Life with Inappropriate Sinus Tachycardia (IST)
Updated: Apr 15
Ten years ago next month began the most difficult decade of my life by far. What started as a benign, unnamed arrhythmia, wreaked so much havoc on my body, my life soon became the center of a horror novel. For those who suffer from rare diseases, the greatest gift we could have is understanding from the loved ones surrounding us. We need their unwavering support, unending belief in us, and their ever-present encouragement as we trudge a very lonely path attempting to find healthcare providers who understand what we have and offer new treatment options as symptoms worsen. But what anyone battling a rare disease wants from friends and loved ones is the ability to walk in our shoes for a day, so you can see and feel the challenging moments we face and find ways to overcome on a daily basis just to get by.
If you look at the picture above, you'd never know I had a problem. But that's how IST is, like many other rare diseases. The symptoms come and go. And this patient would never take a picture in the middle of an episode lying in bed. I owned a new physical therapy practice in the small city where I lived, so I divulged very little of my arrhythmia to even the closest friends.
Five years ago nearly to this very day, I sat down and wrote this list, so I would never forget what everyday life was like when I lived with inappropriate sinus tachycardia (IST). I knew I would soon forget these difficulties after I had my SA node ablation. Although not ready to at the time, someday I wanted the world to know- those who are curious, those with loved ones also diagnosed with IST, for the medicical specialists who graciously treat IST, and for the medical professionals who instead of acknowledging it, minimize it, ignore it, and/or mis-diagnose it as anxiety. But most of all, this is for the people who are still living the IST life. It's a hard and lonely life, filled with last minute cancellations, missed summer outings, and the inability to live a normal social life, work life, and home life. There was never a heads-up for when another bout of rapid tachycardia would come on, for when it might end, how exhausted it would leave you feeling, and for me, whether another transient ischemic attack (TIA) would result. For those of you who know this IST life intimately, keep fighting the good fight my friend.
It's been five years now since I had two successful SA node ablations for IST and focal atrial tachycardia and had a pacemaker implanted. Reading this list brings back so many tough memories. It's amazing how much the brain can forget, but the struggle to survive each grueling day never knowing if or when, or how many times my symptoms would appear and completely stop my day in its tracks was very real, even to this eternal optimist. But reading through this list reminds me, that even though the serious complications I have survived these past 5 years since having the ablation that caused complications that nearly cost me my life, knowing what I know now, I don't regret it. The 52 items that made the list below clear up any questions as to whether or not I needed that heart ablation. By the time I had begun searching for an electrophysiologist (EP) to perform the ablation, the symptoms had become so frequent and so limiting, I wasn't. Really. Living.
So here it is... what life is like living with inappropriate sinus tachycardia (IST):
-When you are so short of breath after walking up the stairs to switch the laundry that you can’t, because now your arms are too weak to lift the wet laundry even in small bunches out of washer to transfer to the dryer.
-When you are determined to clean the house, and you need a 20-minute break after washing 2 windows.
-When you walk upstairs to discipline your toddler, and you have to sit on their bed and wait to catch your breath before you can speak. Then after talking sternly to your toddler, you need a two-hour nap, because you are so exhausted.
-When you walk upstairs to get your crying baby out of the crib, only to have to sit down first and rest to catch your breath, so you don’t drop her while lifting her out.
-When you walk upstairs to change a diaper, but have to sit and wait for 5 or 10 minutes to regain enough strength to change said diaper.
-When your MD tried taking you off your meds in the middle of the hottest part of summer, and you are panicked, because you are already so lightheaded in your air conditioned home that you are afraid you will drop your infant if you go upstairs and try to bring her back down after her nap. But it's the first day of school, and it's time to pick up your 6-year old from school. You decide to play it safe and call your husband to pick up your daughter. But he says he can't home to help you. So you call the school to give them a heads-up that you will be late, and upon arriving 20 minutes late to pick up your daughter from school with 2 young children in the car, the school staff lecture you for picking up your child late from school.
-When you are holding your toddler in the pool and suddenly your left side goes weak (transient ischemic attack or TIA). You know you have to quickly hand her off to your husband before you simply drop her in the pool, and you still need to reserve enought strength to safely exit the pool yourself.
-When you are driving with 3 little kids in the car to a medical appointment unrelated to your heart, and you aren’t sure when you get out if you’ll be able to walk since you’ve just lost the ability to use your left hand in the middle of the drive (TIA from IST).
-When you are driving and are so lightheaded that you wonder if you might faint. Should you pull over; but then what, since resting probably won’t relieve your symptoms?
-When you have to sit down quickly in the middle of the grocery store aisle so you don’t pass out. Your husband wants you to get up, but you think you will pass out, and imagine the scene and his embarassment then if an ambulance is called.
-When you have to lay down and rest on the lawn after 30 seconds of trimming a shrub because your heart is pounding out of your chest, and you feel like you will pass out..
-When you have to go back into the air conditioned house after sitting outside for 15 minutes on a mild summer day to watch your kids play, because you are getting too light headed.
-When you have to sit down to talk to a neighbor in your air-conditioned kitchen, because you were outside for a little while and still feel like you might pass out from lightheadedness.
-When you have to catch your breath before talking again after demoing a few squats and lunges to a patient in the clinic.
-When you have to stop talking during a consult with an EP, one hour after running up two flights of stairs (actually, running up ½ flight, then walking the rest, because you were too short of breath to run up 2 flights running late for the appointment).
-When you routinely offer your kids $1 to run and get your shoes from upstairs, because you know you will be too short of breath to get them yourself.
-When you are sitting calmly in a professional education seminar and you try not to jump in your seat and clench your chest so no one around you notices, as you suddenly feel like your heart just got shot from a sudden burst of tachy.
-When you are sitting at church listening to the speaker in small group and suddenly feel like you might pass out. You debate risking passing out there, or the odds of passing out if you get up and quietly leave the room to find an empty room to hide in and lay down.
-When you are talking to a patient in the clinic, and you are so short of breath that you scoot your stool up against the wall to support yourself in case you pass out.
-When you are treating a patient and your left arm feels suddenly weak (TIA), but thankfully you have a student available to take over your patient treatment so you can quietly exit the room, trying hard not to limp as you walk out of the room..
-When you have to lay down and rest for 20 minutes after taking 1 trip down a 50 ft driveway teaching your 5 -year-old how to ride a bike.
-When as a former marathoner, you need a 3 hour nap after walk/running a 5K with your 6-year-old, and literally cannot lift your body off the couch for hours.
-When you have to ask your 7-year-old to carry the two-person tube up the 3 flights of stairs in the water park, because you need your right arm to hold on to the railing to help compensate for your left sided weakness (stroke residual) and pause to catch your breath to make it up the stairs.
-When you can’t hold your child’s hand on the left side anymore during a walk, because that arm is getting too weak (TIA).
-When you have to stop in the middle of a family walk and sit down on the road in your neighborhood, because you are too lightheaded to keep walking and don't want to pass out.
-When you have to take a 2-hour nap instead of going to church, because the tachy began when you tried putting your shoes on as you were headed out the door.
-When your head and body slumps forward because your neck is too weak to hold it upright, but you are thankful you are driving in a car and the seatbelt can hold you upright, so you can still drive home.
-When you accidentally run up the stairs as you used to do, only to be reminded half way up why you can’t do that anymore, and have to crawl up the rest of the steps because your legs are too weak and your heart is pounding too fast.
-When you need to use your kids as a crutch for walking after forgetting your cane, and walking up a small rise at the zoo is too much (residaul from stroke).
-When you have to sit down when everyone else at a party or social event are standing, because your legs are simply getting too weak; and you are too lightheaded to keep standing (even better when you are standing and talking to your relatives a generation older than you).
-When you have to lay down and take a two-hour nap after 30 minutes of sitting and visiting outside in the shade on a Wisconsin summer day.
-When you have to pull yourself up 3 flights of stairs with your "good" arm and hug the wall to get back to your hotel room so you don’t pass out after using a hotel pool witht he kids on a floor without elevator access..
-When you can’t even sit on the edge of the pool with your kids because you already feel lightheaded enough to pass out.
-When you need a nurse in the ER to dress you, hours after being “checked out” and given potassium, because you are still using your arms to keep you from falling off the side of the bed (TIA).
-When you can’t watch the new season of 24, because the suspense makes your heart too tachy.
-When you can’t watch the Badger basketball NCAA tournament game, because your heart is too tachy.
-When you hope your racing heart settles back down while watching your niece’s hockey game that went into overtime and a shoot-out, so you don’t embarrass your family when you become too weak to get up and walk out of the arena afterward.
-When you can’t walk to the Badger game or to the festival, but you also can’t get any closer parking, because you are not disabled enough.
-When you need a nap after taking a shower, because the water was too hot.
-When you need to lay down for the rest of the night after coming home from work, because the 5-minute ride in a hot car on the way home was too much.
-When you can’t take a bath or shower, because your heart is already beating too fast.
-When you dare to try a hotel whirlpool for a minute, and then rest for 30 minutes on a lounge chair afterward to be able to safely walk back to your room.
-When you can’t go upstairs to tuck your kids into bed, because your heart is already racing from lying on the couch.
-When your left arm suddenly goes weak after walking upstairs to put on some make-up (TIA), effectively canceling your Sunday afternoon trip to Sam’s Club.
-When people stare at you, thinking you look perfectly fine, but wondering why you aren't volunteering for that church or school event, when really you don't want to inconvenience the organization when you suddenly cannot show up to work your assigned shift at the last minute.
-When you have to cancel a week of patients because you can’t walk or use your left arm well enough to work (stroke).
-When you are stuck an hour away and are too lightheaded to drive, but the ER has no help for you, so you call your husband to take the kids home and you risk driving home to get the car back home by yourself.
-When your heart is beating too fast or uneven to be able to fall asleep.
-When you get to your hotel room after being in the pool with your kids for 30-minutes, and you need a 30-minute break before taking a shower because you are so lightheaded.
-When you need to lay down and rest the remainder of the night after two hours in a water park, only having gone down the "big" slide twice.
-When you are 5-months pregnant, sitting in the waiting room with your husband, and you put your hand on his thigh, because you are slowly sliding down and out of your chair,. You are hoping he will notice before you slide all the way down and hit the floor, because you are feeling so weak and lightheaded.
-When you are 5-months pregnant, and your regret not taking the wheelchair offered to cover the 75 ft walk to your doctor’s office. Now you aren't so sure you can make it without passing out due to lightheadedness, clinging to the wall for assistance.
-When you arrive at the Preschool Mother's Day program, and the portrait of mom that your 5 year old son colored for you shows you lying in bed.
#IST #raredisease #DoctorHealThyself
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.