For those of you that are new here or didn't see our updates on Facebook or Social Media-- I'm sorry.
It has been crazy weird at our home for the last {checks watch} several years... But our most recent adventures revolve around a sudden "cardiac event" that my (healthy) 38 year old husband (Brad) experienced January 15 (3&1/2 weeks ago, as of this posting). I'm far too wordy to be able to give a normal update like "Hey all, Brad's alive but still has a way to go before he has his normal energy again" ..... I suppose some day I might fill in the extra details in this blog space, but that day is not today...
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With regular social media updates, I feel like there are a lot of missing pieces and a lot of questions still. Throw in the different people we've talked to and updated on different days of this endeavor, I can not even begin to remember who knows what or how much anyone has been updated. This is my brain-fog, lack of sleep, crazy-distracted attempt to bring as many of you up to speed as possible...
Several of our friends and family are in the medical field and know all the things; several have been dealing with heart issues (or other health issues) long enough that they know most of the things; but lots of our family and friends won't know any of this until they are listening to their doctors throw around medical terms and diagnoses (dx's) that sound like a scary Latin disease.
So, before I get to Brad's dx, I'm going to "quick" touch on some of our Coronary Buzz Words. If you are already a medically fancy sort of person (or if you don't find it interesting) Brad was dx'd with A-Fib w/ RVR. Feel free to scroll down to "Back To Brad's DX"
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Jessie's Medical Dictionary (AKA random jargon she has learned and uses to sound fancy):
Arrhythmia- Not normal heart beat (could be too fast, too slow, or irregular rhythm)
Palpitations- Fast/ strong/ irregular heart beats
Premature Contractions- Specific types of arrhythmias. They are extra beats that begin in either your ventricles (PVCs) or your atria (PAC's)
Resting Heart Rate- Your heart rate (HR) when you are just chilling out
Sinus Rhythm- Normal heart rate ("normal" range is 60-100 Beats Per Minute)
Bradycardia- Slow heart rate (under 60 bpm)
Tachycardia- Fast heart rate (over 100 bpm)
Ventricular Tachycardia- Mega fast heart rate (over 170 bpm)
There are TONS of types of arrhythmias & tachycardias- the fancy names typically indicate where the misfires are originating from. Some are a big time emergency & require immediate intervention, some are smaller things that you should take note of and mention to your dr. I'm pretty sure 99.83% of them feel scary when you aren't sure what is going on. I have PVCs and PACs. Sometimes they feel like pounding, sometimes fluttering, sometimes they hurt, and sometimes the only reason I'm aware of them is because I feel super winded. My biggest triggers are poor sleep, anxiety, & dehydration...
Cardiac Catheter- It's a medical procedure where a catheter (small tube/ hose) goes to your heart. (Also called "heart catheter/ cath" or "coronary angiogram")
Heart Ablation- medical procedure where they "zap" a spot in your heart to stop the crazy electrical signals (Sort of a permanent Ritalin for spastic atria. It causes scar tissue, so you are limited in the amount you can get. I believe my cardiologist said he won't do more than 3. Most people that need an ablation only need one.)
Cardiac Stress Test- This is a super fun test that monitors how your heart handles physical stress. You get patches of skin shaved, then "exfoliated" with sand paper so that you can have heart monitor leads stuck to you... Then you sprint to your almost death. On an inclined treadmill. In front of people. And you aren't allowed to wear a sports bra. And then you jump off the treadmill onto a hospital bed and hold your breath for as long as you can (because after an intense cardio session, who doesn't want to hold their breath as their lungs are screaming?) while an ultrasound tech gets pictures and videos of your ticker...
Now on to the updates:
What we know... (AKA kind of know AKA things we've heard, but don't actually understand AKA how my brain has interpreted all the things (PEOPLE!! I am not a doctor. All the medical knowledge I have was either learned in massage school decades ago, something Google told me, or things I've kind-of made up as I tried to listen to the real professionals talk))- Brad was diagnosed with Atrial Fibrillation (A-Fib/ AF) with Rapid Ventricular Rate (RVR).
A-Fib According to Jessie: *An electrical issue where your heart beat is erratic (it dances to the beat of it's own drum... and that drum has no sense of rhythm) *Your atrium (upper chambers of your heart) are kinda spazzing out (has worse ADHD than I do) *The atrium doesn't pump fully, so blood will just kinda stay in the area (I think it's like those annoying low-pressure, environmentally friendly toilets... They gently swirl the water <if it's yellow, let it mellow> when we've eaten too much cheese for the last few days and we actually need them to power-wash it all down.)
RVR According To Jessie: *The ventricles (lower chambers of your heart) are seeing the Atrium slack off & spazz out and they get confused as heck, which makes them angry... So they do this rage-pulse, but they do it SUPER fast... Like Jimmy John's ain't got nothin' on these guys. *They are out of control and get tired, but like an exhausted toddler, they may very well keep going until they crash... (We don't want crashes...)
A-Fib is pretty common... If you are in your 60's or older. Not so common when you are a fairly healthy 38 year old. (His cardiologist has had "some" patients younger than Brad with this condition, but the way he phrased it & the tone he used didn't make me feel any better.)
A-Fib alone isn't necessarily an urgent cause for concern. Many people live with A-Fib, some people aren't even aware they have it! (BUT! Since it means your heart is working harder than normal, it is something that should be addressed, so make sure you are going to your regular check-ups- even if you feel fine) The RVR part of his dx is what gets tricky (and confusing when you are just starting this journey).It's one thing watching a tired toddler have a sugar rush and go nutso. You know that waiting it out just a little longer will bring that deep, sweet sleep... But we're talking about hearts, not our little angels...
Danger zones: I've mentioned the different terms for heart rates and some of the arrhythmias, but I haven't touched much on why Brad's A-Fib w/ RVR is scary and I haven't said anything at all about his blood pressure (BP) yet. These are some things that we've learned (and are still learning) in regards to our specific health. Every body is different and every body will react differently to different things. Brad's heart stuff is all new to us and we are at the very beginning stages of whatever the heck is going on...
When everything started for Brad -well, when the "scary" stuff started, on January 15- he said he was light-headed, short of breath, and had extreme fatigue. At first I blew it off as "typical" palpitations. He asked if my palpitations ever cause chest pain, so I told him that when my upper chambers freak out, it hurts; when my lower chambers freak out, it doesn't. I told him to lay down, drink water, and after I switched laundry I would check his pulse and see how often he was misfiring. Then I remembered that he felt "off" earlier in the day, he sort of had stomach issues or heart burn, but an over-all malaise that he couldn't quite explain, as well as a backache that wasn't normal for him. As I started to remember the complaints from earlier, he rubbed his left arm and asked if my palpitations caused numbness. As I told him that he was going to the hospital, it was apparent that he was struggling with confusion and I noticed that he started to slur his words. Had I not been so focused on trying to remember CPR (Compress to the beat as you sing it with me friends-- "Ah, ah, ah, ah stayin' alive, stayin' alive. Blah-blee-blah-blah-blah-blah. Stayin' alive, stayin' aaaaliiiiii-i-i-i-vvve" {breath, breath} aaannnddd repeat until paramedics arrive... Sure, you could do "Another One Bites The Dust"... But I felt like maybe singing that while doing chest compressions on my hubby... In front of the kids... Would be a bit on the dark side of humor...); I would have been frantically searching stroke signs on Google (FAST- Face drooping; Arm weakness; Speech slurred; Time to call 911- pronto!)
-Anyway-
Back to Brad's DX... At the hospital his BP got scary high even after he had a bag of BP lowering medication (190/100 and then later 170/120+) and his resting HR got into the 170's. I thought we were all holding our breath because he was about to have a heart attack. I didn't realize that there were a whole lot more things to be concerned about. Remember A-Fib & the low pressure toilet scenario? Blood will get "stagnant", because it's not getting flushed/ pumped out, right? Well, stagnant blood forms clots (Thrombus). A heart that is spazzing out can easily throw a small clot that can lodge itself somewhere else in the heart (blockages, heart attack) in the lungs (Pulmonary Embolism), or in the brain (stroke). On top of all of that, your BP is at stroke levels if the upper number (systolic) is 180+ OR the lower number (diastolic) is 120+ (for us that are medically fake-fancy, it's called Hypertensive Crisis.)
So now we know WHAT is going on...
What we don't know... The problem is that we don't know WHY it's happening or HOW to make it stop, among other things.
What started it all? We aren't sure. There are several things that have been mentioned as possible causes...
He drives garbage trucks and needs a Commercial Driver's License Class B (CDL-B) license for work. He also needs a medical card that proves he is healthy enough to drive a big, high-risk vehicle. There are several medical requirements- one of which is a healthy, controlled blood pressure. Brad has had borderline high blood pressure (hypertension) that we have been watching for a while. Just over a year ago, he started taking his health a little more seriously, and then 11 months ago we switched to a low sodium diet. Side note- the low sodium diet and my increased exercise, plus the heart meds I was taking made me start passing out because my blood pressure would drop too low (hypotension). His blood pressure dropped back into a healthy range- until December or so, when he went in for a med card renewal.
Four days before his first ER trip, he started on a medication to reduce his blood pressure. Several medical personal didn't think those meds would cause the a-fib/rvr.
Every day for the last 20+ years he has been taking the same stimulant medication for his ADHD- and stimulants are known to *stimulate* the heart. So, was it an interaction with the BP meds?
We have heard about links between Covid and heart stuff or Covid vaccines causing heart issues. We all had Covid in August and all of his recent tests have been negative. <Long story short> Due to (several random things- one of which is my heart issues) reasons we have chosen to wait on the vaccine.
Family history is also something that is mentioned quite a bit. As far as genetics go, we have both absolutely won the lottery... Except for a complicated list of things when it comes to heart health. However, Brad's cardiologist isn't convinced that genetics can be blamed for an otherwise healthy 38 year old to have a sudden onset of a-fib/rvr.
How do we get it under control? Not sure yet. For now we have to figure out what his triggers are and how to reduce them. After a second visit to the ER, he received a ZioPatch (high-tech heart monitor sticker). After being in active a-fib for over 24 hours last Weds-Thurs, he (finally) got on the schedule for a stress test to see if we can get more information and a sleep study to see if he has any sleep apnea that would be adding to the problem. Both of those tests will happen this week. Since he is still having quality of life issues, he will be starting his fourth (fifth?) med change in 3 & 1/2 weeks.
And that brings me to...
How he is currently doing: He feels like he is doing 3 steps forward and 2 steps back. We are told that he is safe, but that with any changes we should head in to the ER. Except the last time we went to the ER, they acted like we were hypochondriacs and told us that a-fib is normal. One morning Brad woke up at 4am, gasping and clutching his chest because the chest pain was so bad it woke him up. We called the after hours nurse and we were told that we could go in to the ER or we could wait until his cardiologist office was open. At that point he was in A-fib for over 24 hours, with chest pain, a resting heart rate of 130, fatigue, breathless, and light-headed. As I packed a bag for the hospital, he started to feel a little better, so we decided to wait until we could call the cardiologist. (That was the call that got the tests scheduled, but not much else)
We still don't have parameters for when he should go in; we don't know what to do to try to counter the active a-fib, other than what I do for my PVC's/PAC's.
He is constantly exhausted with frequent bouts of all the symptoms. He isn't legally allowed to drive commercially, because of the med card and DOT regulations (and he's been humble enough to admit when he isn't comfortable driving his personal vehicle). Once again his bosses have been absolutely amazing, (Shout out to Arrowaste!) and that does a lot for his morale. They have given him some odd jobs around the shop, and force "encourage" him to take breaks as needed. He is used to working 12+ hour days and usually chose not to take a break, but now he only works up to 8-ish hours a day and actually takes his breaks. Since we are a single income family, we feel the pinch of losing his typical overtime pay, but we are so grateful that Arrowaste sees their employees as people, not just as numbers.
There are days where he moves around a bit more and gets cocky or sarcastic and I feel like he is pulling out of it, but it seems that one or two of those days in a row mean one or two days in bed followed by an extra slow day.
Mmm'k. Now what? I'm not sure. Realistically, there are pretty high chances that he will need an ablation. And will hopefully get that soon. Most of the questions we have can't really be answered until we get the results back from the heart monitor and the upcoming tests. We don't know how long results will take or if we can get a follow up with his cardiologist before the first week of March. I'm also not clear on how long after an ablation he will have to wait before he can be reevaluated for his med card for work.
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The rest of us-
Anxiety triggers my heart stuff AND anxiety over-rides my ADHD medication, so most days I'm stuck in a pretty thick brain fog. Emotionally I'm somewhere in between survival mode & being emotionally numb, and in denial & trying to figure out what habits to start now just in case our new normal is long term. I will get frustrated with waiting and then 2 minutes later my catastrophic thinking will take me on a wild adventure.
On January 4, Arend got a concussion and was still getting daily headaches when all of the heart stuff started. Plus he and Adaya are doing online school, so they need to keep up with their classes (there is a whole list of prayers needed with just that situation...). William is able to be fairly self-sufficient, but Titus and Nellie still need one on one for 99% of their schooling. I don't have the brain space to do that, constantly redirect the others, take on household chores, research all of the foreign-sounding medical stuff, get people to appointments, and other life things... So, the younger three are basically doing their spring break right now.
Outside of school being a bit hap-hazard, we've seen an increase in the kids with things like sibling rivalry/ fights, screaming, disrespect, insomnia, and brutally negative self-talk. Everyone's ADHD is less controlled; my sensory kiddo seems to be regressing with self-regulation and any sort of "sensory tolerance" (which includes what foods he will try, and I'm getting concerned about weight loss); in the past two of my kiddos have shown small degrees of defiance, (similar to mild attachment disorders- due to my severe, long-term postpartum mood and anxiety disorder) and we are seeing some of those behaviors resurface as well, and that naturally chips away at already frazzled nerves.
But!! We aren't wallowing in self-pity all the time... January 15 God showed up in a very real way for me. I have anxiety that can take on a life of it's own and I'm a professional catastrophic thinker. As I realized that there was a very real problem, with very dire outcomes possible, God poured His peace over me while also instilling a sense of urgency. Before we got to the hospital, I had no fear. The timing of everything that day and the timing of certain texts messages and offers of help since then have lined up in such a divine way.
The understanding of bosses, online teachers, people we volunteer with, sports coaches & teammates (several of us are competing at state for taekwondo & training has just recently intensified as our team prepares) and cast members (we are involved in our church [Evergreen Ministries]'s production of Treasure Island) has been a huge relief.
The amount of people that have reached out & offered meals, rides, and hands-on help as well as those that have been praying is absolutely humbling.
TLDR: Brad is still alive, we don't have a clue as to what is going on outside of that. Pray that the tests this week will reveal what needs to be revealed and we will get some clarity. Thank you for coming to my TED talk.
Thank you for the love, support, and prayers from the bottom of our {ADHD} hearts,
Jessie (and Brad and the kiddos)
