It wasn’t until I sat down to write my story that I realized, even though I had no idea I had a heart problem when I was younger, there are several images that came to mind where I thought, “that’s why I couldn’t do that!”
As an eight year old, I was active and loved the water. I was on the swim team at the local pool and had swim meets one night each week in towns across the county. There is one meet that I remember and not because I won. I normally only did races that were down and back to the finish, but on this occasion the coach wanted me to do the individual medley. Four laps and four different swim strokes. The starting gun went off and I started strong with the butterfly stroke, tied with the leader until the start of the backstroke. My arms got heavy and I pondered what would happen if I just climbed out of the pool when I reached the end of this lap. I didn’t quit, but was so exhausted when I finished that I just lay on my towel and watched the other kids run around eating snow cones. I remember thinking “why couldn’t I keep up with the others?” I so wanted to win, but it wasn’t to be that day! That question was a recurring one in the entire series of memories. Why couldn’t I breathe after running the mile in the sixth grade track meet? Why couldn’t I run the mile in 8 minutes like the rest of my volleyball team? Why did I almost pass out after playing all but three minutes of a basketball game, when the other girls were fine? My answer to those questions at the time was “maybe I was just lazy and didn’t work hard like the others”… I shrugged it off and went about life as usual. That is until I blew out my knee my senior year on the first day of volleyball practice.
I went into surgery to repair my knee and woke to the nurses commenting on my unusual heart rhythm. My parents and I waited seven hours to see the cardiologist and I remember him saying that if it were his daughter, he would just let it be and watch it. My parents seem to think that he wanted to do a treadmill test and I refused??? Me? Refuse? I was released and went home, tearing up the rhythm strips and moving on. Pffttt, there was nothing wrong with my heart (so I thought)!! I returned to life as usual and went off to college to get my teaching degree.
In the fall of 2000, my new hubby and I moved six hours away from our families to Seattle. Eric had been offered a job teaching middle school math and I was substitute teaching until I found a full time position. This was a stressful time for us because we didn’t know anyone there and missed our families and the familiarity of where we grew up. On the days I wasn’t subbing I stayed home watching TV. while eating away my loneliness. I was too scared to venture out and explore with so much traffic everywhere and no idea where I was going (GPS didn’t exist yet in my world). It was around March when I started having chest pain and eventually went to the doctor to have it checked out. I was sure it was just stress and anxiety. When I got there they had me walk laps to see if the pain got worse with exertion and then they did an EKG. The doctor was gone awhile and the panic set in. She entered the room with a somber look on her face and I cried before even knowing what she was about to say. I only remember her telling me that I had a 3rd degree heart block, I needed to go see a cardiologist, AND if I felt like I had an elephant on my chest I should call 911. I called the cardiologist office and was promptly seen a MONTH later. I didn’t sleep that month, afraid that if I went to sleep, I wouldn’t wake up!! That’s a drastic thought, but I knew nothing about this diagnosis.
The cardiologist did all the tests, including a treadmill test, where we discovered at my max my heart was beating 70 beats per minute. I was told normally people in their early twenties would be about 130+ beats per minute and given a very minimal idea what a congenital complete heart block was. The doctor told me that one day, when I was in my sixties, I would get a pacemaker. The casualness of the medical staff led Eric and I to believe that this was no big deal, business as usual. We used to laugh at the nurses when I went in for my doctor visits while pregnant with our daughter. That is how little we knew and how few symptoms I had. I wasn’t at all concerned; the cardiologist certainly didn’t seem to be. I had both of my kids without incident and once again was going on with life as usual. I was teaching full time, going to school to get my masters degree and had a 2 year old and a 10-month-old baby. With so many things going on, I started to get really bad back pain. So bad that I had to have a colleague take me to Seattle in the middle of a school day in January 2006 to go to urgent care (I’m sure our principal loved covering two classes ☺). I remember being really mad because the urgent care doctor kept telling me I needed a pacemaker and didn’t look at my back at all. I had just seen my cardiologist the week prior and got another confirmation that I was good to go until I was WAAAYYY older. Life resumed and I had to struggle through with the back pain, finding ways to cope while being mommy, teacher and student.
At the end of January, first of February, I had a weird dizzy spell. Then I had one more while teaching. I called the doctor and she referred me to the cardiologist office. They gave me a monitor and instructed me to record any episodes I had. I had one, of course in the middle of a math lesson with my third graders. They all stared at me like I was an alien as this monitor beeped really loudly. I called it in right then and was told I needed to be seen because my heart was only beating 30 bpm. That news hit me like a ton of bricks. I couldn’t react in front of my students and somehow kept it together until I got home. Eric certainly didn’t see this coming either! I saw the cardiologist and sobbed uncontrollably while he told me I would be getting a pacemaker in the next couple weeks. I think he was so used to his older patients complacently accepting this news that I made him quite uncomfortable. He excused himself so I could cry for a while, and then he came back (how thoughtful of him ☺). I didn’t know what questions to ask, or what to expect, so I cried daily! I would look in the mirror and try to imagine a scar on my left shoulder to try and prepare myself. All I knew was they were messing with my heart and I wasn’t sure if I would make it through the surgery, and even went so far as to instruct my sister what to do to help Eric and the kids in the case that I didn’t make it! The morning of surgery we took the kids to their babysitter (more like a surrogate grandma) and I hugged them for a long time, not wanting to let them go or say goodbye. My parents rode with us to the hospital and tried to comfort me as best they could in my inconsolable state. When they called me back, I was still crying and the nurse said “relax, we do this everyday. You aren’t going to die.” That statement did nothing to reassure me.
I was prepped for surgery on February 21, 2006 and taken to the OR. I originally was asleep and a while later found it weird that I could hear them comment on the fact that my heaviness would hide the pacer well. Then I was alarmed when I could hear them say they couldn’t stop the bleeding, as I could feel pressure and pulling at the incision site. I was panicked because I couldn’t talk and didn’t want to hear anymore of this!! I tried to move my head under the sheet and eventually the anesthesiologist pulled the sheet back and asked what I needed!! WHAT!!! They put me back out and finished the implant. As the doctor wheeled me to the recovery room, I told him I was not happy with his comment about my weight! He stuttered a few times and said he tries to keep the conversation professional. As groggy as I was, I was still giving a mental fist pump at calling him out!
I went home the same day and began the recovery process. The only thing they told me is that I shouldn’t move my left arm and that I would feel better. Well, I didn’t feel better. In fact, I felt worse. I went in to my post-op visit and was supposed to do a stress test and get my stitches out. I sobbed so hard, that they didn’t put me on the treadmill. My heart rate was already 164 bpm. I was filled with anger because I didn’t think I needed this pacemaker, it wasn’t improving my quality of life. I was more exhausted than ever. Year after year, I explained that I didn’t feel better. Year after year I was told it was because I was out of shape and it would get better with time. I was merely going along, not knowing things could be so different. That is until I joined Wired4Life in 2012.
I had finally found a support group for women with implanted cardiac devices and in a short time learned things about my device and my condition that I would never thought to ask at doctor visits. It was nice occasionally chatting with wired ladies on line, but I wanted so badly to attend the Wired4Life conference, hoping that by being with others in similar situations would finally give me some peace and a more connected feeling of belonging. I talked with my husband about it all through the winter of 2013 without a definitive answer. By May I told him I was just going to mark “no” on the Facebook invitation. He blew me off with some excuse, saying we would talk about it later and I bought it since we were in the car going somewhere. I kind of silently mourned the fact that I wouldn’t be going and quit talking about it. On June 17th, we were celebrating our 13th-wedding anniversary, sitting in a quiet booth for dinner. He handed me a card while we waited for our food and I immediately burst into tears as the last line said, “Have fun in Minnesota”!!! I couldn’t believe I was going to get to meet all these women in person!! The moment all us ladies were in the same room, chatting and catching up, I was overcome with feelings I still cannot explain! There was nothing but unconditional love and support. The conference was more than I could have ever asked for. The stories that were shared were amazing, and I no longer felt that I was alone in this situation. I left feeling whole again and ready to start living, I mean really living! All of the unconditional love that was experienced from wired sisters I will carry in my heart until we meet again and forever more.
Getting to tour Boston Scientific and meeting the men and women that made my device with so much care was so emotional, I think I cried the entire time. The care and pride they take to make life saving devices comforts me. Before lunch I got up the courage to approach Jeremy, working in quality control at Boston scientific. I told him my story and how many years I had been trying to convince my cardiologist that something wasn’t right. He stopped what he was doing and listened to me. He heard what I was saying and immediately took action. That gave me hope that I would get better knowing that I have an advocate on my side. Which is exactly what has happened since September. Jeremy led me to my local Boston Scientific Representative Nathaniel and I have no words for my gratitude toward both of them. The inner strength I gained from my wired sisters and my new care team from Boston Scientific has led me to become an advocate for myself and not except mediocre care anymore. I will be eternally grateful to God leading me to Dawn and all my wired sisters, for my wonderful husband and my family for all their support.
As it turns out, God knew I would need these wired sisters more than ever as my quest for answers continued! When it was discovered that a simple tweaking of my pacer settings and beta-blockers wouldn’t work to make me feel better, and my cardiologist was content to wait it out. I decided that wasn’t good enough. I was done waiting and summoned that no-nonsense energy from my wired sisters to have a conversation with my cardiologist, where I may have lost it a few times, and was referred to an electro physiologist to look into my symptoms. This is the best thing I have done for myself because this new doctor ordered every test available, listened to my symptoms and knew that something else was going on. I was completely overwhelmed by all these cardiac tests, but I knew it would help me get answers. And, answers are exactly what I got! I found out my heart was failing and I wasn’t getting enough breath, making me tired all the time. At 36, that is not the news I was expecting. My world came to a screeching halt. I was put on a medication that has gotten good results treating heart failure in other patients, but I unfortunately couldn’t tolerate enough of it to be effective. I took 1 mg. of it for two months (the desired amount is 25 mg.) and missed many days of work as it dropped my blood pressure too low. When the doctor checked my heart function again, he found that it had decreased drastically in two months and he let me know that he would be taking a more aggressive course of treatment. I was told to keep my phone on and with me because he would be working fast to get my heart under control.
That very afternoon I received a call from his nurse informing me of an appointment Monday (three days away) to have a heart scan and meet with a transplant surgeon and then have a CRT-D (cardiac resynchronization therapy device with a defibrillator) implanted Wednesday. This was by far the scariest time of my life, but I found comfort trusting in God’s plan for my life. I was blessed to have Jill, my wired sis from Spokane, Beverly, my wired sis from Tennessee and my husband all supporting and caring for me! I’m not sure I would have stuck around to meet with the transplant surgeon if I wasn’t sitting between Beverly and Eric in the waiting room! Hearing all the horror stories and daily struggles of the other transplant patients was enough to make me want to run out of there! The two of them talked me down and I met with the surgeon. It was a three -hour appointment and I think I remember some of it! Luckily Beverly took notes and Eric was listening, I was too scared and overwhelmed to concentrate. It turned out that I was not yet a candidate for transplant and he wanted my Electro physiologist to do a couple other tests before the new device implant to look at all the variables. The one thing I remember clearly is that he shared my frustration about other doctors not investigating my situation much sooner! I left feeling validated and exhausted from so much stress!
There was little sleep to be had in preparation of the implant, I was so nervous! However, time flew by quickly Tuesday as it was filled with a shopping trip, movie watching and a trip up Mt. Spokane with Jill and Beverly. We laughed, we cried and we enjoyed fresh mountain air. It was a much-needed break to feel a little normalcy in the midst of all that turmoil!
The implant surgery went well and my doctor did not find any other issues, so after two days in the hospital and several unsuspected selfies to document my stay, I got to go home. The recovery has been a day-by-day process and continues to be after two months. My doctor told me to be patient, as rebuilding my weak heart will not happen overnight. At my two month check-up, I was cleared to go back to work for a couple hours a day. I have started to feel more energy as time goes on and am looking forward to feeling better!
This journey will never truly end, but I am learning to accept this and find peace with it. This is the path God has laid out before me and I look forward to seeing where it leads. It certainly has already led me to many new lifelong friendships and has enabled me to help others find their way in times of need.