My Heart With WPW 11 years later

I wrote this a long time ago to help me through a really hard time in my life, I kept it fairly private other than some of my family. Recently I’ve been reading about so many others going through the same thing I did with WPW on reddit, so I wanted to share this blog serries I wrote in hopes others will find it and know that they are not alone. It’s now been 11 years since my decent into cardiophobia cause by WPW, it’s a real thing and it still haunts me to this day. When ever I feel a heavy thud in my chest it comes roaring back into mind is this when it gets me.

My Heart with WPW

This is my short story/journal about symptoms, being diagnosed, and treated for Wolff-Parkinson-White syndrome. WPW really can mess with your head almost more than your heart.

Trigger warning if you are struggling emotional or mentally my story could make it worse, please do not continue.

THIS IS NOT MEDICAL ADVICE IF YOU THINK YOU HAVE WPW OR ARE STRUGGLING WITH IT PLEASE SEEK PROFESSIONAL CARE.

Part 1 - The Decent Into Panic

Written 10.6.2015

Quick summary about me at this time in my life, 30+ years old, over-weight and not a very fit person, I do my best to keep a regular exercise schedule but never do, I have also never experienced panic attacks in my 30+ years so far, nor have I ever been admitted to a hospital for anything, no broken bones, no surgeries, overall fairly lucky/healthy.

Mid May 2015, I had been feeling ill for a few weeks, I was slowly recovering from an inner ear infection that was causing spinning episodes and panic known as vertigo. I still had a lingering sense of discomfort and frequent jittery-ness, and sudden exhaustion but I was on the mend.

One Sunday evening I was in our basement working out on the elliptical and watching Netflix, it was my first workout in few weeks since before the inner ear infection. It was a mild workout at best, a out 20 min in and suddenly my heart felt like it just froze pausing for few moments, I got light headed and had a controlled fall to the floor, as I lay on the floor heart kicked back on, my chest was pounding rapidly with the force of a sledge hammer. Unable to move, panicked and confused I began to fear the worst, was this a heart attack? Slowly I regained my composure and after a few minutes was able to stand back up. That was it for my work out unable to continue I slowly climbed the stairs to the first floor I began to fear the numerous possibilities of what I just experienced. My heart was continuing to pound rapidly, dizzy and scared I told my wife what had happened, being late in the evening my options were to wait and make a doctor appointment in the morning, or go to the ER. Although extremely scary I did not feel this needed to visit the ER or did it? Flipping back and forth to go in to the ER or not I could not decide, as the night continued I made up my mind that I would just have to wait and make an appointment the next day. That night was rough, I spent most of the evening googling my symptoms leading me to all sorts of horrible conclusions like heart failure, coronary artery diseases and many more terrifying things. I eventually tried to get some rest but lying in bed my heart still pounding my mind still racing with what horrible event has happened to my heart unable to sleep most of the night I feared what could possibly be wrong. All I could do is focus on making an appointment to see my doctor and get some answers.

Part 2 - The Waiting Game

Written 10.13.2015

Monday, the day after my incident on the elliptical, running on a few hours of sleep I felt exhausted, but my heart had returned to a normal pace in the night. I knew I needed to make an appointment to go in and see a doctor, but I wanted answers and I wanted them now.

On my way to work that morning, driving down a two lane country road it hit me again, much less severe this time, but a bit more dizzying, just a quick pause followed by a racing heart beat. Panic stricken again I looked for a place to pull over and catch my bearings. After a twenty minute rest on the side of the road, I had calmed down mental and physically, the racing heart had stopped, I felt that same fear I had the night before and the worst thoughts came creeping back, I proceeded to work not knowing what could be wrong.

Waiting patiently and feeling totally alone, too afraid to tell anyone what I was going through, I stared at the clock waiting for the doctors office to open. I spent more time reading horrible things that could be happening to me (although helpful, the I think the internet made my anxiety about this whole situation ten times worse). Finally after reading about terrifying symptoms and conditions on Web Md, my primary care provider was opened. I called and explained my symptoms to the nurse, now fine and with no experience of chest pains or any other emergency symptoms she saw no reason to send me to the ER and set up an appointment to come in. They were apparently busy that week the best I could do was an appointment on Thursday afternoon, I had to wait 4 days to get any answers but I was feeling fine now so I did not mind a little wait to get some answers.

Tuesday it happened again, with out warning while sitting in a meeting, I excused myself and sought refuge in the restroom until the dizzy spell and panic stopped my heart continued to race for about thirty minutes, then ending with sudden shudder it dropped to a normal pace. After that short episode I went about my day as normal, feeling extremely anxious but okay.

On Wednesday it stuck while I was just sitting at my desk like normal. Hiding in my car this time the initial dizzy spell passed I went back to my desk. The racing lasted about an hour, after the shudder and returning to normal dur I felt relieved but extremely exhausted. Each time when it occurred it was terrifying now the thought of “this is not going away” and “when would it strike again” began to consume my every though. After each occurrence it never sever enough to warrant a trip to the ER, but the anxiety was building and I had to know what was gong on.

Part 3 - Getting An Answer And A Ton Of Questions

Written 10.20.2015

Thursday finally arrived it had been a peaceful day without incident, I remember it was pouring rain, visibility was poor, about 1/2 way through my drive it struck again. After pulling over and taking a moment to recover I made it the rest of the way chest still pounding and racing.

Finally in the hands of my primary care provider I told him what was happening, the various symptoms. After discussing a few options he recommended that next time I have an episode I hurry in and get an EKG to which I promptly said “well how about right now” After just having an episode not thirty minutes ago my chest still pounding the nurse hooked me up and ran an EKG. A bit of time passed as the doctor was reviewing my results, about 20 min later came back in and said he had spotted something and had to double check the results. Turns out I had a condition known as Wolf Parkinson White syndrome (WPW). Basically its an genetic defect that causes an electrical short circuit that causes bouts of tachycardia. Although serious when symptomatic, I was okay, but I needed to see a cardiologist as soon as possible to confirm the diagnosis and how to treat my WPW. The doctor warned me with this type of non-emergency issue it could take a few weeks before I would be able to see a specialist. In the mean time he advised me to try and take it easy and warned me that some episodes of tachycardia can cause fainting so be mindful while driving. With little answers and more apprehensive about my new condition I was unsure how to proceed with life. The thought of two more weeks of these episodes was disheartening and depressing.

I know I wanted answers but I assumed a solution would quickly follow... I was wrong.

Part 4 - A Lurking Nightmare

Written 10.29.2015

I keep the next part of the story short... relatively speaking, but it was the longest and roughest part of my journey. From my last visit with my primary care doctor in Late May the referral took almost 2 weeks to just get on the schedule with an Electrophysiologist (Cardiologist specializing in electrical work) and then waiting for an opening to see the doctor would take until July 2nd.

During the month of June 2015 my life was consumed by my chest, like a lurking time-bomb lying in wait to go off at any moment. When an episode occurred the dizziness and anxiety attack that went with it was crippling, no matter where I was at any given moment I would need at least 10-20 minutes to come out of it enough to function. Following the initial hit, my heart would race at around 140 BPM lasting from 20 minutes to 5 hours, that time was spent trying to function as best as possible. The end of the episode was usually a hard thud in my chest as my heart reset to normal, with the high hart rate gone I was left physically and emotionally exhausted. Most of my days in June were bad with an episode occurring at least once a day, there were a few days without incident, those were nice but, but the fear never left my mind. From the moment I woke up up in the morning just knowing some time today, without warning, it would strike, it was a living nightmare each and every day. June would not pass fast enough.

I tried to find ways to cope and make it through each day on thing that helped a bit was a Fitbit*. Reading online a few other people with WPW wondered if using a Fitbit with heart rate monitor would help ease their minds so I decided to give it a shot. The Fitbit HR had an always on heart rate monitor that took 5 minute BPM averages and logged them. When an episode occurred it was a nice tool to have and allowed me to see how fast my heart was racing. I learned where my functional and non-functional range was, anything above 150 required resting, below that I was able to keep going with my day. Now it was obviously no substitute for data an EKG could provide but having it on my wrist at all times provided some comfort in knowledge about what was happening and when.

I also worked up the courage to talk about my condition with some people, not something I’m inherently good at is talking about myself (I know blog right, typing is different) especially about this. By nature I’m a cheerful easy going character but I’m also not someone to share my emotions easily. Since having these episodes I had changed and people were noticing and it was getting harder to hide what was going on. With my frequent disappearing act when I had episodes throughout the day, I thought it would be important to at least tell my Boss and Co-workers. Especially since I spend the majority of my weekdays with them. It helped a bit to talk about it, the concern was nice but I knew they looked at me different after that and I hated it. It was not that they looked down on me or anything they are a fantastic group but I somehow felt defective and weak in their eyes and it was difficult for me feel this way instead of my usual happy go lucky style. Not having a full validated answer from a Cardiologist I kept my WPW to a close circle of people the “need to know” folks only until I got some answers.

It was a difficult month that took a heavy toll on me. I managed to carry on with life, sticking to the routine and I did my best to conceal how depressed, exhausted and scared I truly was, but I was consumed by this condition and I was ready for it to stop.

*I am not paid to endorse this product/company nor am I affiliated with the company in any way.

Part 5 - The Diagnosis And The Solution

Written 11.10.2015

I had survived my personal terror that was June 2015 and at last it was July 2nd, now I get a solid confirmation and solution.

The drive to the cardiologists office was a mixed state of excitement and fear for the unknown I was facing. It was a late morning, arriving to the medical center I promptly found myself in the wrong office waiting room a nice receptionist gave guidance to “the other cardiologist office.” Once checked in I finally had a feeling of ease, I was on the brink of answers, relief and I felt safe knowing that of all the places in the world to have a problem like mine I was somewhere with people who could help me. After a month filled with anxiety I experienced a brief moment of peace as I waited.

The cardiologist was extremely nice, he reviewed the EKG with me from over a month ago and did another one and confirmed it was officially WPW. He explained that my condition was caused buy an extra wire in my heart that was causing a short circuit and when it was trip would allow my heart to loop the electrical signal and race continuously. Then came the moment I was waiting for, how to get this fixed. He explained that due to my extreme symptoms he could not recommend medication, the only solution he felt was an option was surgery.

The surgery involved to fix this condition is called an SVT ablation, the cardiologists would snake a few wires from my groin up to my heart to perform an EP study to locate the extra wire on my heart and then burn it, essentially cutting the short circuit. The good news is that my WPW was completely solvable, but the surgery itself was not with out risk. After the cardiologist explained the various risks and possible outcomes I had a few questions and we were done. I was then sent to the Scheduling Office to make appointment for my surgery. All the information form my visit was still unprocessed and a jumble but the date was set for early morning on July 13th.

At last with full answers in hand still trying to grasp what it truly meant it was time to tell my folks. Not only had I left them in the dark until this point but now I need their help with transportation for my surgery. I was used to hearing about various medical tribulations from them but this was the first time I had to approach them about a problem with myself, it was an unusual experience to say the least. They took the news okay, it was a little rough for me to spit it out at first but I had enough information to provide them with clear and solid information. They were supportive and ready to help.

I left the Medical Center disheartened, I guess I hoped for something simple, something easy, pop a pill away it goes, but I had a solution, it may not have been the one I wanted but it was a chance to be rid of the terror in my chest. All I had to do was wait two more weeks, have a quick outpatient surgery and I’d be back to normal. But the anxiety of my WPW plus a pending surgery would be tougher than I expected.

Part 6 - The Last Stretch

Written 11.24.2015

Finally sitting down to write this next part was tough, it took a long time to get up the guts to think back to this time, just know I tried to keep Part 6 brief and honest as possible. With Thanksgiving coming up this week, I am so thankful for all my loved ones and to still be here. So here goes...

The two weeks before my surgery was an emotional roller coaster, not that I hadn’t been on one already but the extremes were bigger, a fantastic high knowing I would be back to normal soon and the deepest low from the fear my first surgery ever, let alone a major one like this. My doctor had explained the SVT ablation as a simple but invasive procedure and if all went well I would go home the same day and I would be up and around in about 3 days. I tried to enjoy life but it was all but impossible to do.

The fear and panic I had developed over the past month from my condition coupled with the stress from the pending surgery had come to a boiling point. One evening alone watching TV and playing video games I finally came to realize my mortality, I guess some part of me still held on to the teenage notion of immortality not that I thought I was immortal but never accepting or processing what it meant to have a limited life span. Like the pop when you drop a light bulb, the entirety of an invasive heart surgery hit me. It is a memory that will be with me forever, it was an instantaneous “oh shit” moment and in that instant my mind got loose and ran to some dark “what if” places. My first thoughts of course was of my family, would they be okay without me if something happened, what would life be like with out me, all sorts of deep horrible things came through my mind. After an extremely emotional jaunt in the dark my head cleared and I knew I needed to do something. As a fairly logical person I knew I needed to do something, I needed a plan.

I started with the what’s and where’s. As the home tech guy there was a vast amount of technology in our home that my wife has no clue what or where they were, like the network drive for photos and it’s back up. It was very late in the evening but I produced a lengthy list that would ensure my poor wife would not be stuck in a tech nightmare. After I detailed our home’s inner workings and passwords the next part was my last wishes being a young person I had no will or anything. I keep things as simple as possible... I’ll leave it at that. Perhaps this all seems too much or morbid but it’s how I started coping with what might be and I knew if I didn’t do it that night I would not be getting sleep anyway. After all the easy stuff was out of the way it was about 1am, on a roll, I tackled the worst part of my plan, the “So I’m gone...” notes for each of my 3 girls. It was a heart wrenching thing to do, thinking of the things I might miss, watching my girls grow and experience life without me, not being able to grow old with my wife. I tried to be encouraging and positive as I wrote each note, but it was hard to do, it was hard not to be morbid and soppy. Tired, scared and emotional I fumbled my way through them, with a complete package sealed and stored, I headed to bed at around 3am.

With that tough night behind me each day was still trying, even during a heart episode, lying on the floor with a solution just within reach, the unknown that lie ahead consumed me. My last days before surgery I tried to conceal my fear and emotions but I’m sure it did not come across well, I’m sure I was behaving like a giant grumpy ass hat most of the time (sorry sweetie). I had done all I could to deal with my emotions, the “So I’m gone” package had given me some peace of mind, knowing I had done something if the worst should happen. I was ready get the surgery over with, ready to be normal, ready to be me again.

Part 7 - The Big Day

Written 01.20.2016

The big day and a short entry, to be honest I’ve been putting this one because I don’t want to write about it, it was a very difficult day and would not wish the experience on anyone. The sort summary of my surgery day was as follows. July 13th 6am arrival time. After 1 hour prep the surgery was a terrifying 4 hours, I was awake the whole time. The first 3 hours were used to pinpoint the extra wire in my heart causing my WPW, the last hour was burning it and monitoring me. The doctor was able to get the extra wire in my heart disconnected as describe previously. Afterwards in recovery I suffered a hematoma in my groin after getting up, holly crap that was painful. To top it all of at the end of the day my vision in my right eye disappeared, I called the nurse, who sent for the Dr. Rowan. He tested my vision, over 1/2 the vision in my right eye was gone, like a giant sun spot all I could see was static fuzz. The doctor determined that I had a TIA stroke in my right eye so after a long grueling day the doctors decided I needed to visit an ophthalmologist to see what kind of damage there was. After a slow checkout I was taken to a near by eye doctor and sat down with my groin in pain and utterly exhausted in the waiting room. They made us fill out new patient forms and we waited. My wife continually prodding the front desk to get some sort time estimate, eventually they saw me, an assistant came in and went over my vision history, did a quick check and we waited. Still in pain my wife found me a place to lie down. Finally after an hour of waiting the ophthalmologist saw me and did the exam. He agreed that I had a TIA in my right retina and it caused a permanent blind spot in my peripheral vision. My wife had taken off to take our daughter to T-ball, per my request, I did not want the girls activities to be disrupted by my event. Eventually my folks arrived and I was headed home. It long exhausting day, I made it out alive and was able to go home that evening but I would never be the same in more ways than one.

Part 8 - Recovery...

Written 06.25.2016

July 14th, the day after my surgery was a blur of pain and sleep, finding the right spot so my groin did not shoot pain through my body was difficult. Being my first surgery I had no clue what to expect, the nurses had gone over a few little things like stroke and heart attack you know the kind of things that scare the crap out of you. I was told that I would be up and about in 3 days post-op, to me that meant back to normal in 3 days, little did I know it meant being able to stand up for 20 minutes. Laying down for days with nothing but time, my mind wandered and was extremely sensitive to every little itch and tingle that went through my body, each sensation brought doubt that something else might be wrong, the anxiety I had before the surgery was now much worse. I had called the Doctor’s office multiple times struggling with “Is this sensation normal or not?” they continued to assure me that everything was fine. After 3 days my body may have been recovering but my mind was a mess with fear and panic.

If the mental and physical stress wasn’t enough, I felt like a huge letdown to my family, as a Dad and Husband I should be strong, dependable, and available, I was the opposite of that, I was so helpless and disconnected from everything. My wife tried hard to care for me but I was a terrible patient, I didn’t want her or the kids lives to be interrupted by my condition which I’m sure came across like a grumpy jerk. Perhaps it’s only child thing or just plain stubbornness but relying on others is not my thing, I don’t even like it when other people mow my lawn let alone care for me when I’m ill.

They told me I would be up and about in 3 days so on day 4, I was back to work (stubbornness!) although I shouldn’t have. About 1/2 way through the day I gave up and went home. I had no business being back to work that 1st week, but I fought through it, probably causing my recovery to take longer. After a few weeks my energy levels started to come back and I attempted to resume a normal schedule but I was far from healed.

Part 9 - Never The Same

Written 07.14.2016

In the weeks to follow my surgery I was still hyper sensitive to all the odd sensations throughout my body as it slowly healed. The fear that there was something still wrong with me would slowly build like a snowball and every few days it lead to a panic attack. Some were mild and others were rough. I again found myself seeking shelter in the car at work and lying sleepless on the couch at night. I was still not me, the guy from before all this mess was not back and it was infuriating and even depressing which made it all that much worse.

On August 11th 2015 about a month from my surgery some good news, my final EKG and checkup at the cardiologists office were good, I was officially cured of WPW and there was only a 10% chance of re-occurrence. I explained what I had been experiencing to my cardiologist and he assured me that I was fine. I should have been excited but I wasn’t, my heart may have been cured but my body and mind had not I still felt broken.

The months passed, I had good days and bad, and I continued to hold myself together as best I could. The panic attacks eventually got further and further apart. I tried to focus on life, birthdays, holidays, family and trips but that seed of fear and doubt still lingered, was I truly alright? Every so often with a missed step, a car horn in traffic, or a skipped beat in my chest, the anxiety would take over and my chest pounded like a sledge hammer sending me spiraling down into another panic attack.

In late March 2016 I experienced severe chest pains, shortness of breath and extremely high blood pressure, another panic attack but this one was the worst yet, fearing it was something more and about to leave on international travel my family convinced me to head for the ER which of course made me feel 1000x more anxious. Arriving at the ER in full on panic state I explained my history of problems over the past year the ER folks quickly proceeded with a battery of tests. After being poked and prodded and a long wait the results came back clear. The ER doctor explained that with such strong symptomatic WPW like mine it was highly possible I may be suffering form PTSD (yep that’s post-traumatic stress disorder). Although disturbing at first, I felt as though I had some answers.

For almost a year I fought and struggled to regain who I was, I just wanted to be me again, but I know now that I won’t. I am slowly starting to accept my new reality, that the guy before the WPW won’t be back, the new me has a little less spring in my step, a bit quicker to anger and tears, and I have anxiety, but I’m okay with that because I’m happy to still be here.

Writing this last post today July 13th 2016 it’s been exactly one year since my surgery, even now it’s difficult to re-read these posts, but writing it has helped me deal with everything I’ve been through. To be perfectly honest 2015 was a crappy year, I had a lot of rough days, but I’m thankful to be alive and thankful for my family’s help getting through all this especially my wife who has put up with me and stood by me no matter what.