Interview with AVNRT Patient

Today I was able to sit and talk with Laura Wyman, who is a Certified Registered Nurse Practitioner. She has specialized in Pediatrics her entire career. I wanted to talk to her today because she has Lupus and eventually atrioventricular nodal reentrant tachycardia (AVNRT). I hope you enjoy reading her story, and maybe learn something.

An interview with Laura, a person with AVNRT

Heart health history

As you and I both know, women's heart disease/issues often take longer to be diagnosed. Due to that let’s take a moment and briefly talk about your heart history, which is extensive. Is there any part of your health history that could have caused your heart issues?

I was born with several congenital issues that led to a diagnosis of undifferentiated connective tissue disease. Symptoms of joint inflammation and other vague symptoms persisted throughout childhood and adolescence. 

In hindsight twenty years after the fact, I now know that several things likely contributed to developing these heart issues. During the process of initial diagnosis, I was extremely stressed, not eating well, not hydrated, not sleeping well. Underlying inflammation was a constant. 

The arrhythmias began, ablations weren’t successful, and the pacemaker was necessary. The subsequent complications led us to my diagnosis of systemic lupus.

Leading up to your diagnosis what signs/symptoms were you experiencing that led you to seek medical treatment? How long before they took you seriously and started testing?

I began fainting as a teenager. I could feel my heart jumping out of my chest, and also slowing down to the point it felt as though it was stopping. I would randomly become so dizzy and weak. 

Testing was done fairly soon, however lab work showed that I was hypoglycemic. I was dismissed as a teenager who was anxious and not eating well. When dietary changes weren’t helpful, I was referred to a cardiologist. I wore heart monitors multiple times before we captured enough information to proceed. It took approximately 4-5 years before an electrophysiological (EP) study revealed how serious things truly were.

Laura's treatment journey of AVNRT

Once it was found that you had atrioventricular nodal reentrant tachycardia (AVNRT), what treatment options were suggested? After your first intervention, how long in between were you instructed to wait to determine if it worked?

I was initially offered medications or ablation surgery. I tend to prefer less intervention, and  tried multiple medication(s). Some improved things for a bit, while others carried side effects that I was not willing to live with, such as the incredible fatigue from beta blockers. 

My cardiology team was wonderful about listening to me once diagnosed.  We would give medications a few weeks to work and monitor side effects, weigh risks and benefits, as well as if I could/was willing to deal with the side effects, and proceeded accordingly.

Since the ablations didn’t work to correct your AVNRT, what was the next step?

My first ablation was successful until I became pregnant. The increased work load on my heart induced regrowth of an electrical conduction pathway. 

I was put on beta blockers and monitored very closely. Unfortunately I had a miscarriage. Once recovered, I had a second ablation. 

This was not quite as successful, and I had more and more episodes of a very slow heart rate, under 40 beats per minute. A joint decision was made to insert a pacemaker.

After the pacemaker placement were you feeling better?  Were symptoms improving? Since, have you ever been 100% dependent on the pacemaker?

I had serious complications with the pacemaker surgery. One of the leads from the pacemaker poked through the bottom chamber of my heart and was, stimulating, my diaphragm rather than my heart.  

I developed pericarditis which did not respond to traditional treatment, and persisted for an entire year. I was then referred to an infectious disease specialist and rheumatologist, who ultimately diagnosed me with lupus.

I have been pacer dependent, but not often, thankfully. Currently, I am about 60-70% paced. It took a while, but we got it figured out. It has most definitely helped in many ways, and improved my quality of life immensely! I was no longer fainting, had energy, could exercise. I could live a “normal” life once we got everything under control.

Once your pacemaker was placed and you started feeling badly, how long did it take for your doctors to realize it was the pacer causing the problem? From that point how long until your pacer was removed?

I woke up from surgery feeling a strange sensation in my neck and chest. I told the nurses many times after surgery that something wasn’t right, but they told me that I just needed to get used to the sensation of being paced.

I felt as though I was drowning, and was extremely short of breath. The hiccoughs in my chest were so strong and almost painful. My heart rate was extremely irregular, which led to dizziness and weakness, sweating and fatigue. Unresolved pericarditis led to referrals, labs, tests, procedures, and the diagnosis of lupus.

After the pacer was placed, I went home, tried to endure this new sensation, but called my surgeon the following day or so and explained what I felt. I was seen immediately, and diagnosed with ventricular lead perforation and pericarditis.

The revision occurred fairly soon to prevent further damage.

Now that you have been living mostly without any heart issues, with your pacemaker, what is the up keep? How often do you have to have the pacemaker interrogated? How long will an implanted pacemaker “live,” before needing to have a battery charge or be totally replaced?

Technology is so great! I have monthly calls where they interrogate (ie check) to be sure the pacemaker is functioning well, assess battery life, and review any symptoms that may correlate with EKG concerns. 

A device life is dependent upon its usage, so a patient who is completely paced will use their battery faster than someone who rarely requires pacing. My first pacemaker lasted about 6-7 years; my current upgraded device is going on year 9. I am told I will need a new one soon.

Awareness for heart disease and heart failure

February is Heart Awareness Month, with the first Friday of February being Wear Red Day! How important to you is spreading awareness of not only heart disease, but WOMEN'S heart disease? Or are there more impactful things we could be doing in your opinion?

I love the wear red campaign - it’s simple, tangible, highly visible, and creates a ripple effect of starting conversations that may not otherwise occur. 

Research sample sizes need to include women, not the typical middle to upper aged corporate male. Ethnicity, lifestyle habits, genetics all need to be accounted for and considered when guidelines are developed.

If you could offer women any advice surrounding heart disease what would it be?

PLEASE listen to your instinct, and advocate for yourself. 

You know your body. 

Find an experienced, knowledgeable provider who listens, and who will fight with you. There are so many resources available currently that we simply cannot continue to allow heart disease to be the number one killer of women!