Paul's Heart

A Question Of “When”

Of all dates that I recognize, or “anniversarize,” this is likely my most difficult and traumatic, even more so than my original diagnosis of Hodgkin’s Lymphoma back in 1988. At the age of 22, being told I had cancer, has only left me with a surreal feeling, having survived cancer more than thirty-five years, should be filled with many anniversaries and milestones. Not once did I ever allow myself to think of anything other than reaching, and remaining in remission, for the rest of my life.

That all changed in April of 2008, when by chance, I got annoyed with a pain/chest tightness I experienced multiple times a day, for at least four months, and finally reached out to my family doctor. On a hunch, she ordered a “nuclear stress test,” not looking for anything in particular, definitely not what would eventually be discovered. Part way into that test, the testing was stopped as “something” became apparently concerning. Thirty-six hours later, at the age of 42, I was on an operating table having emergency bypass surgery. I was expected to have a triple bypass, but in the end, only had two completed. As my original angiogram above shows, I had what was diagnosed as blockage of the left anterior descending artery (LAD), less nerdy known as a “widow maker.” While I may likely have to explain the physiology of the LAD, you get the idea without explaination, what a “widow maker” references.

That phone call that I made, prevented what could have easily ended up being a fatal heart attack. My doctor making the arrangement for the test instead of me, likely saved weeks or months in delays to be scheduled as most have experienced trying to get something health related scheduled. But it was the comment by my newest doctor, a cardiologist, that jarred me the most I have ever experienced and to this day, triggers my PTSD, even more so that my experiences with cancer. “It wasn’t a question ‘if’ you were going to die, but ‘when’.” At 42 years old, I was slapped in the face with my mortality.

Unlike when I went through my treatments for Hodgkin’s, I did that for me, surviving this episode with my heart, I needed to get through this for someone other than me, two someones.

When I left the house that morning of the test, I said “I love you” and goodbye to my daughters as they were off to daycare and kindergarten. I would see them at the end of the day after school. That never happened. I did not get that chance, because everything was put into hyper motion to get me set for emergency heart surgery the next morning. I was devastated thinking I would never get to see my daughters ever again. I was actually facing my mortality, though for the second time, with the risks involved, that mortality was more imminent this time. At that time, my daughters already had friends who had lost their father, and to cardiac disease. The cause of my heart problem was not the typical cause, but rather late developing side effects from my cancer treatments. That changed nothing in regard to the fact, my daughters could very well lose their Dad. And it broke me that I could not hold them one last time before the surgery and tell them that I loved them. And that seemed to drive me all the more, that I needed to get through this surgery.

The story is a bit more complicated than I can put in one blog post, or what I really want to make this post about. But as you can see, the story has ended happily, not without other twists and turns with my health and other issues. But my daughters still have their Dad, and I still have them, seventeen years later, both now in college, and I have gotten to witness that.

My daughters were too young at the time to understand what was happening back in that time. And conversations were kept to age appropriate information, even when they had been brought into the hospital four days following my surgery, I still hooked up to machines, with tubes coming out of me, it was a necessary reunion to let them know “Daddy was going to be fine.” And for me, I had something inside me that pulled me through this crisis that I did not know that I had. My daughters and my love for them is what got me through this.

Every day, I make sure that my daughters know what they mean to me and they remind me what I mean to them, a bond between this girl dad and his daughters, never to be broken. My daughters believe that I can get through anything, that I am their protector, there for them at any moment of need, and do all I can to prepare them for the world. And as they reads this, I hope they know that from the days they were placed in my arms, they gave me purpose, a reason for living, unconditional, stronger than I could ever know existed.

I do not take for granted all of the extra time that I have gotten with them, the bedtimes, birthday parties, special school dances, and of course graduations, and these are all memories that they are able to have. And as they begin their adulthood, I have more time to be their example of how they deserve to be treated, what love, safety, and respect look like, and how important that needs to be to them.

As hard as this day is for me, I need to write this post annually, just as a reminder, my life did not end with that surgery, it continued. And it is my hope that I get to celebrate more of these years. It is not easy, as I do have other health issues related to my Hodgkin’s survival, but for now, they are all managed and dealt with as needed. And my daughters are now old enough, and there with me every step of the way. And that gives me a whole other level of strength and fight, not just for me, but for them.

Heart Awareness

February is American Heart Health Awareness month. And if you have followed my blog for any length of time, you know that I have a particular interest in this awareness. It is ironic how long I have actually been involved with cardiac awareness and advocacy, even back when I was not aware who I might end up doing it for.

The picture in the lower left corner is me, as a high school senior in November of 1982. Our school was holding its annual American Heart Association fundraiser, a jump-rope-athon, which was to comprise of teams to jump rope for a period of three hours to raise money for the AHA. The event was to be held toward the end of the school day, until one parent, that was ONE PARENT complained to the school administration being held during school hours, who then also raised concerns, leading to the cancelling of the event. That is, until I approached the organizer, and told her that I was willing to stay after school hours to complete the event on my own. I had already raised money, and I felt I needed to complete the task. I did not have any team at this point, so when cleared by the nurse, I jumped rope for three hours straight, raising money for the American Heart Association. It was a good thing I had a couple days after to recover because my legs were not happy with me the next day.

Cardiac disease does run in my family. I am at least aware of that. And it hit pretty hard one day, when my father was at work, where he had a very physcial job, and was dealing with a client, who happened to be a paramedic, at the right place, at the right time. My dad was complaining at that moment of really bad indigestion, really bad, painful. The paramedic had my dad sit, and realized he was witnessing a heart attack and immediately took action. That quick response likely saved my father’s life, which responded in a couple of stents being placed in arteries once at the hospital. More importantly, it gave my dad more time, time that he would eventually get to see that momentous time, when I myself would become a dad, twice, with his granddaughters.

I was shocked to hear that his main symptom was “indigestion.” All I had heard previously was the excrutiating pain. It was not a surprise that he could have had a heart attack between his life-long smoking habit, love of fatty and fried foods, and high stress lifestyle. But I would soon learn, there was much to realize when it came to symptoms of a heart attack, a lot of symptoms, and even some different between men and women.

Sure, a common symptom is the chest pain or tightness, a real hard pressure, or perhaps a pain radiating in the left arm. You could have pain elsewhere like in the jaw, neck or abdomen. Nausea and indigestion are also warning experienced by some having a heart attack. Sweating and dizziness can also be symptoms.

Men and women can experience any of the above symptoms of a heart attack. It seems though that there is a difference between how each handles the situation when it happens. Women are more likely to attribute these symptoms to other possible causes such fatigue, arthritis, diabetes, where men are more likely to try to just push through it, much as I did as I discussed in my story “CABG – Not Just A Green Leafy Vegetable”, the link at the top of this page.

Of course my story with heart disease is a bit more complicated and uncommon as my situation was caused by my cancer treatments for Hodgkin’s Lymphoma thirty-six years ago, resulting in a double bypass for a “widow maker” blockage in April of 2008, I was forty-two years old. And that brings me to the next part of this post.

Yesterday was Heart Valve Disease Awareness Day. It was over three years ago, that I had my third heart surgery, to replace my damaged aortic valve via TAVR (transcatheter aortic valve replacement), which as you can guess, the repair was done through my leg to my heart. While this is now a fairly common procedure with a much faster recovery time than going the old open heart, ten years ago, because of my Hodgkin’s treatment history, I would not have been an option for this.

This is a replica, actual size, of my current aortic valve. And the really cool part about this, if this needs to be replace, it is large enough, to allow a smaller one to be “dropped” inside of my current valve. Fascinating, nerdy, amazing.

Heart awareness is just that, making sure that you are aware of when things do not feel right, or you see or hear someone not feeling right. I can count, now using both hands, how many times I have picked out friends and fellow long term survivors, who ended up having a similar “widow maker” condition as me, demanding that they go to the emergency room right away, as time could make a difference. As my cardiologist told me with my original situation, “it was not a question if you were going to die, but when. And that fact that it took you four months of having symptoms to do anything about it, you are the luckiest SOB on this planet.”

I get it, no one wants to go to the Emergency Room and feel embarrassed. But the truth is, better to be told that you are okay by the doctors, or to be at the right place at the right time, getting the necessary medical treatment STAT (that’s medical lingo for NOW!).

My daughters almost lost me in 2008, they are more than aware of that. And I have lived each day after that for them. They have friends that have lost their fathers, two due to heart disease. The last thing I would ever want is for them to experience that heartache and loss themselves. And I have gotten to experience so much more in these last sixteen-plus years, and hopefully more to come.