{"id":253,"date":"2025-05-06T01:03:26","date_gmt":"2025-05-06T01:03:26","guid":{"rendered":"https:\/\/cota.org\/cotaforteamham\/?p=253"},"modified":"2025-05-07T12:49:57","modified_gmt":"2025-05-07T12:49:57","slug":"q-a-with-eli","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforteamham\/2025\/05\/06\/q-a-with-eli\/","title":{"rendered":"Q & A with Eli"},"content":{"rendered":"\n
\"\"<\/figure>\n\n\n\n

Q: What are your first memories of the impact of being diagnosed with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)?<\/h4>\n\n\n\n

I remember realizing \u201cI can\u2019t do \u2018the things\u2019, my passions.\u201d I was pulled out of sports when I was diagnosed (age 9)<\/em>, and I was no longer allowed to play baseball, soccer, or wrestling. \u201cI felt left out.\u201d I always wanted to play football, basketball, and track.<\/em><\/p>\n\n\n\n

Q: What activities have you been involved in since you were unable to play sports?<\/h4>\n\n\n\n

I played the drums, golf, and pick-up basketball. I was able to start working early (age 14) and I got into weight lifting (with modifications), reselling shoes and streetwear, and learned about financial investing.<\/em><\/p>\n\n\n\n

Q: What do you wish others knew?<\/h4>\n\n\n\n

\u201cI wish it was clear how hard I work through it.\u201d<\/em><\/p>\n\n\n\n

Q: Can you share more about living with your cardiac condition and working through it?<\/h4>\n\n\n\n
\n
\n
\n

I can\u2019t physically keep up with my friends when doing ordinary physical activities, like pick-up basketball, o<\/em>r casual sports\/cardiac activities.<\/em><\/p>\n\n\n\n

I have a fear of needing a shock from my ICD to get my heart back in rhythm. I literally can\u2019t run from danger. I don\u2019t know if I will get caught by whatever the danger is or have a major heart issue trying to run away<\/em>.<\/p>\n\n\n\n

I take daily medications, check my weight and blood pressure to monitor heart failure. I often experience lightheadedness and weakness. I need extra rest\/sleep. I drink a lot of water and think about things I can do to take good care of my heart.<\/em><\/p>\n<\/div>\n<\/div>\n\n\n\n

\u201cDoing the math in my head kind of sucks.\u201d Calculating the average lifespan of a new heart (15 years) and guessing how long I have on this heart is often on my mind.<\/strong><\/em><\/p>\n\n\n\n

It\u2019s hard to plan the future knowing a call can come any time with an immediate surgery followed by a one-year-ish recovery.<\/em><\/p>\n\n\n\n

Q: If a donor heart becomes available to you, what are your post-transplant worries?<\/h4>\n\n\n\n

I worry about getting sick and even dying from common illnesses that can be deadly to a transplant recipient.<\/em> I also<\/em> worry about keeping up with all the medications and staying on the strict schedule that is required to keep the new heart healthy.<\/em><\/p>\n\n\n\n

I worry that I can\u2019t eat sushi post-transplant due to potential food poisoning. But eventually I think I\u2019ll be able to eat it again. <\/em>\ud83d\ude0a<\/p>\n\n\n\n

I worry about relationships: will people move on in their lives without me when I have to pause for a transplant?<\/em> It\u2019s also hard to know when and how much to share about my heart condition with others. I fear passing the heart condition (and\/or cleft) on to my children and think adoption may be a good option.<\/em><\/p>\n\n\n\n

Q: What are you looking forward to after your transplant and recovery?<\/h4>\n\n\n\n

Running! I want to do a triathlon with my mom. I want to play pickup basketball again and do typical activities with my friends. I want to travel and just live life!<\/em><\/p>\n\n\n\n

Q: You experience another significant medical condition. Can you tell us about that?<\/h4>\n\n\n\n

I was born with a cleft lip and palate and I\u2019ve had 15+ surgeries on my face. I\u2019ve had to relearn how to talk many times due to the frequent changes in my mouth\/face structure. This led to <\/em>“feelings of alienation”<\/em> as a child. Although I was able to navigate those better as I got into middle and high school. I continue to need craniofacial repair and am likely to have additional surgeries in the future.<\/em><\/p>\n\n\n\n

\u201cA question I used to always ask myself was: Would I rather have a heart condition or cleft?\u201d I stopped asking myself that because it doesn\u2019t change that I have both and comparing them doesn\u2019t help. Now I know \u201cthere\u2019s no Eli without these conditions.\u201d<\/em><\/strong><\/p>\n\n\n\n

Q: You, your sister, and your brother have ARVC<\/a>: Kenny, who died from the effects of ARVC at age 14, and Kya, who is now 21. Can you talk about what it’s like to be one of three siblings with the same heart condition?<\/h4>\n<\/div>\n\n\n\n

I worry more. I worry about my sister and it\u2019s hard not to compare our symptoms.<\/em><\/p>\n\n\n\n

I have a feeling of being the \u201clast hope\u201d. I worry that my parents who already lost their son, will also \u201close their daughter and me, and they\u2019ll be back at square one. This is the main driver that keeps me going and not giving up.\u201d<\/em><\/strong><\/p>\n\n\n\n

\u201cI wouldn\u2019t be here without them [my parents]\u201d. They fight for appointments and medical care, and work hard to make sure I have what I need.<\/em>  <\/em> <\/p>\n\n\n\n

Q: What helps you with all of these worries?<\/h4>\n\n\n\n

\u201cGod. Leaning into him and remembering he\u2019s all I need in life and that he has a plan for me.\u201d<\/em><\/p>\n\n\n\n

Q: How does COTA help with this journey?<\/h4>\n\n\n\n

The expense of everything is overwhelming. It helps our family and other families like ours pay for life-saving medical treatment.<\/em><\/p>\n\n\n\n

Q: What do you want people to remember from this interview?<\/h4>\n\n\n\n

I would call these \u201cthe takeaways.<\/em>..\u201d <\/em><\/p>\n\n\n\n

I hope people better understand how my life is different: Consider the everyday life stressors, then add waiting for your phone to ring to go have a heart transplant, and dealing with the symptoms of heart failure.<\/em><\/p>\n\n\n\n

\u201cAll failures are mental until death.\u201d This means that nothing is permanent, except death. \u2018Failures\u2019 are temporary, and you can come back from anything.<\/em><\/p>\n\n\n\n

I love my life and am very grateful. There isn\u2019t one day I don\u2019t feel blessed by God. God is good.<\/em><\/strong><\/p>\n\n\n\n

A note from Mom<\/h2>\n\n\n\n

That part about being the \u201clast hope\u201d really got me. Eli has tremendous insight into his parents’ fears and worries. He carries them more closely than we imagined, more closely than we want him to. The weight of it is unfathomable. Eli’s faith and the cumulative strength of our family, friends, and global community of support are crucial. We appreciate each of you so much. <\/p>\n\n\n\n

We are in a relatively quiet period of medical treatment. While we have several medical appointments, they are largely related to our \u2018normal\u2019 and we are grateful for this quiet time.<\/p>\n\n\n\n

We continue to think about long-term cardiac and transplant care expenses. It\u2019s easy to become overwhelmed thinking about the future, but the support we receive from COTA is tremendously helpful. For example, the current cardiac medications for both Kya and Eli cost an average of $250\/month. Truthfully, it’s a bit uncomfortable to talk about finances and fundraising, but we hope that providing a real example helps illustrate our gratitude and how significant the COTA program is. This is a good time to reiterate that expense requests are processed by COTA to ensure every penny is going to cardiac and transplant-related care for our family and families like ours! They do a great job!<\/p>\n\n\n\n

We continue working toward our fundraising goal. If you are interested in helping in any way, please don\u2019t hesitate to reach out! <\/p>\n\n\n\n

Thank you for supporting COTA in honor of Kya and Eli and all COTA families! <\/strong><\/em><\/p>\n\n\n\n

\"\"<\/figure>\n","protected":false},"excerpt":{"rendered":"

Q: What are your first memories of the impact of being diagnosed with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)? 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