Five months ago I had a major surgery. I want to share my story to help you, other patients, and healthcare providers.
About four years ago, I moved to Columbus, Ohio for a new physical therapy position at a private outpatient clinic. I found a place to live, and being health conscious, found a new primary care physician. At my first appointment, I shared my medical history, including unique cardiovascular anatomy (right-sided aorta) and open heart surgery when I was nine to repair a small hole in my heart (atrial septal defect). The doctor examined me and noticed a small pulsation on my neck (bruit). For as long as I could remember, I had that same pulsation, and I had no symptoms. When choker necklaces were cool (the first time in the 90s), mine would bump up and down during dance class or basketball practice. I still had no symptoms, so what was the problem?
I was referred to a cardiologist, who deemed me “healthy as a horse”, but referred me to a vascular surgeon. The vascular surgeon determined the pulsation to be a small pseudoaneurysm that would be monitored for growth every six months. If stable in size, I would not need any intervention. At each following appointment, the pseudoaneurysm showed little changes. I was scheduled for my last appointment in June 2017. But, at this last visit, I was told the pseudoaneurysm had grown significantly (to a full aneurysm) and I would need open heart surgery to repair it.
I was in shock. I was ready to tell the doctor at that visit that my husband and I were ready to start a family, and that I needed a letter sent to a life insurance company clearing me of any issues so I could get coverage for myself and our growing physical therapy business. All of that would have to wait (and now I definitely could not get life insurance coverage).
Then I was terrified. Not of dying, but of not being able to live the life I knew. I was in a career I loved, owned a business, regularly practiced yoga and did CrossFit. I was nonstop on the go every day. I wondered when, or even if, I would get the chance to live that life again. Two weeks prior to surgery, a meeting was scheduled with my surgeons, giving me hope that I would finally receive some clear answers.
At this first meeting, two world-renowned surgeons and their teams explained how they would remove the aneurysm from my aorta then sew the vessel walls back together (my words not theirs). Crazy. There was potential for my voice to be impaired due to the aneurysm being near the nerves that control my vocal cord (lateral recurrent laryngeal nerve). The risk of this seemed low, however, because I wasn’t currently having any voice issues. If you are a close friend or a patient of mine, you knew that to be true.
The surgical team was helpful in explaining the procedure, easing my nerves about what would happen. But, I also inquired about what I could do to have the best outcome from surgery. What should I or should I not be eating and drinking? How should I or should I not move and exercise? The surgeons only told me things to survive the surgery (which I was thankful for), but I wanted to have the BEST outcome. They also could not candidly say when, or if, I’d be able to get back to MY normal life. I decided to do my own research about the surgery and diet and exercise pre and post-surgery. I planned to be of off work as a physical therapist and business owner for twelve weeks, maybe come back in eight weeks, and hopefully come back in six.
While I don’t remember much from the first 24-48 hours after surgery, I do know that my loving husband and family never left my side in the ICU—or once I was moved to the step-down unit for that matter. I was told, for the most part, my surgery went according to plan. After making a large incision from the top of my neck to just below my ribs and breaking my sternum, the surgeons were able to successfully repair the aneurysm over the course of a six-hour surgery. I had survived the surgery, but when would I get back to MY normal life?
I was fortunate to have doctors, nurses, and aides who were knowledgeable, caring and attentive during my hospital stay, but I definitely still had my struggles. The nerves controlling my voice (vocal cord) had in fact been compromised during the surgery, which also affected my ability to swallow. I couldn’t communicate or eat and drink normally. I suffered a collapsed lung (pneumothorax) which made me feel as though I was suffocating. And, just as everyone says, sleeping in the hospital is rough. The noise, the constant interruptions, and the close quarters made it difficult to rest. The worst part was might have been the oscillating pressure bed. Made to prevent bed sores, the constantly moving bed was tortuous and put a lot of pressure on my broken sternum.
I vividly remember seeing myself in the mirror for the first time at the hospital. I had tried to prepare myself for what my big incision would look like, so that actually didn’t scare me. But, without solid food or liquids for several days, I looked like a shell of myself. Frail (and at now what I realize to be an outrageous “goal weight” of 108 pounds), slouched over, cut open not just at my chest, but my leg (used for my surgical bypass), and various punctures on my neck and arms for tried and failed IV lines.
The day I was scheduled to leave the hospital, someone came to my room to discuss my discharge instructions. This included a lengthy list of medications and how to care for my incision. It also included lifting restrictions of no more than five pounds, some very general seated exercises and instructions to schedule cardiac rehabilitation six weeks later. Was this the plan to get me back to MY normal life? This hardly seemed descriptive enough (especially for someone without a medical background) or sufficient enough to get me back to MY life. And I didn’t want to wait six weeks to start rehabilitation. Also, I still didn’t have even close to my normal voice, couldn’t swallow liquids well, and was tired just walking to the bathroom in my hospital room. (I was told that my voice and swallowing could improve over time, but I’d have to wait and see.) I planned to follow my discharge instructions, but knew that if I wanted to get back to MY life, it was going to take more.
I arrived home determined to get back to my normal life ASAP and have the BEST outcome from this surgery (while still following my restrictions). I would start by trying to increase my endurance. When I first arrived home, I had to plan ahead for my every move. If I wanted something upstairs, I had to rest before doing so. If I wanted to wash my hair that day, I needed to rest hours before and after. As a physical therapist, I knew I could probably work on this myself, but was definitely open to someone else helping me. I called around to get scheduled for cardiac rehabilitation as instructed, but was told that my diagnosis didn’t support cardiac rehab. I guess I would have to rehab myself.
I worked on taking short walks throughout each day. Starting at one minute at a time and working up to ten. When I could walk ten minutes without my feet cramping up, getting a headache, or getting light headed, I worked on walking faster. I really knew I needed to be walking faster when an elderly women breezed past me at the grocery store. When I could walk faster for a few minutes, I worked on interval training (walking slower then faster, slower then faster). When I could walk fast for thirty minutes, I worked on walking up hills and stairs.
Wanting desperately to get back to CrossFit, I then started working on strengthening. Body weight movements came first. Standing up and down out a chair, then air squats, then lunges. Combining these movements with faster walking, and I felt like I was doing a little mini WOD! I didn’t lift any more than 5-10 pounds with my arms for twelve weeks. The general recommendation from my surgeon was only for 6 weeks, but my restriction was extended to twelve due to slow healing of my sternum, which was probably because this was my second surgery.
At about eight weeks after my surgery, I had increased my endurance enough to make it through a day and take care of myself. I could send a few work emails, but otherwise I would be drained. What still had not improved, also, was my voice and my swallowing. My voice was still a whisper at best and I had to concentrate to drink water without choking. I was told by my doctors to keep waiting, and these would probably improve. This was REALLY testing my patience.
I constantly worried if I’d ever be able to hang out with my friends and family in my same loud, opinionated, obnoxious way, enjoy a glass of wine at a noisy restaurant, and even worse, treat a patient again as a physical therapist. I decided to tell myself what I always tell my patients: focus on what you can do, look at what you couldn’t do two months ago, and keep going. And I prayed.
Finally, four months after my surgery, my voice came back, I could almost drink water normally, and I completed my first Crossfit class. I started transitioning back in to work and doing more around the house. I had gained back MY life and what’s more, a new perspective on it.
Here’s what I learned (I already knew I had an amazing husband and family and friends who relentlessly showed their love and support…didn’t need to learn that!). I’ll use all of this in my personal life and as a healthcare provider:
I learned to listen more. Without the ability to talk, I couldn’t be in a conversation with people as I did before. Being forced to talk less and listen more, I ended up being even more engaged. I appreciated the tone, the volume, and the flow of other’s voices. I processed their every word and movement, without being quick to interject my own opinion or thoughts.
I learned to appreciate every small task in the day. From brushing my hair to cooking a meal; these are things we tend to breeze through or complain about day to day. It really is a gift to be able to physically do each of these “tasks.”
I learned to that doing your own research can be dangerous. There’s a lot of crap on the internet and if I had listened to it all, I would have scared myself into a heart attack. So just know, it doesn’t all apply to you.
I learned that as a physical therapist, I want to continue to be an advocate for myself, and more importantly, my patients, to not just survive, but to live THEIR BEST life. It was the job of my doctors, surgeons, and nurses to keep me alive and survive the surgery. I AM SO THANKFUL FOR THAT. But, physical therapy, diet and exercise were the powerful tools that got me back to MY BEST life.
Written by Dr. Mandi Vonderhaar, read more about her here