Getting heart surgery before fifty was NOT on my bingo card 😅
tl;dr: My doctor heard a murmur and an ultrasound found a flappy valve and some masses. I had heart surgery to repair my mitral valve. Turns out it was both a genetic defect (the flappiness) and caused by my hEDS (the masses). I’m doing fine 😄 – I had surgery on Jan 17 and was out by Jan 20, and I’m healing well.
The Full Story:
It all started about two years ago when my GP heard a pronounced heart murmur during my yearly checkup. She put me on the list to be seen by a cardiologist, and I waited for them to call me. A few months later, I got a voicemail from Clinique Médicale L&S saying that they had my file and that I needed to call to book an appointment. I called twice a day, every day for two weeks, leaving messages every time and never managed to connect with anyone. Finally, frustrated, I tried emailing their contact email and finally received a reply… to call the number I had been calling. I replied that I HAD been calling, and no one had ever answered. A day later, I received a call from a very rude woman who told me they no longer had my file and that I couldn’t be seen anymore because I had waited too long to contact them.
Cue my ire. Fuck them.
But thank gods that I didn’t go with them because a few months later, I got a call from the Montreal Heart Institute (really the best place to get your heart treated!) – they were taking my case and scheduled an appointment with a cardiologist for me.
By the time I saw the cardiologist (who is younger than I am… when did that happen?), it was nearly a year since my GP heard the murmur. Sometimes, I really hate our medical system… it might be free, but it can move at a snail’s pace through the endless hoops.
I had an EKG at the MHI – ou, en français, l’ICM (l’Institut de cardiologie de Montréal) – which is across the island of Montreal from me (so an hour and forty-five by bus on a bad day, an hour on a great). My cardio looked at the results, listened to my murmur, and said it was probably a bicuspid aortic valve with some stenosis (basically two flaps instead of the standard three plus a slight hardening, making my valve leak/be less efficient). He said it could have been caused by my hEDS (Ehlers-Danlos Syndrome… the hypermobile kind) because we’re prone to valve malformations. He also said not to worry because I was still young and seemed otherwise healthy. He sent me to the blood clinic and told me to wait for a call.
Nearly a year later, I got a call to come in for a heart ultrasound (Dec 30th, 2024). I showed up, went through triage, put on a hospital gown, and then was shown into a small dark room. The technician was very nice, and so was the attending cardiologist – both young women from France – but they were EXTREMELY worried by what they found.
I had two masses on my heart and a small perforation on a valve that wasn’t closing correctly. They thought it was caused by endocarditis, an infection of the heart, the symptoms of which could explain why I was sick for the whole of November (2024): fever, vicious sore throat, no energy. But it was now the end of December, and the survival rate for untreated endocarditis is zero.
Could the three courses of antibiotics I was given in November by doctors at the Queen Elizabeth and the Montreal Jewish Hospitals have stopped the endocarditis in its tracks, leaving only the masses or “vegetation” behind? Endocarditis can only be treated by a long course of intravenous antibiotics (and sometimes surgery)… but here I was a month later, free of any fever or pain. It was baffling to every doctor. They wanted to admit me right away and start preparations for surgery, the worry being that the vegetation could break off my valve at any moment and cause an embolism.
Basically, they felt like I was a ticking time bomb.
But I wasn’t ready to just stay at the hospital and get everything started. Plus, Kiddo was home alone – though she ended up going to M’s place because it wasn’t certain that I would convince them to let me leave…
But I did, with the promise to be back the next day and report directly to the ER.
I showed up bright and early the next morning and checked into the ER, where I waited for HOURS on an empty stomach for them to call me. Finally, I was seen by another doctor who was just as perplexed as the previous one. By all accounts, I should have been feeling like utter crap, but other than being hungry, I felt fine. Not winded, no chest pain, nothing.
They put me in a small room in the ER (that looked a little like the ones in House with the glass doors) and I met with a doctor who re-explained about the masses and the perforation and the flappiness of my valve. He was also very worried about my extremely fast heart rate (which has always been fast), so he put me on a beta blocker. One nice side effect of beta blockers is they reduce anxiety… so I was doing a-ok.
FINALLY, about six hours later and completely starving, I was wheeled into a procedure room for a transesophageal echo – an ultrasound down the throat to take a closer look at my heart. Not terribly pleasant, but I’ve had two endoscopies, so it wasn’t unfamiliar. However, unlike endoscopies, the TEE lasted nearly a half hour.
Bad news: the masses on my heart were even larger than what they’d seen on the ultrasound the previous day. And, weirdly, the flappiness of my mitral valve seemed unrelated to the masses. Cue more bafflement from the doctors.
After they fed me, they installed me in a private room on the 4th floor and hooked me up to a Holter monitor (basically a portable EKG) to make sure I was stable. Because it was New Year’s Eve, only emergency tests were being done between the afternoon of the 31st and the 2nd. The earliest I could get a PET scan was on Friday the 3rd. I was to stay in the hospital under close watch until then.
The next day was super quiet at the MHI. I had nothing to do but read and watch TV on my kindle. Doctors came and went, asking me the same questions over and over again: “You’re sure you don’t feel faint? Out of breath? You have no chest pains?” and asked me to describe the sickness that had plagued me for the whole of the month of November. They were convinced that the masses were left behind by endocarditis… but how had I survived the infection? I kept telling them that the infectious disease doc I saw at the Jewish General had ruled out endocarditis… she said I had cytomegalovirus AND mono that just ran their course and went away.
They were not convinced.
Since I had no tests until Friday and I was VERY stable, they let me go home overnight on the 2nd, so I was able to spend the night in my own bed. Huzzah! My BF and Kiddo had been taking turns feeding the cats while I was in the hospital, but if they wanted to rush me into surgery following my PET scan, I needed to make some better plans for the kitties: T would take The Good Cat, and M and J would take The Evil Cat… whenever surgery ended up getting scheduled.
I returned to my hospital room the next day at noon and was quickly prepped for the PET scan and coronary catheterization (they shaved my arm and one side of my crotch… asymmetrical pubes, lol).
The third test I had done on the 3rd was a thoracic angiogram. The PET scan found nothing to worry about, the CC showed that my arteries were “lisses et jeunes” (smooth and youthful), and the angio was clean. However, as the tray slid out of the machine, part of my robe and a tube got caught in the tracks. I was stuck halfway in for about 15 minutes while they tried to free me. The tech said it was the first time it had ever happened. 😆
Once they reviewed everything, they decided I definitely needed surgery ASAP.
However, M and J were going to be out of town, and I really, really wasn’t ready to have surgery just yet. I wanted to spend some time with my kid at home before it happened… just in case, you know? It’s heart surgery. It’s scary.
They admitted that I was very stable and that if I had survived this long with masses on my heart and hadn’t died of an embolism yet, I probably was okay to go home to wait for my surgery date. Plus, I had to see a dentist to get my teeth cleaned before surgery (again, the fear of endocarditis), and the hospital dentist wouldn’t be able to see me until Tuesday the 7th. They decided to hook me up with a dentist on their network (free dental care!) in the next few days… then they let me go.
I was free! I went home, hung out with Kiddo and BF, and tried not to think about surgery. Oh, and we went to see Wicked, which was amazing.
I also learned from my mom that my paternal grandfather and two of my uncles on that side had faulty mitral valves too… so it was hereditary. Talked to my uncle about his experience and felt a lot better about the whole thing in general.
(LOL Kiddo said she was relieved that only the men in the family inherited the flappy valve… then she blinked a few times and laughed.)
I went to the dentist on the 9th, which was also way across town. I got there only to discover they had given me the wrong address. I had to call an uber and was a half hour late for my appointment (the dentist was moving offices the next week, and the nurse had mistakenly given me the new address). I had the quickest and most painful cleaning of my life. He found a small pre-cavity that I’m supposed to go get fixed on the 11th.
On the 10th, I went back to the MHI for another blood test and a chest X-ray, the latter of which didn’t happen because the technician saw that I’d gotten a chest X-ray back in November when I was sick.
Then, I got my surgery date: January 17th, 2025 at 8 am.
I tried to relax and not worry about it too much. It was only heart surgery, after all 😬. Thankfully, I’d learned on the phone from the anesthesiologist that they were going to do the minimally invasive type of surgery and not full-out open heart, chest-spreader type surgery (they had been worried that they would have to do it that way because of the masses on my heart causing complications).
The evening before surgery, I had only partially packed, aiming to do the rest of the packing in the early morning before I left for the MHI.
The next morning, at around 5:40 am, I was awoken by my phone ringing. It was the hospital—they were wondering where I was. Apparently, the time for my surgery had been bumped up, and they had left me a message to that extent… except I never got it. There’s no record of them calling me.
I quickly trimmed down my beard, showered with the special skin detergent they gave me, finished packing, and hopped in an uber (January was an expensive month for ubering). I reported to the OR and apologized profusely. They were all very nice and understanding. I really do love the staff at the MHI—I had nothing but great people taking care of me the whole time.
They started processing me (omg they shaved most of my body – I am still itchy) and got me prepped quickly for surgery. I met with the anesthesiologists (one of whom I had spoken to on the phone a few days prior) and the surgeon who was very impressed with my chest tattoo and promised not to wreck it.
I was wheeled into surgery shortly after.
I woke up later on to the feeling of the breathing tube being taken out; then, I must have fallen back to sleep because the next time I woke up, I was in the ICU. There was no point in people coming to visit me the same day as surgery since the MHI is all the way across town, and the limit was 10 minutes per visit, so I just relaxed and snoozed while the staff checked in on me to make sure I was comfortable.
I wasn’t in a whole lot of pain, but it was difficult to find something that worked with my wacky system. Opioids have never really worked on me (or do very little besides making me hallucinate/paranoid), so they were trying different combinations of stuff on me. I had so many tubes and wires coming out of me: a tube draining the lung they had collapsed for surgery, a wire for the temporary pacemaker, a small line that delivered lidocaine directly to the surgery area, a catheter in my neck, wrist, and crook of my arm… and I’m sure I missing something.
I actually felt pretty good for someone who had just had surgery.
M, Kiddo, and BF all came to visit me in the ICU the day after surgery. Then, that evening, because I was doing so well, they moved me into my proper hospital room. Did I get a nice private room like I had on the 4th floor?
No. I was squeezed into a room with three other guys. Sigh. One guy was in his eighties and had his sons come visit him. Before I arrived, he had had some kind of tumble walking around after surgery, so he couldn’t get around on his own. The other guy across from me was in his early seventies and seemed nice. He flirted with the nurses, but not in a super creepy way. He also had a newish girlfriend who came and visited him.
Then there was Moaning Guy next to me. He was in his sixties and was just… entitled and rude and overdramatic and loud. He was dealing with post-surgery pain, yes, but on top of that, he had stomach issues. He was calling it Crohn’s, but from his description, I thought it was gastroparesis… and it turns out I was right. But then he wouldn’t let them install a nasogastric tube, and it was a whole thing. We were separated only by curtains so I could hear everything and I am SO glad I have a sleeping mask with integrated speakers because I wouldn’t have gotten much sleep without it. He said some pretty terrible things about the nurses and doctors.
Meanwhile, I (seemingly the youngest patient in the whole hospital) was getting around by myself in no time. I had a little pain, mostly lung pain, and I was annoyed by the catheter in my neck because it was heavy, but apart from that, I was doing great and SO anxious to get out of there—mostly because of my moaning neighbour but also because the bed was uncomfortable, and the food, while fresh, was terribly bland.
The nurses and doctors kept saying they MIGHT let me out on Monday evening, seeing as I was doing so well (and also, honestly, they needed the bed—the MHI was full up, which is why we were packed in there like sardines), but it wasn’t guaranteed. I was given the all-clear to leave once I’d had another chest X-ray and had all my tubes and wires removed… but then the nurse came back in to say that I still had a little bit of air stuck in the pleural space between my lung and chest wall (pneumothorax from when they collapsed my lung) so I was stuck there another night. However, less than an hour later, the doctor said that the amount of air was so minimal that they could discharge me after all. Yay!
BF came to get me, and I got my discharge papers, and then he wheeled me out of there. We ubered to his friend’s place right outside the Village where he was pet-sitting all week, then we walked wayyyy too far in the cold to pick up my slew of medications.
I stayed with BF and we basically watched Wheel of Time and cuddled on the couch and not much else (oh and ate DELICIOUS breakfast sandwiches from Café Canard across the street… highly recommend) until Thursday when I felt ready to travel home on my own.
True to his word, the surgeon didn’t mess up my tattoo 😅 – he even used my previous surgery scars for his incision. He took pictures of my valve to put in a book because what they thought was vegetation/infection from endocarditis was NOT… it was bits of tissue that were malformed because of my Ehlers-Danlos. The faulty mitral valve, on the other hand, was inherited from my dad’s side of the family. I was never in any danger that the masses would break off and give me an embolism. They’ve probably been there my entire life, and the perforation was probably wear and tear from having the masses on my valve. So… in November, I WAS sick with CMV and mono after all… which is also a little baffling because why didn’t BF get sick? 🧐
Anyway. All that to say I’m fine now, and I’ll live longer, and it was a really fucking surreal experience. I had HEART SURGERY four weeks ago today. Wow.
I’m so thankful for BF schlepping across town to come see me during this whole crazy thing… and for taking such good care of me post-surgery 🥰, for T for taking care of my silly cuddly kitten, for M and J for taking in the razor fluff, and for Kiddo for helping me around the house. 💖
