This blog post contains images and details that some readers might find disturbing.
This has been a hard post for me to write. Partly because I still have trouble sometimes connecting to the experience; to really recognizing that the story I’m about to tell happened to me. And partly because it has felt so big that I want to make sure I do it justice, for myself, and for anyone who connects to what I have to share. Today I want to walk through the story of my heart surgery, the complications, and my recovery.
If you’ve been following me for awhile then you already know that I was born with a congenital heart defect called Bi-Cuspid Aortic Stenosis. I won’t go into all the details of that again, since I’ve mentioned it a few times in different blog posts already. The reality is, I have always known that one day I would require an open-heart surgery to replace my defective aortic valve with a shiny new mechanic valve.
Health-wise, I went through quite a journey carrying and delivering my fourth baby – which put a tremendous amount of strain on my heart (you can read all about that here if you’re interested). As a result, my daughter Nora was born two months early via c-section, under stressful and uncertain circumstances. About six weeks after Nora was born it was determined that despite the pregnancy being over, my heart really wasn’t recovering, and my cardiac symptoms continued to worsen. It was officially decided in October 2018 that I would definitely need the valve replaced within 2-3 months, and the surgical referrals were made.
My activities were very limited for all of fall 2018, which was a bit of a challenge with four kids – one being a preemie newborn – but we managed and were so grateful for all of the support we received from so many during that time. For the most part, I was able to adapt and adjust my lifestyle to avoid going into actual cardiac failure. However, at the end of November, for a period of about 48 hours, I had an episode of sharp back and chest pain, and on the advice of several doctors and nurse friends, we decided to go to the emergency room at Royal University Hospital. The fear was that my aorta could be dissecting, so I had a CT Scan and was admitted to RUH for observation for a period of 24 hours. Thankfully it was not an aortic dissection, but during that stay I had the opportunity to meet the doctor who would be my surgeon, and he and my cardiologist determined in the following week that my surgery would be expedited to December 12th.
I was definitely a bit overwhelmed by how quickly it felt like things were suddenly moving, but at the same time, this was a surgery I had known would happen my whole life. I think I had really normalized it both mentally and emotionally. I also comforted myself frequently with reminders that this wasn’t an “exciting” surgery for my surgeon or his surgical team. Valve replacements are very common and have an extremely high success rate. The risks for me were less than 2%, and I was assured numerous times that I would do amazingly, being that I’m young, healthy (outside of my cardiac issues), not over-weight, or dealing with diabetes or a smoking habit, etc. There was no reason to believe that my surgery would be anything other than routine. Sometimes I still can’t believe I actually fell into that 2% category, where the unknown and unthinkable actually do happen.
On the evening of December 10th, I decided to spend the night at my parents place and my dad was going to take me for my pre-op assessment at the hospital bright and early on the morning of the 11th. My husband was already off work, and would spend the day with the kids, and we were meant to have a quiet family night so I could get a good nights’ sleep prior to surgery on the 12th. However, shortly after supper on the 10th, I came down with a vicious stomach flu and spent most of the night awake, throwing up, and just generally feeling awful. So, when 6:00 am rolled around and it was time to get out of bed (or rather off the bathroom floor) and head to the hospital, I was less than enthusiastic. We got to the hospital and very quickly the tests and assessments began: blood work, ECG, X-Ray, etc. We met with my surgeon, filled out tons of paperwork, answered what felt like a million questions, and even watched some “What to Expect” videos. All the while I was sipping my gingerale, trying desperately to hold it together. It’s almost comical in retrospect.
It wasn’t until my final assessment with the anesthesiologist that it sort of all fell apart. He walked into the room, and started off by telling me I was “a bit of celebrity” at the hospital for surviving my pregnancy and delivery. He then proceeded to tell me – quite bluntly – that although he didn’t want to offend me, I looked really awful, and he wondered if I was ok. I don’t “lose it” very often, but I’m telling you – trying to hold it together like that, the day before a major surgery, was too much for me, and I had what can only be described as a mini meltdown.
The anesthesiologist was really wonderful and ended up calling a couple of his colleagues to determine whether or not they thought the surgery should proceed or be postponed, based on the fact that was still battling a stomach flu. After also consulting my surgeon, the decision was made that surgery would be postponed to December 17th to allow my body to fully recover.
Although I was definitely happy to let them be the experts and make this important decision, there was also a part of me that felt disappointed. I had been building up to this moment, processing what would happen, working through my fears about the procedure, etc – and to have it postponed, in my mind, just meant I had another five days to worry. So, the postponement actually felt a bit bittersweet.
We ended up taking the next five days very slow. It took me several days to feel like myself again, but we were able to enjoy the weekend as a family, with the surgery rescheduled for a Monday morning. We had arranged to stay overnight at my parents house the night before the surgery, and my dad was staying home from work to be with our three older kids. My mom and husband were going to come to the hospital with Nora, and wait during the surgery.
You might be thinking we were crazy to bring a newborn back to the hospital to hang out in a waiting room, but the truth is, we were told the procedure would only take 3-4 hours tops, so between my mom and husband, they felt it would be easy enough to also take care of Nora so my dad could just focus on the big kids at home. Had we known then what we know now, we would have made different arrangements – but in our minds, this was a quick, standard procedure. Or, as standard as open-heart surgery can be, anyway.
Maybe that was part of the problem too – we never actually considered that something could go wrong. And honestly, that’s been one of the hardest things about processing the whole experience now in the aftermath. What do you do when the thing you think will never happen, actually happens? It’s a bit life-changing. But, more on that later.
On Monday, December 17th, I woke up bright and early and had a shower. They give you these kind of nasty disinfectant sponges you have to wash yourself with the night before, and morning of a surgery, so I did that, and shortly after, we were off to the hospital. I remember it all feeling a bit surreal. We got to the hospital, and I immediately had to change into a hospital gown, and was tucked into a bed. A nurse gave me a sedative because they wanted me to “rest” prior to being wheeled in for surgery. I had a snuggle with Nora, and within an hour, we were moved from pre-op over to the surgical unit with all the other patients having surgery that day. At that point the anesthesiologist came and introduced herself, and promised she would take good care of me. I had done a pretty good job of holding it all together, but that moment when the nurses came to take me to the operating room, that was a hard moment for me.
Leading up to the surgery, the two moments I feared the most were the moments right before going into surgery, and the first moments waking up after surgery. These moments felt like the biggest unknowns – I was afraid to close my eyes, and also afraid of what I would see when I finally opened them again.
Once I was wheeled into the OR, things get a little blurry for me. I remember clearly what the room looked like, and I remember spotting a nurse I recognized, which was a comfort to me. I remember laying down on the operating table – although I can’t remember how I got onto it. I remember the anesthesiologist starting an IV and introducing me to her colleague, who she told me was going to start an arterial line. I remember feeling grossed out about the art-line, and hoped it wouldn’t hurt. Then I remember the anesthesiologist telling me she was going to give me something that would help me rest, and that’s the last thing I remember before waking up in the ICU, post surgery.
I know it’s a good thing that I don’t have memories of everything that transpired in the OR that day, but sometimes I wish I could watch it all play out – like in a movie. Not because I’m super morbid, but because it’s so strange to me that I have zero memories of one of the most important days of my life. Over time the puzzle is being put together, and I think I have a pretty clear understanding of what actually transpired that day – so, I’ll do my best to explain.
As a heads up – some of the information and photos coming up may be a little graphic, so if medical talk or imagery makes you ill or queasy, you may want to skim this next part.
I’m told that the first part of my surgery went according to plan. The surgeon performed a full sternotomy, which is where they cut you open straight down your chest. My incision is about 8 inches long. Once the chest is cut open, the sternum has to be cut through with a surgical saw in order to have access to the heart. The chest is held open with a retractor, and the left lung is deflated. The heart and lungs are put on a bypass-machine during surgery in order to keep oxygen-rich blood flowing through the body.
When the surgeon went to remove the valve from my aorta, he discovered that the tissue was more friable than they originally thought – which basically means it was more prone to disintegrating, so his options for cutting the aorta were more limited. Once he was able to cut into the aorta, remove the valve, and place the mechanic valve, they discovered that the weight of the new mechanic valve in my aorta was causing some leaking, so the mechanic valve had to be reinforced with additional sutures. I am told that this is likely when the complication occurred, and I totally understand that it was no one’s fault; just a series of unfortunate events.
Initially it didn’t appear that anything was wrong. The bypass machine was removed, and the ECG readings looked good – however, my surgeon – a man I will forever be grateful for – ignored the ECG readings and instead noticed an issue with my actual heart. He essentially “eyeballed” the problem and knew something had gone wrong. At this point, my understanding is that I essentially had a heart attack on the table; there was no blood flowing out of the right ventricle. They came to believe that my coronary artery had been compromised during the surgery, so a test was performed to see if they could establish flow, and when they couldn’t, their belief was confirmed. At this point, I’m told that I was prepped to be put back onto the heart and lung bypass machine, but that this process is very hard on the body once, let alone twice. They decided to perform an emergency bypass surgery to re-establish blood flow from the right ventricle, which involved removing a large vein from my left leg to use as a graft in my heart.
I have no idea how long each step of the process took – but I do know that what was meant to be a three hour procedure, took nine hours instead. I’m told I received five units of blood and several other units of fluid throughout the course of the surgery. I’m also told that when they tried to wire my chest back together after the surgery, my heart became “very angry”, and so each wire was a process of watching and waiting and hoping the heart would settle down so another wire could be placed. I’m told it was a very difficult day for everyone involved.
When the surgeon was finally able to leave the OR and speak to my waiting and worried family members, he explained the complication, and told them the two things he was most concerned about were whether or not my right ventricle would be able to recover, and my brain, because of the lack of oxygen during the “attack”. The surgeon explained that my right ventricle was not able to pump without the aid of a drug called Milrinone, and that if my heart didn’t show improvement, I would be opened for a second time, a pump would be placed in my heart, and I would be left open and transported to Edmonton to await a heart transplant. My family was told that the next 18 hours were critical, and that that was as far as ahead as anyone should plan. I obviously wasn’t there for this conversation, but I can only imagine the shock my family must have felt – this scenario had never once entered anyone’s mind.
Once I was set up in the ICU, the rest of my family was called, and my sister rushed to the hospital, worried she was headed to say good-bye to her big sister. My siblings who live out of province started making travel plans to head home ASAP, and my aunts showed up ready and willing to do whatever was needed to help. I had an amazing nurse that first night in the ICU. I’m told they were all encouraged by how stable I was considering how long I had been in surgery, and the massive strain on my right ventricle. I’m also told they were super pumped to see my urine bag filling up, because that meant there was brain activity. But, there were still a lot of unknowns.
This is the part where the story becomes mine again. Where I have real, tangible memories of the experience. Much later that evening, I remember hearing voices. Just words and phrases here and there. I remember feeling afraid and anxious because I couldn’t communicate; I felt trapped inside myself. I remember feeling people holding my hands, and I remember trying to squeeze back, because all I could think was that I needed to communicate that I was ok as quickly as possible. I was also extremely anxious about the breathing tube that was still in my throat. I remember feeling panicked, but I don’t know how long everything was going to last.
Finally, I remember hearing my sister’s voice. I remember her holding my hand and asking me if I could hear her, and I was able to nod. I believe this was the first form of communication they were able to witness from me. Then she asked me if I was afraid, and again I was able to nod, and I remember someone explaining that my wrists were tied down as a standard procedure. At this point, I remember I tried desperately to spell the word “OUT” in the palm of her hand (like in Grey’s Anatomy – sorry if the reference makes no sense). The best part was, she actually knew what I was trying to do! I remember her asking me, “Are you trying to pull an O’Mally here?!” And I nodded again, although she wasn’t able to decipher what I was trying to spell (and to be fair, I’m not sure I was doing a good job of it either). But she knew what I was trying to do.
I have no idea how much more time passed between that interaction and them finally taking out the breathing tube. I don’t really remember it being removed, thank goodness. I remember it being out, and being so so so thirsty, but they wouldn’t give me anything until I could prove I was able to breathe on my own. I remember hearing my mom and my dad, and my husband, and saying hello so they would know I was ok. I think those moments relieved a lot of fear for my family – because they knew my brain was functioning. But the issue of the right ventricle was still there, and so my extended time in the ICU officially began.
The first several days actually all feel a bit suspended in time to me when I think back on that week. I have no concept of what happened on what day, or even when it was daytime or nighttime. Things just happened, and I was in and out of a drugged up state for a lot of it. Those days are painful to think about, and hard to write about, to be honest. I remember my body feeling like a furnace, so much so that the nurses brought ice packs to pile on top of my arms and legs; at one point my sister even stuck her hand in a bucket of ice to cool it off enough to hold my hand (now that’s love); and yet in reality, my skin was cold as ice to the touch, and extremely puffy. I’m told this was all likely due to the additional units of blood and fluid I received during surgery and in the ICU.
I also remember the first time they made me “dangle”, which is basically sitting up and hanging your feet over the edge of the bed. A movement so simple, we take it for granted everyday – but it was such hell that first time. The other very vivid memory I have is when they removed the drainage tubes from my chest. I didn’t explain this part earlier, but after surgery, there were two large tubes coming out of my chest, and a wire that went directly into my heart. The experience of having those tubes pulled out was awful, and I remember wondering how much more I could take. But the human body is amazingly resilient, and each day, there were new milestones that were taking me in a positive direction.
Everyday someone from my family would come and spend the day and/or night with me, and they constantly watched my dosage of milrinone, hoping it could be lowered and my heart would pick up and beat properly on its own. There was still talk of heading to Edmonton, and my family was most anxious to understand the long term plan. I recall that the team of doctors in ICU was hesitant to commit to a long-term plan, and just took one day at a time, slowly weaning me off the powerful drug and hoping my heart could handle it. Those first few days, the doctors performed tests to see if my heart could handle being off the milrinone, and I remember it not being successful, and so the dosage was adjusted frequently.
Those were hard days – although I was so wrapped up in the physical pain of the experience that I’m not sure I fully grasped the severity of the situation with my heart, and the possible outcomes. To be fair, my family did their best to explain very early on about the surgical complication, but I was too much in my own world just trying to physically get through those days, to really think about the long term implications.
The real turning point for me finally came on Friday, December 21st. I had been in the ICU for five days, and my right ventricle was finally responding well enough to take me off the milrinone. They had been hoping my right ventricle was just “stunned” and not permanently damaged, and being taken off the milrinone completely was a really good sign. At that point, they were finally able to transfer me up to the Cardiac Unit, instead of staying in the ICU. Although I will forever be grateful for the amazing care I received while I was an ICU patient, I was so relieved to be moved to the cardiac ward, where I hoped my “regularly scheduled” recovery process could finally begin.
My recovery obviously wasn’t as quick as I had originally been told it would be, because my body had undergone so much trauma during the surgery and in the days I spent in the ICU. When I finally left the ICU, I was moved into an observation room on the cardiac ward, where I spent the next four days. On the Saturday, they removed the catheter, and also gave me medication that would help get rid of some of the excess fluid my body was still carrying around. I swear it was a strategy to force me out of bed – I think I went to the bathroom every 20 minutes, and in truth, it was a bit brutal. But the more I walked, and forced myself to get up and move around, the better I felt.
Additionally, because one of my lungs had been deflated, and being on the bypass machine, there was the risk of developing pneumonia, so I had breathing exercises to do everyday. I also had leg exercises to avoid developing blood clots. My Aunt was my biggest support in this area, and she would help me with my exercises and encourage me through them almost daily, both when I was in the ICU and again when I was on the cardiac ward. I was so so grateful for how my whole family rallied during this time.
I’m not a very emotionally demonstrative person. I tend to be a person who grits my teeth and just bears what I have to; I don’t cry a lot, and I don’t recall crying much throughout my time in the hospital. However, on the morning of December 24th, I cried. I woke up in a tremendous amount of pain, and I remember it all just feeling like too much. It was Christmas eve, I was alone in the hospital, and the physical pain was catching up to me as I was weaned off the strongest painkillers.
My aunt, who lived closest to the hospital, ended up dropping everything to come be with me bright and early. That morning I also had an echo – which was painful given my incisions – but thankfully, the results were really positive. My aunt stayed with me, and massaged my back and shoulders, which were extremely sore and stiff from the surgery. The doctors had suggested that there was the possibility I could go home for Christmas if the echo went well, but given how I was feeling, I wasn’t sure whether or not it was actually going to happen.
However, the day did end on a good note. Because of the support of my family, and proximity to the hospital if there were any issues, the cardiac staff decided I could go home for Christmas; to end the day at my parents home with my family truly felt like a bit of a Christmas miracle. In some ways, heading home was also scary though – the hospital felt like a safe space. The complications that arose during my surgery caused me a lot of worry, and I found myself nervous that something would go wrong and I would be out from under the watchful eyes of the amazing cardiac nurses and doctors who had taken such good care of me. Thankfully, my family had done an amazing job of setting up my parents house to accommodate me and my family for the next couple of weeks, and it really was wonderful to be home for Christmas.
I wish I could say that I was discharged from the hospital and all was well, but the other part of this recovery for me is my now life-long reliance on a blood thinning drug called Warfarin, which interacts with almost everything and needs frequent monitoring. After leaving the hospital I had to go for blood work every other day to determine whether or not my INR levels were good. For those of you not familiar with this medical lingo – INR is basically a ratio for determining how thin or thick your blood is. The lower the INR number, the thicker your blood. My new normal is between 2-3, where a regular person’s INR would be around 1. For me, anything lower than 2 is problematic because I could form a blood clot due to the new mechanic valve in my heart. Anything higher than 3 is problematic because it could cause excessive bleeding, even internally. And unfortunately at this point, the only way to check INR levels is through blood tests in labs.
That first week I was home from the hospital my INR levels were far too low, so on December 27th, I was sent back to the hospital for shots of a drug called tinzaparin, which prevents blood clots. I also ended up having to go on tinzaparin for the following week, which meant injecting shots into my own stomach. I literally could not bring myself to do it, so my husband had to step up and do it for me. That was the only time of the day I let myself cry and really feel it all. As much as I dreaded it, the shot was also like a forced release of emotions. Thankfully that only lasted for a week, and although my INR levels continue to need to be monitored, I’m down to having blood work only once a week, with adjustments made to my dosage of Warfarin as needed.
Other difficulties throughout recovery included the fact that I couldn’t lift or hold anything heavier than five pounds for the first 6-8 weeks. I’m not sure if you’ve ever thought about how much five pounds is, but basically everything is heavier than that – including my sweet baby. As a mom, I have to admit, I have never felt so helpless, and this was by far the hardest part of my recovery.
January and February were full of slow but steady steps towards forward. It was important for me to be as active as possible, without pushing myself, and to continue with my breathing exercises. The hospital gave me a heart pillow to brace myself with when I walked, coughed, sneezed, or even laughed really hard, because my sternum was essentially this massive broken bone that couldn’t be put in a cast, and in those initial weeks, there was concern that the bone could shift if I wasn’t careful. I also had the unexpected leg incision, which meant some difficulty walking. And yet, despite it all, progress was made, and I found myself feeling better. In some ways when I look back, I actually can’t believe how far I’ve come in just two months.
Last week I saw my surgeon for my official two month post-op check-up. It was such a relief to have clearance to finally do some of my regular activities – particularly holding and caring for Nora. I also started driving again, which gives me a new sense of freedom, but at the same time, actually uses your upper body muscles in ways I had never realized! I still struggle with a lot of upper body discomfort, a lot of which I am sure is muscular tension, and may be something just have to get used to for a bit longer. My incisions are healing, but are still incredibly sensitive, and I have to admit, they are taking some getting used to, and I’m doing what I can to embrace this new version of myself physically. But, I do know that the worst is behind me and I’m so grateful to be on this side of things.
Which brings us to today. I have to admit, I find myself impacted by the trauma of it all at really random – and often inconvenient – times. And yet at other times, I feel completely disconnected from the hugeness of what I went through. I can process it it all logically and somewhat mechanically: this happened, then this happened, then this happened, etc. But the enormity of it is something that I still haven’t fully accepted or figured out how to process. I’m hoping that writing it out this way may help with that.
People often ask me if certain things are hard for me – like watching medical shows on TV, or talking openly about what happened – but truthfully, those things aren’t hard for me at this point. What IS emotional for me is thinking about all the medical professionals who rallied to save my life, more than once, over the last 6-8 months. The level of gratefulness I feel towards my doctors, surgeons, and the nurses who cared for me when I was at my most vulnerable, brings me to tears when I try to express it, because there just aren’t words.
We actually returned to the hospital at the beginning of February with a massive stack of Starbucks gift-cards to hand out to the ICU and cardiac ward staff as a small token of appreciation. We also took treats to the NICU, and special gifts to the doctors involved in my case. I have to admit I was fully unprepared to return to the ICU as a healthy non-patient. My memories of that time are painful, so being back in that space hit me in a way I was not expecting, and it was a really emotional experience for me.
I am obviously so grateful to be alive; having gone through a near-death experience, I certainly have a different perspective on life. I find myself thinking about my health in ways I never did before, and wanting to make sure I get the most out of life and not take it for granted. Things ironically don’t feel as certain anymore, despite the fact that my heart is actually working better now than it ever has.
And finally – I continue to be amazed by how people have come together and supported us through this journey, with all it’s unexpected hardships, and I know there is no way to fully express just how thankful I am for those of you who have demonstrated love and encouragement in so many ways.
To be honest, I’m not really sure how to wrap up t his blog post, because the truth is, my story isn’t really over, and I’m sure I’ll find ways to express more of what I’m feeling as time passes. However, I felt like it was important to document the experience to this point, and to share it with those of you who have invested in my journey over the last year.
So – from the bottom of my heart, thank-you for being here; for showing up and being a part of this story. I truly believe that the best is yet to come.