September 2019

Life is a Beautiful Gift: Ali’s Story

Ali Neff

Ali is a freelance author and social media influencer. She developed lymphedema at 15, after her second heart transplant. In sharing her story, she hopes to positively impact others to chase their dreams – no matter the obstacles they face. She partnered with Juzo to help raise awareness of lymphedema and the benefits of medical compression. You can learn more about Ali’s inspirational story in her book, “If Not Now When,” available on Amazon.

When did you first learn that you had lymphedema?
I was in chronic heart failure for about three years. During heart failure, you swell up like a balloon in your abdomen, feet and ankles. Even after my second heart transplant I still had swelling in both my feet. It took about two months for the fluid to disperse. The swelling went away in my feet, but my left thigh was constantly swollen. My cardiologist suggested I wear a compression stocking, but gave no direction of compression level or what condition I could have. We bought a couple stockings from Amazon. They seemed to help, but slowly the swelling started to spread down my leg, into my calf, ankle, foot and toes. It became uncomfortable and hard for me to move my ankle. My cardiologist referred me to a lymphedema therapist. Right away, she diagnosed me with lymphedema. She showed me how to properly care for my leg by wrapping, massaging and the proper compression stockings to wear. I remember her saying, “If it’s easy for you to put on, its not a high enough compression.”

How does compression help you with your daily life and activities?
I wouldn’t be able to live a normal life without my compression stockings. I wouldn’t be able to go to work, workout or go out and have fun. I’m 23, and it’s important for me to live as normal of a life as possible, especially after everything I have gone through. My stockings keep my swelling under control, so I can still have mobility in my leg. Granted, I still have swelling, but it is nothing compared to what it would be without compression.

What advice do you have for others with lymphedema who may be struggling with self-confidence?
Know you are more than your diagnosis. You are a person. You add value to this Earth, and you are here for a reason. Self-care is going to be your best friend when it comes to lymphedema. The better you take care of your body the better your body will take care of you and the better you will feel. Find a good therapist that will teach you proper massage technics and do your research on compression garments and what has worked for others. Try to always stay one-step ahead. Even if you’re having a good day without a lot of swelling, still wear your compression garment. My favorite self-care trick is to take a couple droplets of CBD oil and use a dry brush to massage it into my leg. It helps keep my skin soft and seems to help move my lymph fluid around. I do this in the morning, maybe three times per week, before I put my compression stocking on. Try all different methods and find what works best for you and what is best for your body. Check with your doctor and don’t be afraid to reach out to others. It helps to have a support group that understands exactly what you’re going through, and I am always open to offer advice or simply just to listen.

Why do you want to become a motivational speaker and model?
My dream of becoming a model/speaker stems from my love of advocacy. I have always been proud of my heart transplants and my lymphedema leg. My dad taught me that life is what you make it. You can either feel sorry for yourself, and live a miserable life, or you can get up and be proud of your accomplishments – even if in some people’s eyes, they may seem like losses. In my eyes, modeling would be a great way to show other individuals with my conditions that just because you have a diagnosis doesn’t mean you have a label placed on you. You can be whatever you want to be; it just may take a little more work than the average person. You were given this path in life because you are strong enough for it. I want to be the person I needed when I was going through my unique circumstances.

Why did you decide to share your story, struggles and successes on social media?
I wanted to share my story, but I didn’t know where to start honestly. I posted a brief summary of my heart transplant stories to my personal Facebook page in February. It blew up. Within a week, I went from 600 friends to about 4,000. I had tons of messages from people asking for advice or just reaching out to say that my story helped put things into perspective for them. I took that and ran with it. I moved my social media focus to Instagram and started making connections with other individuals who have either had a heart transplant, lymphedema or the rare occasion of both. I discovered this whole new community where I finally fit in. I started posting pictures portraying my scar and my leg, hoping to help spread awareness of compression stockings mainly, but also chest scars. Since then, I have steadily been growing my social media following, in hopes to familiarize other people about lymphedema. So, people who have it don’t have to feel embarrassed about wearing their compression stockings.

In your book, you talk openly about your depression and anxiety. How did you overcome it?
There’s not specifically one thing that triggered my depression. It was something that came on gradually. I believe it was a mixture of a job I absolutely hated, not having a good self-care routine, and allowing people in my life that didn’t deserve to be in it. I started by focusing on my job. I didn’t like where I as working, so I quit and found something else. Then, I moved on to my self-care routine, which included a new workout plan. I was doing anything and everything that made me feel good about myself, which included posting on my socials. Slowly, I started to build my physical strength and my confidence. It’s funny how toxic people no longer take advantage of you when you gain a little confidence. I cut out the toxic people in my life and focused on myself. It was the best decision I’ve ever made, people who want nothing but the best for me now surround me.

What impact has your heart donor and his family had on your life?
Eric passed away a few days after his 20th birthday in a car accident. He is my guardian angel. I truly believe that. He saved my life, maybe not by his choice, but he saved it. I stay healthy and am involved with his family because I not only want to be, but it’s my way of saying “thank you” and showing my appreciation. I want them to know that Eric’s heart went to someone who truly does appreciate it and knows how precious of a gift it is. I flew out to Denver to meet Eric’s family and friends in August. Eric’s mom got a hotel five minutes away from where I stayed just so she could be as close as possible. She shared stories of her son and also gave me a lot of his personal possessions, including the hat she intended to give him for his birthday. For Eric’s funeral, she made rubber bracelets with his name, birth date and death date. When she gave me a bracelet, she said, “I’ve been waiting eight years to give this to you.” She also gave me a copy of his obituary, which mentioned me. I had no idea. She also bought us matching necklaces with a purple heart. Purple is my favorite color, and it was Eric’s, as well.

When I met 40+ people who were part of Eric’s life, I made sure to hug everyone I met and made sure they knew I was there for them. I wasn’t there to replace Eric; I just wanted to get to know more about him. A lot of people told me I was brave for meeting Eric’s family and friends; that I was strong for wanting to get to know him and to try and bring peace to a family I didn’t know. That’s not brave. It’s just something you do when you’ve been given two separate shots at life. It’s my way of saying thank you. What’s brave is a mother who has lost her child, looking into the face of the girl that received her child’s beating heart and saying, “I have accepted that I gave birth to my son to save your life. Although I lost my son, I gained a daughter.”

I hope I provide Eric’s family with some kind of positive light. I hope I make them proud. The world needs to hear Eric’s story along with mine, because together we are now one. I live on because of him, and a part of him lives on because of me. Eric wanted to be a tattoo artist, so I got a purple E tattoo behind my right ear while I was in Denver.

Anything else?
Be kind to everyone you meet. You don’t know what someone is going through. Even if someone is rude to you, be the bigger person and do what’s right. It not only reflects better on you, but then you know you did all that you could do.

Barbara Brady Eric's mom commented on Sep 09, 2019

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Your strength always makes me smile and proud. Go grab those stars baby.thank you for the kind words.??

Nicole Mattison commented on Sep 09, 2019

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Ali Neff is an incredibly Beautiful person, Inside + out! She is talented, intelligent + inspiring! Her words/book touched my heart! I am one of Eric's close family friend's, and was blessed to meet Ali in August + see first hand the incredible life she is creating for herself + the passion that now flows within her, thanks to the gift of Eric's heart! Ali is a Blessing in our life + we hope her story can continue to help other's who may be struggling! ??