Lauren: A lady with a truly big heart

In the run-up to Christmas, Running in Heels craved Lauren Del Vecchio’s ‘I Have a Beautiful Heart’ bracelet. This time around, we would like to advocate the woman herself.

Lauren found out about her autoimmune disease when she was 19 years old after several years of being sick without knowing why. There are over 100 autoimmune diseases, most of which attack women and Lauren is suffering from an overlap of several: Scleroderma, Fibromyalgia and Lupus.

Given their obscurity, information was and still is difficult to come by – Lauren was told that she would be lucky if she survived the next ten years. She started chemotherapy in small doses, and seven years later, she was told she was in remission. However, that same year she had never felt worse and in October 2007 she found out her heart was failing, pumping at only 10%; normal is 55%-70%. We are privileged to share her story with you…

Once you found out that your heart was failing, what was your reaction?

Honestly, the world stood still. When I heard those words, I was in shock. I didn’t cry. I didn’t feel sad. It just felt unreal. Looking back now, it’s all a blur. It took a year before it truly hit me, before I cried for myself.

What were your options?

At the time my only option was a pacemaker but even that wasn’t certain because no two doctors could agree on what caused the heart failure. As a result, I was “ping-ponged” between three doctors who didn’t want the responsibility of a decision. Given my exceptionally low heart rate, I sensed how uncomfortable they were to even see me. That scared me. Three months later, I checked myself into the reputable Cleveland Clinic in Ohio. I told them I wouldn’t leave without answers and without feeling better.  Part of that meant getting a pacemaker/defibrillator implanted into my chest. Having gone for a 2-day consultation, I left 12 days later with a new defibrillator/pacemaker and more answers than I got in three months at home in New York.

How does the defibrillator work?

Three leads were inserted into my heart; two leads to pace my heart, the third for the defibrillator. The purpose of the defibrillator is to shock me back into normal sinus rhythm if I go into arrhythmia.  I am grateful that I’ve never been shocked by my device, it sounds so scary.

You say you are ‘healing yourself’. How?

The way I used to approach situations had to change-I had to ‘heal’ myself mentally. Being my own advocate is so important to me.  I only trust myself and my body.  If I feel uncomfortable with something a doc tells me, I won’t do it. Alternatively, I’ll keep asking around about it. Healing myself also means researching my options. It’s about creating my own healing regime which includes a little of everything; a personal spiritual program to keep faith and hope alive

Does a heart transplant really cost $1m?

Unfortunately yes. That figure includes the follow-up physiotherapy, doctor appointments, cardiac rehab, as well as the medication you must take for the rest of your life.  Even with health insurance, a heart transplant can be financially devastating to a family.

What was your life like before all this happened?

Very different.  Despite my diagnosis at 19, I had tons of energy and could do what I pleased for the most part. Sure, I had some bad days but I was determined not to let any illness stop me. So I challenged myself and pushed my body to the max! I would work two, sometimes three jobs at a time; attend school full-time, not to mention lead a very full social life.

Heart drawings Lauren has received

Did it affect your social life?

A lot of my relationships changed. Since I could no longer go out and party, it was my real friends who would come and sit with me.  Few 25 year-olds could cope with such a frightening situation. It scared a lot of people away. Yet, it is extremely important for me to keep up a thriving social life; after all, it’s who I am. Sure, I’ve had to alter it a bit, but I’m lucky to have people around who love and support me, including my family.

How has this affected your romantic relationships?

When I found out about my heart I had been dating my man for only a year. I told him I would understand if he got up and walked out because I didn’t know what the future would bring. He told me I was crazy and held my hand throughout the entire thing. He walked me to the bathroom when I couldn’t stand on my own; he showered me when I was too weak to do so myself; he took care of me. He’s been through just as much as I have.  Without him I wouldn’t be where I am today.  He is the most positive and inspiring person I know. We got married in 2009.

Is there any research being done on finding a cure?

No. It’s quite frustrating. Besides notable exceptions like Diabetes Type 2 and Multiple Sclerosis, autoimmune diseases are obscure, hence there isn’t much awareness. Diagnosing them often takes a long time with (mostly) women being told that they are either imagining things or hypochondriacs. I have yet to find a non-profit that addresses them properly. Since everyone is unique in their symptoms, it is very hard to find others like you. I dream of starting a non-profit but it is a very big job and I am just not “there” yet in my recovery.  Baby steps… when the time is right I will run with it.

Have you found others like yourself?

I became obsessed with finding others “like me”. I joined countless groups online, never truly feeling like I belonged.  That’s why I started my blog. If I could connect with one other person who knew what I was going through, I’d feel good. Letting someone know they are not alone is very powerful when facing something so life-altering.

As part of your blog, you invite people to send drawings of healthy hearts for support.

Yes, I’ve received about 500 healthy hearts!  Amazing!  Sometimes I fan them out all over the floor and sit among them; sometimes I lie with my back on them…  I feel they have special, healing powers.

Who inspires you?

Stevie Nicks because she’s a goddess who has overcome so much; the choreographer; Bill T. Jones for his poetic contribution to this world; my healing mentor Gwen; Louise Hay because she’s amazing; my 6-month-old niece because she is so pure and sweet; Kris Carr  for her tenacity and hunger to live the hell out of life; my husband for his unwavering optimism and love.

Desert island book?

This is tough, like asking a parent to pick a favorite child! That said… I would absolutely want God Calling by AJ Russell with me. The hardcover is out of print now but a very dear friend gave it to me when we first found out about my heart. I am not religious so it is not a religious book to me, but a spiritual one. No matter how many times you read through it, these 365 devotionals always take on a different meaning according to where you are in your life. It’s very special.

In her favourite European city: Paris

Who are you listening to at the moment?

Gil Scott Heron, The National and Edward Sharpe & the Magnetic Zeroes.

What couldn’t you live without?

Crisp white sheets, a fluffy white blanket, a big comfortable bed.

Dream purchase?

The building at 190 Bowery.

Favourite movie?

I can’t lie… it’s a tie between Center Stage and Love Actually!

Favourite European city and why?

Paris. No explanation required.

Favourite bar?

The Oak Bar at the Plaza Hotel in New York.

How do you stay motivated?

My support system; that includes family, friends, strangers who contact me and become friends, online support groups. Sometimes I feel like giving into the negativity that creeps up, but then I think of everyone rooting for me and I want to get better for them. I can’t wait for the day I tell everyone that my heart is healed. That we DID IT TOGETHER!

I’m also motivated by the dream of a full life, one in which I’m physically capable of doing anything I want: exploring the world with my husband, finding a career that I love and working at it, perhaps starting a family, there’s so much we want to do together. Talking about it helps me create a clear picture of what I am getting better for.

Where do you see yourself in five years?

I have a healthy, perfect, shining, beautiful heart. Dancing to rock and roll. Running when I want to run. Riding bikes, walking everywhere, going on adventures, using my body to the fullest.

I never realised how much we take our bodies for granted. I actually have recurring dreams where I can just run forever, or I’m dancing non-stop and I’m so happy. These used to make me sad because I miss it so much. But now I smile when I wake from those dreams.  I choose my healthy heart dreams to be prophetic.

One last question…. can you run in heels?

Any true NYC girl prides herself on walking these mean streets in a fabulous pair of heels! The cobblestones are the worst, there’s certainly an art form to it.  I don’t rock the high heel as much as I used to but I bet I could still run for a cab if it came down to it!

Check out Lauren’s blog online here and show your support by purchasing a Save Lauren’s Heart bracelet.

One of Lauren's hand-crafted "I Have a Beautiful Heart" Bracelets