It only hurts when I burp

Lying on a gurney in the PCCU (Progressive Cardiac Care Unit) there was only one detail I kept focusing on – my heart was at peace.

For those of you who know me and/or have been following my blog, for over 20 years I have suffered from SVT (supraventricular tachycardia) (May 7, 2017 – Thank you Pearl and fuck you heart! May 16, 2017 – Me Day…June 25, 2017 – My life is going down the toilet…Israel: Part I – The path to acceptance):

“Atrial or Supraventricular tachycardia (SVT) is a fast heart rate that starts in the upper chambers of the heart…Electrical signals in the heart’s upper chambers fire abnormally, which interferes with electrical signals coming from the sinoatrial (SA) node — the heart’s natural pacemaker. A series of early beats in the atria speeds up the heart rate. The rapid heartbeat does not allow enough time for the heart to fill before it contracts so blood flow to the rest of the body is compromised.” – American Heart Association

At some point in my 20s, I had an EKG (electrocardiogram) administered for no apparent reason and discovered an arrhythmia (a condition in which the heart beats with an irregular or abnormal rhythm) in my heart. After being told it was a common occurrence and knowing that mostly every member of my family had some kind of irregular heartbeat, I wasn’t concerned at the time. Several follow-up EKGs over the next few years pretty much repeated what I already knew – the arrhythmia wasn’t going away. If not for those EKGs, I never would’ve known I had this issue. And it wasn’t effecting my health in any way…until 1995…

As I mentioned in my last blog (January 12, 2018 – Go the f**k to sleep), in 1995 I was diagnosed with a rare neurological condition known as pseudotumor cerebri after two years of misdiagnosis while living in a painful hell. Electing not to have a stent surgically planted in my spine, I was prescribed the only medication that was going to alleviate my symptoms and get me back on the road to recovery – a medication that took advantage of the arrhythmia residing in my heart, setting forth the beginning of SVT over the next 22 years. Even though this medication was stopped when I got pregnant with the kid, SVT became a permanent fixture during the third trimester, landing me for the first time in the emergency room. A new medication helped to control the abnormal rhythm during pregnancy, but after giving birth my heart rate plummeted to 40 BPM and the medication was no longer an option. As SVT worsened over the years, I learned to control my heart rate by completely cutting out caffeine and it worked…until last year…

A year ago an endocrinologist prescribed levothyroxine (a generic form of Synthroid) due to a long-term battle with hypothyroidism. Unbeknownst to me at that time, its number one side effect is heart palpitations. Five months later, after arguing with this doctor ad nauseum about daily episodes of SVT (three of which were very serious episodes while riding my bike long distance), I took myself off levothyroxine and finally called my cardiologist…who was no longer practicing…now I needed to find a new endocrinologist and a new cardiologist.

At this point, you’re probably asking,”What the hell were you waiting for woman?!” Trust me, I’ve repeatedly asked myself the same question over the past year…and my reasons are quite simple:

(1) I “don’t do sick.” (March 30, 2017 – Death defying…) That’s just me and my genetics, plain and simple.

(2) About 15 years ago I had a cardiologist who performed a treadmill stress test and concluded that I needed a pacemaker – I wasn’t even 40-years-old and had a toddler at home. Needless to say, I ran from his office never to be seen there again.

(3) Ten years ago I was forced to find a new cardiologist who could perform a nuclear stress test prior to having laser surgery to eradicate some cancerous growths. Making the “mistake” of mentioning a history of heart issues, my oncologist insisted on the test before undergoing the laser to make sure I could handle the anesthesia. Luckily, my heart cooperated that day, and I passed the test with flying colors – hence my belief that I had SVT under control and surgery was no longer necessary.

(4) Seven years ago I had to have the same laser surgery, but this time the oncologist only wanted a treadmill stress test. Although the cardiologist was able to induce some palpitations and recommended cardiac ablation, he deemed my heart healthy enough to undergo anesthesia without incident. Of course I followed through with the laser surgery, but didn’t return to discuss the ablation.

(5) People die in hospitals…which I’ve witnessed firsthand. After 36 hours of labor and 3 hours of pushing the kid out of my body at 11:30am, I was ready to leave by dinner time. Following my hysterectomy, I could’ve easily jumped from my hospital bed dragging my morphine drip and urinary catheter behind me. Don’t get me wrong, most days I’m a really good patient…until you put me in the hospital.

(6) Anxiety – I’m that 1% who suffers the “worst case scenario.” It’s my track record and just my plain dumb luck…

So after 20 years of denial reinforced by doctors, EKGs, stress tests, echocardiograms and ultrasounds, I convinced myself that I could live with it.

The good news was that I had found a new cardiologist last summer who I liked and trusted, mostly because he agreed that the levothyroxine had been the culprit in bringing my SVT out of hiding with a vengeance. However, he also strongly recommended cardiac ablation. I agreed to follow up with the electrophysiologist within the same practice and go through with the cardiac ablation by the end of 2017…until the kid called about making aliyah and we impulsively flew to Israel…and then I came down with a respiratory infection that last over a month…more excuses…until that last trip to Israel when I had that hour-long bout of SVT before takeoff. On that flight I promised the hubby I would call the cardiologist as soon as we returned to the states.

And I kept my promise and scheduled a cardiac ablation for January 16th.

Barely capable of sleeping the night before and fasting since midnight, the hubby drove me to the hospital. Arriving fifteen minutes early, the hubby made a B-line for the toilet and I signed in as a receptionist slapped onto my wrist a red plastic bracelet with bold capital letters reading “ALLERGIES.” Okay, the first hurdle of anxiety has been jumped – someone has actually read my chart and knows of my numerous and potentially lethal allergies. Before I could sit down and make myself comfortable, I was whisked off to an office where a woman slapped another plastic bracelet onto my wrist, this one white and containing personal information. Second hurdle of anxiety jumped – no one’s going to confuse me with the patient who’s getting prosthetic testicle implants…

Fifteen minutes later I was called back to prep for the procedure. Walking by the nurses’ station, my escort was asked by her supervisor what my name was, to which I announced in a sing-song voice with jazz hands, “Alice!” My escort followed suit and all the staff giggled. Anxiety hurdle number three – everyone’s nice and easily entertained.

Changing into a hospital gown and hopping onto a gurney, I was greeted by another nurse with a fabulous sense of humor and an ability to avoid pain through distraction – wiggle your toes while I shove this IV needle into your vein…and it actually helped. Fourth anxiety hurdle – limited pain through genuine kindness. Another nurse administered one last EKG confirming the long ago diagnosed arrhythmia lived with for over 20 years…and the hubby was allowed to wait with me…and we waited.

It suddenly dawned on me that I had met the electrophysiologist only twice – once eight years ago and the second back in August of 2017…what he hell did he look like?! What if some dude came over and claimed he was my physician?! What if I did end up with testicular implants?! Thankfully, all the staff confirmed his identity as he approached my little corner of pre-op. Anxiety hurdle number five – doctor recognition.

The doctor proceeded to walk us through the procedure – how they would sedate me, insert catheters into veins in both sides of my groin and thread these tubes to my heart in order to deliver energy in the form of heat to modify the tissue in my heart that was causing the arrhythmia. After years as a psychiatric social worker with a few years of medical transcription in between, his words didn’t phase me in the least. When he started to explain the possible “down sides” of the procedure, that’s when my brain got stuck…

Bleeding or infection at the site where the catheter was inserted – okay, I could deal with this one…wouldn’t be the first time.

Damage to your blood vessels where the catheter may have scraped as it traveled to my heart – okay, just try to visualize this one…that’s when the brain stops thinking…

Damage to my heart’s electrical system that could require a pacemaker…See! That cardiologist way back when was right!

Possible stroke -I had nightmares of this days leading up to the procedure.

There was no turning back…and the doctor literally evaporated…okay, so maybe not literally…

…and then I made it known loud and clear that I.WAS.ANXIOUS

By the end of the night, I was known as that “one who said she had anxiety…”

That’s when one of the OR nurses introduced herself (and when I started paying attention to names for some unknown reason at the time).  Her name was Holly, and she explained what her role was as well as all the other women (except for one man who she kinda blew off) that would be in the operating room with me. Obviously recognizing my anxiety (perhaps because of my repeated exclamations of feeling anxious), Holly managed to calm me down after answering the routine virally paranoid  questions about traveling abroad, to which I answered, “Yes…Israel” and to which she exclaimed her pending visit with her church group this coming October. Anxiety hurdle number six – interfaith love of Israel and a topic I love to talk about.

After meeting one of the anesthesiologists, Tom, who in the end had nothing to do with my surgery, Holly and I chatted about Israel as she wheeled me through a labyrinth of hallways to the OR. The last stop before D-Day, I waited and watched in the hallway as the ladies prepped the operating room…and, holding back sobs of fear, I clearly announced, once again, that I was ANXIOUS and guaranteed my heart would go into SVT upon request…and Holly, ever my savior, came back to reassure me that all was good with the world and we continued to talk about Israel. And then I met David (King David?!), the lead anesthesiologist who reminded me of my meeting Tom (doubting Thomas?!) and mentioned that Leah would be my anesthesiologist for the procedure (who, I would later find out, had a lunch break during my ablation?!) Wait…how many anesthesiologists do I need for this “quick” procedure?! Carefully sliding me from gurney to operating table, I made a note of all the names of the people present in the room – Holly, Kathy, Karen, Benjamin, Leah…and I reminded them about how anxious I was, trying to link their names to some personal significance…

Kathy! My oldest sister’s name is Kathy! Karen! Several of my best friends are named Karen! Benjamin (who was Asian and I referred to as Benyamin, which produced a giggle), the hubby’s paternal grandfather! Leah! Beautiful Leah, our matriarch and wife of Yacov! Anxiety hurdle number seven…as my vision got blurry and my speech slurred, I told Leah how sneaky she was for slipping me a Mickey when I wasn’t lookin’…

One of the things about my brain is that I dream very vividly – if I put my mind to it, my dreams would make fantastic screenplays. In essence, I sometimes have to consider whether or not my “dreams” are real or imagined. So when I found myself having conversations throughout my surgery, I thought nothing of it. I was simply “dreaming” about my experience. Only later did I come to find that I was actually conversing with the medical staff in the OR during the procedure.

Oh…the two things I failed to mention earlier:

(1) Warning the cardiologist that I was a sleep talker, and

(2) Asking Tom, the anesthesiologist, what would happen if I woke up during the procedure. Answers:

Cardiologist: “Can we record?!”

Anesthesiologist: “No problem! The drugs are so good you won’t even know what’s happening.”

I remember talking about Israel with Holly and having a conversation with Leah about being a red head. I “dreamed” about my mother and her family…did I discuss this out loud?! (Side bar – my mother’s father is buried across the street from the hospital Meemaw – December 5th).

Next thing I knew, Leah was talking to me about the procedure and I was WIDE awake…which apparently freaked out the entire medical staff…because I had been loaded up with twice the required sedation for someone my size…the words “elephant tranquilizer” whispered throughout the OR…

Although the procedure itself only took one hour (thanks to my cooperative heart going straight into SVT), apparently, it took almost an hour to get me sedated because I kept waking up throughout the procedure. Leah explained how I went under almost immediately…and then I opened my eyes and started talking again…repeatedly – something the hubby and the kid have experienced numerous times over the past several years. Yeah, it’s freaky for those witnesses, but I have no recollection whatsoever of these events. Leah explained that some people can metabolize chemical enzymes quicker than others. Who knew?! Either way, anesthesiologist Tom was right – I didn’t feel a thing and honestly didn’t give a s**t…

Doing better than anyone had expected, I actually skipped two levels of recovery because I was so alert. Four hours after surgery, the hubby was driving us home.

 

Two days post-surgery, I feel awesome…although the “elephant tranquilizers” are drastically wearing off and occasional chest pains remind me of my ordeal…but it only hurts when I burp…

I can’t get over how calm and quiet my heart feels. For the first time in 23 years my heart isn’t struggling and I barely notice it’s even there. Me and my happy heart are ready to live again.

I’m eagerly looking forward to my next bike ride…without incident…if only the weather would cooperate…

“Wo! I feel good, I knew that I would, now
I feel good, I knew that I would, now
So good, so good, I got you”

I Feel Good – James Brown

“I had run for 3 years, 2 months, 14 days, and 16 hours.” – Forrest Gump

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Go the f**k to sleep…

“The cats nestle close to their kittens now. The lambs have laid down with the sheep. You’re cozy and warm in your bed, my dear. Please go the fuck to sleep.” – Adam Mansbach

When I was pregnant with the kid, the hubby and I “planned” the course of her life over the next nine months with precise judgment, Dr. Spock and What to Expect When You’re Expecting in tow. You see, my pregnancy was going to be “perfect” – there was no room for failure.

When I was a little girl, my “plan” was to have six children – yup, just like the Brady Bunch, three girls and three boys…minus the death, divorce and optional indentured housekeeper. As an adult, having worked with some of the most damaged children as the result of the most messed up parents in existence, I swore off children forever. The hubby wasn’t much keener on the idea either, thanks to Family Court pretty much zapping him of any desire to procreate. But then it happened…after seven years of marriage, me having transferred to the adult unit and the hubby becoming a managing attorney, we sat on the couch and admitted to one another through a waterfall of tears that we really wanted to have kids together…and then we discovered that I couldn’t get pregnant…

“Mann Tracht, Un Gott Lacht” – Man plans and G-d laughs…

In 1995, after two years of multiple physicians telling me, “It’s just allergies, hun,” I was diagnosed with a rare neurological condition know as pseudotumor cerbri. Two physicians have earned street cred here – Dr. Howard J. Gross, Ophthalmologist (for catching it) and Dr. Robert Sergott, Neuro-Opthalmologist/Wills Eye Hospital (for successfully treating it).

“Pseudotumor cerebri literally means “false brain tumor.” It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF). The disorder is most common in women between the ages of 20 and 50. Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating sounds within the head, closely mimic symptoms of large brain tumors.”

National Institute of Neurological Disorders and Stroke

That “buildup or poor absorption of (CSF)” does quite a number on your head – headaches like you’ve never experienced ever in your life (and that includes migraines, of which I’ve had a number). Close your eyes and envision the inside of your body – your heart pumping blood, your lungs filling with oxygen, your kidneys filtering impurities, your bladder filling and releasing. Now imagine the fluid that runs up and down your spine into and out of your brain…and it gets stuck inside your head…that head that contains your brain…inside a skull made of inflexible bone. There’s only so many openings in the skull allowing fluid to escape…or get trapped. Enter the sella turcica:

Sella-turcica-anatomy

Not only did my CSF push its way through my eye sockets, causing temporary blindness and frightening vertigo, it decided to form a pool inside my sella and, in turn, drowned and pulverized my pituitary gland into a pancake. Biology 101 – a mammal needs a pituitary gland to procreate. But my pituitary gland didn’t know that because it was a hot mess smashed against my sella wall.

Luckily for me, in 1997 the particular medication I needed in order to get pregnant had finished its trials and was available for use – cabergoline. It was the easiest medication I’ve ever taken in my life – half a pill once a week and no side effects whatsoever! Within two month’s time, I was miraculously pregnant with the kid. Eight years later, following my hysterectomy, the obstetrician would tell me how baffled he was that I ever got pregnant in the first place – numerous fibroids (one as big as a grapefruit) had grown like fungus on an old rusty pipe and severe endometriosis had left me hemorrhaging, my uterus having fused with my bladder and both fusing to the back wall of my abdominal cavity (which would explain a very painful pregnancy). By that point, we all believed the kid was a true miracle…

One of the greatest things about the kid is that she has slept through the night since the age of five weeks and in her own bed. She unquestionably takes after her father, who can fall asleep at the drop of a hat without warning. Since day one, every night at bedtime the hubby would take the kid to her room, read a book to her and she would fall asleep mostly without incident. What the kid sucked at was napping, which completely ceased the day we took away her binky at 18 months-of-age. In the end, it was a godsend – she was definitely going to sleep through the night for sure!

I can’t say I’ve ever been that good at going to sleep. And the kid takes after me when it comes to napping – they’re nonexistent…

When we were little girls, Regina and I shared a bedroom. Tucking ourselves into bed at night, we patiently waited for dad to come upstairs to turn off the lights. Begging him for a bedtime story, my father would reluctantly fabricate some kind of tale to get us to go to sleep: “Once upon a time there were two girls named Regina and Alice and they went to bed. The end.” Other times he seemed to be telling a story, but inevitably the “story” was just a lengthy joke with punchlines we seldom understood. And sometimes he liked to play pranks…

One of the big fads back in the 70s was baton twirling. On a regular basis the kids on my block would gather together (girls and boys alike) in someones driveway and practice various twirling routines. We even formed a “class” at one point, two older neighborhood sisters being our “teachers.” But the real rage of baton twirling at that time was the glow-in-the-dark baton – a green plastic rod with rubber glow-in-the-dark balls on the ends. Hours were spent in darkened rooms twirling away to watch the streaks of light flashing through the air.

Back to our nightly bedtime routine and that occasion when dad played a prank so worthy it sticks in my mind to this day. After telling whatever “story” of the night, my father turned off the light and pretended to leave the room, closing the door “behind” him. As Regina and I drifted off into la-la land, we heard the soft moanings of a ghost lost in purgatory. Sheepishly peeking from behind my covers to see the entity in the dark, all I could see were two small green eyes floating in the air…and then…”BOOGETY, BOOGETY, BOOGETY!” those small green eyes jumping up and down in some kind of ritualistic dance performed prior to devouring its prey. Unbeknownst to us, dad had secretly grabbed the glow-in-the-dark baton before turning off the lights and stayed in the room long enough to convince us he was long gone downstairs…

Now, decades of fear sleeping later, I can’t sleep. Between the hot flashes and mind-racing anxiety, I pray for one solid night of rest…waiting for those small green eyes to perform one more time…

“Scary monsters, super creeps
Keep me running, running scared”

Scary Monsters – David Bowie

“I had run for 3 years, 2 months, 14 days, and 16 hours.” – Forrest Gump