Healing My Heart: My Story Of Open Heart Surgery
Lessons From The Operating Table and Beyond
We all have stories to tell, stories that weave together and make a multi-colored tapestry. Sometimes the tapestry is bright and tightly woven, sometimes it's tattered and worn. Sometimes sharing our stories brings about healing in a new way, for the story teller and listener alike.
I was born with a congenital heart defect. I had my first open heart surgery when I was fourteen, my second when I was thirty. I'm not going to share a lot of techincal information about the heart or about open heart surgery, mainly because there are other places to find that information and this isn't about the technical. I want to share my side of things. About what goes on in the metaphorical heart and mind when living with a heart condition and recovering from open heart surgery.
This is ultimately a lens about me. About the personal experience of growing up knowing that surgery is in your future and what happens when the time for surgery comes. This is the story of lessons learned before and after surgery. A story of healing my heart. And it's my hope that in sharing, a parent or child or even an adult patient struggling to understand how they are going to get through open heart surgery, will be helped in some small way. This is my story...
All images copyright laurapeterson215 unless otherwise noted. This photo was taken a day or two after my second surgery, in 2011.
Congenital Heart Defects: The Most Common Defect In Babies
In the beginning...
Here's how it started. My parents had no idea I had a problem with my heart until I was three months old. I had no symptoms, I seemed a perfectly normal baby. And for the most part, I was. This was the early 1970s, well before ultrasounds were common and cardiac problems discovered in utero. My mother was in good health and had two healthy children before me. And, let me stress, I was healthy. I just happened to have a heart defect.
At the time, echocardiograms weren't being used commonly just yet. Physicians listened for murmurs when they listened in to babies hearts (and they do the same today). Diagnosis of heart murmurs was made by E.K.G. and x-ray. I'm don't know for sure when my parents were given a specific diagnosis, but when it came, it was Aortic Stenosis.
A narrow and leaky valve problem
I said I wasn't going to get too technical and I will hold to that promise. I do want to give you a brief picture of what was wrong with my heart, however. My aortic valve (the valve that separates the left ventricle and the aorta, where blood leaves the heart and goes out to the body) was deformed. The opening across the valve was narrowed (stenotic) meaning that less blood flowed to the rest of my body. In addition to the narrowing, the valve also didn't close tightly which caused leaking back into the left ventricle. The bottom line was my heart had to work a lot harder than most.
It wasn't until after surgery that the exact nature of the deformity was discovered. Aortic valves are "tricuspid" meaning they have three cusps, or flaps, that open and close with each beat of the heart. Mine was bicuspid with a small amount of a third flap. For some reason when I was a developing embryo, that third flap didn't form completely.
But I had no symptoms. I developed normally and I had no outward signs of a faulty heart. My life was basically normal save the yearly visits to the cardiologist.
Deborah Heart and Lung Center
A Life Saving Center
My earliest memory is waking up to a needle jabbed in my thigh. I was three years old and about to have a heart catheterization. In all fairness to the nurse, she probably didn't jab the needle viciously into my thigh, though it seemed that way. My mother remembers asking her if she could wake me first and the nurse seemed to think it would be better to do it this way. If you are a parent of a child needing a needle stick, please, gently wake your child. Being awakened from peaceful sleep by pain sears itself into your memory.
That was my first time under anesthesia. The only other thing I seem to recall about that procedure was lying on the operating table and having a nice man talk to me and tell me to count backwards from ten. And it seemed like I had some sort of device in my hand that looked and felt like a jack (from the children's game) and was pinchy. I'm guessing that my drugged state may be influencing this memory a tad, but even if the details are clouded with a three year-old's perception, it's clear I remember being put to sleep.
Over the years, there were more catheterizations and yearly visits with my cardiologist. When I was six, we moved from New Jersey to Florida, but still continued to visit NJ annually. The reason was twofold. One, we still had family in NJ and coming back each year for heart checkups also allowed us to see them. Two, we came for the hospital itself, Deborah Heart and Lung Center in Browns Mills, NJ. Deborah is a special hospital, focused on Heart and Lung conditions. They also operate through donations. Patients are seen without regard to their ability to pay. While my family was blessed to have fairly decent insurance coverage, it was still a blessing to my parents not to have to pay anything beyond what the insurance covered. There have been many children (and adults) helped by this amazing place.
Please Read These Books - My first introduction to Dr. Oz
When I was preparing for my second surgery, I found this book. Simply amazing. I was meant to read it. The author works with Dr. Oz and uses energy healing in the operating room (on cardiac patients). It's fascinating and it changed my life in more ways than one. Highly highly recommended.
After reading Julie Motz's book, I found this. My first intro to Dr. Oz, before Oprah. He is first a cardiologist. And works with an energy healer. Two worlds colliding. I highly recommend this book as well.
Does Having A Heart Condition Really Affect Your Life?
Normal and yet, not quite
To be honest, the procedures I had prior to my first surgery really kind of blur together. I cannot recall how many catheterizations I had (more than 3, less than 10). I know I went for yearly visits to the hospital and at some point began to dread them. I remember being aware of having a problem in elementary school. I don't know when my first sense of being different came though. I don't remember when I first felt like I wasn't normal.
I never had any major symptoms of my heart problem, no major shortness of breath, no blue-ness. For the most part, I lived a normal life and I felt normal. The only restriction I had was I couldn't participate in competitive sports, because it was feared I wouldn't heed my own limits, that I wouldn't stop when I was tired and would then push myself too far and cause problems. But I did take dance lessons and was a cheerleader from around 4th grade to 8th.
Perhaps the best thing about having a heart problem during my childhood was getting out of running during physical education classes. (I've never been a fan of running...) When everyone else ran around the backstop, huffing and puffing, I waited with the coaches. Perhaps my teachers were being a little cautious, and I admit to milking it a little. I probably could have run around, stopping if I got tired, without too much trouble. And while it seemed like the best thing at the time, in many ways, it wasn't. I learned not to push myself and that lesson has translated over to my life physically and sometimes mentally also. For the longest time, if I would run, I wouldn't know if the tight, achy chest, feeling like I'm going to die feeling was normal or if it was problematic. From talking with other people with perfectly healthy hearts, I'm beginning to believe it is a normal feeling that actually can go away after you've run a bit. But I never wanted to test that limit, to see if I was just pushing up against normal limits of exertion versus overtaxing my heart dangerously. It's a line I haven't felt comfortable crossing.
Most of the time, I felt like a perfectly normal kid. It was only when we'd visit the hospital that I'd be reminded that I had a "condition" and that I wasn't normal. As I grew older, it really helped me to learn more about my condition and what exactly was going on. Somehow that took the mystery and fear out and gave me a framework for what was really happening. But as my awareness of the anatomy of my heart grew, so did the inevitability of surgery and I knew it was only a matter of time. And I hated being reminded of that.
image: My first year as a cheerleader, 4th grade.
Poster Child - My mug shot
This is the first time I'm publicly showing this poster of me. I hated it then and it still makes me cringe. I was, quite literally, the poster child for the Orlando chapter of Deborah Heart and Lung Center's fundraising arm. I was thirteen. I hated it.
In this picture, you can see in my face that I'm miserable. My clenched teeth and my eyes tell the story. I didn't want to be a poster child. I didn't want anything to do with the fundraising. And to make matters worse, my parents had agreed to be part of a fundraising event at a restaurant near our home. A big event. Lots of people. And me. The lovely 13 year old poster child they were saving with their funds.
I didn't get all of the nuances of the fundraising. I didn't understand that I should be appreciative of the hospital and try to give back and help in any way I could. No. What I understood was that large amounts of attention were being focused on the one thing that made me not normal. The one thing I tried, and succeeded most of the time, to forget. Now it was staring back at me through my own eyes on a poster. With my name on it. Did I mention I hated it?
The day of the fundraising event came and my parents assured me I wouldn't have to talk in front of anyone, just needed to be there. But the organizers had something else in mind. I remember the horror of hearing my name and being called up to the stage. And then they wanted me to say a few words. I was mortified. I really have no recollection of it beyond that. I must have talked and then made my way back to my parents. I survived it. But it was extremely uncomfortable for me. And reminded me in a big big way of my abnormal-ness.
Surgery - Valve Replacement or Commisurotomy
I survived the fundraising event and eventually forgot. My mom must have held on to the poster, I would have shredded it had we owned a shredder. But it does serve now as an interesting reminder of my feelings and how much I hated being different.
As I mentioned, I loved dance and cheerleading. In 1985, I was preparing to enter high school and being on the high school cheerleading squad was something I really wanted. Before I could try out though, my cardiologist wanted me to have an EKG and x-ray. So before our summer trip to NJ, we went to a local cardiologist for the tests. Something in those tests gave my doctor pause however. She decided when I came for my summer visit, they would do another catheterization and make final determinations from that. After the catheterization, I didn't get the all clear to try out for the cheerleading squad. Instead, the decision was made that it was time for surgery.
Now, being fourteen, about to have major heart surgery was scary. No sugar coating. In the days before the surgery, I began grinding my teeth at night. I can't tell you how my parents felt, because I was completely caught up in dealing with the news myself. There were events I was going to miss while I was in the hospital, there would be no more cheerleading for me, I was about to undergo major surgery. It was a lot to handle.
The day before the surgery, my mom and I were meeting with the surgeon and he asked us if we knew that one of the traits of my condition was that I could suddenly die. We didn't know that and it was a bit of a shock for him to say it. I still don't recall the context for him giving us that little nugget of information. Perhaps he thought he needed to impress on my fourteen year old self how important surgery was in case I made the choice to back out? As if I even had any notion that backing out was an option I could choose! I was fourteen and when the doctors and parents said it's time, well, it was time.
So there I was, faced with my own mortality, ready to undergo the knife. I didn't wonder about the procedure, didn't think about how they would get past my sternum to my heart. Didn't think about what it would feel like. I was just scared.
The night before surgery, the most vivid thing I remember is standing in front of the mirror in the bathroom looking at my chest. I remember thinking about how it was the last time I would ever see my chest without a scar. I can't tell you what that feels like. There are no words. I wasn't intensely sad or distraught. It was almost as if I was stepped outside myself and viewing my unmarred skin objectively. Detached. But not quite.
The surgery went fine, perhaps better than expected. Instead of replacing my valve at that time, the surgeon was able to simply snip away some of the calcification that was making the valve opening dangerously narrow. This was called a valvulotomy or commissurotomy. It bought me time before I needed either a pig's valve (they don't last all that long) or an artificial valve (I would need to be on blood thinners forever with this). They thought at the time I'd have seven to ten years until I'd need surgery again. I made it sixteen more years. Sometimes, there are blessings...
Right after I learned I was going to have surgery, we went to a family friend's house and I asked to see a Bible. This is the verse I opened to and read...
Behold, God is my salvation; I will trust, and not be afraid: for the LORD GOD is my strength and my song; he also is become my salvation. ~Isaiah 12:2
Speaking of Blessings...
I mentioned how much I hated being reminded of my heart problem. Well, somehow that changed when I had surgery. As you know, I was fourteen. And when I was in ICU and on the floor recovering, I was the oldest patient. By far.
I befriended two little girls, three and five years old. Both had also just had surgery. And there was the tiny baby down the hall. And others. Suddenly, instead of feeling sorry for myself and wanting to hole up in my room like I did with every catheterization, I realized how lucky I was. How I had gone fourteen years without major surgery. Fourteen years with my original model heart. And all I had going on was a valve problem. Not a backwards heart, or major hole in my heart or anything like that. I was lucky.
And I came out of my shell. I visited the play room. I interacted with other kids. I made friends with nurses and doctors. I learned to love the people that were caring for me and to see that my visits to the hospital (which always seemed so scary and horrible) could be about visiting people that cared about my well-being and that I enjoyed.
Oh, and as a sign of how much I changed my attitude, while I was in the hospital, a news team from my local town in Florida came to do a story on another woman from Florida that had come to Deborah to have surgery she couldn't pay for otherwise. They learned that I was there and asked to interview my mom and me. I was thrilled to do the interview and the black and white photos on this page are from that interview. And in all the footage they got of me, what was the one word that remained after editing? They asked, what are you going to do when you return home? I replied, "party." Nice, huh? (Please note, I was NOT a party girl. I liked to have fun with my friends and enjoy their company. That was my idea of partying.)
I even corresponded with a couple of my favorite nurses for a few years after the surgery. Ultimately, a difficult thing turned into something a little more beautiful and the fear I had, perhaps the fear of death, dissipated. Suddenly I found myself healed on many levels.
Yes, surgery was painful. Yes, coughing and sneezing and even laughing hurt. I had a moment with my mom while we were playing cards (this was pre computers and cell phones remember) and for some reason we got the giggles. I eventually had to ask her to leave the room because it hurt too much to laugh. But it was healing. It hurt and it healed.
There were scary moments. There was the middle of the night potassium drip making my hand burn and swell and the rush of the crash cart coming into the room. And my mom coming to sleep by my bed instead of the parent's dormitory she had been staying in. The removal of the chest tubes was horrendous. When the doctor tells you it's okay to scream, you know it can't be good. And it wasn't. And scream I did. Felt like my insides were being ripped out. When I was getting ready to have surgery the second time, I was extremely apprehensive about this part of the whole deal. Fortunately, the method for removing my single chest tube (there were two the first time around) was drastically different the second time around and I felt no pain (it did help that I had been given something to relax me a bit).
Those were certainly scary moments. I imagine a lot of surgeries carry those moments. But we move beyond them, we heal. And that's what I did. I healed.
Blessings and Gifts - To laugh, to smile, these are giftsClick thumbnail to view full-size
The Ross Procedure
When I started to think a second surgery would be necessary, this time to replace my valve, I became aware of new valve replacement techniques. At the time, I was thirty years old and able to make more proactive choices for myself. Over the years, I learned about coumadin (the blood thinner I would have to be on if I had an artificial valve replacement) and I had no interest in living my life on such a drug. I was already very natural in my approach to health and the idea of living with regular checks to make sure my blood was okay, not to mention the side effects, wasn't something I could imagine. I'm so thankful that the first time around I didn't have my valve replaced with a mechanical valve and wasn't required to be on coumadin then, and that medical science had some time to grow and change.
For my second surgery, I chose to have a Ross Procedure. The surgeon removed my aortic valve, placed my pulmonary valve in the aortic place and then placed a cadaver pulmonary valve where my pulmonary valve was. The advantages were several. Being the same size, my pulmonary valve was the best fit in the aortic place and for most patients having had this procedure, the aortic valve will likely not need to be repaired again. And if the cadaver pulmonic valve needs to be repaired or replaced, it's a much easier surgery to get to the pulmonary valve than the aortic. The best advantage in my opinion is that I wouldn't need to take any kind of drug on a long term basis.
The major disadvantage to the surgery is that a perfectly normal and healthy valve, the pulmonary, is being messed with, causing potential for two valves with problems instead of just one. While this certainly was a consideration for me, the benefits outweighed it in my mind. I was planning to have children and knew that I could not possibly consider blood thinners for that reason and for so many others.
There was still some question whether the Ross Procedure would work. My surgeon wouldn't know for sure if they could do the Ross until he was inside my heart during the surgery. I told my husband before the operation that as soon as I woke up, I wanted to know what valve I ended up with. And I remember the relief when he told me that it was all good. They had done the Ross. Happiness...
Recovering From Open Heart Surgery Times Two
Recovery from both surgeries was very similar. There is a common description of waking up from heart surgery feeling like you've been hit by a Mack Truck and I'd have to agree. There's a lot going on with your body and surgery in itself is quite a traumatic event. Moving for the first time is challenging to say the least and getting out of bed, even to move to a wheechair, takes an enormous amount of effort. After the initial post-op days, it takes a while for the breast bone to heal, similar to a broken bone. Coughing, sneezing and even being hugged can cause pain for several weeks. The scar heals relatively quickly most of the time but still causes tenderness. During my recovery at home, I was encouraged to take it easy, but also to start moving and so I started with gentle short walks.
Unlike cardiac patients recovering from bypass surgery, I wasn't required to have cardiac rehab. After the second surgery, I was on two drugs immediately following the surgery, one to keep my blood pressure low and I'm not sure why I was on the other. I was seeing a pediatric cardiologist (even though I was thirty) since I had a congenital condition and a lot of adult cardiologists really don't handle CHD's often. And you can see the Blue's Clues Stickers on the wall behind me in the picture and probably determine I was once again on a pediatric wing.
Visiting my cardiologist's office was actually kind of fun. The nurses were used to dealing with kids and were really friendly. And it was a cheerful space. What I didn't know before I had surgery was that they wanted me to be on these drugs indefinitely. After the digoxin gave me migraine headaches on a daily basis, I convinced my doctor to let me stop taking it. As for the blood pressure med, my blood pressure was low to begin with and the meds were making it extremely low. I did my own research on the particular drug and discovered that it could be harmful to a fetus if I was on it when pregnant. When I let my doc know that, he was very kind and suggested that it might be time to see an adult cardiologist since he was used to dealing with patients too young to even consider being pregnant.
So I did just that. I found an amazing cardiologist, a mom also, and we began working together to make sure I remained healthy. Over time, the wounds healed and my life returned to normal. Three years later, my new cardiologist followed me closely during my first pregnancy and happily, I was able to have a normal pregnancy and natural, drug-free delivery. Miracles do happen.
Things To Know
- Did you know you can ask to listen to music when you are under anesthesia? My surgeon listened to music while operating. If I had to do it again, I would have asked to have headphones and my own favorite, most optimistic music playing while I was under. Know that you can make choices about the atmosphere of the operating room.
- In some hospitals, they have nurses or other care providers that can sit with you during the procedure giving healing touch or energy healing. I wish they had this for both of my operations. Not everyone will be into this, but I believe in it and I think that every little bit of positive, loving energy can only help. The book "Hands of Life" by Julie Motz is an amazing insight into how very powerful energy healing can be.
- For parents and loved ones of those under going surgery, prepare yourself for the first time you will see your loved one. My mom remembers how gray I looked and that she was a bit weak in the knees seeing me hooked up up to so many machines. For a parent, it can be difficult. Knowledge is helpful...understanding what different machines and wires and tubes are for helps make it feel a little less sterile and artificial. My husband had a tough time seeing me after my second surgery. I was semi-conscious but I do recall him nearby, almost passing out from seeing me. And I could hear him getting some attention from the nurses. He recovered quickly but it can be a bit of a shock.
- Perhaps the biggest message I can give is to remember that our human bodies are remarkably resilient. While doctors and nurses are great at facilitating the best environment for healing, it's really a completely internal job. Healing is about you, your body and your spirit. Bones knit together, skin heals, spirits mend. For me, prayer and visualization and healing energy made a vast difference in the whole process, from pre-surgery planning and jitters to post-operative healing and recovery. If it works for you, spend time before visualizing everything going beautifully during the surgery and after, during your recovery. Imagine it, see it. It really does make a difference.
- I know it may sound strange, but miracles happen in their own way. Before I had my second surgery, I decided to believe in a miracle. I wanted my heart to heal (and I wrote more about that in my blog). I really didn't want to have another surgery and I didn't want to be on blood thinners. So even though I did have surgery again, I'm not on blood thinners. When I have an echocardiogram done, my heart appears pretty much normal. After a lifetime of yearly heart check ups, my cardiologist has released me from her care, only to come back as needed. I have had two normal, uneventful pregnancies and have two healthy children, with no difficulties with my heart at all. Miracles really do come in all shapes and sizes.
- You are your own (or your child's) best advocate. Ask questions. Seek out information. Find a doctor and surgeon you are comfortable with. Get second opinions. Doctors do know a lot, but they are still human. They have different thoughts and views too. Find someone you feel comfortable with. This is, after all, your life we're talking about.
And We Move On - I live my life...
My family, 2011. I had two boys, both born normally and naturally, one at home even! Life carries on...
In the end, this is me. This condition, this surgery and all the other procedures are part of my story. I don't know that I would change it if I could. Maybe. But then again, maybe not. The scars have healed. They are still visible and while sometimes I wish they weren't there, most of the time I don't even notice them. I was self-conscious for a while after the first surgery and was very careful of what I wore, so they wouldn't be seen, but now, my zipper scar is part of me. It's an interesting conversation starter.
Having this condition as part of my life has shaped me. Who I am and what I'm interested in has been molded by this in so many ways. I am passionate about natural health and healing and I seek out alternative methods of healing. I believe in my body's amazing healing capacities. And even though it didn't come in quite the way I expected, I believe in miracles.