My Heart Is No Longer In This – Here Is Why

Late last year I wrote a post on Facebook that is no longer visible. One of the disadvantages of using Facebook is that when their automated systems disable your account, they don’t even give you the option of downloading all the content you published to your timeline. Nor do they allow the Wayback Machine or other Web archiving sites to crawl and index your timeline even if you made it public.

In that now-deleted Facebook post I explained why I stopped blogging last year, and I promised to write a post on THIS blog about my health. I never got around to it so I guess there’s no time like the present.

Over the past few years I’ve cut back on personal bloggery, and some business bloggery. I did it, I told myself, because I was so very busy with work (which is still pretty much true). But my energy was flagging.

I was invited to write a research paper for a Tolkien publication. That’s something I’ve always wanted to do and had put off. But being asked to write the paper was an unexpected honor. “I’m not feeling well,” I told them. “I’ll start working on it when I’m feeling better.” And eventually I did start collecting notes early last year. But I still didn’t feel well.

Many years ago I was diagnosed with Type 2 Diabetes. I’ve managed the disease pretty well for the most part. I’m not taking insulin, although one healthcare provider did try to start me on it a few years ago. I don’t tolerate insulin very well it seems. Nor do I tolerate metformin and statins very well. So controlling my self-induced chronic health issues is a challenge. I do it through diet and exercise (less exercise than when I was younger) and too many meds to name, although I take some pretty good (and expensive) medications.

Every year the doctors poke and prod me, ensuring I still have feeling in my feet and that I’m not experiencing the pins and needles sensation of neuropathy in my fingers and toes. I consider myself lucky or fortunate or blessed that after a couple of decades of living with T2D I haven’t lost any limbs, my eyesight, or my ability to walk on my own 2 feet. It’s not easy staying healthy when you love to indulge in all the foods that are designed to kill you.

A While Back, I Got A New Doctor

He’s retired now but a couple of years ago I changed health insurance coverage and had to find a new doctor. Got a great one. Loads of experience. And he didn’t mind arguing with me. I warned him I tend to be argumentative and need a little time to think about things before coming around to his way of thinking. Imagine getting a new patient like that during a pandemic, when you don’t know who’s going to go off on you for no apparent reason.

Well, this doctor suggested I try taking a new medication to help control my cholesterol better. High cholesterol and high blood sugar are related. Bet most of you didn’t know that. I didn’t know it until a few years ago. Well, they tell us these things but it wasn’t until a diabetes expert gave me a 1-on-1 session and explained a lot of things to me.

So New Doctor put me on a medication called Repatha. You inject yourself with it every 2 weeks. The first time I picked it up at the pharmacy I had to mention it by name to the cashier. A man standing in line behind me burst out: “Repatha! That’s a miracle drug! It brought my cholesterol down to normal! Nothing else worked.”

You’ve probably heard about how statins are miracle drugs. Well, the sad thing about statins is that they don’t work as well as originally promised. Unless you’ve already had a heart attack or stroke, statins don’t do much to lower your risk of having one. And about 1/3 of people can’t tolerate them. We stop taking them because of the side effects. Doctors told us we were crazy for years, but new research began reaching them a few years ago and they’re starting to listen to their patients about statins.

And Then My Insurance Plan Changed Again

At the start of 2022 my insurance plan shifted into a high-deductible mode. I was responsible for paying for a lot of things up front. That’s not so bad if you can put some money aside into a Health Savings Account, which I’m fortunately able to do.

But as it turns out, Repatha is expensive. I started paying $600 for it.

And then one day I got a letter from the insurance company saying they wouldn’t cover it at all (after I met my deductible). The long gobbledy-gook letters they sent me (I appealed the decision) boiled down to “you haven’t had a coronary incident yet so we’re not going to pay for this medicine that cut your cholesterol down from 320 to 150. Deal with it.”

The problem is that Repatha is still a fairly new medication. The insurance companies aren’t sure it will do the job (but they have no problem paying for statins).

“I’ll refer you to a cardiologist,” New Doctor said. “She can usually help patients with these insurance companies.” I’ll admit, I wondered if he was sending me to a scam artist. I didn’t want to be part of a fraud scheme, not even to get Rapatha – which so far is a miracle drug for me.

And She Didn’t Argue with Me about Statins

Although my New Doctor did suggest statins when he first began seeing me, after a couple of sessions of “I can’t tolerate them” he agreed “you can’t tolerate them – we won’t talk about them again.”

When I met the cardiologist I couldn’t help but blurt out in the first few minutes, “I’m not taking statins. I can’t handle them.” And then she proceeded to explain to me WHY I CANNOT HANDLE STATINS. It has something to do with my liver.

OMG there’s a doctor who is in touch with reality. Okay, it appears the cardiologist community got the message before everyone else.

But she wasn’t just going to write a letter to the insurance company to say, “Pay for this idiot’s Repatha.”

No, she had to put me through a battery of tests. And every test came back “inconclusive”. They couldn’t find anything wrong with me, but because in that first session I had also told her that “I get a little winded when I walk up hill,” she knew something wasn’t right.

If you’ve ever seen the animated movie Up!, you’ll remember the scene where (old) Carl and Ellie walk up their favorite hill, and whereas all their lives she had led the way with much energy and enthusiasm, one day she struggled to keep up with Carl. That’s what happens in real life.

One day you’re walking up a gentle slope and you think, “Damn! Why can’t I breathe?”

If it happens more than once, tell your doctor.

So They Gave Me A Nuclear Stress Test

I don’t have a problem with swelling in my legs and feet. I don’t have any other symptoms of a heart condition. I just have trouble breathing when I walk up a gentle slope.

By the way – I was able to to run up a flight of stairs just fine, and to carry heavy loads of 50-75 pounds up a flight of stairs. I struggled to do it twice in a row, but I could do it. So I felt like my heart was fine.

After the battery of other tests failed to find anything wrong, they gave me the nuclear stress test where they make you drink radioactive stuff and put you on a treadmill and send you to the ultrasound technician for an echocardiogram or whatever. Sorry. I took so many tests I get them all mixed up.

Well, the last one determined that I had a problem. The cardiologist’s office called me to schedule a hospital visit. They wanted to have a surgeon go in to see what was going on. They made it sound like a routine procedure. Well, I needed to schedule that in advance, I said. “Oh, we’d like you to go in on Wednesday” (this was Monday).

I pushed backed and scheduled the procedure for the next week. My wife drove me to the hospital and dropped me off at the front door. She took the dogs to a local park for a walk and then dropped them off at home before coming to check on me. That’s when she learned I was in surgery and, oh, by the way, “He’ll be on his back for 6 hours afterward.”

Why don’t they tell you these things in advance?

And I Woke Up In the Middle of the Procedure

They’ve been doing these angioplasty procedures for decades. The scariest thing about them is that they do so many they line the patients up like raw materials on an assembly line. The nurse who wheeled me into the operating room looked like she was about 90 years old (well, older than me) and she said, “Don’t worry. I’ve had this done 3 times. And I’m fine.” Fine enough to push a grown man on a gurney into an operating room.

They strap you to the table – literally. You can’t get up. You can’t move. They insert a tube up an artery, either in your arm or leg. It’s a small tube but it’s a tube (with a camera).

I like to came off the table when one of the nurses began shaving me down there (because I’m ticklish).

Why don’t they warn you about these things in advance?

I guess I’m lucky. They went in through my right arm. But the anaesthesia knocked me out for a while. And then one day I woke up to find space aliens probing me – I mean, I felt this terrible pain my arm. And I managed to squak out to the surgeon, “My arm hurts.”

I’m not usually one to complain about pain, but DAMN! that hurt. “Don’t worry,” he said calmly. “We’ll give you something for the pain.” And next thing I know they’re wheeling me out of the room.

And They Put A Stent In My Heart

The most disturbing thing I haven’t shared yet is this all happened in mid-May. May 11, to be precise. On May 17 Bill Slawski passed away from a stroke. It was his second major stroke in a year.

Bill and I were not close friends but we had known each other for years. We were both moderators in several Facebook groups. In the moderator chat for the White Hat SEO group on Facebook, Bill had wished me a quick recovery. In fact, those were his last words to me.

The surgeon found I had a 100% blockage in my left coronary artery (the so-called “widow-maker”) and a 70% blockage in my right coronary artery.

So why was I still alive after all these years? Well, the good news is that I had grown another artery from the right side to the left. Blood was getting to (at least most of) my heart in all the right places. But I was struggling to get it there.

I’ve now got a stent in that left artery. There are times I wish they had put a stent in the right one, too. But the surgeon said it was getting enough blood through that he didn’t want to do that.

The Recovery Has Been A Long And Winding Road

My wife took me home that day. Laying there in the recovery room for 6 hours is no picnic but I slept most of the time. My wife sat there with me and finally a nurse came in and told us that I could go home if I could get dressed.

That’s an exercise in humiliation. My wife tried to help me at first and I asked her to stop. And then I realized I couldn’t put my leg into my pants. “I guess it’s been a while since you dressed a child,” I told her.

Meanwhile, some poor guy down the hall was begging the nurses to call the doctor because of all the pain he was in. All I wanted to do was get out of there.

I spent the next week mostly sleeping. One of our dogs almost never left my side. The hospital sent a book home with me that explained everything I had just gone through. It also had a section that explained too little of what would come next.

You have to get up and walk a little bit more each day. But I had to climb a flight of stairs just to get home that day. I’ve never been so weak in my life. Well, not that I can remember.

And then after you reach a point where you can walk and talk normally again they send you to cardiac rehab where the nurses put a monitor on you, check your blood pressure, and get you to exercise and exercise and exercise. This blog post is already getting long so I won’t share all those adventures with you. But I didn’t have any serious incidents in the Phase 2 rehab.

Phase 3 (where you’re mostly on your own and don’t wear a monitor) was a different story.

Oh, Yes, The Insurance Company Is Paying for Repatha Now

The good news is that after you go through all that nonsense the insurance company sends you a letter saying, “Well, now that you’ve joined the club you get a membership pass.” Or something to that effect.

I realize these people are just doing their jobs, but I’d rather be paying for the Repatha out of pocket.

My cholesterol has never been better but it’s still not good enough. As it turns out, for T2D people like me, they want to get your cholesterol so low that maybe, just maybe it reverses some of the damage. They’re not sure about that yet. The research is inconclusive. They need more data. But even though my body no longer makes cholesterol (as long as I take the Repatha on time), I still have clogged arteries. So there’s probably another new drug in my future. That hasn’t been decided yet.

And Then I Got Bronchitis

I’ve been prone to respiratory infections for decades. I get a cold, the cold lingers, and then it becomes bronchitis. Sometimes the bronchitis turns into pneumonia. It’s almost like clockwork for me.

I call the (current) doctor’s office, tell them my symptoms, and they call in a prescription for me. Well, it’s all done by email now. And instead of giving me antibiotics right away like they used to, they put me on inhalers first, and then steroids.

So for over a month now I’ve been struggling with one of the worst cases of bronchitis I can remember. I put off telling the doctor for a week (because I was afraid they’d put me on steroids). Finally sent a message through their patient portal and they sent in an inhaler prescription. And 2 weeks after that they changed the inhaler prescription. And a few days ago I finally got to see the (new New) doctor for a few minutes and he put me on steroids (“keep taking the inhaler”) and prescribed antibiotics “just in case” (but don’t take them unless you need them).

Yadayadayada.

Among all the yadas was, “When do you see the cardiologist again?” And he scheduled a couple of tests for me.

Lingering bronchitis-like symptoms are not good for heart patients. But as I write this the first test has come back negative (as I understand it). I’ll have to wait to see what the doctor says. It’s a B-Type Natriuretic Peptide test. According to the info provided with the test result they want this number to be less than 100 (“but it gets higher as you grow older”). Mine came back as a 4, so I hope that’s a good thing.

I’m not yet done with the steroids but after a couple of days I do feel better and I’m able to hold a conversation without coughing and gagging. So I think I’m finally on the path to recovery.

And even though I had to force myself to write this blog post, I have the energy to do it and not feel like I’m draining my life away. Steroids will do that for you, of course. But I’m breathing better, too.

Last thing I want is to go back on that table. I’m glad it’s a routine procedure, but I’d rather not make it part of my routine. I gave up eating hamburgers and french fries every day a long time ago. But by then the damage had been done and my heart was a ticking time bomb.

I’m one of the lucky ones in so many ways. I’m still alive. I’m able to walk on my own 2 feet. When I don’t have bronchitis I can walk up a gentle slope without breathing hard.

Conclusion

I still have to find a balance between recovery and work and living life. I’ll have to start my exercise regimen all over again. Turns out, cardiac rehab centers don’t want their patients coming in and coughing all over the equipment. Okay, they want me to get better.

I’ve never been an exercise freak. I like walking but I want to do it to relax, not as part of an artificial exercise routine. If you have to schedule time to go into a gym, that means you’re sitting on your butt too much the rest of the day.

As someone who works from home I feel like I can be as active as I need. But that wasn’t enough. And as someone who has taken diabetes nutrition classes and talked with nutritionists one-on-one, I feel like I know what to eat and what not to eat. But I still eat worse than I should.

I’m the reason why my heart is in the condition it’s in. I can’t blame my genes on this. Well, maybe a little, but I made the lifestyle decisions that led me here.

I hope I can get back to writing a lot of blog posts again. Now that Facebook is no longer a distraction for me, I can spend more time sharing my thoughts here. I should. That’s what this Website is for.

But we’ll just have to wait and see where life takes me next. As long as I’m here, I’m grateful to be alive and I’ll try to do better, each day that I’m here.

And, yes, I will be blogging more this year than last year. But I’m not yet there. Please bear with me.