(Author’s note: To save you the trouble of looking it up, a DNR is a formal, notarized part of a living will. It stands for Do Not Resuscitate. In other words, when I die please leave me alone. But I’ll get to that story in a minute, you know me.)
This is a 3 part series. You can read part one here, or skip to part two here.
The third and final chapter on the trials and tribulations of being diagnosed with anxiety and panic attacks, when in fact a majority of the time it was simply heart problems. Not that A-fib (atrial fibrillation) is simple, it carries all sorts of complexities, and in my case proved fatal.
Why is putting this down on paper important? For one I will start to forget some of the details as I get older, like the sequence of events or dates and places. For another, at least in my opinion, it ties directly back to PTSD. As well as my lousy coping skills compounded by a body that was pre-disposed for a multitude of ailments.
My kidney, heart and MGUS issues were going to exist with or without the effects of PTSD, I think anyway, but each compounded the other. One plus one equals three in other words. The drinking especially, as alcohol at the levels I was consuming is so damaging to more than the liver. Did PTSD cause A-fib? No, but played a part in making it worse.
So let’s go back to the TIA in 2011 and the time when the first neurologist at the Stroke Clinic determined A-fib was a serious issue. Besides a blood thinner, I might need to investigate any and all options to get a-fib under control. Yes, quitting smoking and losing a few pounds would help a bunch.
I won’t go into all the details as I’m not a cardiologist or medical expert. From a patient’s perspective I learned all I needed to know, I asked the right questions and googled for answers. If I haven’t stated it enough, I’m only relaying my own personal experiences.
The immediate solution was the addition of beta-blockers, the blood thinner Pradax, and a diuretic to keep fluid build up under control. The blood thinner made me more tired on top of the exhaustion that occurred from A-fib itself. A screwed up heart limits your oxygen levels in the blood, so your energy level drops. The diuretic made me pee. A lot.
In the meantime my episodes of A-fib went from occasional attacks to daily events. Each episode lasted longer, growing from 15 minutes to 30 and then to hours at a time. I had been told that A-fib was asymptomatic in many cases. Yeah right. Most patients did not experience any symptoms, and that most people don’t even realize they suffer from A-fib.
Of course that wouldn’t be so in my case. My energy level went way down, especially while the episodes lasted. Breathing was a chore, I could not catch my breath, or inhale deeply. The threat of a full blown stroke or heart attack became all too real. Once again I dropped the cigs, and tried to focus on eating right. Exercise was a chore though, but I kept walking the dog.
The cardiologist, good old Dr. Like, monitored through a schedule of EKG’s, blood tests and Holter monitors. But that was all. There wasn’t a heck of a lot else he suggested. He’d say “yeah it’s getting worse. I’ll see you in a couple months. This “couple of months” ate up 3 years, while all the time I was expecting to keel over at any moment.
Did I mention that Dr. Like was really taken by the fact I was American? As such he would tell me stories of doing his residency at John Hopkins in Baltimore, Maryland. A time when Martin Luther King was preaching de-segregation and equal rights for black people. That the diners around the hospital were still designated as whites only. That gives you an idea how old the gentleman was, I’m guessing 80, and that some of his knowledge was a bit antiquated.
But as fate would have it, my family doctor was married to a cardiac surgeon, and knowing my current cardiologist wasn’t getting anywhere, asked her husband for help. A-fib wasn’t part of his repertoire, but by a stroke of luck he was friends with another surgeon that was having success with controlling atrial fibrillation with a procedure called catheter ablation. He’d put a word in for me.
This friend of his was the leading expert in Canada on this procedure. With his introduction it only took 6 months to get in to see Dr. H at the leading cardiac center downtown. It’s who you know as they say.
A much younger man than Dr. Like, by 30 years or more, Dr. H was very quiet yet very pleasant. Caring.
“It appears from all your previous tests, the EKG’s that have been done basically, that you’re now in A-fib 100% of the time.” Dr H stated on the first visit. Matter of fact.
“But I want to run some more tests, and if you’re a candidate for the procedure it will require a computer mapping of your heart. Nothing really difficult, just time consuming using a specialized MRI.”
“But first,” he went on, “let’s do a basic treadmill stress test.”
“My father has those all the time,” I replied. “Shouldn’t be an issue.”
So I went to my first treadmill test and failed miserably, even though there’s no pass/fail. An A for effort anyway? By failing I mean I couldn’t walk on the treadmill long enough to get the required info they were looking for. Stress the heart out and see what happens.
The object is to walk a treadmill at ever increasing speed to get your heart rate up to a certain level. They keep slowly increasing the incline and speed of the treadmill, making walking more and more difficult. Literally putting your heart under stress. By this time in life my arthritis had started acting up in my knees and coupled with my lack of energy due to A-fib the treadmill proved impossible.
“No worries,” Dr Ha said over the phone the following week. “We’ll try another method, which is an injectable drug that raises your heart rate without the treadmill. Called Persantine. It’s commonly used for people that can’t exercise and do the treadmill.”
“I’ll also order up a simple CT scan so I can see what’s going on,” he added.
The persantine stress test was scheduled at the same hospital where I failed the regular one. You are connected to an IV, while a cardiologist was present throughout the test in the event of complications. Once your heart was in full stress mode they would do an MRI to record what exactly was going on inside the heart.
Except it backfired, kinda sorta. The cardiologist introduced the drug through the IV, and I felt warmth spread throughout my body from the drug. The doctor kept his eye on the computer monitor, recording the heart’s activity during the procedure.
Sure enough my heart rate started increasing rapidly, and within 3 minutes it had gotten out of hand. At least that’s where my mind went.
“I can’t breathe,” was about all I could manage. I had gone into a full blown A-fib attack, and I thought my head and chest were going to explode
“This isn’t going well,” The cardio stayed flat out. “Your heart is under way too much stress, an over blown reaction.”
“I’m going to reverse this now, he’s at too high a risk.” This was directed to the assisting nurse. “Hand me the other syringe.”
“Kyd, there’s an antidote, and I’m stopping the test completely. We can’t go this route.”
With that he put whatever was in the syringe into the IV port, and within seconds I felt my heart rate starting to slow, my breathing not quite so labored.”
So much for any stress tests.
The following week I met with Dr. H, as he was still planning to go ahead with the procedure.
“It would have been nice to see the stress test results, but not a necessity.” He stated. “I can get everything I need in a full MRI of the heart. It takes some time, but I’ll get a complete view, basically a 3D image that will be used in guiding me through the ablation. My road map so to speak.”
“Is it difficult? The test I mean,” I asked. I had already figured the procedure itself, the catheter ablation wasn’t going to be a cakewalk. My habit of instilling as much internalized fear as possible. The longer I worry the worse the dread.
“Not really,” the doc replied. “Just time consuming. You lie on your back inside the machine and it will rotate completely around your torso to form a 360 degree view. It takes an hour of simply lying still. Can your back make it that long, Kyd?”
“Shouldn’t be a problem, I hope,” I replied.
“Twice, though? One with contrast, one without.”he explained.
I nodded yes.
“That will let me determine if the ablation will work in your case.”
“Oh, I already assumed we were going ahead. I was jumping the gun I guess.” I said this as part statement, part question.
The doctor said he couldn’t be 100% sure until he saw the results of this test. He then explained there may be underlying issues that will rule some people out.
In the fall of 2014 I spent a day at the hospital in order to complete the heart mapping. It was definitely the longest exam I’ve ever been through. I laid perfectly still, following instructions coming from a speaker near my head, telling me to hold my breath on occasion. Or else I could have slept through it.
To pass the time I counted the holes in the drop ceilings tiles above me, two foot by 4 foot press board panels painted white. Each panel was covered with small holes, just to break up the monotony I suppose, a little more stylish. All randomly spaced from what I could tell.
I was trying to figure out how those holes were made. A big press maybe? Like an inverted bed of nails, poke poke poke. I started at one corner of the tile above me and began counting. When I got up to 300 or so something clicked that I had seen this pattern of dots in a swirl already. Upon further examination I figured out there were repeated patterns throughout the whole ceiling tile. 3 very different groups on one large tile.
The same pattern was repeated every 16”, separate and distinct areas that were 2 feet wide. Aha! Not a press then, a roller that the ceiling tiles went under on a conveyor belt.
I was so proud of myself in figuring that out, but it served its purpose and the test was over and done.
Except they forgot to tell me I had to do it twice. The second time a dye was injected through the IV to provide contrast. A better picture so to speak. This time I simply slept through the test, having completed my hole counting task.
A week later I wound my way through the maze of halls and offices in the hospital to Dr. Ha’s office.
“Kyd, I got the test results back and from what I can see there’s no reason not to go ahead with the procedure.” Dr H explained. “And in your case the sooner the better. You have both A-fib, that’s causing the erratic heart beat, and atrial flutter, which is causing the abnormal rhythm. These explain it pretty well.”
He handed me a booklet and several other pamphlets on A-fib, atrial flutter, cardioversion and catheter ablation.
“Please read through those carefully, and the next time we meet I’ll answer more of your questions in detail.”
“But , I have to ask, when did you have a heart attack?” he asked. “I didn’t see that anywhere on your charts.”
“What do you mean?” I replied.
“You know, a heart attack. Your heart has a fair amount of scar tissue, which can only be attributed to a previous heart attack. It won’t cause me to cancel the ablation”
I thought for a minute and said, “Oh, so that was a heart attack. So I was right in thinking that. I should have called an ambulance but I didn’t.”
“February of 2005, I think,” I went on. “We were at a convention on Victoria Island, and after the banquet and partying with old customers I woke up with a severe case of indigestion, or so I thought.”
“I guessed it was something worse when the pressure in my chest went from bad to horrible. We had a suite, and I went into the living room and laid down on the couch, on my back, while it felt like a huge weight was pressing down on my chest. Then it felt like an elephant stood on top of that, pressing me down harder and harder.”
“So why didn’t you call 911?” Dr H asked.
“I thought I could just fall asleep and it would go away. To be honest, I figured trying to drink myself to death had become a reality, and I was ready to die. I always figured I would get so drunk one night that I wouldn’t wake up the next morning.”
“From the scar tissue it was severe enough to have killed you. Committing a slow suicide from alcohol abuse.” he added. “I’m so glad you quit.”
“You and me both.”
The rest of the appointment was spent on describing the actual procedure, the catheter ablation to correct atrial fibrillation, and cardioversion to correct the flutter issue. There were two types of ablation. One involved correcting the A-fib with ablation and inserting a pace maker. The second was a maze ablation, where the heart is scarred with a laser to force the electrical charge from the sinus node to travel in the right direction.
Atrial fibrillation ablation – Mayo Clinic
I won’t try to educate or bore you with all the details of the procedure. In a nutshell they run a tube up from your groin through a major artery all the way into the heart. This catheter is equipped with various laser like instruments, light and camera. Straight out of a 1950’s sci-fi movie. Once inside they fix the pathways, scarring numerous points to block that route of travel.
I was going to have the catheter inserted in my right artery near my groin, a small incision would be made where they could access the artery and run the catheter up and into the heart. Sounds scary huh? Yeah it was.
Since I was lucky enough to have both an abnormal rhythm and an abnormal heart rate, Dr. H was going to combine two procedures, cardioversion to correct the flutter through a series of small shocks, and the maze procedure through the catheter. Cardioversion is normally a totally non-invasive procedure, relying on electrodes placed on the chest and back to deliver a current to “re-set” the heart beat.
Atrial flutter – Diagnosis and treatment – Mayo Clinic
Look at it this way. There should be one path from the sinus node to the receptor that started the contraction of the muscle, a direct path from point A to point B. In my case there were too many side streets and alleys and laneways to get sidetracked by, and 90% of the time it missed its target. Kinda like fire and miss, fire and miss, fire and miss, miss…you get the drift. Twenty little attempts before it hit the mark and my heart actually “beat” or contracted.
Each attempt added to my exhaustion. Where a normal person’s heart beats 65 times a minute, mine was more like 20 heart beats and 200 attempts. If that makes sense. It was explained to me that the heart was fluttering and not contracting. This puts serious strain on the heart muscle, beating 200 times a minute.
The day finally came in April of 2015, and I was all set for the surgery to take place. Mrs Kyd had to come along (I was so happy she did) to make certain everything went as planned. It was done on an outpatient basis, and takes about 4 hours, then another hour of recovery. I was once again the exception to the rule, as the doctor decided I was going to spend the night afterwards. Oh well.
We were told that it was highly recommended that if we had a Power of Attorney and a Health Care Power of Attorney to bring them along. The likelihood of needing them is one in ten thousand, but it was still encouraged. Mrs. K had both tucked away in her bag with snacks and a good book to read.
The nurse at the registration desk checked me in at 6:00 am, showed the missus where she could sit for the next 3 or 4 hours. They would come get her when I was going to be moved to the patient room for the overnight stay.
The prep area, continued the nurses station and 10 beds sectioned off with curtains. I stripped off and put on the gown that opened in the front. My modesty had gone out the window a long time ago. I laid down on the bed, pulling the sheet up to cover as much as possible. It was late April but I was freezing.
I was then assaulted by an army of nurses, doctors, an anaesthesiologist and his side-kick doctor in training. An IV needle inserted into my left arm. A boatload of questions. Would I be willing to be in a research study? Sure, why not, anything for science. How about letting the resident do the general anesthesia? That’s fine, as long as I wake back up. Small laughs, smiles.
Sign here, here, here and here.
After half an hour of all the Q&A, I followed the nurse into the procedure room and was immediately overwhelmed. It was basically an operating room, they could perform just about every heart procedure and surgery if needed. Computer screens and monitors and equipment was crammed everywhere. Along with 5 people and myself. A couple of nurses and 3 doctors.
Normally they use a lighter dose of anesthesia to put you into a twilight sleep, where you awake but don’t know or feel a thing. But I was special, as always, and they were just going to knock me out. Great by me.
Then they attacked my poor, overworked and overweight body. The IV was connected to a tube coming from who knows where.
“This will make you relax and feel sleepy as we proceed,” the head anesthesiologist said.
I couldn’t keep track of who was doing what and gave up trying.
“We need to put some electrodes and monitors on your legs, chest and back,” one of the RN’s said. “So bear with us. Do you mind sitting up and opening the robe for a couple of minutes?”
“Here, let’s just take this off and make it easy.” I replied. With that I removed the hospital gown and handed it over to the nurse. There was a sheet draped over me anyway, and the gown was just in the way.
“Thanks, it makes my job easier.” She responded. “I’ll put these on your back and then you can lay down.” She had two pieces of what looked like aluminum foil, with a peel off back to expose the adhesive. Plus the prerequisite wires running out of each. I could tell she was placing one over each shoulder blade.
“What are those for?” I asked.
“Helps in conducting the electrical current for the cardioversion. A small shock to reset the heart. Plus it helps if we have to use the paddles in case your heart won’t start back up.” She said as she kept working away.
Now I was worried. But not too much.
I laid back down on the bed, and began to drift away. I remember the two anaesthesiologists putting a small pillow under my neck and asking me to lift my chin and open wide. Then the doctor in charge told the resident to go ahead, and a tube was inserted down my throat. I’m told I shouldn’t have remembered that but I can see it plain as day. The drugs hadn’t quite kicked in I guess.
That was it though. I have no idea what happened after that. Some of the rest of this story I am relating solely by what I’ve been told. Second hand info so to speak.
Mrs. Kyd said she sat in the waiting room, and sat and sat. You know what hospital waiting rooms are like. Old magazines, the local news at least on the television hanging in the corner.
Hour three went by, then hour four. Still no word. Her unease and worry started increasing, and by hour five knew something wasn’t going according to plan.
The waiting room was vacant by the time Dr. H came through the open door to see her. Seven hours after we had said goodbye.
“I apologize for the length of this, and making you wait so long.” he told her. “I should have sent someone out but we were a bit busy. It was more difficult than I imagined, but in the end I am confident we’ve got everything under control and working properly. “
The next thing I remember is waking up back in the same little space where the journey began. When I woke up my body started uncontrolled shivering, not from being cold but from coming out of shock. I tried to warn the nurse standing next to me, but was too slow, and I proceeded to throw up whatever was in me all down the front of her hospital scrubs.
The heart procedure was now history, one for the books. They wheeled me out on the bed where I finally met up with my dear wife once again. She followed as I was pushed through a maze of hallways and elevators to the patient room in cardiac ICU. My home for the night. I was told by the nurse that I had to lie still for the next 6 to 8 hours, especially the right leg, to allow the hole in my groin to heal up.
The cardiologist came up shortly after we got settled and explained what had happened. The scarring from the previous heart attack made completing the maze portion more difficult than he had expected. Trying to shock the heart to “re-set” the beat and eliminate the atrial flutter took numerous tries.
“Your husband didn’t want to cooperate” Dr. H told my wife.
The night was uneventful, I ate a bite of something bad and just slept. A nurse brought 4 or 5 blankets out and my wife spent the night dozing on a ledge that ran along the window. No recliner or chair, but she wasn’t leaving the room.
I survived, and the treatment actually works as intended. My heart was no longer in A-fib, and the atrial flutter ceased.
I had been warned by Dr. H that on a rare occasion it takes repeating the procedure, and just in case he wanted to monitor the heart on a more frequent basis. Every 2 – 3 months I had an EKG, and a Holter monitor every 6.
Sure enough, it didn’t last. I felt it one day about 18 months after the first cardioinversion/maze procedure. Same as ever, put my finger to my wrist and there it was again. Beat…skip…skip….beat beat beat.
Damn.
I called the doctor’s office immediately and sure enough I was back in A-fib.
I won’t bore you with all the details from here on out, but suffice to say it was basically a repeat of the first time, but at a much faster pace. It hadn’t taken long for A-fib to go back to where it was before the first procedure. Dr. H was correct in thinking it would take doing the cardioversion and catheter ablation a second time.
The one major difference was his plan to do a bilateral catheter ablation, meaning he was going to go into the heart from 2 directions. There were two entry points he would use, one on each side of my groin and he would work in both atria in my heart. A little riskier, but if we didn’t do the procedure my life expectancy was quite short.
The second procedure was scheduled for March of 2017. I was just turning 60. Once again we showed up at 6:00 am, having left the house at 5:00 in an Uber.
And once again we parted ways after registering and the missus went to sit in the waiting room. The same thing happened, except the hours kept slipping by. She knew when it turned to six hours of waiting there was another issue, there were more complications.
It slipped past seven hours to eight, then nine when finally Dr. H came into the waiting room.
“He’s fine Mrs. Kyd, he’s fine.” the doctor told her, seeing she was visibly shaken by now. “It was the most complicated surgery I’ve been through to be honest. He just didn’t want to cooperate.” Smiling. “To be honest he gave us a pretty good scare, but I wasn’t giving up.”
“That sounds like my husband.” Mrs. Kyd replied. “But he’s okay?”
“He’ll be very tired and sore for a few days, and since I went through both legs he needs to just rest for the next week,” he went on. “Even with all the complications it was successful. But like the first time we have to wait and see. I’m confident though.”
I was pretty well out of it and remember waking up in the patient room in ICU on the cardiac floor. Same floor, just a different spot. When I did finally come to and was cognizant of what was happening I felt a burning pain on my back.
The floor nurse was in the room reviewing my chart and I told her my back was really killing me. There were two issues. My lower back was starting to throb from being in one position for so long, and the way they had the bed positioned now it was putting more pressure on my tailbone.
I also told her my back was on fire.
“It feels like my shoulder blades are on fire or something.” I told both my wife and the nurse.
“Let me look.” the nurse replied. The gown was on opened to the back, and when she looked could see what the problem was.
“Oh, they got you pretty good.”
“What’s that?” I asked.
“You must have had some issues and they had to use the paddles to start your heart. They tape the foil on your back just for that purpose, helps direct the current to the right spot.”
“ They must have shocked you more than once to leave these marks, worse I’ve seen,” she added. “I’ll go get some cream to numb the pain.”
Dr. H had just stepped into the room. “I’ll write up a prescription to help with the back pain, but you need to stay as perfectly still as you can.”
“How you feeling anyway?” He asked me directly.
“Like I’ve been rode hard and put away wet doc.” I answered.
He looked at me quizzically.
“Old cowboy saying. I’m dead tired.” I told him.
“Well you were dead there for a bit longer than I anticipated. It was actually touch and go for a while.” he told me.
“Twice actually.” he went on. “I know you have a DNR, but I wasn’t going to lose you. No one’s ever died on me yet, and you weren’t going to be the first.
What else could I say besides nod “thanks”.
“I had the surgical team on the way and we were going to open you up, but luckily that last shock worked.” Dr. H was explaining. “I had to use the paddles and shock you more times than I liked, but finally it started up again. Your shoulders are a bit burned, sorry.”
“But I have to tell you we can’t do that again, let’s hope this one works for good.” and he turned to go check on his other patients.
That was 8 years ago and, touch wood, everything is working fine and dandy. At least with my heart. But what an experience.
”I hope you don’t mind.” Plays in my head from time to time.
Thanks again doc, thanks again.