50/50 Doctors, Angels, Demons, and an Exploded Reality

When was your reality exploded? Whether you were diagnosed with an aortic aneurysm, had a dissection, heart attack, or someone close to you was: Do you remember when the world metaphorically closed in on you and faded to black?

How was the doctor who diagnosed you, and the ones that you dealt with during those dark days that followed? Were you treated with kindness? Respect? Tolerance? Or were they blunt, condescending, and detached? Have you ever seen the movie 50/50? It's about a cancer patient diagnosed with a malignant tumor. The scene where the man is diagnosed is a perfect example of an apathetic doctor, and throughout the movie most of his interactions with medical personnel are poor. In spite of this it ended up being a great movie, and it brought me back to my own moment of "exploded reality".....back to that moment when I was told I had an aortic aneurysm..........when voices went muffled.......when the world stopped and shrunk to only what was going on in my head. The days that followed were dark and tumultuous. There were Angels and Demons. 

In the movie 50/50 one of the man's Demons is his live in girlfriend who cheats on him and ditches him right in the middle of his chemo treatments. She leaves him heartbroken and alone. His Angel ends up being his buddy who distracts him, forces him to get out, makes him laugh, and sticks by his side. 

I was fortunate to have doctors that were not only leaders in their field, but who exuded genuine compassion and concern. They turned out to be incredible individuals, one of whom became a close friend. During my journey there were a few Demons; a best friend who wasn't there for me, financial stress, and a complication in recovery, but my Angel(my wife Nicole) helped me heal and gain strength. She gave me a hard time when I needed it, managed my medical care, made me laugh, kept me busy, nursed me during recovery; and most importantly she tried to keep things as normal as possible around me when I felt like I was crumbling inside.

"...life is 10% what happens to me and 90% of how I react to it. And so it is with you..." -Charles R. Swindoll

      “The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our Attitudes.” -Charles R. Swindoll

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I was having breakfast with my 8 year old Sunday and a moment of gratitude hit me. It was one of those moments as a parent that you see the fruits of your investment in your children. Her birthday falls right at the cusp of the school year, hence she is the youngest in her class. A few years ago we had the option of starting her in kindergarten when she was eligible, or waiting a year. My wife and I decided wholeheartedly to start her right away instead of waiting. We felt she was bright enough and mature enough. Fast forward a few years and now she just turned 8 and is in third grade. She is in the gifted and talented program for the district, and plays travel soccer for an elite academy team.

 Milan and I at the Father/Daughter dance.

In spite of all the achievements I started asking myself lately; what would it be like if we had waited? Besides her being so bright and us being giddy about starting her earlier rather than later, why did we do it?.........she's doing well, but what if we had waited a year? wouldn't she have had an advantage academically being the oldest rather than the youngest? had we done a disservice by starting her when we did? had we made it harder for her? wouldn't she have had an easier time in soccer being a little bigger if we had waited a year?  -- I asked my wife her thoughts and she immediately reassured me that we had made the right decision starting her the first year she was eligible for kindergarten. I appreciated her reassurance, but my questions were not put to rest until this random breakfast encounter happened with my daughter.

I was eating breakfast at the kitchen table with my two boys (1 and 4), when my daughter Milan came waltzing in, sleepy eyed and in her pajamas.

"Good morning Angel"
She walked over and put her arms around me and leaned her head on me.
"What do you want for breakfast", I asked.
"Waffles"
I pulled out the waffles and popped them into the toaster. By now my two boys had finished eating and had left the table. They were wrestling on the floor in the living room.
"Milan, you're in third grade right?"
She looked at me the way she does when I sometimes confuse her age.
"Uh, yeah Dad."
"What if you were in second?"
"What do you mean?", she asked.
"Well, what I mean is what if you were in second grade? Mommy and I started you in school as soon as we could. What if we had waited a year and you were in second grade now? Wouldn't it be better?"
"No Dad, what do you mean? There wouldn't be any competition."

I looked at her and just stared, and then the corners of my mouth turned up. I don't think I'll ever question that decision again. As a parent, it was one of the most rewarding feelings I've had. I guess whatever we're doing in how we handle life's stresses, challenges, and obstacles; our children are absorbing the right message. Whether it's the 4 hour commute I do everyday to my office, my wife's dedication at home, or how I handled my open heart surgery. Attitude is everything, and the quote at the top of this page says it perfectly. If you're going through something challenging keep a positive attitude. You will feel better, and it will be contagious to the people around you, especially children.

"...I learned that you never truly know how deeply you love someone until you are faced with the reality of possibly losing them..." -Erika Velez

"I came across your blog doing research before my dad's surgery.  Not only was it informative, it was inspiring....I shared your story with my Dad before his surgery and I know he found it inspiring.  I know because one of the very first days he felt barely "human" again, he said, and I quote..."I may be ready to run the NYC marathon." :)  He uses that line here and there when speaking to people and doctors and while he is so very far from it, every time he says it, it makes my heart smile because I know something I shared with him inspired him and gave him hope.  Thanks to you. Thank you Benjamin.  May God bless you always."

On Monday evening November 21st  2011 I learned that my Father had something called an Aortic Aneurism most likely caused by a murmur.  A murmur is a leaky valve that caused his heart to pump almost twice the volume of blood it was supposed to.  This caused the Aorta, the heart’s main artery, to dilate or stretch out to the point where it was in danger of tearing.  Had this happened, my Father would have died.  I learned that this is what the late John Ritter died of.  As did my dear friend Tony, may he rest in peace.  I learned that this condition is usually without symptom and by the time symptoms present themselves, it is too late.  I learned that we were Very Lucky to find this, had we not, my Dad would have been gone within the next 1-2 years.

What I learned next was the following-

I learned that six hours can feel like six hundred years
I learned what it feels like to have Nothing else to hold onto other than faith, prayer, more prayers, and everybody else’s prayers
I learned that the heart and the lungs can be stopped and a body kept alive
I learned that the human body’s temperature can be brought down to 90 degrees
I learned that the entire body’s blood content can be put on bypass and filtered through a man-made machine
I learned what very critical condition is
I learned that Life is so very fragile
I learned that a machine could beat your heart and breathe for you
I learned what that actually looks like, unfortunately
I learned that I do have the ability to not pass out when I convince myself to accept a reality - and that I do not have the ability not to pass out when the reality is too much for me to bare
I learned what a CSICU looks like
I learned what a person looks like with tubes coming out of everywhere
I learned what it is to truly Love someone
I learned that I am not the reason my mother lives and breathes, her husband is
I learned that my father can not exist without my mother and vice a versa
I learned that love is not romance.  Love is cleaning, wiping, bathing, flossing, brushing and feeding someone when they can not do it for themselves
I learned that being able to do all of the above is a blessing and not something to be taken for granted
I learned that it is a privilege and an honor to watch the two people who gave me life, love each other in this way
I learned that God works through people – Surgeons, Doctors, Nurses, Scientists, medical Engineers
I learned that a stroke is a risk of open heart surgery
I learned that my daughters are Special little people not just because they are mine
I learned that Isabella is an incredibly brave and compassionate little girl and that she loves her Abuelo endlessly
I learned that Ariana is more patient than I ever thought possible spending entire days in a hospital lounge
I learned despair
I learned what if feels like to cry so hard that it brings you to your knees
I learned what a woman looks like moments after losing her husband of 42 years
I learned what it is to feel destroyed on the inside and blessed at the same time because my mother did not lose her husband 
I learned that you never truly know how deeply you love someone until you are faced with the reality of possibly losing them
I learned how blessed I am for that fact that whenever my Father’s or my time is up on this Earth I will have already said all the things I ever wanted to say to him – many of us never have that opportunity
I learned that people’s imperfections do not make them imperfect
I learned that I am capable of forgiveness
I learned how terrifying and depleting it is to travel to Hell and back
I learned what it feels like to have a nightmare while you are Not sleeping
I learned that people mean as they Do, and not as they say
I learned that if you really want to help, you just do it, you don’t ask if or how you should
I learned what an integral part of my husband and I, my parents are
I learned what it feels like for us to be lonely
I learned what it’s like to not have a Christmas or New Year’s
I learned how heart breaking it feels for my children not to have a merry Christmas or a happy New Year’s at a time when in fact, they deserved it the Most
I learned what it’s like to have a birthday and not a Happy Birthday
I learned that the ICU, hospital, and rehabilitation center are no place to be on any of the above occasions
I learned what it is to meet a real life Angel in the form of an ICU Nurse
I learned that nine days in the ICU is an eternity
I learned that there are so many people in this world that love and care about my dad and they crawled out of the woodwork to show it
I learned that some bonds between people are forever no matter how much life gets in the way
I learned that the grandest expression of thoughtfulness can come in the form of  “buñelos and natilla” in a paper bag, on Christmas Eve, in a hospital room
I learned that another person’s prayer for someone you love is a Gift
I learned that the man I married loves my father like his own
I learned this same man loves me more than I thought possible
I learned what circulatory arrest is
I learned what a gas embolism is
I learned what my father looks like when he can’t see, or move, or talk
I learned how difficult and exhausting it is to learn to move, and start to see and talk again
I learned what post operative psychosis is
I learned what my dad looks like when he is scared and lost
I learned that taking care of your body and getting regular check ups is important

I learned so many valuable things, and so many things that I never wanted to learn

But the most important thing of all, that I learned - is that you never know how truly strong you are until it is absolutely the Only choice you have.
I learned that I’m pretty f'ing Strong and that because of this, I am forever changed.

As you can imagine, my scars from this experience are still very raw and in the early stages of healing.  Writing this, was therapeutic and for that I am grateful.  A lot of the “things I learned” are incredibly intimate and personal.  But sharing these thoughts is important to me because I believe there are many important lessons to be learned from this experience.  I feel comforted by that fact that if just one lesson is learned, what my family has gone through is not in vain.

Erika M. Velez
My dad is 68yrs Old
Dr. Jock Nash McCullough saved him

Visit Erika's Blog
http://www.mydadsmendedheart.blogspot.com

Calling all Heartosauruses!

We've officially added a new "Forum" which I hope you'll take advantage of to share your experiences, lean on for support, gain new insight, and meet new Heart Friends. Everyone who registers and makes a post before Valentine's day will be entered into a drawing for a signed copy of Barefoot in November.

"...my wife was crying, I still did not understand, I was like a deer in the head lights, stunned..." -Doug Mackenzie, Ironman

"Great Web Site! I wish I would have known about this site prior to my experience."

In 2005 my wife and I were in Las Vegas for a business conference, a couple of weeks prior to leaving I had booked a CT scan for both of us in Las Vegas at a radiology clinic, just as a preventative check. We are both in the mid to upper 40’s and I thought it is a good time to get checked out. We live in Canada and getting a CT scan is not a choice, it has to be booked through a physician.
We had asked the radiologist if he would go through our scans with us, my wife is a nurse and has a good understanding of the medical terminology. The radiologist went through my scan on his computer and we were discussing the pro’s and con’s of getting these scan as a preventative measure, he moved up through my core area to my chest and zoomed in on the heart for a closer look. I noticed a concerned look on his face and some medical terms come out, I did not understand, my wife did she also looked concerned. As he took actual measurements across my ascending aorta his concern got greater and my wife was crying, I still did not understand, I was like a deer in the head lights, stunned that something was wrong especially in the heart area, a 5.2cm ascending aortic aneurysm.
"The reason I was stunned is my life style, I have been involved in sport my whole life, hockey, football, 12 years of rugby and for the last 20 years doing marathons and triathlons. I had completed over 20 marathons and at that time 11 Ironman triathlons, how could something be wrong with my heart!" This rocked my world, I thought that was it, no more sport, but it is so much a part of who I am, how will I change.
For me this was another challenge, I was not going to let this change me, it may slow me down for a while, I had a new hurdle in front of me and that is ok, these things define you.
We flew home and started getting educated, of course the Internet is the first place you go, lots of information, some good some bad, it is reality. We were referred to a local cardiothoracic surgeon Dr. J. Tsang, we had copies of my Las Vegas scan and he also requested another scan to confirm. He did confirm the aneurysm and the size, now the discussions start as to how to deal with this. We were very fortunate that Dr. Tsang is a great communicator and my wife understood the terminology, it was very important to have a second person at those meeting, being the patient you miss a lot. He felt that due to the size being just under recommended surgical size (5.5cm) and we had no history to know how rapid the aneurysm would evolve we would wait and monitor every 6 months to see if there was change and he put me on a beta blocker to govern my blood pressure, it was not high, just a precaution, I was in perfect health other then the aneurysm.
I was ok with that, my question was how much activity can I do, I was booked into a half Ironman in 3 months and a full Ironman in 6 months? He was very hesitant to give me an answer, he knew how important it was to me, he did say I could do activity that would not build up my blood pressure. To me I heard I can do Ironman slowly, my wife did not hear that and off we went. We both knew I had a very serious weakness of tissue in my aortic wall and I have to be careful. I continued to train, very easily, no weights, no hills, swim, bike and run easy.
We had discussed the surgery option and that my valve which was also dilated would have to be replaced, my valve was a tricuspid so that was good, he said it would still require replacing. I did not like that answer so I started researching and found that there was a AAA repair and a valve sparing technique called the “David Method”. I was determined to not have that valve replaced unless totally required. I contacted Dr. T.E. David, the surgeon that this technique was named, he is a Canadian and works out of the Toronto General Hospital. I did get a reply that he would look at my case, he review my file and confirmed the diagnosis, he also stated that I was a good candidate for the valve sparing technique. He was ok with my wait and watch approach, I would continue to be monitored at home and when we decided to proceed with surgery to contact his office.
I continued to train easily, I did complete the half Ironman and also the full Ironman that year, continued to get my CT scans, no change. I completed 2 more Ironman’s and many other events over the next 2 years, but there was always this burden of worry. In 2006 a close friend passed away from a heart issue at the age of 40, my wife and I both decided enough was enough get this repaired. It is a hard decision to volunteer for open heart surgery, the alternative is not an option. We book the surgery for October 2007 with Dr. T.E. David, I had just completed 2007 Ironman Canada in August and now open heart surgery on Oct.
The whole surgery experience was better than I had hoped, surgery went well and recovery went well I got to keep my valve. I could not exercise for 3 month, just go for walks, so I would head out for 2 or 3 hour walks. Exactly 3 months to the day I was on the treadmill trying to run, I had to start from scratch but I was determined. I completed a 35km cross country ski race 45 days post 3 months and in August 2008 I completed Ironman Canada again for the 15th time and I am off all medications. I did not miss a year, it may seem ridiculous to some but for me I wanted to get myself back to who I was again. I continue to make sport a big part of my life, I appreciate it a lot more and I am still cautious. I have completed a total of 18 Ironman triathlons now my best time when I was 40 years old was 10:55 and I have finished in 11:26 at age 53 post aneurysm repair. I now get an Echocardiogram every year and meet with a cardiologist to review, so far so good.
I am a strong believer in getting scanned, we had no family history, my dad will be 90 this year, my mom is 81 and both active, I am 5’10” tall, no Marfan Syndrome or any other reason I would have this tissue disorder and "I had no symptoms, just got lucky on a CT scan."
Saved my life! I hope this story helps inspire someone that there is light at the end of the long journey, this is a repairable disorder and life will continue, you will appreciate it a lot more now.

Thank-you,

Doug Mackenzie
Regina, Saskatchewan, Canada
doug.mackenzie@mackenzieplumbing.com