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This blog is long \u2013 a whopping 2600 words \u2013 and the title is pretty self-explanatory, so I\u2019ll just get right to the point. If you don\u2019t want to go through the background that leads to an explanation about the Cleveland trip, skip to the bold type that says \u201cFebruary, 2017.\u201d<\/p>\n
First, a little background:<\/p>\n
June, 1989:<\/strong> 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\u2019t 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\u2019s 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, \u201cHouston, we have a problem.\u201d (You saw that coming, right?) Long story short, Houston replied \u201cCome on down, we\u2019ll fix you up for good.\u201d<\/p>\n July, 1989: <\/strong>Canceled wedding. Ripped up invitations. Booked flights to Houston.<\/p>\n August, 1989<\/strong>: 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.<\/p>\n September, 1989<\/strong>: Got married with fresh flesh wounds. Energize Bunny jokes continued.<\/p>\n October, 1998:<\/strong> 1st pacemaker replacement, also at Texas Children\u2019s. Went semi-okay. I showed up with one of two pacer leads out. We don\u2019t 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 \u2026\u00a0Providence. <\/em>Doctor\u2019s 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.<\/p>\n May, 2006:<\/strong> 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.<\/p>\n New Year\u2019s Eve, 2015:<\/strong> 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 \u2026 unexpected low battery, and had to have replacement surgery in a semi-emergency fashion. Am apparently fond of the emergency drill.<\/p>\n New Year\u2019s Eve, 2015:<\/strong> 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\u2019s words, \u201chad to be replaced.\u201d Okay, cool.<\/em> I thought. Got a new lead.\u00a0<\/em>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.<\/p>\n \u201cHouston, we have a problem,\u201d <\/em>take two.<\/p>\n \u201cHey, guys, feeling some electricity here. Are we sure each lead is securely in place?\u201d 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 \u201cnew feature\u201d that \u201cshouldn\u2019t be causing problems\u201d but \u201cmight be anyway.\u201d 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.<\/p>\n Fast forward to \u2026.<\/p>\n February, 2017:<\/strong> Went in for a regular pacemaker check, and the tech said, \u201cYou\u2019ve got noise on one of your leads.\u201d In a not-so-surprised voice, I said, \u201cDo tell. Might it be coming from the top lead that I\u2019ve been telling the docs is malfunctioning for the last two years?\u201d I tried so hard not to be sarcastic in the tone of my response, but when you\u2019ve been struggling with a problem for a year and a half, but the computers say<\/em> you\u2019re fine, so the docs believe<\/em> you\u2019re fine because people lie and computers don\u2019t, but later find out maybe you\u2019re not fine? It\u2019s hard to keep an even tone.<\/p>\n Early March, 2017:<\/strong> Long story short, I was sent to see an EP (electrophysiologists), because, remember \u2014 computer<\/em> says there\u2019s a problem so there must<\/em> 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\u2019s fine. One that\u2019s damaged, meaning it is probably torn and leaking electricity. And one that\u2019s lying dormant. So the truth of what happened in that New Year\u2019s Eve surgery, was that a lead was added \u2013 not replaced, as the surgeon told me.<\/p>\n Turns out surgeons don\u2019t extract leads unless it\u2019s absolutely necessary, because to do so means possible death of the patient. Lead extraction surgery, as they call it, is very dangerous, but they\u2019re 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\u2019t run into these issues. But since I\u2019ve had mine for thirty years, and may need it for another thirty, well \u2026. Cleveland, we have a problem. <\/em>I\u2019m\u00a0going need more pacemakers and new leads in the future, and with all these old leads hanging around, that will be impossible.<\/p>\n Why don\u2019t you just wait until you\u2019re older?\u00a0<\/strong><\/p>\n 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\u2019m freshly forty-five.<\/p>\n 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\u2019t feel well. And yet \u2026 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\u2019s a hard decision. Do I have a surgery that absolutely has to be done at some point now,<\/em> and have less chance of dying? Or do I wait, and have a bigger chance of dying, but gain relative assurance that I\u2019ll be around for at least eight more years? Feels like a choice between a sour lemon and \u2026 a sour lemon.<\/p>\n What makes the surgery so dangerous?\u00a0<\/strong><\/p>\n 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\u2019s 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.<\/p>\n I\u2019ve 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.<\/p>\n And with that bit of news? Well \u2026 I just laugh. Nervously. Very nervously. God is sovereign. I can\u2019t control this. I can\u2019t control the surgeon\u2019s hands. I can\u2019t control whether I bleed. I can\u2019t control whether three minutes is long enough to fix the bleed. I can\u2019t control how difficult or easy it will be to open me up. I can\u2019t control any aspect of this entire scenario, except hotel reservations. I don\u2019t even know how to get to Cleveland. Never been there. Know nothing about the city. Don\u2019t know a single soul there.<\/p>\n God is everywhere, and I\u2019m sure He has people even in Cleveland. In fact, some friends of ours have already said \u201cHey, we have good Christian friends in Cleveland that will help you if you need it.\u201d But even if those good people were not available, it would be okay. I\u2019ve done this before. I was a kid at the time, but I was not too young to recognize God\u2019s hand in all that was said and done during the first open heart surgery. The staff at Texas Children\u2019s were just short of angelic. I can\u2019t say they were actually<\/em> 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\u2019s as far as being the best in the world. That\u2019s 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, \u201cThis is no time for me to try and be a cowboy<\/em>.\u201d He has no desire to do this just so he can say he\u2019s 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\u2019s more of a chance of survival? Or is it one of those situations where survival is so unlikely that I\u2019m 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.<\/p>\n Can\u2019t you just live without a pacemaker?\u00a0<\/strong><\/p>\n 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 \u2013 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\u2019ve been awake many times when they turn my pacemaker off. It doesn\u2019t feel too swell, and I can\u2019t imagine living without my hardware until my heart just phases out. \u2018Twould be a horrible death, I\u2019m 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. \u201cSooner is better than later\u201d is what we are hearing, and I see the logic in that. Still, the scaredy cat in me wants to say \u201cNo thanks. I\u2019ll take another eight semi-good years and hope for the best down the road.\u201d<\/p>\n Will you pray and follow?\u00a0<\/strong><\/p>\n Clearly, your prayers are coveted. We won\u2019t be going to Cleveland until Shaun\u2019s 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.<\/em> Pray we are able to drive. Pray for Shaun\u2019s healing. Pray the docs have a plan up their sleeve we don\u2019t 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\u2019s 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.<\/p>\n 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\u2019d 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\u2019s accidental. Perhaps He wants an entire army, however large or small it may be, to see what He\u2019s 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.<\/p>\n I am willing to chatter online for a few minutes every day, that He might be glorified. So that\u2019s the plan. If we go to Cleveland and they want to do the surgery before we even have a chance to come home (it\u2019s a possibility, although we are planning on two trips), then of course there will be times when I can\u2019t post anything. But I promise to be as faithful as my health and strength permit. Would love it if you\u2019d send me a note at gloriapatri7@gmail.com, or comment below noting whether you\u2019ll follow, since about now, I\u2019m feeling like I\u2019m talking in a cave, where it\u2019s dark, lonely, and echoing with loud sounds of rejection.<\/p>\n Hello, hello? Anyone out there?<\/p>\n Anyone?\u00a0<\/em><\/p>\n Anyone?\u00a0<\/em><\/p>\n Bueller?\u00a0<\/em><\/p>\n Okay, enough joking around. If you\u2019re still awake, thank you for listening. I tried to foresee any questions people might have, but if you have some I didn\u2019t answer, feel free to ask. Also, if you\u2019re wondering why I keep saying I had heart surgery as a kid, and also got married right after I had that surgery, it\u2019s because I basically got married at age 12.<\/p>\n Kidding.<\/em> But not by a lot. Ha!! This is my party, and I\u2019ll leave room for mystery if I want. \ud83d\ude09<\/p>\n Until next time \u2026 toodle-oo.\u00a0<\/em><\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":" This blog is long \u2013 a whopping 2600 words \u2013 and the title is pretty self-explanatory, so I\u2019ll just get right to the point. If you don\u2019t want to go through the background that leads to an explanation about the Cleveland trip, skip to the bold type that says \u201cFebruary, 2017.\u201d First, a little background: […]<\/p>\n","protected":false},"author":2920,"featured_media":816,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[21,152,155,106,154,151,150,105,153],"class_list":["post-1127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-chronic-illness","tag-cleveland-trip","tag-control","tag-doctors","tag-gods-sovereignty","tag-heart-problems","tag-heart-surgery","tag-prayer","tag-surgeons"],"yoast_head":"\n