I’ve had a heart murmur all my life. As a small child I remember the doctor being concerned about it but ultimately dismissing as an “innocent murmur.” Over the years whenever I went to a new doctor, they’d comment about my heart murmur and I’d brush it off – “Oh, I’ve had that all my life. It’s nothing.” I never thought I'd find myself having aortic valve replacement surgery.
A Bicuspid Valve
In late 2004, at age 51 when I ran into trouble with a 90% blockage in my left anterior descending artery, I was diagnosed with aortic stenosis. It wasn’t until I had a transesophegeal echocardiogram a year or two later that the cause of the aortic valve stenosis was linked to a bicuspid aortic valve (two flaps instead of the normal three)– a deformity I was born with. That explained the lifelong heart murmur!
My doctors told me that most people with bicuspid aortic valves live normally, unaware of the valve problem until sometime in adulthood. Then the valve can no longer function adequately and they encounter problems. They told me I would have to have the valve replaced at some point, but they also told me they couldn’t predict when. “It could deteriorate within a year or it could last 20 years – or anywhere in between,” my cardiologist said.
Regular Monitoring of my Aortic Valve
To monitor the condition of my valve, I had an annual echocardiogram and check-up with my cardiologist. For seven years, everything was just fine. Then I started having symptoms. They crept up on me so gradually that, until I looked back, I didn’t realize how significant the exhaustion and other symptoms I was experiencing had become.
I first noticed I wasn’t “feeling good” in the spring and that I felt tired and overwhelmed by everything. By summer I was getting winded whenever I exerted myself, especially going up hills or stairs. On two occasions in the summer I ran up the hill from our lake to the house (to get away from mosquitoes!) and at the top of the hill I was gasping for air and my chest hurt. I thought I was going to have to call 911.
On vacation in Italy I climbed stairs to see the view of the Amalfi coast and was very breathless. If you’ve ever been to Amalfi you will know that the town is built on steep cliffs with incredible views and to get anywhere you have to climb stairs – lots of them! We rested at the top for quite a while while I got my breath back. On the way down, I must have had a momentary blackout because one moment I was walking down the stairs and the next thing I knew I was crash landing on the stone steps.
The following month I had a similar experience, where one moment I was upright, then next thing I knew I was arriving face first on the ground (at the dump of all places!). Even our regular walks with the dog winded me.
Time for Surgery
In October I had my annual appointment with my cardiologist. He said, “I'm afraid it’s time for aortic valve replacement surgery. I’m going to schedule you for an angiogram just to be sure there’s nothing else going on, and then I’ll schedule an appointment with a surgeon.”
On November 2 I had my angiogram and found out, to my relief, that “all my pipes were clear.” No re-occurring blockages or problems. But that also meant the problems were clearly linked to the aortic valve insufficiency.
My cardiologist visited me in the recovery room and indicated he’d be making an appointment with the surgeon right away. I asked him, “What sort of timeline are we looking at?” I was thinking he might say within six months or so…but to my surprise he said “within six weeks!”
I met with the surgeon three days later. He outlined the options and the pros and cons.
• A tissue valve
• A metal valve
• The Ross Procedure (which he did not recommend for me)
• No surgery
I was shocked when he told me that choosing not to have surgery was an option, but if I didn't have the aortic valve replacement I would likely live only a few more years.
I chose to go with a tissue valve.
My surgery was scheduled for just a few weeks later on November 21. The day before the operation my family congregated at my home and decorated my house for Christmas so I wouldn't have to worry about it when I came home from the hospital.
Was I Scared? Yes!
I arrived at the hospital mid morning for admittance and prep. After a short wait I was taken to a holding room outside the operating room. At that point I had not been given any drugs or sedation and the fight or flight instinct kicked into gear. I had visions of jumping off the stretcher and running for it.
Then I was rolled into the operating room. It was very cool, very white, and the lights were very bright. I was transferred to the operating table and I commented on how narrow it was. I am a small person and I wondered out loud how large people fit on it. I was strapped on to the table. I was terrified and felt incredibly vulnerable. Each person in the room introduced themselves and told me what their role in the aortic valve replacement surgery was. Then I think someone put something over my mouth and nose - and all went black.
When I recovered consciousness in the intensive care unit, I knew immediately where I was and what had happened. I heard the voices of my husband and two daughters – which was extremely comforting. I realized pretty quickly that I had a breathing tube down my throat. It was very uncomfortable and made me gag.
I drifted in and out of consciousness for a few hours, and when I was awake I’d try to signal to take out the breathing tube. But they had to be sure that my breathing was steady and at a certain rate before they could do that. I remember hearing my family say to me “breathe! breathe!” because periodically I stopped.
Later in the evening they finally took out the breathing tube (not a particularly pleasant experience but a merciful one!). At first my throat hurt and I had no voice. I was also incredibly thirsty. I asked for water but was told I couldn’t drink for another few hours. The nurse offered me a moistened sponge on a stick to wet my mouth. It was a small piece of heaven.
I could see a large clock on the wall. They told me I could have water at 2:00 a.m. I’d fall asleep, wake up and think, “Good, I’ve been asleep for a long time! It must be time that I can have water!” Then I’d look at the clock and only five or ten minutes had passed. This happened over and over again. I asked for the moistened sponge several times.
Finally 2:00 a.m. arrived and I was able to have water. It was like being in the desert and finding an oasis. I don’t think water ever tasted so good.
I had been lying on my back for many hours and I was uncomfortable but I couldn’t move. With the help of a nurse I was propped onto my side, another relief.
Early the next morning the burly big male nurse scooped me up in his arms and sat me up on the side of the bed. At first it felt okay, although I was pretty woozy. I asked for more water. I have no idea how long I was sitting up – probably just a few minutes - but suddenly I didn’t feel well and I told the nurse I was going to be sick. And I was. The nurse carefully lowered me back to a lying position on the bed.
Out of ICU
Around noon I was transferred from intensive care to the cardiac floor. I was put in a wheelchair and taken to my new home where my nurse’s name was “Happy.” Really. Again, the stress of being upright made me sick to my stomach. But I settled into my new digs. That evening they sat me up on the side of the bed for a third time and again I was sick.
The next morning, day two since surgery, they got me up into a chair for my breakfast. It was difficult but I wasn’t nauseous. Just weak and sore plus it was awkward because I had all kinds of tubes and wires coming out of me. IVs in my arms, leads for the heart monitor, the oxygen monitor on my finger, a drainage tube from my chest, a catheter from my bladder, and something with wires in my neck. My face was very puffy and I had a rash - possibly a reaction to the antiseptics they used.
Later that morning the physiotherapist came to take me for a walk. We walked a short distance down the hall and back. I was exhausted but it went well.
Every day brought progress. Gradually tubes and wires were removed. I walked more and more each day. My bowels were slow to return to life but with a bit of help, things started moving.
Pain, Drugs and Hallucinations
Initially I was on OxyContin for pain but by day three I was having hallucinations. I saw huge cracks in the ceiling and the walls. I saw incredible mosaics and works of art, beautiful landscapes where I could see even the most minute details, and underwater scenes where again I could see even tiny specs of marine life. I saw some disturbing images too, but fortunately the beautiful images were the majority. One day I looked at my granddaughter and she had blue polka dots all over her face. I knew I was hallucinating and I commented on it to my daughter but when I looked at her, she had red polka dots on her face! I was taken off OxyContin and switched to Toradol. The hallucinations stopped but this drug upset my stomach and made everything taste metallic.
Turning over in bed was extremely painful, as was getting in or out of bed. When I’d get settled in a new position, I’d stay very still until the pain eventually subsided, then I could sleep. Hugging a pillow helped stabilize my chest and minimize the pain when I turned over, got up or down, or coughed.
In the hospital and for the first several weeks at home I had all kinds of strange dreams. I have heard that this is common after open heart surgery.
One day in the hospital I asked my husband to tell me a joke or something funny to cheer me up. He started reading to me from a funny website. I started to laugh so hard that I went into spasms of pain and must have triggered an alert because the nurse came running from the station down the hall. We had to explain that he was just trying to cheer me up, not kill me.
Home At Last!
On day five I went home. My own bed felt like heaven compared to the hospital bed. My house seemed so cosy and quiet. The day after I came home I held court from the couch, wrapped up in blankets, while the family showered me with birthday wishes and gifts. It was my best birthday ever.
The first few days at home are a blur. I was on a combination of Tylenol 3 and Extra Strength Tylenol. I settled into a routine - eat breakfast, rest, check email, rest, dress and brush teeth, rest, watch a movie, rest, walk around the house, do breathing exercises, rest, read, sleep, walk around the house, do breathing exercises, rest, and so on). At this stage everything exhausted me.
Gradually I Regained My Strength and Stamina
But each week I felt stronger and stronger. I could feel the pain lessening and my energy increasing. I started walking outside. Some days my rib cage, neck, and shoulders would ache – often after an outing or some exertion. Some days I had overwhelming fatigue. But most days I felt pure optimism about the continual improvement.
My incision itched and tugged as it healed but amazingly in some places the scab came off after just two and a half weeks revealing a neatly mended line. The top third of the scar was the angriest. The scab came off that part at about three and half weeks, but it was not healed and it gaped. I kind of taped it together and a new scab formed. That scab came off between five and six weeks and all but a tiny spot was healed. The photo below shows the incision a few days after surgery and at six weeks.
For me, six weeks was a turning point. Pain subsided. I could turn over in bed without going “ow, ow, ow!” After seven weeks I was feeling really good. I still tired easily and my sternum was still a bit sore with certain movements, but overall I felt ready to rejoin the world. At eight weeks I met with my surgeon and got the "all clear" to get back to normal life. He advised me not to partake in activities where I might fall and hurt my sternum (skiing, skating) until I passed the three month mark.
I was warned about depression following open heart surgery and my community health nurses and the cardiac rehab people were careful to ask me about it. I can honestly say I never felt down, let alone depressed.
I feel so fortunate to have had valve replacement surgery. If I had been born in my grandmother’s generation, I would not have had this opportunity to extend my life. Although the experience of open heart surgery is not easy, I feel it was an incredible gift – for which I will be forever grateful.