Medical Adventures #8

For Mr. K, who never misses a beat.

September 2023: But Wait, There’s More!

So now that I had an almost-diagnosis I wanted to learn more. Of course I started Googling. That’s when I read:

• Amyloidosis occurs in around 10 out of a million people.
• There is no cure.
• The median survival time from diagnosis for people whose hearts are affected is 4 months to 2 years.

You know how you know that you are going to die someday, but you just don’t know how? You always hope it will be after a long, healthy life, after you have accomplished everything you have ever wanted to do, on an evening you have spent with your family and all other loved ones, and you will go to sleep and dream and wake up – well – wherever it is you wake up after you die. Looks like maybe that wasn’t in the cards for me. I might die in the next couple of years. But wait, two years was the median. I could live longer than that. Three, four? Would four years be enough time for me? At the end of four years could I say “Okay, I’m finished now.”? I was 63. My grandmother lived to 90, my parents well into their 80s. I felt like I had just had 20 years slashed off of my life.

And it wasn’t just that my life would be shortened, it was also what it would be like while it was being shortened. From what I read, my heart would continue to fail. I would retain fluid. It would be harder to walk and to move around. I pictured myself as one of those nice ladies you see in Target on an electric scooter connected to a portable oxygen tank. Well, those gals were probably healthy one day, and then their health went kaput. Still, they were smiling and friendly and seemed to be living a good life. I think.

I would say it didn’t seem fair, but when is life ever fair? I had had 756 months of great times with lots of interesting adventures, a fantastic job in deaf education advocacy, travel all over the world, a caring and loving Mr. K, two wonderful Darlings, a great place to live, financial stability, and a lot more. Not everybody gets that. What did I do to deserve it? Was that fair? No, this was just something that happened. Why me? Why anybody? There was no use in trying to figure out some kind of reason. It just was the way it was.

Still, I tried to wrap my head around my short life expectancy. What did it feel like to have only a few years to live? You know how you hear about people with a bad disease who talk about how much they love life and appreciate everything around them, and every day is a blessing, even their illness? I always wanted to be one of those people, without the being sick part. Now that I knew I might have amyloidosis my view on the world hadn’t yet changed. Would it?

But first things first, it was time to head home to get RunningBarb to an Amyloidosis Center of Excellence. I learned that there was one on the East Coast, not too far from where I lived. I called to make an appointment. The receptionist was very nice and helpful. She told me they needed all of my medical records. No problem, I was able to collect most of them pretty easily. But there was a hitch. The Big Boy Hospital had had a computer attack and my records were unavailable for days. I pestered them constantly, explaining that I had to have the records asap. I felt a little bad, because in prioritizing my request that meant they were de-prioritizing someone else’s. In health care (as in much of life, I guess), you need smooth and efficient administration so that all the right information can flow. 

Eventually I had the records in my hot little hands, and I had an appointment with Dr. Advanced Heart Failure Cardiologist. It was a little jarring to walk into an office with that name on the door. Ironman RunningBarb, now with advanced heart failure. Or – Ironman RunningBarb! Now with Advanced Heart Failure!

Dr. Advanced Heart Failure Cardiologist was about the nicest person I have ever met. I sat there pouring out my story. His eyes were on me the whole time, and his body language said he was paying attention. No phone checking. No looking at the clock. No one knocked on the door to ask him a question. No interruption at all. 

He just listened. 

Then he asked me a few questions. 

Then he told me what he knew. He said:

• I shouldn’t pay attention to what I read on the Internet, because it is mostly outdated
• There was no medically known way to undo the damage that amyloidosis had done
• There is no cure for the disease, but with treatment, he believes they can stop its progression “in its tracks.”

My mind started whirring. Okay, looks like running is finished. But I can still walk, right? Biking? I can get an e-bike. They’re very popular now. And if my hiking is limited to a few flat miles, well that is not the end of the world. I still will be able to get out into the woods. At any rate, it did not sound like my death was imminent.

But first there were a few procedures that needed to be performed. The first was a right heart catheterization. Now you may be familiar with my left heart catheterization that occurred near the beginning of all this mess.  Well, time to show the right side some love! In this procedure Dr. Catheter Cardio slices open your jugular vein – yes, the one in your neck! – and runs a tube through the opening down into your heart. At the end of the tube is a pair of forceps. He snips off pieces of your heart. Then he pulls those pieces out through the tube. He takes those bits, tosses them into a box, and sends them off to the Mayo Clinic in Rochester, Minnesota. There, smart people analyze them using something called a “Congo red stain,” which sounds like something you might find on your couch after a big party, but it’s not. From their analysis they determine whether or not you have amyloidosis. 

Another part of this procedure is an echo echocardiogram, where they are actually taking measurements inside your heart. You’ve heard the song that starts “I’ve got you under my skin,” right? Well, the next line is “I’ve got you deep in the heart of me.” RunningBarb can relate!

But that’s not all. There is also a bone marrow biopsy, where a nurse practitioner takes a long needle and sticks it into your hip bone. From there the needle slurps out your marrow. I’ll never feel the same way about beef broth again.

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