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Madeline

@heartoflemonade

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documenting the ever-changing reality of life as an hlhs survivor & heart transplant recipient 🌈💛 | complexity and comfort coexists here

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Being featured by @transplantlifefoundation in their latest magazine issue is such a huge deal and I’m so honored that they reached out to me :’) Up until this summer, I had no idea what it was like to be in a room full of people who understood my life in a way that most people (offline) aren’t able to.

It’s one thing to write and plan about a trip, but it’s another to actually follow through on it. I am incredibly grateful for opportunities like this to step outside my comfort zone, because there is so much waiting on the other side of it 💜 by @heartoflemonade

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25 days ago

Anywhere with a rocking chair and a clear view of the water is my happy place :) taken in Susquehanna River by @heartoflemonade

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2 months ago

You know life is good when you get a Bonus Days Issue in the mail 💚💙

(and huge thank you Alison for featuring my writing in this issue, I am so touched 💜) by @heartoflemonade

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2 months ago

After dealing with some scary complications from my transplant 9 years ago, I worried that my life would be in a constant state of trying to recover. My team told me to be patient but after a year, two years, three years… I still felt overwhelmed from a life that felt 100% medical. The reality though, is that I’m still learning to be present in those into moments that make up the first photo while still accepting that the only reason I’m here for them is because of the moments that make up the second.

Sometimes, my life looks like a lot of medical appointments, disgusting CT oral contrast, & bandaged up wounds. Sometimes, it looks like traveling across the country, drinking an overpriced milkshake, & just taking in the views. Sometimes (and really most of the time) my life looks like all of that within the same week. I know by now that I shouldn’t expect any less and somehow life always surprises me with how beautifully human it ends up feeling.

It doesn’t have to be either/or. Post-transplant life can like the first photo AND can look like the second photo. Perspective matters and I hope that for this disability pride month, people can be reminded that there is no one look. For transplant or any other disability 💜 #disabilitypridemonth by @heartoflemonade

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4 months ago

9 years since I received my new heart :’)

Thank you to my donor’s family who said yes to organ donation and allowed me to still be here today ❤️

Thank you to all the doctors, nurses, PAs, techs, CNAs, housekeepers, and other health care workers for giving me the best care they can 🧡

Thank you to Jess, Joe, Yiayia, Aunt Martha, and others who I was blessed to know in this lifetime and will meet again in the next one 💛

Thank you to my mom, dad, twin sister, and older brother for always supporting me even through the worst storms 💚

Thank you to my friends (far too many to list but you know who you are!) that love me beyond words and have stuck around all this time 🩵

Thank you to this wonderful community (SO many people) who understand this journey more than anyone else. You all are everything to me 💙

And last but not least, thank you to my sweet donor who passed away far too young. It’s not fair that your life was cut short but I hope that these past 9 years have given you experiences you didn’t get to have 💜

It’s been a pretty rough 9 years, and your little heart has been through so much. And still, we started college. We published poetry. We traveled to places like West Virginia, Delaware, Washington, Maine, Rhode Island, and Massachusetts. We went on dates and formed relationships. We did a whole semester at a four year university after three hospitalizations over the course of six months. We’ve survived sepsis, chronic EBV, severe anemia, bacterial infections, covid, bronchitis, blood clots, appendicitis, and looming diagnoses like APS and MCTD.

We have done so much, and now… look at where we are. In Colorado, at the Transplant Games of America 💚💙 with built in rest breaks and participating as a volunteer/supporter after recharging.

I don’t believe in coincidences because I believe we were meant to connect. I believe that the universe gave me the heart of a 12 year old girl because that was the age I started falling apart. The age I felt most lost and lonely. You not only gave me a second chance at the rest of my life, but you gave little 12 year old me a chance to heal. You are my hero and my guardian angel. taken in Denver, Colorado by @heartoflemonade

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4 months ago

The Transplant Games of America (TGA) are next week in Denver, Colorado 💙💚 I feel so blessed going for the first time (both TGA and the state of Colorado) to celebrate the gift of life. I will be out there for my 9th heartiversary and it is unreal to think it’s been almost nine whole years since I was given this beautiful little heart. I have met so many wonderful people in this community and am excited to meet some of you (and many more) while I’m there :’) by @heartoflemonade

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4 months ago

Inspired by @awkward_life_of_cancer 💜

There are a lot of hardships that come with illness but the beauty of community is what makes the horrors a little less scary!! by @heartoflemonade

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5 months ago

These past couple weeks have been really rough. Between viral infections and flare ups, I’ve been in and out of doctor’s offices and urgent care pretty frequently. It’s difficult, and frustrating at times when the world is still spinning while you’re in a perpetual state of controlling a body that’s chaotic and unpredictable.

I’ve sobbed so many times this month. PT was getting physically draining and I have had to take a pause on it. To be honest, I was actually starting to enjoy it. It felt like an outing for me because I don’t get out a lot, but the time and energy it took didn’t align with my healthcare needs.

Slowly but surely, I’m taking moments when my body is quieter and get an opportunity to be with others. A movie with friends, a smoothie with my mom, or gardens with my sister. And it’s great for my mental health, but my body ultimately pays the price (which tends to get me caught in a cycle of mental health declining and finding ways to improve it at the expense of being chronically ill).

I regularly see a therapist and a psychiatrist. I’m open with my doctors. I’m trying to be more open on here (maybe a little too open sometimes?) but as I navigate this all, the one thing that keeps me grounded is community. Having people in my life who understand. Having issues of a magazine I read through with amazing stories that mirror my own. Knowing that someone is reading this and the possibility that my words will resonate. Even if it’s just one.

I’m learning more about my body. A body completely different than the one I had 9 years ago. Sometimes that means being in bed for three days. Sometimes it means going on an outing but with accommodations made. Sometimes it’s hours and hours spent in a room and waiting for someone I’ll talk to for less than 20 minutes.

At the end of the day though, I find comfort in the fact that my life challenges have made me appreciate the moments outside of my own head. And there’s just something I feel every time I get excited over something seemingly mundane to anyone else. Something magical.

I’m surviving constant loss while living a life I treasure. I’m present when I can be and I’m grateful for it every time 💜 by @heartoflemonade

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6 months ago

1 in 100 babies are born with a congenital heart defect. Almost 27 years ago I was that 1 in 100 born with a CHD and today I am coming up on 9 years with a heart transplant.

I have two perspectives of life:
• Growing up with HLHS
• Receiving a heart transplant at 18 years old

It’s two different kinds of existing. Both difficult and both a blessing. I wear red not only for myself, but for the heart community as a whole. I wear red for the fellow CHD survivors regardless of whether or not they ever need transplants. I also wear red for every heart transplant recipient regardless of whether or not they had CHD.

Today is to celebrate survivors, honor those that we’ve lost, and show appreciation for caregivers and healthcare providers. Heart disease is the number one leading cause of death in the United States and I will continue to raise awareness in all ways, shapes, and forms 💙❤️💜

#wearredday❤️ by @heartoflemonade

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8 months ago

In spirit of Thanksgiving coming up soon, I wanted to share my gratitude for organ donation. Little everyday moments that might seem mundane are luxuries that go under appreciated. It’s been a hard couple of years, but I’m taking the small wins where I can get them.

So maybe they aren’t so small after all ❤️ by @heartoflemonade

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a year ago

So incredibly grateful for @bonusdaysmag ❤️ I just got this issue today and while I haven’t read through all of it yet, I am continually in awe of how much thought and love is put into these magazines. There’s a little piece of everything, from stories and poems to book recommendations and preparation for hospital stays.

I told my mom tonight “people are reading this from their hospital beds.” I remember how alone I felt in that hospital bed waiting for the “call.” I love that these last few years have grown into a whole community and I love how transplant community is ready to welcome them before they even have one themselves. I hope they feel less alone… along with caretakers, donor families, living donors, and anyone with chronic illness. I think comfort of community is what keeps many of us going, even during the hard parts.

Also! Alison also shared a poem I wrote back in 2020 :’) Thank you Alison for including my writing from such a challenging yet significant time of my life. I can’t wait to read the rest!! by @heartoflemonade

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a year ago

October is for healing and listening to music from the early 2000s ❤️

Life is complex and weird. No words of wisdom to give this month but still captured a few pictures of the smaller moments as a process of recovery from the last one 🌈 by @heartoflemonade

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a year ago