From Nearly Dying to Saving Lives
How to make the best out of the worst situation.
When my brother was 19 he suffered from an undiagnosed, and then misdiagnosed, heart condition which nearly took his life.
This suffering lead to the start of a nonprofit which saves young lives and prevents families from going through what mine went through.
We made a lifesaving lemonade out of some pretty nasty lemons…
First, let me tell you our story.
My brother, Alexander was told he was suffering from panic attacks and anxiety during his freshman year of college after having an episode of extreme pain in his chest and shortness of breath. He got on meds and was trying his best to learn how to live with such crippling panic attacks.
These attacks happened a few more times, the most severe and most notable was on a family hiking trip halfway down the hike to Delicate Arch at Arches National Park in Utah.
At this point, my mom felt uneasy with Alexander’s diagnosis and took him in to see our naturopath. From there we learned the truth.
Alexander was not suffering from panic attacks, as his doctors had told us. He was suffering from heart attacks.
Next thing we know, he is in an ambulance being transferred to yet another hospital. From there it is discovered that he was born with a bicuspid aortic valve, which got infected (queue heart attacks) and he would need a valve replacement.
The doctors could not operate on him because he was too weak and they were afraid he wouldn't survive. They decided to let him wait a few days to gain strength, but in the downtime, they decided to run a few tests on him.
During his first test, we heard a ‘code blue’ and saw people run towards his room. We were unsure of what was happening, but we knew it was not good.
Finally, we are told that he had flatlined. He had died for 90 seconds.
Due to him flatlining they needed to do surgery, we no longer had time to wait. His chance of survival was low, but, somehow, he made it.
He was in a medically induced coma and on machines that were keeping him alive.
Fast forward a week, his heart was not taking to the new valve, given how much scarring it suffered from his heart attacks.
His heart was then taken out of his chest and an artificial heart was put in.
At this point, we knew he needed a heart transplant. But knew so little about transplants, availability, wait time, etc.
I started looking into transplant waiting list times, stories of recipients, stories of those who passed before getting their transplant, and so on. I saw the need for helping explain these misconceptions and getting more people to become donors.
I began to think about starting an organization after Alexander that would help close the gap between the 95 percent of Americans that claim they support organ donation and the 54 percent of Americans that are actually signed up as an organ donor.
Meanwhile, Alexander was brought out of his coma and was working on getting stronger to be placed on the transplant list, as the shorter the amount of time he is on the artificial heart, the better.
The doctors told us between 6 months to 2 years is the timeframe we should be prepared for a heart to become available for him. We were discouraged, to say the least. That is a LONG time to live at such a low quality of life.
However, another miracle happened and they found a heart for Alexander after a mere 8 days on the transplant list.
Incredible.
Alexander made it home after 58 days in the hospital with a new heart beating in his chest.
He had a long way to go and a lifetime of battles but he was home, he was alive, and he was in good spirits.
Though Alexander was alive my family and I were still heartbroken and in shock of what Alexander went through and what we all went through.
I began working towards establishing a nonprofit that would do two things:
- Spread awareness of organ donation
- Provide lifesaving heart screenings for youths
Through heartbreak, a near-death experience, and our family trauma— the nonprofit, Alexander’s Hope was born.
Alexander’s Hope gives Alexander meaning for what he went through and allowed for his horrific situation to give others a second chance at life. His battle has quite literally saved lives.
The heart screening program Alexander’s Hope assists with, screens high school-aged hearts to test for undiagnosed heart conditions. Over 23,000 hearts have been screened, thousands have learned CPR and how to operate an AED and 200 youths have had their undiagnosed heart conditions caught in time to save their lives — they went on to have heart surgery and are alive and healthy today.
Sometimes one person's tragedy can turn into something much bigger. Make lemonade out of lemons, whether it is something as big as a heart transplant or as small as a bad day.
Learn more about Alexander’s Hope and our heart screening program with the Nick of Time Foundation at https://alexandershope.org/
You just read another post from In Fitness And In Health: a health and fitness community dedicated to sharing knowledge, lessons, and suggestions to living happier, healthier lives.
If you’d like to join our newsletter and receive more stories like this one, tap here.
