First the Wait, Then the Date

The anticipation of, and preparation for, heart valve surgery.



Replacing heart valves can be a tricky business because it involves multiple variables. It may become evident that a patient is likely to need a valve replacement well before the surgery actually becomes necessary. Knowing that you’ll be needing a serious heart surgery in the future, but not knowing when, can wear on a person. Michaeline Della Fera shares how she’s feeling about being in that position. Then, Christine Rekash shares the story of her diagnosis and surgery and offers some great pre-op guidance for others.

 

Halftime in the Waiting Game

By Michaeline Della Fera, Survivor Hollis, New Hampshire

I live every day in terror of what I know is coming! I am one of the approximately 2 percent to 9 percent of people over the age of 65 with aortic stenosis, which is narrowing of the aortic valve opening. This valve connects the left ventricle and the aorta. In my case, surgery is required … at some point. Knowing that thousands of aortic valve operations are performed each year in the United States doesn’t relieve my terror the least bit.

I’m an anomaly in many ways. I’m past retirement age but am as active as a 45-year-old: I walk five to seven miles a day and participate in weekly Pilates and yoga classes; I still work full time at Rivier University in Nashua, New Hampshire; and a year ago I adopted an energetic, 10-month-old Boxador (boxer/Lab mix) puppy. I wish I had a tenth of her energy!

In June 2015, right before I adopted Shelby, I visited my doctor to renew my thyroid medication for another year. I happened to mention, “I know I’m getting older, but I’m out of breath a lot.” Before I knew it, I was hooked up to an EKG machine and suddenly staring at abnormal test results!

Most people have tricuspid (three flaps) aortic valves, but about 2 percent of the population are born with bicuspid (two flaps) valves. I am one of those — an anomaly. Though I knew of this congenital defect, I honestly had not given it much thought over the years. It had affected my activity level as a child, but it hadn’t been an issue in adulthood. So the abnormal test results came as a shock to me. I have a family history of heart disease, but with the healthy lifestyle I have lived, I’ve never given all this heart mumbo jumbo much thought, except at annual physical time. Some doctors heard my murmur, others did not.

My aortic stenosis has progressed and now I’m facing aortic valve replacement surgery.

Slowly I am undergoing all of the tests necessary for surgery: an EKG, two echoes, a stress test, two weeks of event monitoring and an MRI. To complicate all of this, I am claustrophobic, fidgety and unable to stay still. I had to be anesthetized for my MRI. I am not a very good patient.

Results from my MRI showed that the left side of my heart is slightly enlarged. The cardiologist told me it’s a symptom of my defective bicuspid valve, which causes my heart to work harder than usual. “It’s not severe enough to worry about now,” he said. Easy for him to say! This defective valve is in my chest, not his.

“Why not do the surgery now while I’m feeling pretty good?” I asked. “It won’t take me as long to heal.”

“Ordinarily someone with all of your symptoms would be having surgery now, but it’s obvious you’re not ready,” my cardiologist said. “People die from this surgery. It’s high risk. We don’t like to do it too soon. The replacement values only last 10 to 15 years.”

Micaeline walks her Boxador pup, Shelby

I felt as if a tank had run over me. On one level I was pleased: I don’t want to go through this surgery, and he was giving me a temporary reprieve. But the waiting is difficult. During the day, I can usually keep my negative thoughts at bay with plenty of distractions. But at night, in the dark and with no distractions, my imagination runs wild and all of my fears come to the surface and I become even more anxious.

There are other tests awaiting me — a transesophageal echo test, a cardiac catheterization and probably some other tests I don’t care to know about. They all offer more chances for me to be a highly anxious patient.

So, I live every day in terror, feeling as if a ticking time bomb is sitting in my chest cavity. While my research tells me that the chances of a heart attack are slim, I am forced to be realistic. Most of my family members have died of heart-related issues.

My huffing and puffing has become audible, and I avoid stairs and hills. While I am still walking, I have slowed way down. My cardiologist advised me to watch for symptoms such as feeling like a dog is sitting on my chest and when I walk to be aware of feeling dizzy, lightheaded or faint.

Right now, I feel like I’m at halftime and the score is going against me. I’m tired and afraid of losing the game. The second half looks even scarier!

Dr. James Edgerton explains four basic treatment options for heart valve patients:


 

How My Murmuring Heart Became the Queen of Hearts

Christine Rekash, Survivor | Woodridge, Illinois

I am a survivor of heart and valve disease.

I lived with mitral valve prolapse with severe regurgitation for 10 years before it was recommended that I have a valve repair. During those years of watching my condition, I gave myself a birthday present each year and scheduled follow-up appointments the month of my birthday, every August.

How It Started

At a routine physical in 2001, my primary care physician detected a heart murmur. A specialist told me I had mitral valve prolapse. I was given the option of taking beta blockers that would “treat” the palpitations that I would occasionally feel but did not attribute to the newly diagnosed heart murmur. Uncomfortable with that type of generalized prescription, I sought a second opinion and became a patient of Robert Bonow of Northwestern Memorial Medical.

As soon as she received clearance from her cardiologist, Christine began a kickboxing regime.

After several years of annual echocardiograms, stress tests and a watchful eye, in October 2009, I was diagnosed with a leaky mitral valve. In October 2012, I was advised that the results of that year’s echocardiogram indicated that my mitral valve regurgitation was becoming severe enough that I should consider surgery while I was a young and healthy 41-year-old. The irony of the situation is that externally I wasn’t feeling anything but what I had grown accustomed to — the daily heart palpitations and fatigue that I attributed to the overall stresses of everyday life. However, internally, I began to exhibit signs on my echocardiogram that my left ventricle and atrium was becoming dilated as a result of the heart working harder to pump the blood that was regurgitating backward. As a result of the blood pumping backward, it was not pumping efficiently throughout my body.

While I struggled with the concept of having surgery at such an early age, especially being in optimal health, I was advised that a repair to the valve is more advantageous than a replacement. The hardest pill to swallow was the fact that my disease would only get worse as time progressed. The heart would become weaker and both the ventricle and atrium would continue to enlarge; pressure in the lungs continue to increase; chordae (cord-like tendons that connect to the tricuspid valve and mitral valve) become weaker, possibly rupture and cause irreversible damage. I continuously struggled with the thought that while I maintained a healthy weight of 125 pounds, overall healthy diet, non-smoker, non-diabetic, perfect blood pressure, cholesterol within limits and moderate exercise, for me, a structural abnormality simply ruled this disease.

What Happened

With all of this being said, my husband, Jim Wagner, and I met with my surgeon, Patrick McCarthy also of Northwestern. After many questions and answers, hesitations, fears of the unknown and all the “what if’s,” I scheduled the surgery for June 13, 2013. I chose to have the traditional open heart sternotomy incision even though I was an optimal candidate for the robotic minimally invasive procedure. I was not overly concerned about the cosmetic appearance of the scar post surgery as much as I wanted to minimize any risk during the operation. In my opinion, sometimes the old-fashioned ways are the best ways. Open-heart surgery has become so advanced that I was comfortable with the traditional sternotomy being in the hands of world-renowned surgeons and cardiologists at Northwestern. On June 13, 2016, the mitral annuloplasty ring to repair the mitral valve as well as repairs to the chordae were completed. (Visit Heart.org for more information on treatment options for heart valves)

Preparing for Operation Backward Blood

“Operation Backward Blood” was the moniker that I chose for my surgery. In preparation for Operation Backward Blood, I researched what I could to dispel my anxiety, uncertainty and fears of what I was about to encounter. Surprisingly, there was very little information available on how to prepare for open-heart surgery. Looking back, I can truly say that the anxiety of the surgery was the most stressful part, and I would have been even more anxiety ridden had I not done my homework. With this in mind, I would like to share with you some tips and tricks for my preparation of Operation Backward Blood pre-op, post-op and recovery from a woman’s perspective.

If you are fortunate, as I was, to have some time to schedule the surgery, you should also be able to organize and delegate work assignments, household chores and shopping lists. While I do not recommend scheduling six months in advance as I did, because anxiety levels just intensify, I found that it was extremely helpful to make notes and deadlines for myself as the operation drew closer.

I also applied this tactic to my job. I took copious notes of where I left off regarding my workload. I found this extremely helpful when returning to work.

Additionally, I began to keep track of common items, as well as favorites, that I buy so that my husband or caregivers would be able to streamline their trips. I even made meals ahead of time and froze them for when I would return home, with the intention to make cooking a little easier for my husband and caregivers. There’s nothing quite like homemade chicken soup to help you feel better instantly. I am fortunate that I have a close-knit family and had fresh homemade “meals on wheels” delivered by my parents and sisters.

Lastly, I scheduled a few days off prior to surgery to clean my house from top to bottom one last time, make a final trip to the grocery store, pay bills, organize my legal documents needed for the hospital, prepare for my recovery, pack for the hospital and enjoy time with my family and friends. (See Christine’s blog for more detailed pre-op packing list tips and tricks.)

Queen of Hearts

My recovery from open-heart surgery was not an easy road by any means. I encountered many frustrations with my slow progress and struggles with multiple road blocks. During this four-month recovery period, I also had to have three cardioversions, 13 weeks of cardiac rehabilitation, as well as a cardiac catheter ablation to eradicate a tripping circuit that was causing me to have continuous atrial flutter and fibrillation. My heart rate would elevate as high as 185 beats per minute at rest accompanied by lightheadedness, low blood pressure and fatigue. As a result, this caused great anxiety, concern and worry counterproductive to recovering from heart surgery. I often thought to myself, will this ever end? My family’s and friends’ love, dedication, compassion and support on all levels were the cornerstone for a positive and successful recovery. Everyone was unique and different in how they demonstrated support to me during this time. Words cannot express enough how much my family and friends motivated me to “keep on fighting with heart” through all the negativity that lasted at least a year and half. Whether they were near or far, I could not have pulled through it all without them. (See Christine’s blog for more detailed post-operative recovery-at-home tips and tricks.)

Planning and prepping for heart valve surgery

In June 2016, I celebrated my three-year anniversary of surgery. I also began kickboxing after getting a cardiac release from Bonow, who was excited for me to get back into a fitness regime. I knew from previous experience with the martial arts that this sport would be good for me to “get back in the ring and take another swing.” At my gym, I was given the fighting name “Queen of Hearts” as I have made it my mission to “kick out heart disease one beat at a time.” As a Heart Valve Ambassador and Go Red for Women Ambassador, I hope to be an inspiration to others, especially women. Heart disease affects one-third of us, and it certainly does not discriminate. When followed carefully by expert medical staff, with treatment timed right, women with heart valve disease can lead normal, active lives. They can maintain vigorous lifestyles and not be destined to a life of difficulties.

While Operation Backward Blood has been elevated to “Mission Accomplished” status, one more mission remains. There is still plenty of fight left in me, and it is my personal mission to keep paying it forward to those enduring similar heart journeys who may not have the support and encouragement of others that has blessed me. Through the hard work, dedication and amazing advances of the American Heart Association, my personal mission of supporting others has begun. And by sharing my story of setbacks and struggles of mind and body to the success of spirit through encouragement and motivation to keep on fighting and keep on “kicking” out your heart disease one beat at time, I have become the Queen of Hearts.

 

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.

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