This blog is long – a whopping 2600 words – and the title is pretty self-explanatory, so I’ll just get right to the point. If you don’t want to go through the background that leads to an explanation about the Cleveland trip, skip to the bold type that says “February, 2017.”
First, a little background:
June, 1989: I was due to be married in August, and was currently taking three heart medications to control severe tachycardia. Went to refill those meds one day, and was told a refill for the most important med I was taking wasn’t possible, as it had recently been pulled from the market. Turned out patients were dropping dead from its side effects. I lived in Colorado at the time, but my cardiologists were in Houston. Texas Children’s Hospital, to be exact, where I had been fortunate enough to finally receive a diagnosis a few years earlier. So we called Houston, and said, “Houston, we have a problem.” (You saw that coming, right?) Long story short, Houston replied “Come on down, we’ll fix you up for good.”
July, 1989: Canceled wedding. Ripped up invitations. Booked flights to Houston.
August, 1989: Got fixed up real good. In other words, had open heart surgery and got a shiny new pacemaker. Endured many months of Energizer Bunny jokes from friends and family.
September, 1989: Got married with fresh flesh wounds. Energize Bunny jokes continued.
October, 1998: 1st pacemaker replacement, also at Texas Children’s. Went semi-okay. I showed up with one of two pacer leads out. We don’t know how I birthed babies and lived in general for years without that lead being properly placed (somehow it moved from my heart to my diaphragm!), but … Providence. Doctor’s at TC were very upset my cardiologist in Colorado simply turned the lead off when I had complained of obvious symptoms indicative of a lead misplacement, but hey. Doctors are people and people do dumb things sometimes.
May, 2006: 2nd pacemaker replacement, not in Houston, as it was an emergency due to an extremely low battery and I had no time to contact Houston, and certainly no time to make travel arrangements. My bad, as I was being rebellious by not going in for my regular pacemaker checks, and unbeknownst to me, I had used more battery power than I knew. Surgery went fine. No problems afterward.
New Year’s Eve, 2015: 3rd pacemaker replacement (4th pacemaker total). Went in for a regular check, because I had learned my lesson and went in every three months as directed. But again … unexpected low battery, and had to have replacement surgery in a semi-emergency fashion. Am apparently fond of the emergency drill.
New Year’s Eve, 2015: Had to stay unexpectedly in the hospital overnight, because during surgery, when the surgeon detached the leads from the generator, one lead completely fell apart and, in the surgeon’s words, “had to be replaced.” Okay, cool. I thought. Got a new lead. Except not so cool, in that as soon as they moved me from the surgical bed to the more comfy bed in my room, I felt strong electrical zaps in my chest.
“Houston, we have a problem,” take two.
“Hey, guys, feeling some electricity here. Are we sure each lead is securely in place?” I asked, knowing from prior experience that if you feel that zap, a lead is either has fallen out of the heart or something about the pacer is malfunctioning. A pacemaker patient should never feel the electrical impulses it sends to a heart to keep it beating. SO! They did a quick pacemaker check and assured me all was well. Leads were in. Heart was beating as it should. And yet, I continued to feel the electricity. When I got home, I struggled for months to get well. My surgical sites healed, albeit slowly. But the lead kept zapping, resulting in black outs, shortness of breath, and feeling generally miserable when it came to my heart health. This battle went on for a year and a half, where I tried to tell the docs something was wrong. At one point, a few months after surgery, the pacemaker tech turned off a “new feature” that “shouldn’t be causing problems” but “might be anyway.” Turning that new feature off proved to be a good first step, as it diminished the number of black out spells and breathlessness I was experiencing. But things have simply never been right with this pacemaker. Not when they first implanted it and not now.
Fast forward to ….
February, 2017: Went in for a regular pacemaker check, and the tech said, “You’ve got noise on one of your leads.” In a not-so-surprised voice, I said, “Do tell. Might it be coming from the top lead that I’ve been telling the docs is malfunctioning for the last two years?” I tried so hard not to be sarcastic in the tone of my response, but when you’ve been struggling with a problem for a year and a half, but the computers say you’re fine, so the docs believe you’re fine because people lie and computers don’t, but later find out maybe you’re not fine? It’s hard to keep an even tone.
Early March, 2017: Long story short, I was sent to see an EP (electrophysiologists), because, remember — computer says there’s a problem so there must be a problem. That EP sent me to a better EP, a graduate of Harvard, who clarified that I actually have three leads. One that’s fine. One that’s damaged, meaning it is probably torn and leaking electricity. And one that’s lying dormant. So the truth of what happened in that New Year’s Eve surgery, was that a lead was added – not replaced, as the surgeon told me.
Turns out surgeons don’t extract leads unless it’s absolutely necessary, because to do so means possible death of the patient. Lead extraction surgery, as they call it, is very dangerous, but they’re telling me it has to happen at some point. This is due to the fact that I had a pacemaker implanted at such an early age. The leads can only be in there for so long. Most people who get pacers are dead before thirty years pass, so they don’t run into these issues. But since I’ve had mine for thirty years, and may need it for another thirty, well …. Cleveland, we have a problem. I’m going need more pacemakers and new leads in the future, and with all these old leads hanging around, that will be impossible.
Why don’t you just wait until you’re older?
Because the older I am, and the older the leads are, the less chance I have of surviving an extraction. This is because age is always a factor, and because age of the leads is a HUGE factor. I could wait until my pacemaker generator battery dies, in about eight years. But that would put me at almost mid-fifties, and the leads at 38, 28, and 9 years old. Right now, the leads are 30, 21, and 2 years old, and I’m freshly forty-five.
Either way I go, whether I have the surgery now or in eight years, it will be dangerous. But the point is, the surgery gets more and more dangerous as time wears on, and already, much time has passed. And already, a lead is damaged. And already, I don’t feel well. And yet … I could for sure live (barring something else killing me) for the next eight years if I just leave everything alone and put up with the damaged lead. It’s a hard decision. Do I have a surgery that absolutely has to be done at some point now, and have less chance of dying? Or do I wait, and have a bigger chance of dying, but gain relative assurance that I’ll be around for at least eight more years? Feels like a choice between a sour lemon and … a sour lemon.What makes the surgery so dangerous?
The short version is that in order to extract a lead, they have to laser off all the scar tissue in my arteries that has accumulated over the years. This allows the lead to come out smoothly (hopefully). In lasering, they risk nicking a main artery to my heart, since that’s what the leads are threaded through. An EP would be doing the surgery, but if the EP nicks a main artery, a heart surgeon, who will be standing by my bedside, washed, gloved up, with saw in hand, will have three minutes to open me clear up and fix the bleed that the nick caused.
I’ve been told that it would be difficult to get the job done in the infamous three minute window, due to the fact that I had open heart surgery as a kid. I have scar tissue, calcium deposits, and wires that hold my breastbone together, and all would interfere with a quick, second open heart surgery that would be so vital to survival.
And with that bit of news? Well … I just laugh. Nervously. Very nervously. God is sovereign. I can’t control this. I can’t control the surgeon’s hands. I can’t control whether I bleed. I can’t control whether three minutes is long enough to fix the bleed. I can’t control how difficult or easy it will be to open me up. I can’t control any aspect of this entire scenario, except hotel reservations. I don’t even know how to get to Cleveland. Never been there. Know nothing about the city. Don’t know a single soul there.
God is everywhere, and I’m sure He has people even in Cleveland. In fact, some friends of ours have already said “Hey, we have good Christian friends in Cleveland that will help you if you need it.” But even if those good people were not available, it would be okay. I’ve done this before. I was a kid at the time, but I was not too young to recognize God’s hand in all that was said and done during the first open heart surgery. The staff at Texas Children’s were just short of angelic. I can’t say they were actually angelic, because my theology tells me differently. But everything about TC docs was stellar, and I know Cleveland Clinic is right up there with Mayo Clinic and Texas Children’s as far as being the best in the world. That’s why my EP is sending me there. There was a time in my visit with him where he looked me straight in the eye and said, “This is no time for me to try and be a cowboy.” He has no desire to do this just so he can say he’s hot stuff, and has the performance of a dangerous surgery under his belt. He claims that if it were his family member, he would send them to Cleveland and get an expert opinion on whether this surgery can and should be done. But at the same time, has told us that he knows it has to be done. The question is, should it be done now, while there’s more of a chance of survival? Or is it one of those situations where survival is so unlikely that I’m better of not doing it at all, and the best we can do is hope by the time all my current hardware is completely worn out, there will be some technological advances that would make it possible to extract the leads without it being the death of me? This is what he hopes we find out on our first visit to Cleveland.
Can’t you just live without a pacemaker?
Unfortunately, no. After my childhood open heart surgery, I went into complete heart block, which means the top and bottom part of my heart no longer communicate. The top portion will beat so-so on its own. The bottom part, not so much. And the top and bottom are never in sync. They just sorta ignore each other and do their own thing – like a lot of married couples these days. Also, without a pacer, I can only put out thirty-some side-wonkle beats per minute. I’ve been awake many times when they turn my pacemaker off. It doesn’t feel too swell, and I can’t imagine living without my hardware until my heart just phases out. ‘Twould be a horrible death, I’m guessing. So, while I am not terribly excited about this surgery (anxious, yes, excited, no), it is what it is. At some point, the hardware re-do must be done. “Sooner is better than later” is what we are hearing, and I see the logic in that. Still, the scaredy cat in me wants to say “No thanks. I’ll take another eight semi-good years and hope for the best down the road.”
Will you pray and follow?
Clearly, your prayers are coveted. We won’t be going to Cleveland until Shaun’s rotator cuff surgery is performed and he is healed enough to at least make the trip. If he has complications from the surgery, and that plan fails, Jessie and her little one plan to fly me out, which will be interesting since whithersoever I goest, an entire kitchen must also go. Sigh. Pray we are able to drive. Pray for Shaun’s healing. Pray the docs have a plan up their sleeve we don’t even know about yet. Pray for my other illnesses that will no doubt flare for months after surgery. Pray for Shaun and my kids during this. It’s not so easy on them at times. Pray this brings me and others closer to Christ. Pray a lot of things. Whatever and whenever the Spirit leads.
My goal is to post at least a few paragraphs daily here at Felix Culpa once we are in Cleveland. So follow along if you wish. In times like these, keeping in touch goes against the grain for me. I am a private person. My inclination is to sneak off and be pretty quiet about my troubles. If I must suffer, I’d rather do so in silence and isolation. But somewhere in the progression of my chronic illnesses, God saw fit to mold me into a writer, and I have a hard time thinking that’s accidental. Perhaps He wants an entire army, however large or small it may be, to see what He’s going to do through this trial? Through all my trials? He seems to be rather faithful and perfect in His promise keeping throughout them all, and perhaps it is His will that through me, others might see that and be drawn to Him.
I am willing to chatter online for a few minutes every day, that He might be glorified. So that’s the plan. If we go to Cleveland and they want to do the surgery before we even have a chance to come home (it’s a possibility, although we are planning on two trips), then of course there will be times when I can’t post anything. But I promise to be as faithful as my health and strength permit. Would love it if you’d send me a note at firstname.lastname@example.org, or comment below noting whether you’ll follow, since about now, I’m feeling like I’m talking in a cave, where it’s dark, lonely, and echoing with loud sounds of rejection.
Hello, hello? Anyone out there?
Okay, enough joking around. If you’re still awake, thank you for listening. I tried to foresee any questions people might have, but if you have some I didn’t answer, feel free to ask. Also, if you’re wondering why I keep saying I had heart surgery as a kid, and also got married right after I had that surgery, it’s because I basically got married at age 12.
Kidding. But not by a lot. Ha!! This is my party, and I’ll leave room for mystery if I want. 😉
Until next time … toodle-oo.