“Don’t let the old man in,” sang Toby Keith before he died, quoting Clint Eastwood on how he’s managed to live for so long.

I’ve always believed in not fighting my age but rather being the best at my age that I could be. I felt that within reason, there’s not much one can do to keep the old man away, it’s a natural process that can’t be defeated, t-cells and all of that.

In the space between medical appointments, which seems to be about a month now, I find myself wondering if I really am diseased. Except for being fat and out of shape, which results in shortness of breath and heavy limbs, I feel just fine. I don’t see anything wrong with being able to nap at will. Always feeling full and having a distended belly is an irritation but lots of men have bellys. The pain in my fingers I’ve had for years.

I measure my blood pressure each morning. It’s usually elevated at first but then I meditate and the second measurement returns just fine. I use my Kardia and do a 12-lead ECG just before I take my blood pressure and I almost always get a reading of sinus rhythm with wide CRS; what I’m watching for is atrial fibrillation, and that’s only happened once since they shocked me, although odds are that I’ll have to be shocked again within a year. I’m not joyful, but I’m okay, seemingly normal. I’m grateful.

And then I have an appointment and the PA say’s I’m lucky and should live five years.

And then I have an appointment and the doctor says he has several patients with the same disease that should have died within five years but didn’t. He wants me to set a record; aim for eight years.

He says that when he autopsies his heart patients, about 30% of them have amyloidosis and his opinion is that we’re in the dark ages with our understanding of this disease. It’s not just 1% of society that gets it, it’s much greater. No doubt he’s right.

Most recently, I met with a new cardiologist and was impressed with his compassion and ability to communicate through storytelling. He said my case was complicated because I had four issues. The first was that I caught the disease early. Offsetting that was that the doctors also caught it early so my treatment began before Amy had a chance to advance even further. Two issues have to do with the cost vs. benefit of the drugs I’m on. They keep me from having a stroke or heart attack but they might cause damage to my eyes, kidneys, lungs, and thyroid – it’s a matter of regular blood work and monitoring.

The fourth issue is that my numbers seem to indicate that I’ve experienced a pretty severe heart attack. The challenge is that none of my scans show that. The fear is that the protein deposits are masking the damage to my heart wall.

It’s a slippery slope. In Dr. D’s words, “You’ve got to maintain a young man’s mind with your old man’s body. If you reverse it, old man’s mind with what you think to be a young man’s body, if you give up hope, well…”

Tomorrow I’m up at 5 am to drive to the other side of the state. I have an appointment with a doctor who just opened up a Phase 3 trial site using CRISPR-Cas9 genome science which has shown good promise in possibly rolling back the protein deposits. We’ll see how it goes.