The Healing Hearts Scholarship

From broken Hearts to healing hearts. The HHS fund provides scholarships to those with Congenital Heart Defects whose ambitions are in the medical field. (function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){ (i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o), m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m) })(window,document,'script','//www.google-analytics.com/analytics.js','ga'); ga('create', 'UA-48767819-1', 'tumblr.com'); ga('send', 'pageview');

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6 months post open heart. 7 months ago I couldn't walk 50 feet without becoming winded and exhausted. Now I'm doing this. Oh and I have a partially paralyzed diaphragm. It feels so good to run.

[healingheartsscholarship]

The flower relies on the passing storm to nourish it before it can blossom we too must face our storms in order to flourish.

Michael Barnes

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Lets Rewind A Bit

I was born and raised in San Diego California and in October of 2011 my family and I decided to take a big leap of faith we packed up all of our belongings and hit the road. I had spent the last year working at a hospital in as an EKG technician and though I loved my job my hours kept dwindling down finally I was down to working just on the weekends. This wasn’t enough to support my family. We were living completely pay check to paycheck and “borrowing” money monthly from my mother. Something needed to change instead of waiting for something to magically happen we decided to leave California and move closer to my wife’s family in Minnesota and start something new and bold.

When we arrived in Minnesota the house we were planning on moving into didn’t work out. It was a dark dusty roach infested house. So we moved in with my in laws until we found something better. Fortunately it didn’t take us long to find an apartment just across the Iowa/ Minnesota border in a town called Okoboji. I rather enjoyed this small town our place was just a block from the famous lake Okoboji being a So Cal beach guy it was nice being close to some water.

By the end of the year I was working at the neighborhood Walmart. Unloading merchandise from semi-trucks and stocking shelves were anything but my dream job the work was physically demanding low paying, and the hours were rough. It paid the bills until my wife could establish her massage business in town. In March of 2012 my wife began her business and was doing well enough for me to quit my job so I could stay home and take care of our year and a half old daughter.

In mid-June we took a camping trip to Decorah Iowa with friends. I kayaked the upper Iowa River which took us about 4 hours and slept in a cabin built by Amish workers. A few days after returning from the trip I came down with a bad cold and the events to follow changed everything about who I thought I was.

Having grown up with congenital heart disease it has never been uncommon for me to occasionally feel some palpitations they would never last very long maybe only a few minutes. But as I sat on my couch watching TV one afternoon they started and didn’t stop. Twelve hours past then 24, 48, 72. It felt as if there was a fish bowl in my chest with a giant catfish trying to get out. My heart was pounding so hard and so fast. Most people would run to the local ER and find out what was going on. But we had no health insurance and having worked in the medical field I was very aware of how expensive a trip to the ER was.

Weeks passed even months passed with no change in fact I was beginning to feel worse. Then one morning in August I woke up dizzy and that was enough to send me to the local hospital and find out what was really going on.

The doctors and nurses ran all the typical tests one does when entering the hospital X ray, blood work, and an EKG. The EKG confirmed I was in atrial flutter a heart arrhythmia similar to the common atrial fibrillation. I was put on a beta blocker to slow my heart rate (my rate was 120) and the blood thinner warfin to prevent blood clots from forming. I was released and appointments were made for more testing and to consult with a cardiologist.

I met with a cardiologist in Sioux City Iowa about an hour and half away from where I was living. An echocardiogram would show that I had a severely leaking pulmonary valve, a moderately leaking mitral valve and moderately leaking tricuspid valve.  It would also show that my right ventricle was enlarged my overall heart function was quite low. The cardiologist, not equipped to handle a case like mine referred me to congenital heart disease specialist at the University of Iowa.

After several phone calls it was agreed that something had to be done about my arrhythmia before addressing any of my other issues. So I met with an electrophysiologist who decided to perform a cardioversion and reset my heart. This involved me being knocked out, shocked and brought back into a normal sinus rhythm. When I awoke from the procedure I felt amazing I was in a normal rate and rhythm for the first time in months. But it was short lived. I continued to have palpations, was very light headed, fatigued, short of breathe, and miserable. After a follow up appointment a few months later the doctor felt I needed another procedure called an electro physiology study and cardiac ablation. This procedure would permanently put an end to the palpitations. Once again I awoke feeling amazing and once again it was short lived. The palpations returned along with the lightheadedness, and general fatigue. At this point it had been almost a year since this all started. Why isn’t anyone talking about my leaking valves? Isn’t surgery a good fix? Why aren’t I being seen by a cardiologist?

I had my ablation follow up appointment in Sioux Falls South Dakota. The nurse met me, took my vitals and asked how I was. I spent a good twenty minutes telling her how horrible I felt. It was just two weeks earlier I passed out in the car, luckily I wasn’t the one driving at the time. I felt my overall health declining. The lightheadedness, shortness of breath, dizziness and fatigue were growingly frustrating I just wanted to feel normal again I desperately wanted my life back, my wife desperately wanted her husband back my daughter needed me. When I met with the doctor all he could say was “well if it gets any worse we can maybe add another medication.” That’s when we decided we were done! We got in the car and my wife called her uncle who happens to be a physician at the mayo clinic in Rochester Minnesota. She explained the situation and my condition. He contacted a pediatric cardiologist and we set up an appointment. Two weeks later we met one of the most humble doctors I have ever seen. A month later after her reviewed all my test results he contacted me and told me that my best option was surgery. Finally a year later there was a light at the end of the dark tunnel, finally the air on top of this mountain wasn’t so thin I couldn’t breathe.

It has now been almost 6 months since my surgery. This life event has taught me many things and I can’t wait to share them all with you in my next few posts on this site.

[healingheartsscholarship]

Just Breathe Normal

My first memories, post-surgery were of sounds. I don’t remember being able to open my eyes if I did it was for a brief second objects and people were a blur. I recall the sound of my wife’s voice “just breathe normal like your breathing thru a straw” and “everything is fine.” My mother stroking my arm telling me “everything is ok”. I remember my nose itched and every time I tried to scratch it I was denied by restraints. Then I tried to find out what time it was. I went into surgery at 9:00am and wanted to know what time it was so I motioned somehow with my right hand that I wanted a pen and paper. I recall trying to write the word “time?” My wife answered with a 1:30am. Wow I thought have I really been out of it for this long? Then I fell back asleep. Unknown to me at the time, it was a rough night they had a hard time getting my bleeding under control. One unit of whole blood and another unit of platelets later it slowed down and the nurses began the process of waking me up. My next memory was the sound of a nurse telling me to take a deep breath and “cough like you have never coughed before.” So I did and was suddenly freed from the tube down my throat.

The next 24 hours are still a little fuzzy perhaps from all the pain meds. But I recall the nurses having me sit up on the edge of the bed and try standing. It’s important to start walking as soon as possible after surgery to prevent blood clots and other nasty things from happening. Rolling over onto my side first and then pushing up with my arms till I was in a sitting position this was not easy my arms were weak and any kind of movement that involved the use of my chest muscles caused quite a bit of discomfort. But I made it and was soon roaming the halls.

Everyday a tube came out. First my urinary catheter, I was most nervous about this tube than any other thing coming out of my body but I have to say looking back I hardly noticed it was there and I have to admit it was nice not having to get up from bed and pee .This was followed by the pic line and one of my many IV’s.

Finally on the eve of my release the three chest tubes were due to come out. I had heard that this could be very painful so I tried to prepare for this by not thinking about it at all. A resident and a nurse came into my room and the first thing they said to me was “The good news is your tubes are coming out, the bad news is its going to hurt.” The nurse presided to tell me “you have to do 4 things while I pull these out and do them in order and if you don’t bad things will happen.” These four things involved a series of deep breathes grunting and bearing down as if I was going to the bathroom. I bore down expecting the worse pain ever but all I felt was a little pressure and that was it. One by one all three were excavated and I was one of the few lucky ones that didn’t find it incredibly painful.

To my surprise I was released on the fourth day, I was exhausted I hadn’t slept in days. It’s almost impossible to get some sleep while you’re in the hospital someone is always waking you up, checking in on you, taking you down stairs for a test, or taking your blood and vitals. Plus I had no appetite the entire time I was in the hospital so I ate very little. Nothing tasted good nothing felt good. I was eager to get home and get caught up on my sleep.

My discharge papers where processed and it was now time to leave. As I got into the car and started to drive off the hospital campus, I noticed something was very different. It was a beautiful fall day the trees were a different shade of green very vibrant the grass stood out I could see clearer, colors looked amazing. The air smelled fresh and clean, and I started to cry. When my wife asked me why I was crying I stated that I didn’t know if I was going to make it out of this place alive. I felt an overwhelming sense of peace, joy and gratitude to all who simply “did their job.” I was ready to start a new life. This was my re birth!

[healingheartsscholarship]

"I want to go barefoot because it’s holy ground; I want to be running because time is short and none of us has as much runway as we think we do; and I want it to be a fight because that’s where we can make a difference. That’s what love does.”

-Bob Goff, Author of Love Does

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I was born November 25 1972. In 1974 I was diagnosed with Congenital Heart Disease. I was born with a Ventricular Septal Defect (hole in the heart) Pulmonary Stenosis, and a Partial Anomalous Pulmonary Venous Connection. At the age of three I had open heart surgery to repair my VSD and repair the obstruction of my pulmonary valve. 

I lived a pretty active life after that I played sports took up guitar. I even went to college and studied to be a cardiovascular technician.

…and then it happened I went into Atrial Flutter, During several doctor visits I found out my pulmonary valve was severely leaking and I was in the beginning stages of right side heart failure. I spent an entire year lying on the couch before I found a doctor that would agree to fix my issues. On September 10th of 2013 I had my pulmonary valve replaced, a maze procedure, and a warden procedure at the Mayo Clinic in Rochester Minnesota.

I did a lot of thinking while on that couch. At times I didn't know if I was going to make it to my daughters 3rd birthday. I barely made it to her 2nd birthday party. I felt a great sense of my life being incomplete. What was the legacy I was leaving my daughter? Have I had a positive impact on someone’s life? I wanted more time, if only I could have a second chance.

So now I have been given a great gift, a gift of a second chance. I often refer to my surgery anniversary as my “rebirth” a fresh start and so I have decided to start a new project I want to give those who have been diagnosed with a congenital heart defect and have an interest in working in the medical field the opportunity to reach their dreams because those with empathy make the best doctors, nurses and technicians. I am setting up a scholarship fund and I am hoping to have your support. Let’s send some great kids with great insight to college.