A brief note to give you a heads up that this post is pretty long. Also, I may have forgot/left out things since a lot of the time I wasn’t with it or awake. This post is a way for me to process everything that happened, and to share that experience with you.
Introduction
It has been a little over one month since my heart surgery, but it has felt like a year.
As I left the parking lot of Spaulding in Charlestown two weeks ago, I broke down. “That was hard,” I told Chris who was driving me home. I had subconsciously been suppressing all my emotions over the two weeks prior in the hospital and rehab as I was in survival mode. I tried to put my head down and just get from point A to B. Unfortunately, that path wasn’t as straightforward as I had hoped, but I am home and starting to do well.
First off, the surgery went great and was very successful! I have a video of my heart before and after surgery, and while it looks a bit like Frankenstein’s work, it is functioning perfectly. It was very fortunate that I had the surgery when I did. My surgeon, who is one of the most prominent Ross Procedure surgeons in the country, said that my valve was one of the worst unicuspid aortic valves he has seen. I have a picture of the valve, and the opening for blood to flow through was very small and significantly calcified. Additionally, while we knew I had an ascending aortic aneurism (dilated/widened aorta), which is the tube bringing blood from the heart to the rest of the body, they saw during surgery that it was paper thin and at a higher risk of tearing. Fortunately, they were able to resect part of the aorta and replace it with something called a Gelweave graft, which is essentially a woven prosthesis meant to replace the removed aortic tissue.
Pre-Op
On March 24th, Chris, his mom, my mom, and stepfather all met at MGH to check in for the surgery. My mom, Chris, and I spent several hours in the prep area waiting for me to go into surgery. Similar to the weeks before, waiting was one of the worst parts of this experience. I could feel my anxiety building after each step of preparation from simply putting on the gown to answering all of the required medical history questions. When it was time for me to go back to the operating room area for them to put in all the IVs, I embraced Chris and my mom. I am a pretty superstitious person, and in all of my past surgeries I always say “see you when I wake up,” to manifest a good outcome. Never the word, “goodbye.”
They wheeled me through the hallways with operating rooms to either side. It is pretty phenomenal that MGH has over 90 ORs! I waited for the anesthesiologist to come put the arterial line in. I waited, and I waited some more, but no one had come yet. Finally, Dr. Bloom’s Fellow, Greg, walked in with a smile and the first thing he said was, “nice to meet you, Jeremy, we have the same barber!” To understand the “small world” aspect of this, you need to know that my barber is located where I live in Arlington (about 25 minutes from Boston). Greg lives in Boston where my barber used to work, and he still travels to Arlington to get his haircut. My barber had told me one of his clients was a heart surgeon, and I said it was fine to mention my story. It was easy to put two and two together when he told Greg about my upcoming procedure because there are very few surgeons in Massachusetts, let alone the country, who specifically specialize in this.
So, with that icebreaker out of the way, Greg told me that the surgery before me was running a lot later than expected. Dr. Bloom wanted to see if I would be okay with moving the surgery to the next day. He did say, however, that if I wanted to do the surgery right then, he would do it. My heart sank. Emotionally, there was so much build up to get to this point that I just wanted to be done with it. I asked Greg what Dr. Bloom’s preference was. He said that Dr. Bloom preferred to do it the next day because he wanted to be fresh for the procedure. With that information, I decided to follow his instincts, so they brought me back to the prep area where I met back up with my family.
This process of delaying the surgery actually made me feel more confident in Dr. Bloom. Many surgeons would simply try to push through it, but he was honest with himself and me that it would be in my best interest to wait until the morning. He even called me later in the evening to check in about the decision.
To cope with this delay, I decided to think of this whole experience as a dress rehearsal for the real thing. When I came back the next day, I knew what to expect and felt a lot less nervous than the day before. They again brought me back to the OR area and for a second time I said, “see you when I wake up,” to Chris and my mom. This time, the process moved forward, and they put in the arterial and venous lines, wheeled me into the operating room, and put me to sleep.
Post-Op
Originally slated for 4-5 hours, my surgery lasted 7 hours because I required two blood transfusions to increase my platelet count. Most people know that I geek out on these medical things. When looking back at Dr. Bloom’s surgical report, it was neat to know that of those 7 hours, I spent 209 minutes on bypass, and they brought my body temperature down to 89.6 degrees. While I was previously incredibly nervous about the concept of my heart stopping, it was actually fascinating to read about how they stopped my heart (after the fact), and that my heart was able to have a “spontaneous rhythm resumed without the need for electrical defibrillation.”
Another aspect of the surgery that I was anxious about was waking up while still intubated. Fortunately, while I was supposedly awake when they did this, I don’t remember a single thing. My mom and Chris also said I talked to them briefly in the ICU, but again, I have no memory of that. Fortunately, the surgery was over and successful. Unfortunately, little did I know that the post-op course would have more complications than I expected.
Complication 1: Vasoplegia
After being transferred to the ICU, I developed vasoplegia. This is a form of vasodilatory shock, and is characterized by blood vessels not constricting enough resulting in persistent low blood pressure despite normal cardiac output (i.e. blood expelled from the heart). Essentially, my body was having a hard time keeping my blood pressure up. Vasoplegia can happen from being on bypass as well as having the aorta clamped, both of which happened in my surgery.
My heart and vessels just needed a little help working properly again. The ICU team worked diligently, starting me on vasopressors. Unfortunately, this alone did not keep my blood pressure up. They had my surgeon come to my room. He walked in and grabbed a black rectangular box off a pole next to my bed. He twisted the dial on the front, and my heart rate immediately went to 100. I turned to Greg who was also in the room and asked him how that happened because it seemed like magic. Greg told me that they have wires leading to my heart and can control my heartbeat with that box. I laughed thinking he was being sarcastic, but it was in fact true. Fascinated but also a little sketched out, I had not realized that I had a temporary pacemaker with one wire going to my heart’s right ventricle, and two wires going to my right atrium. It felt a little nerve-racking that anyone with this black box could control my heartbeat. Nonetheless, the increased pulse brought up my blood pressure.
Over the course of the next three days in the ICU, they worked to wean me off the vasopressors as well as test how the blood pressure was doing when they decreased my heart rate. It was a lot of trial and error, but fortunately towards the latter part of my ICU stay, my cardiac system started to work as it should and my blood pressure stabilized.
Delerium
The last night in the ICU, I fell asleep in the recliner chair next to my bed. I woke up in the middle of the night, and I thought I was in an apartment with Chris and two strangers. They were walking back and forth ignoring me. Chris didn’t even acknowledge my presence, which was a little rude. One of the strangers started to approach me, and I freaked out. He tried to calm me down saying that I was in the hospital, but I could not be convinced that was true. He somehow got me to transfer to the bed and I eventually fell asleep scared and confused.
I woke up the next morning and vividly remembered what happened except I now understood the correct context. Chris was in fact not there, so I will give him a pass for his rudeness. The stranger was my ICU nurse, and I was in my hospital room the entire time. Supposedly, this is not uncommon in the ICU, but it was surreal to vividly remember the whole experience and that I did not know where I was.
That morning, they finally transferred me out of the ICU to the cardiac floor. This was a relief because it meant that the wires and chest tubes could come out. I asked how they remove the wires since they go to my heart, and the nurse said they simply pull them out. It wasn’t necessarily painful as they pulled them, but definitely a weird sensation. The chest tubes on the other hand were not as pleasant of an experience, but having them out significantly alleviated some of the pain I was having in my chest.
My first night in what’s called the step-down unit did not go well. I woke up thinking that it was 6am. For some reason, I was adamant that I needed a shower. However, up until then, due to the ICU complications, I was unable to walk. I called for a nurse and explained to them that I really needed to take a shower, but I didn’t know how I would get there. The nurse explained that it wasn’t 6am, but rather 3am. I was confused. I then became distraught by the fact that I was disturbing the other two patients in the room. These emotions were definitely due to the delirium, but it is also interesting that research has shown that men in particular can experience significant waves of emotions following heart surgery at times for up to a year.
What I didn’t realize at the time was that I wasn’t just disoriented, I was also exhibiting unexpected symptoms. According to the clinical note, I was making “nonsensical comments,” had slurred/delayed speech, and decreased coordination in my left arm. They attributed this to the confusion episode and gave me anti-anxiety medication to fall asleep, but we would soon learn that it wasn’t so simple.
Complication 2: Stroke-like Symptoms
The next morning when I woke up I continued to have slurred/delayed speech, decreased coordination in both arms, and started developing both double and blurred vision – all of which became worse throughout the day. Chris as well as his mom and dad arrived at the hospital and while I hadn’t been the most comprehensible throughout my hospital stay up until that point, Chris knew that things had gotten worse. The medical team called neurology to come see me.
I told Chris and his parents to go get some food because it seemed like it was going to be a long day and there wasn’t much to do aside from waiting for neurology to arrive. Unfortunately, as it always seems to happen at hospitals, the neurologist showed up right after Chris and his parents went to the cafeteria. The neurologist did a full exam. He asked me where I was, and I didn’t know. He asked me the date, and I didn’t know. He asked me to follow his finger, and I struggled. He asked me to touch his finger and my nose, and I kept missing his finger as well as my nose. The tests went on and on, and I knew I wouldn’t get a passing grade.
At the end of the exam, the third-year resident said rather nonchalantly, “you may have had a stroke.” I was shocked and incredibly scared. He continued that they would need to get a scan to confirm. I asked him what my treatment options were if the scan showed that I did in fact have a stroke. His response made my heart drop. We were well beyond the window for any active treatment. The only options were physical and occupational therapy. I immediately wondered to what extent my condition would become my new normal.
The neurologist left and I was alone. Chris and his parents returned and I started to break down. I told them that they think I had a stroke.
As an EMT, medical student (briefly), and 20+ years of being a patient, I have learned that medicine is not just a science but an art. Part of that art is to know how to communicate with patients and their loved ones. To medical trainees/workers reading this, it is not the best decision to tell a patient with an altered mental status and no one else around that they could be having a stroke. And to current and/or future patients and caregivers, advocate to medical professionals that you would like someone else there either in person or on the phone as a doctor is providing a consult. If that is logistically not feasible, ask for a nurse to be there so that they can help explain it to family afterwards. Unfortunately, for me, hindsight is 20/20. When you don’t even know the date, it is hard to advocate in that moment.
Chris and his parents were shocked just like me. I found out later that Chris had some constructive criticism that he wanted one of the medical staff to pass on to the neurologist. I also called my mom to tell her the news. I knew there wasn’t anything she could do at the moment, but I just simply needed my mom to come to the hospital.
This experience reminded me of my first brain surgery in 2004 when I woke up paralyzed on my right side. In some ways, though, this was scarier. In my previous brain surgeries, I generally knew what symptoms to expect afterwards. These stroke-like symptoms, however, came out of the blue. My body, both physically and mentally, was not working the way it was supposed to. Even more frightening and frustrating was that, while I was confused, I still knew that all of what I was experiencing wasn’t right, yet I couldn’t do anything about it. I felt out of my own body as if someone else was taking over the driver’s seat.
Fortunately, the MRI showed no signs of a cerebellar stroke. Unfortunately, they still didn’t know what was causing those symptoms. One hypothesis included a TIA (often referred to as a “mini stroke”). Potentially, something from the area of the surgery broke off and caused a temporary blockage of blood flow to a certain part of my brain. Another hypothesis, and one that the neurology team was leaning towards, was that the physiological stress of the surgery combined with exacerbated side effects of current and past cancer treatments led to what I was experiencing. Regardless, the prescribed treatment was still physical and occupational therapy.
Path to Discharge
Before the stroke-like symptoms, my discharge plan was to go straight home. After the complications, that switched to inpatient rehab. While still at MGH, I worked with physical and occupational therapy to walk again as well as complete daily exercises to help with the vision and coordination issues.
On the first day in the step-down unit, walking from my bed to the door was incredibly taxing. I would easily get dizzy and out of breath. Towards the latter part of my hospital stay, I was able to walk the hallway with a walker with some breaks. Simple tasks made me exhausted. Recovering from heart surgery is all about building endurance while not pushing too hard too fast. I was (and still am) on a strict blood pressure restriction of 110 or below to let my heart recover from all the parts that were moved around. While my blood pressure is allowed to go above 110 during and post-exercise, I could easily feel its increase, which at times triggered the dizziness/unsteadiness.
Eventually, they moved me to a room with a window. Up until then, I had gone 5 days without seeing the outside. They hoped that being able to see day and night would help with the delirium and some of the other symptoms. The delerium episodes subsided, but the stroke-like symptoms persisted.
Given that my plan was now inpatient rehab, the path to discharge required a few steps: I needed to be able to walk a bit (check); able to pee (check); medically stable (check); and able to have a bowel movement (not checked). Now I will not get too detailed in this post, but there is very little information they tell you before surgery about anesthesia’s impact on the GI system. From past experience, I knew about the constipation issues. But for some reason, this time was worse than all the three brain surgeries combined. Not to be dramatic, but it ended up being one of the worst pains (11/10) I had ever experienced. Getting to the other side of that obstacle was probably the happiest I had been since the surgery. (I’ll stop talking about this now, but I believe it is important to talk about all aspects of a medical journey. I also give you permission to send any and all poo jokes as a cost of me adding this section to my post).
With everything now checked, a case manager came to see me and provided a list of all the rehab facilities in Boston and the surrounding area. As someone who has been to Spaulding Rehab Center, both inpatient (in 2004) and then outpatient for most of my life, I knew that was where I wanted to go. It is considered one of the best rehabilitation centers in the country, which is why it is very hard to get a bed there. Thanks to the case manager and a lot of luck, I was able to secure a bed at the Spaulding in Charlestown’s navy yard.
Transportation was scheduled for the next day. The last time I was in an ambulance, I was transporting patients. This time, I was the one on the stretcher.
Inpatient Rehab
Spaulding Boston is kind of like a hotel. Each room is a single bed with a big window looking out to either the Boston Harbor or the Tobin Bridge (which, by the way, is the longest bridge in New England). Each day, I had at least three hours of rehab which usually consisted of one OT and two PT sessions. The food was much better than MGH, and they even had two therapy dogs, Nala and Flip. Flip had two demeanors. He was either calm and rested his two front legs on my knee, or a bit energetic, constantly licking my hands regardless of where I moved them. The dogs, staff, and some of the alternative sessions like cooking burritos for occupational therapy, made Spaulding feel a little less clinical.
When I arrived, I needed assistance with a walker going to and from my bed to the bathroom. In my physical therapy evaluation they had me do a six minute endurance test walking back and forth in the hallway. I had to take several standing breaks and made it about 750 feet, which was actually a lot better than what I could do at MGH.
On the second day, my double and blurry vision finally resolved. For the rest of the week, I fell into a pattern of breakfast, therapy, nap, therapy, lunch, therapy, nap some more, dinner, and sleep. Unlike my hospital stay where nurses came in and out waking me up for vitals throughout the night, at Spaulding, I could actually get a full night’s sleep.
During the last couple of days, I was finally able to go to the bathroom and even shower without the walker. I had no idea how amazing it would feel to be allowed to independently go to the bathroom rather than having to call for help every time. Independence became and is still becoming a privilege and overarching goal.
During my last PT assessment I repeated the six minute endurance test. This time, I did not need to take any breaks, and was able to walk around 1,300 feet (almost doubling my initial assessment).
When it became time to leave rehab, it felt surprisingly bittersweet. Logically, I knew I was now physically prepared to go home safely, but emotionally, I was nervous. While the two weeks at MGH and Spaulding were incredibly difficult, I felt comforted knowing I had round-the-clock care from an incredible interdisciplinary team. Going home meant leaving behind that institutional support. It meant needing to figure out how to live in my new normal. Independence can feel amazing, but it can also be scary. However, I felt relieved knowing I had an incredible community of support – Chris, family, and friends – to help me take the next steps.
Experiencing the stroke-like symptoms was by far the scariest outcome of any of my surgical experiences. The silver lining, though, is that having those symptoms led me to going to Spaulding. I honestly can’t imaging what it would have been like to go straight home especially given that both of our bathrooms are on our second floor. When I said goodbye to my PT and OT, I started to tear up. I explained to them that when I came to Spaulding, I felt incredibly fragile. My body wasn’t working like it was supposed to, I didn’t have any independence, I was worried about how much I could push my heart, and I felt scared doing anything that could affect my healing sternum. The week of rehab with my PT and OT helped me feel assured in what my body could do. To have my confidence restored was such a gift and made me feel prepared to start the next stage of recovery.
Reflection
If you have made it this far in my post, congratulations! You definitely have a longer attention span than I can muster rights now. 😉
Perhaps from reading the above, it can give you a sense of why I cried when leaving the Spaulding parking lot. Why all the emotions about how challenging this experience was spilled out like flood gates of a dam opening abruptly. I didn’t realize how much I had bottled up the physical and mental trauma of the past two weeks. I cried so much that Chris pondered charging me a dollar for each tissue I asked for!
But the reality is that all of this could have been a lot harder. What I mean is that I was and still am incredibly privileged by all the resources I had access to and quality support I received. I am forever grateful for my surgeon, Dr. Bloom and his Fellow, Greg. Many people do not live in a place near one of the top Ross Procedure surgeons and have access to insurance that fully covers the procedure. Additionally, I was incredibly lucky to be at one of the best hospitals and rehab facilities in the world.
I cannot say thank you enough to all of the doctors, nurses, CNAs, PTs, OTs, nutritionists, environmental services personnel, etc.. There are so many patients these people take care of, and they are often stretched incredibly thin to cover all of their responsibilities. Despite this, they made me feel 100% safe and supported. During the scariest times of my hospital stay, it was the nurses and CNAs who not only made sure I received the best medical care, but also were there for me to keep my spirits up. They were people I could talk to in the evening after all the visitors had gone home. They were the ones who comforted me when I had the delirium episodes or when the stroke-like symptoms worsened. Throughout the two weeks of my hospital and rehab stays, I probably had about 70 medical professionals take care of me (which is likely an underestimation). I still get emotional remembering all the moments where these unsung heroes helped me get to where I am now. I am and will forever be grateful to them.
Most of all, I cannot thank Chris, my mom and family, his family, and our friends enough. From visits (even if most of the time I was sleeping) to food, it truly meant the world to me to know I had (and have) so many people in my corner. Chris and I are incredibly privileged to have a community who surrounds us with comfort, encourages us, and offers to help anyway they can in times of need. What I’ve learned from living with my brain tumor for 22 years is that it truly takes a village, and this whirlwind of an experience has been no different.
I am now in the midst of phase 2 of 3 of my recovery, and while I am exhausted even from 15-minute walks, I am excited for what’s to come. During my past three brain surgeries, my goal was to get as close to my pre-surgery abilities. Unlike those experiences, I have been offered the opportunity to go beyond where I physically was before. I have no idea what it feels like to have a fully functioning heart, but I cannot wait to find out. As an example, during my last Dana Farber appointment, my platelets were at a normal range – the first time in over two years. I asked the nurse practitioner how this could happen, and she simply said, “you have a heart that works!”
During my rehab, they asked me what my goals are. I told them I want to be able to dance at my wedding in July, and do all the tasks and activities that come with having kids once Chris and I become parents. Thanks to the ongoing support from my medical team, Chris, family, and friends, I know I’ll be able to make these goals a reality.
With love from a new heart,
Jeremy
Jeremy's Journey 