few years ago, but where UCSD has been a leader.

I’ve written that my insurance initially denied my request for surgery. But I don’t want to get into an angry discussion about that, because I know the role that insurers play in cutting healthcare costs. I am grateful that their medical director called me on a weekend to discuss my rare case. He promised to address it with the reviewers on Monday, and they approved it a day or two later. I had also filed a complaint with the state immediately after the denial, but that hadn’t gotten to them and I know it did not play a role in their decision.

The day-by-day stuff after that can be found back at , under ‘absence’, for those interested.

A couple things people may find interesting: the crud in the picture is from my pulmonary arteries, NOT from my airways. It isn’t ‘clot’, technically. It was – but the clot very quickly fuses and becomes part of the artery’s wall. Surgeons cannot even see it after blood is drained from the lungs; it looks like any other vessel. They use the perfusion scan — a fuzzy image – to match up with the Xrays and decide where to go. Each piece of crud in the photo blocked blood flow to a wedge of lung tissue, in some cases a large wedge. My lungs were in very bad shape!

Tissue from CTEPH

The surgeon(s) must do an endarterectomy — the surgery often performed on the carotid in the neck. That means carefully dissecting from the largest part of the vessel, between the inner lining (intima) and the next layer (media), and following it down each branch into the lung. They use a tiny forcep, named after my surgeon as I’ve mentioned before (Dr. Madani). He was such a nice guy — nothing like I expected. He exuded kindness and confidence, and I was in deep need of both.

Again. there are many more details in other places, and knowing me I will probably repeat them here. My intent today was to write about the things that I worry may have caused my problem — although at this point there is no evidence that they did, or do. The Packers are playing, though… so it will have to wait.


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