4 Cardiac Health Stories Relevant to Women

My friend Lorraine has been posting recently about her medical journey. She almost went down a road that would have involved invasive surgery, a lengthy recovery and time lost on the things she loves most. However, she sought a second opinion and has a new plan that will hopefully resolve her issue while preserving her health and time.

Although Lorraine’s story doesn’t regard cardiac health, it dovetails with four different cardiac health stories I’ve heard this week. The topic is personally relevant for many reasons, and each story left me wishing we handled women’s cardiac health issues differently.

Sudden Death Due to Cardiac Arrhythmia

My friend Chris Russell shared a story this week about a young endurance runner who died suddenly due to a cardiac arrhythmia.

The information about cardiac arrhythmia accompanying the article says this:

Cardiac arrhythmia is a frequent cause of death during sleep. This is when the heartbeat is irregular and the heart may be beating too fast or too slowly. Although they can affect all age groups, it is more common in older people and drinking in excess or being overweight puts people at greater risk. Sudden cardiac death from an arrhythmia kills around 100,000 people every year.

Note: I believe the “100,000 people per year” figure applies to the UK. The Cleveland Clinic puts the figure for adults in the US at 325,000.

Whether it’s 100,000 or 325,000, the number is too high. Due to our family’s experience with Long QT Syndrome (we lost a family member who died in her sleep at age 30, leaving behind three young children), along with stories such as Christine Garwitz Puricelli’s regarding her daughter Emilie (here’s Emilie’s page for info and donations), I am a staunch advocate for awareness on the part of medical practitioners and self-advocacy by patients.

Women and Cardiac Health

Emilie Puricelli

Takeaway: Be persistent if you feel there is an issue even after doctors say things are okay. (My sister-in-law had been hospitalized a short time before her death, but the medical exploration focused on areas besides cardiac issues. How could a 30-year-old with a career and three little kids, appearing mostly healthy, have a cardiac problem?)

(Now that we know of the issue, most people in the family who share genetics with my sister-in-law have been tested and the ones who do have Long QT are on appropriate medication and know what precautions to take — this stands a significant chance of helping them normal lives with normal longevity, thank goodness.)

A Close Call Due to Sudden Cardiac Arrest

My friend Lisa posted this article about a man who went into sudden cardiac arrest during a workout and was revived by a truly serendipitous combination of events that included the presence of nurses (and easy access to an AED).

Lisa should know. I think it’s safe to say every single one of us in the Tallahassee running community who know and love Lisa said something like “you must not mean Lisa” when we first heard about her cardiac arrest and subsequent surgery a few years ago. (Lisa tells her story here in this older post from a time when we were trying to help her with a particular campaign.)

Takeaway:  While it would be unrealistic to say “never work out alone” or “always have a trained medical professional nearby,” do be cognizant of your workout conditions, especially if you have a family history (Lisa had a family history; I’m not sure about the cross fitter featured in the other article). I suppose the other takeaway is “don’t assume anyone is invincible.”

A New Cardiac Problem Along With a New Baby

My friend and former coworker Janet posted this article about a woman who developed postpartum cardiomyopathy shortly after her baby was born. Janet, who also came far too close to losing her life due to PPCM, feels that education is important (I agree).

More about PPCM (from My Heart Sisters):

In PPCM, heart cells become damaged through an inflammatory process, and a woman can go from healthy to complete heart failure in hours, days, weeks or months after giving birth and sometimes while pregnant. It is one pregnancy complication that is rarely spoken about and because no one talks about it, it continues to claim lives and cause incredible suffering.

Much like Serena Williams had to convince doctors that she was on the verge of a life-threatening condition right after she gave birth, many PPCM stories I hear have the same thread: “thank goodness a medical professional FINALLY listened.”

When Technology Helps Reveal An Underlying Issue

My friend Karen had serious open-heart surgery last year. I believe it’s safe to say everyone thought the major issues were resolved, and she returned to her taxing career as an elementary school teacher. I’m keeping this explanation concise, because it’s a developing situation and I respect her privacy.

But apparently she had an Internal Loop Recorder placed after her original surgery. It recently showed signs of a serious new issue. That led to a life-saving placement of a pacemaker/defibrillator. Without the loop recorder, it could have taken much longer for the new issue to arise, and her life would have been more at risk.

Takeaway: Technology can play a huge role in cardiac health. I have an IRL too (for a much less serious reason than Karen) and I am reassured that it is keeping track of my Multifocal Atrial Tachycardia so if an issue does arise, I can have it addressed immediately and my physician will have lots of useful information. By the same token, and I realize this contradicts what I just said, don’t depend solely on technology. It isn’t the only information that helps a doctor make a decision and it can be inaccurate.

How to Be Your Own Best Advocate

When I set out to write this post, I asked if I am really qualified to do that (this is a question I ask before writing most posts, but in general I believe in taking the first step and acknowledging that there is a wealth of information among my readers/followers — what I don’t know (or get wrong), they can fill in the blanks).

Based on the four scenarios and takeaways I shared above, here are 5 important tips (even if I don’t practice them perfectly myself).

  • Keep asking even if told you are okay
  • Modify your fitness routine to accommodate any potential cardiac issues
  • Do your own research
  • Document everything
  • Take advantage of technology

I also like much of what Trin Perkins has to say in 5 Ways to Be Your Own Health Advocate, including “view yourself as the client, not the patient.” She has a point.

I am happy some of the people mentioned in the stories I shared today survived, and sad that some lost their lives when I believe more awareness of women’s cardiac health issues could have led to a different outcome.

Speak up, friends. Your life may depend on it. (And please listen up, medical professionals. Our lives may depend on it.)

Women and Cardiac Health

 

Wife of one, Mom of two, Friend of many.

Who’s Running for Who?

I applied to be a runner for I Run for Michael (IR4) back in the early summer of 2013. With IR4, runners are paired with people who have difficulty running due to physical challenges. By July I was matched with Gareth, a young man in Pennsylvania. The reason Gareth’s family had applied for a runner is because he has a mitochondrial disorder which makes it difficult for him to expend energy in a way that is equivalent to other boys his age.

Once you are matched, it doesn’t take long before you start dreaming of meeting your match. You share so much, on the private I Run for Michael page, in messages, cards, letters, and other types of communication. But nothing is the same as looking someone you have come to care about in the eyes.

When I started making plans to do the 2015 New York City Marathon on March 15, 2015, as part of Team in Training/Team SOAR, I started googling around for 5Ks in the area where Gareth lives, since it was within driving distance of NYC. Lo and behold, there was a 5K in his town on the Saturday before the Sunday half marathon! The event was the Warm Hearts 5K benefiting the Sam Vlasics Foundation for Heart Defect Awareness

On Friday, March 13, 2015 (yes, Friday the 13th!), I flew to Newark, and took one of the trip’s many buses into NYC. I dropped my luggage at a hotel room of a helpful friend, visited the race expo to pick up my number for Sunday’s half marathon, returned to the hotel room to consolidate my stuff into a small bag for the 5K with Gareth, and headed out to a bus for his town.

I should note that all throughout this traveling, and for days leading up to it, and until the moment my head hit the pillow that evening, I prayed that the 100% chance of rain for Saturday would be wrong (it wasn’t).

Saturday morning, Gareth, his mom Kim and his dad Nick picked me up and we headed to the race venue! Although I have done the race morning/packet pickup drill countless times, it was exciting to share it with Gareth. He wanted to take a “light jog” around the building and I was all to happy to oblige (because moving = warmth and it was quite chilly!!).

We snapped a few pictures before the race (unbelievably throughout the whole day we never managed to get a picture with Gareth’s parents in it — which is a disappointment but I suppose that gives us an excuse to get together again in the future!).

We did a bit of strategizing. Because Gareth’s mitochondrial disorder (MCAD) makes it difficult to use energy for an extended period of time, we decided he would run the first half mile with me, then wait for me to do the loop around an industrial park that followed the first half mile. We would meet up to run in together. Poor Gareth (and his dad, Nick) had the worst part of the deal … standing around in the cold rain FREEZING while I ran (and, sigh, walked some as I was dealing with the heart rate issues that have been cropping up lately).

Finally I made it around to the spot where Gareth was waiting for me. We had a little under a half mile to go. Having seen several pictures and videos of other IR4 children and runners sharing races together, I have to admit I had in my mind’s eye a picture perfect scene of Gareth and me crossing the finish line together, hands raised victoriously (NOTE: the picture perfect scene fantasy did NOT include freezing rain!).

Gareth and I started toward the finish line. He had lots of pent up spirit, having frozen to the bone while waiting for me. As we approached the finish line, my HR zoomed up (the preliminary diagnosis is Atrial Fibrillation but that is still getting resolved) and I had to stop and walk at what was supposed to be the big big moment!!! Given the choice of passing out (not picture perfect) and staying upright but walking, I chose to walk. It was awesome watching Gareth sprint through the finish line. He waited for me, came back to me, and we did cross the finish line together (chivalrous kid, this one!).

Gareth’s family took me out to breakfast at a local diner after the race. We were all happy to be out of the wet/cold weather and to share a meal together. (And yes, this southerner did have to ask what pork roll is!). As we finished up our breakfast, I checked the bus schedule and we came to the conclusion that we should try to get me to the 1:15 bus (which as it turns out is a Sunday bus (read schedules much, Paula?)). Good thing we arrived at the depot in time for me to catch the 12:45 at the last minute (hence the hasty goodbyes and lack of pictures with Gareth’s parents!). I was able to make it back to the city in time for a lovely warm shower and to get ready for a team dinner prior to my NYC Half Sunday morning.

TAKEAWAYS:

CHD

I loved the fact that the 5K I happened on to was a benefit for a Congenital Heart Defect cause. My friend Karen here in Tallahassee has taught me a lot about CHD (and she sent an awesome goodie bag from Broken Hearts of Florida for me to give Dana, Sam’s mom and head of the Sam Vlasics Foundation). Since our family has a history of Long QT Syndrome, we feel an affinity for all causes heart related. I liked helping a cause close to my heart (yes, I had to say it that way!).

It Takes a Village

I started emailing Dana quite some time ago when it appeared I may be able to do the 5K. I explained the situation with IR4, and the fact that we would possibly need to make some accommodations due to Gareth’s MCAD. Long story short: she said “whatever you need, we’ll make it work.” And she did. I am so grateful.

In addition, I am a person who tends to do things by myself first and ask for help second. I made a plan to stay at a hotel Friday night (because frankly, as wonderful as IR4 meetings seem to almost always be, that’s a lot of pressure on two sets of people who don’t know each other yet), and I planned to take a cab from the bus depot to the hotel. It wasn’t a long distance but not really walkable at night. Yelp reviews such as this one left me feeling a little leery. When Kim offered to pick me up at the bus depot, I agreed. We had such a nice visit, and a quick sandwich (no, I hadn’t thought ahead to plan dinner (ongoing joke of the weekend — you’re a veteran traveler??)). It was really nice to visit briefly prior to race morning and get in our first “getting to know you” moments without the race adrenaline playing a part. I know Gareth and family had to wait around for the bus (which was later than planned), leave early on Saturday morning to pick me up, and make other accommodations to make my visit so pleasant. They were awesome.

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You Gotta Have Heart

I was SO disappointed to have an AFib (if that’s what it is!) attack right before the “big finish.” At the times prior to meeting back up with Gareth that I had to talk to keep my HR down, and the times I had to stop and walk right before the “big finish,” all of the negative self talk I have struggled with as I have gotten slower and slower was swirling through my head. BUT of all the people around whom to accept the fact that I had to make accommodations for my health, this was the place to do it. That is Gareth’s life … making adjustments moment to moment to balance enjoyment and the thrill of using energy with the fact that the physical challenges necessitate doing things that don’t necessarily look “active” to unknowing onlookers. (And honestly…the scene of him running through the finish line by himself was priceless to me!).

I Get It A Little Better Now

You can read about mitochondrial disorder. You can tweet about it, try to understand, listen to people’s explanations. I still am no expert, but what I did “get” by being in Gareth’s presence is that like any boy he likes to go places fast. Even a trip to get a napkin involved a sprint or skip. When he and I were starting the race, I explained that I am running slower than usual due to trying to figure out this heart thing and appealed to him to pace me. But of course he wanted to run. Who wouldn’t? The challenge is the pain he may face later if he doesn’t parcel out the way in which his energy is used.

Love Love Love

I am struck, in ways I find difficult to express, with  how much these two parents love their child. Not that they wouldn’t love their child but seeing that love in action, on a day called “warm hearts,” warmed mine. I am sure they think they are just doing what any parent would do, but they do it well and clearly this kid is their heart.

Why is Paula Wearing a Skunk Hat?

This day coincided with the Idiots Running Club Skunk Run. That called for a skunk hat (and skunk shirt, of course). I was a little worried about that until I “got” Gareth’s sense of humor. It all worked out!

Lastly, more pictures:

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Race start (Gareth in blue jacket/shorts, me in pink)

 

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Gareth's Finish

Gareth’s Finish

 

Finishing together!

Finishing together!

Note: The I Run for Michael organization has many more runners waiting for children to run for! For more information, visit the site by clicking this link. (Or ask me! I am happy to answer questions!).

Wife of one, Mom of two, Friend of many.

Turkey Trot Race Report 2014

I love the Tallahassee Turkey Trot. I mean, love, bolded, in RED, italicizedunderlined love the Turkey Trot. I love the Turkey Trot so much that when my husband suggested I go to New York for my 50th birthday (which fell the day after the Turkey Trot this year), I refused to even think about it (and trust me, me turning down any hint of going to New York is big!).

"Tuning Up" with the Cycling Turkey four days before the race!

“Tuning Up” with the Cycling Turkey four days before the race!

Before talking about Thursday’s 10K race, I have to add a caveat. I wrote this post about finding “ands” instead of “buts” in your running and am the most ardent of believers in the fact that every runner matters, and that the joy of running can be found at the front of the pack, the back of the back, and everywhere in between.

Post-Turkey Trot Questions

But Thursday was a day that shook me up a little bit, and it will most likely be a milestone in my running journey. Around the 5.5 mile mark, and right at the moment a runner came up to me and said, “your pace has been great; I have been trying to catch up to you to tell you that,” my pace immediately became a walk as this happened:

Turkey Trot HR Chart

“This” is my heart rate going a little bit wildly off the charts of what is normal for me. (My normal is 143-186 (with 143 being where I could converse with you while running and 186 being my “sprinting as if my life depended on it” pace). There’s a good basic explanation of heart rate training from Chris Russell of Run Run Live here.

I have been training by heart rate (under a coach’s supervision) since April 2012. As far back as February 2013, when I ran the Flash 12K race, I have had odd HR spikes. I remember the “angel” runner who ran through the finish line with me saying, “we’ll do this together.” The issue started cropping up again this summer, at the Pot Luck Bash and each of the summer trail series runs. I sort of chalked that up to the heat and race adrenaline. I had a racing HR issue during one training run this summer but again … Florida is hot in the summer (mild understatement).

I finally decided to discuss this (and a few other “small” issues) with my primary care physician. He did an in office EKG (fine) but decided to go ahead and refer me to our health plan’s staff cardiologist (props to the health plan for having a staff cardiologist). He had me do a stress test (thanks for the mile, doc!) (fine) and went ahead and had me to a cardiac echocardiogram (fine).

Feeling relieved, I thought “I can put all of this cardiac worry behind me since I checked out okay.”

When My Gut Said “WALK”

I arrived at the Boston Mini Marathon on October 25, my second half-marathon, feeling great. Although it was cold outside, the weather was perfect for running. I felt so good about my weight loss, my improved nutrition, and the cause I was running for (Miles 2 End Prostate Cancer). I felt confident that I would shatter my previous half marathon time and at least finish in less than three hours. I was well on target to do that until around mile 5 when my heart rate started going a little nuts. I kept running, thinking I could run through it. When it refused to settle down, I started walking. I kept moving forward, and turned around at the half way point of the out and back race. I decided to try running again, remembering the cardiologist asking me “does it just feel like your heart is racing or do you feel loss of power, like you’re going to pass out, etc.?” Since it had “just” felt like my heart was racing, I decided to run again. That’s when it felt “not right” (I know, not a medical term but ….). I spent the last six miles of the race run-walking. The good news about the run/walk approach is that my HR stayed down. The bad news it took longer to finish the Boston Mini-Marathon than it had taken to finish the Boston 13.1 in September 2012, when I was definitely in relatively inferior shape.

Between the Boston Mini Marathon and Thursday’s Turkey Trot, my training runs have been solid (no HR issues) and I had one of my best 5K times ever (sub 34:00) at the Vet Fest on November 11.

The Turkey Trot day dawned perfect from a weather perspective. I felt great (again). Well trained, nutrition dialed in, happy to be running the last race of my 40s with 6000+ of my favorite people.

When my HR spiked at around that 5.5 mile mark, I didn’t bargain with myself as long as I had at the Boston Mini. I stopped to walk (very disappointed but knowing intuitively that it was the best decision). Again, this was more than “feeling a racing sensation.” It wasn’t right.

When I saw my friend Gabrielle close to the finish line, she was so encouraging. I don’t know why I felt compelled to explain (except that I am me, and that is what I do), so I told her I was having HR issues. I did run through over the actual finish mat, and since my friend Adrea was finishing the 15K at the same time, had a chance to hug a friend and celebrate a bit.

THEN I texted my coach, and eventually I just called her because I couldn’t drive home to all the people dying to move on to Thanksgiving dinner and explain my complex feelings via text.

It was during that talk that I first floated the “maybe I need to move to a run-walk for the longer distances idea.”

The important point here is that although I have zero, none, nada issues with run walking, I have always said “it is not for me” (which is why my friends who saw me walking at Boston knew there was an issue). I love the feeling of continuous motion; I love the feeling of speed (even though I know I am a slow runner). Once I move to run/walk there’s one more piece of technology getting between me and my mental bliss.

(I am also hesitant to limit myself to running only when I can find others with whom to run. I love running with others but also love running alone; it’s the most peaceful part of my day.)

The morning I ran the Run for Andy Nichols 5K in Blountstown, October 11, I went into my DailyMile and revised my goal of running a sub 30 5K to something less specific:

dailymile

I know the likelihood of meeting the sub 30 goal is unlikely at this point. I also want to preserve my ability to run longer distances. Since these HR issues don’t seem to occur (yet) at the 5K distance, perhaps there is a middle ground for me in racing 5Ks and participating in 10s and halfs by run walking.

I have chidlren to raise and a second half century of life that just started; I don’t want to jeopardize it all just by being stubborn.

The Medical Part

It bears mentioning that I have done this drill before (in 2005). I was not actively running at the time, and after several EKGs and a nuclear stress test, I was told to drink less caffeine and given a clean bill of health. This time, the cardiologist has given me the same mini-cardiac lecture both times I visited him. He describes the heart’s anatomy and the little electrical bundle that coordinates the entire process. Ultimately, after three EKGs and an echocardiogram all were normal, he said I could wear a holter monitor for 24 hours but it’s really hard to wear a holter monitor and run (because the leads would get sweaty and fail to adhere). The other option is implanting a device that can track HR, and that invasiveness seems illogical in my situation. To his credit, he did refrain from suggesting I stop running until the very end of each conversation, and the gist of that part was, “if it only happens when you are running, you need to consider modifying your activity choices.”

I have asked myself if I am fretting for all the wrong reasons. With a congenital heart arrhythmia on Wayne’s side of the family that has led to the death of one member and life-changing modifications for many members, there’s been more than the usual chit chat about heart issues over the years and I always had the “luxury” of worrying about my kids but not myself (since they shared genetics with the affected person and I didn’t). My friend Lisa, one of the best athletes I know, had a massive heart attack while on a run and was saved because an RN was there. Another friend of a friend collapsed and died in the middle of a day on a regular training run.

I don’t know what the outcome of all this will be. I am going to focus on these four things and pray I’ve chosen the right four:

1) Continuing to work with Coach Kristie of KR Endurance to be the best (and healthiest) runner I can be

2) Knowing that each race is “mine” and no one else’s; I have only myself with whom to compete

3) Supporting causes I love through my activity, especially Charity Miles

4) Being grateful for all that running (and, ahem/sigh/okay I will say it) and run-walking has brought to my life and will continue to bring to my life.

Those four things deserve a big thumbs-up, in my opinion!

Photo Credit: Fred Deckert

Photo Credit: Fred Deckert

 

Wife of one, Mom of two, Friend of many.