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Alexander's Heart & Hope

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Written by Lauren Hunsburger

Photography by Inese Westcott

The story begins with Alexander, who at age 19 was enrolled in school at Seattle Pacific University. He started experiencing painful episodes in which his chest would hurt intensely and his breath would shorten while his pulse raced and his arms became numb. After a few different physicians deemed his heart completely normal, they told the family it was a bad case of panic attacks.

    “Throughout the following months, I visited psychiatrists and booked appointments, got medications, got massages, and I even did meditation,” Alexander says. “Nothing, however, seemed to help this sudden formation of ‘anxiety’ I was experiencing.”

    The most intense episode happened when the entire family, including his mom, dad and two sisters, went on an extended hiking trip to Moab. As he was hiking back down from the famed Delicate Arch in Arches National Park, he had to stop suddenly.

    “I was in incredible pain. My legs were giving out and I could hardly walk,” Alexander says. His mother, Jen, did what the doctors told her to do. She encouraged him to take deep breaths and do calming techniques. Park rangers checked his vitals and eventually brought him down on a stretcher. Everyone chalked it up to another panic attack.

    “I knew something wasn’t right, but when you’re given the same information over and over that everything is all right, all you can do is trust it,” Jen says. The family finished the remaining days of the trip, and while Alexander says he didn’t feel great, he continued with them.

     Upon returning home, Jen couldn’t shake the worry, and she took Alexander to her naturopath for a full blood test. At 7:30 a.m. the following morning she got the phone every call every mother dreads. They needed to discuss the results right away.

    “They told me something was really wrong. His liver enzymes were really off and his liver and other organs were huge. They said I needed to take him for imaging immediately,” she explains. “The tests showed he had a bicuspid aortic valve, which I had never been told before, and that he had a really bad aortic heart valve. He had an infection that went to the valve and he needed a replacement—tissue or mechanical.”

    Looking back, Jen says a valve replacement seems very simple in comparison to what actually transpired. Upon closer examination, tests showed Alexander’s heart was only functioning at 30 percent and emergency surgery was needed. As the family was trying to process this information, Alexander flatlined.

    “The doctors warned me he might not make it through the surgery,” Jen says.

    She further explains how the only thing that saved her son was that he was immediately hooked up to an ECMO (extracorporeal membrane oxygenation) machine, which artificially oxygenates and circulates blood through a patient’s body.

    For Alexander, it played out like a nightmare and he had no idea his whole heart was being removed.

    “I was told I needed a heart valve replaced, and I had chosen a pig valve as opposed to a mechanical one. This was a big decision for me. They were taking me to a CAT scan, and my parents said they would see me in an hour,” he says. “Little did I know, I woke up about a week later on an artificial heart, unable to move, and severely hallucinating. It turns out that that last episode [in Moab] was actually a massive heart attack, and that I had an infection in my heart (endocarditis).”

    Some people live on an artificial heart for years. But, thankfully, Alexander cleared the necessary assessments and was placed on the list for a heart transplant.

    “He was on the list for only eight days before a heart became available,” Jen says. “That was a record. They told us it’s never been that fast before.” The transplant was successful.

    Since the transplant, life has been different for Alexander and his family. He takes many medications and is aware that this is not a lasting solution.

    “There is a 100 percent rejection rate; it just depends on when,” Jen explains. But, in the meantime, the whole family is elated that Alexander is getting back to a somewhat normal life and returning to school.

    In fact, his sister Bella, age 22, has since begun the process of starting a nonprofit called Alexander’s Hope, which advocates for organ donation education and awareness.

    “A lot of people think they’re an organ donor and aren’t. Many people don’t know how to do it, or they have misconceptions,” Bella says. “People think if you’re an organ donor [that the doctors] aren’t going to try as hard to save you. That’s just not true.”

    Bella’s plan for Alexander’s Hope includes speaking at schools as well as pushing for possible new legislation in regards to organ donation.

    "Through the creation of Alexander’s Hope, my wish is not only to save lives through educating the public on organ donation, but I also hope for Alexander to know that his survival was not by chance, but that he was meant to survive in order for others to get a second chance at life as well," Bella says.

   Alexander's Hope is still in the beginning stages, with a website planned to go live this summer. Be sure to check out alexadershope.org for more information and updates.

Alexander shares  lessons learned:

Reflections Magazine: What are the most important lessons you learned throughout this process?

Alexander Chaffey: Life is a lot more valuable than some people believe it to be. I have an immense appreciation for life now, as mine was almost taken from me. Also, appreciating the little things in life is important. I didn’t realize just how much I had taken for granted until I was confined to a hospital bed and couldn’t do it anymore. Something as simple as going to the bathroom by myself or taking a shower. You become so dependent.

RM: Do you have any advice for other young people going through a similar medical ordeal?

AC: If you are concerned about something, please get it checked out. I was falsely diagnosed at the beginning and things didn’t work out as intended (I don’t fault the doctors at the ER I originally went to. The analysis just wasn’t comprehensive enough, but they did a marvelous job and are wonderful people). For those who know they must get a transplant beforehand or are going through similar ordeals, remember this: positivity and hope will guide you and make it all the more bearable. As perhaps cliché as it may sound, this is true. People noted how I was so positive and good-spirited about my situation, and that is part of what helped me through it. Don’t be afraid to cry when you need to or to be frustrated on occasion; I definitely had those feelings and let them out. However, dwelling in negativity and self-pity does no one any good; not you, not your family, not your friends, not your nurses, and not your doctors. Positivity and hope for recovery is a powerful force.

 

RM: How does it feel knowing your story inspired your sister to start a nonprofit for education about organ donation?

AC: I feel a bit strange, but in the best way possible. It’s honestly really heartwarming to know that my ordeal sparked the fire in my sister to create an organization that will save lives. I know the struggles of a person waiting for a life-saving donation, and I was lucky to get my transplant so quickly. Others are not so lucky. I know my story and ordeal has inspired many people from the letters I received, the stories my family would tell me, and the vast network of people they told my situation to who prayed and hoped for me. Every now and again, I’ll be in a grocery store or some other place, and I’ll get recognized by someone who had followed my story and had prayed for me. It’s a bit surreal. Bella has always had a passion for non-profit and works hard at everything she does, so I know she’ll excel with Alexander’s Hope and end up saving and educating a lot of people in the process.

 

RM: What are your thoughts about the importance of organ donation and public education?

AC: There is no doubt that education and awareness is extremely important. There are plenty of people who are uneducated or sometimes against organ donation. Organ harvest is only done on the legally dead, and some people I’ve conversed with didn’t know this information. Sure, live donations can be done with kidneys and such, but a heart? No one’s sacrificing themselves to save someone else like that. That’s not how it works. Some people have religious conflictions with organ donation. I can’t speak very much to that, but I struggle with understanding the concept; why would you not want to save someone, or several other people’s lives when you have no further use for your organs?

 

RM: How has this past year shaped your vision of the future?

AC: My own mortality has definitely been put on the table. I know I will need another transplant sometime in the relatively future, which kind of scares me, but it is something I must accept. There’s no denying this, and I’ve been through it once, so I know how to handle it. I plan to continue on with the life that was almost taken from me, thanks to the generosity of my donor. I almost feel an obligation that I need to do something ridiculously spectacular since I’ve been given a second chance at life, but I know that that sort of arbitrary pressure is pointless and not founded on anything. I will continue to live my life the way I want to live it, and I hope to be able to do something with writing or music, or some other passion of mine in the future.

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