Part I: Dr. Old School, Diagnosis and Denial

Maybe this will sound familiar to you. Pesky nosebleeds that, over time, become prevalent, preoccupying and pernicious.

I have suffered from nosebleeds since I was a child. Other than that, I had been in excellent health, so my doctor never thought much of them. By my late thirties, the nosebleeds had gotten so bad that I sought out an ENT for help.   I’ll call him “Dr. Old School.”   I’m not criticizing him.    In fact, I respect him.  He’s a great doctor. Yet for me, he represents a way of thinking that belongs to the past.

What initially drove me to see him was an upcoming business trip to Korea. I was worried about having a nosebleed over there or, worse, on the plane somewhere in the middle of the Pacific Ocean.     To my surprise, he pulled out his cauterizing gun right as we were talking and used it on the inside of my nose, assuring me that that would take care of the problem.  Thankfully, it did for that trip.

As time went by the nosebleeds returned.   Dr. Old School decided that, to cure the nosebleeds once and for all, he needed to put me under anesthesia so he could go in and cauterize everything that needed to be done. It was simple to him. A quick draw of the cauterizing gun and my nosebleed issues would be resolved.

After I awoke from the procedure and talked to him, I could see that he was a bit shaken.  He said I bled a lot; he almost needed to give me a transfusion.   When I went for my follow-up visit, he told me that he knew why I had nosebleeds.  “Good,” I said.  “Well…,” he replied, and he handed me a Wikipedia article about HHT.  Up until the cauterization incident, no one had ever mentioned HHT to me. This includes my long-time general practitioner, a dermatologist and two other ENT doctors. Even Dr. Old School didn’t suspect it until I had my surgery. Unfortunately, his only advice was, “I have a couple of other patients with HHT, and you’ll be seeing a lot of me.”

So that’s it? Is there a cure? Are there treatments? How do you know!? Dr. Old School was pretty certain about the diagnosis but his idea of treatment seemed outdated, limited and, needless to say, left much to be desired.   You can probably see why I gave him his nickname.

Needless to say, I was not very hopeful. At the time, I felt afraid that I would be stuck with nosebleeds for the rest of my life with no hope for any improvement, let alone a cure.

While he told me about the condition, I glanced through the article and saw a picture of a man with red spots on his lips and tongue. I was convinced. Not that I had HHT, but that I definitely did not.  Nope, not me!   I could not accept the idea that I had a genetic condition.  I felt further validated when I went to a dermatologist who didn’t think that I had it either.

So, even with nosebleeds, even with Dr. Old School’s diagnosis, I was still in complete denial.

Stay tuned for Part II!