About me: I live in NYC, and I am on a non-stop quest for healing.
I have a chronic illness called Scleroderma / Mixed Connective Tissue Disease. I also have a pacemaker/defibrillator implanted in my chest.
The Scleroderma has affected my heart causing it to be 70% covered in scar tissue.
The docs tell me there is no cure for Scleroderma. Yet, I am determined to cure myself.
Thanks for being in my world
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It’s articles like this one that inspire me and give me hope. I’ve been reading more and more like this one every day —growing organs, printing organs, quantified self, etc. My plan has always been to keep my heart, preserve it with love and grow her strong so she can be ready for the amazing medical wonders that are just around the corner. 3-d printing is only one, think about stem cells, think about the joining of human dna with technology/ or machines?
I have been researching many doctors and futurists on the matter and the truth is, I know that soon I may have more options that just a heart transplant. It’s exciting . I have a list of doctors, people doing amazing things right now , that I would love to speak with. This is one of my new projects, to find them and therefore find the new possibilities for my heart.
This of course, comes one week before my pacemaker surgery, something that I am obviously anxious about.
Picture this. You wake up one morning to a strange beeping sound. It is an unfamiliar beeping, and you get out of bed to search for the culprit. I looked around my apartment to no avail, but the beeping stopped after a bit. It wasn’t until I woke up the following morning to that same sound, around the same time, and as I searched under the couch pillows I realized it coming from my chest! Yes, my pacemaker was beeping from inside of my chest. Weird. I called my doc and head up to Columbia Presbyterian as soon as I could.
Turns out it’s time my original pacemaker defibrillator be removed to make way for a new one to be implanted, one with a fresh battery. I was completely surprised, caught off guard, but it has indeed been five years since this baby first got implanted back in January 2008 at the Cleveland Clinic (they say batteries last 5 - 7 years). I was upset over the news because I get my pacemaker checked every 4 months. I asked at my checkups in September and December how my battery was looking and was told that I had at least another year. My nerves are most frazzled because I was caught off guard with this.
We all know how I feel about hospitals, procedures, and being in a hospital bed. It stirs up terrible and gloomy emotions in me with some panic mixed in. The good news is they tell me this is a fairly simple procedure, not very long, and I will have a new pacemaker in my chest, some stitches, and be on my way to heal for several weeks. The one thing I DO remember is how squishy it is in my chest when that pacemaker first goes in. Yikes!
My surgery is scheduled to take place in a few weeks at the end of April. When I confirm the day I will be sure to share with all of you here. Maybe I can start coloring hearts in the mean time, get those good vibes going, picture my strong perfect healthy heart, and send it loving healing vibes!
I still believe in a day where my heart will heal and no longer need the assistance of a pacemaker defib. That day will happen. Until then, I get through this surgery by being positive, thinking positive, and bouncing back quickly. I will not let this get me down or slow down my recent Fighter momentum!
UPDATE: surgery is this Friday!
I’ve been thinking a lot lately about all of the people that have contributed in some way to getting me better. There are SO many. I’ve always expressed myself here, how incredibly lucky and grateful I am to have the support system that I credit for getting me here. The Healthy Heart Project, The FundRagers, the love of my friends and family. There are the obvious doctors, alternative docs, wellness rockstars, energy healers, therapists, yoga teachers, acupuncturist, basically my dream team that I curated over the course of two years. I mean, I think of these faces every single day of my life. But the last few days I’ve been thinking about the not so obvious contributors that played a part like the bodega guys, Gaia Cafe who kept me fed, or my neighbors who work from home (It was good to know someone was around in case something happened). The drivers at New Day Car Service are another example.
Originally posted 2/14/13
Yesterday was a very special milestone for a woman who has influenced my life greatly. It was 10 years ago yesterday that Kris Carr was diagnosed with a rare Cancer, Stage 4, and given 10 years to live. Today Kris Carr is thriving, she has made space for her cancer in her life, she has a family, a wellness empire, and most of all, she was the first and biggest wake up call to me five years ago when I was diagnosed with heart failure and told that my heart would give out soon, and I would need a transplant.
If you read my blog you know my story. 25 years old, living life, when my world came to a screeching halt with my diagnosis: a serious chronic disease that had ravaged my heart. I was incredibly sick, terrified, and living in the unknown. I thought I would die in my sleep each night. I was at home one day crying in bed when I turned on the tv for distraction. Oprah was on, and Kris Carr was her guest for the day. I had never heard of her before but Kris’ documentary Crazy Sexy Cancer was about to premier on TLC that evening, and she came on Oprah to share her story. Hearing Kris speak gave me hope and light at my worst, most awful, darkest moment. I was thinking about giving up then, confused and wondering why this happened to me. I watched her documentary that evening and amidst deep sobs I felt empowered. I knew what I had to do. I knew that I had to listen to myself, to take my healing into my own hands, and choose my healing path.
Up until this point all I heard from the doctors did not seem right to me. I felt uncomfortable being told such “FINAL” things from them: that I didn’t have long with my own heart, that my heart could never improve and go back to normal because it was stretched out and covered in scar tissue. That unless I got a heart transplant immediately I didn’t have long. Even then, pale and gray and at 96 pounds, none of this felt true to me. I knew there was a team out there for me, I knew I had to search the globe for people who like me, believed that my body -if given the proper love, care, and treatments, could heal itself. I sounded crazy to most. But Kris Carr was living proof. She was doing it. Against all odds. A couple months later I checked myself into Cleveland Clinic in Ohio, got my pacemaker defibrillator implanted in my chest, and set out on a rock and roll tour back to wellness.
A few years later I got the chance to speak with Kris. By now she had written a couple books, was quickly becoming a prominent figure in the wellness and alternative healing movement, and she was offering phone consultations. I was deep into my healing (what Kris calls “CEO of healing”), I ate, slept, and breathed healing my heart and mind. And while I was gaining traction I was so lost mentally and emotionally. I felt I needed to speak with her, someone else who became a prisoner of their body at a young age.
It was during that phone call with Kris that she saved me again. For so long I felt misunderstood, my friends and family so amazing and so supportive but couldn’t truly understand how I was feeling at the time. I needed someone who had “been there”.
Kris has been a constant beacon on this journey of mine. The light I look to when things get hard. Most amazing about her? She always remained and reamins human. She always keeps it real and made sure to show the rough edges and talk about the ugly thoughts and times when you just want to say “fuck it all”. While positive, she isn’t fake or feeding us bullshit. The life of a wellness warrior is hard and it’s filled with ups and downs, disappointments and gut wrenching sadness. But we get back up. We believe with every cell in our body that we are here to live.
It’s because of Kris that I decided to live out loud and document my journey. I felt inspired to reach out and find others like me, to find answers and information, to spread my knowledge. This lit a spark in me to help others. To change the perception of what being a patient is; to empower and encourage patients to be their own advocates. To listen to yourself and take care of your body.
Happy 10th Kris. You have shifted consciousness, raised awareness, and re-defined what it means to be “sick”. Thank you.
The past seven to ten months have been transformative in many ways. It is clear by the scarcity of my posts that I’ve been weary to talk about it, unsure of what is really happening, what it is that I’m truly struggling with.
It goes without saying that I am grateful to have graduated to a more luxurious set of worries and problems. That is, I am luckily out of survival mode, where every day was a question and I did not know what to expect —where I was grateful if I walked five blocks. A lot of it is so blurry now. This new phase of healing, it is more of a mental struggle —life after patient life.
First, I made it a point to throw myself back into the world. I was getting too weird, I was in the house for wayyyyy too long by my lonesome and I saw it affecting me in ways that weren’t pretty. I challenged myself at the end of this past summer to get social, get out of the house, and live my second chance at life. My new chapter. But here’s the thing… what now? How do I even begin to move on with this “thing” constantly on my mind. I feel like two different people…. the sick one and the one that’s trying to move forward. How do they exist together? How do I make space for all of this in one life? In one mind? I’m lost.
I have so much knowledge and experience from what I’ve conquered. But it’s a very specific kind of knowledge. I am so proud of the things I did for myself, for my heart. I continue to juggle healing full-time; vitamins, eating right, positive thinking, the list goes on. The new challenges are figuring out how I fit in. Who I am now. How I feel about everything. I meet new people and wonder, do I tell them now or do I not tell them? Do they know? Do I have to say anything? But then I feel like I’m lying somehow or that I can never truly be myself around them because this experience has been SUCH a big part of who I am today. It can be exhausting.
So, this new journey is the one I’m working out here. What happens after you get your life back? What happens when the scary times have passed and you’re one of the lucky ones, you get to choose what to do now. I’ve kept a heart transplant at bay, I’ve kept open heart surgery at bay, and I’m ready to rock with my ticker, just the way she is, for as long as I can.
First post of 2013 and I’m so ready for a new year.
I write with positive news fresh off a visit to my amazing Orthomolecular doctor. It seems that our efforts over the past two years (very intense efforts) are making a difference and my heart is still stable –remarkable news considering that it’s been five years since my heart started failing. If you remember, two years ago and all last year I was terrified because the valve that started leaking in my heart made open heart surgery a very real possibility. I was determined to find a way to stabilize my heart, and even more so, get it to strengthen a bit and move in the right direction toward healing. Because the valve was leaking, the fear is that the heart can deteriorate at a much faster rate (because of all the pressure the leak puts on the already fragile heart). MEGA doses of vitamins, taking them four times a day, 140 pills per day, seems to be kicking in. The Orthomolecular approach is to saturate my tissues with these vitamins so that my body could, in a sense, restart, or really, “jumpstart”! It’s taken two years of this but we seem to be at a our first goal! We can see that my body is responding to the treatment. I’m all about a restart!
I sort of faded out of writing every day over the past several months because things are stable. Not too much in one direction not too much in the other. It’s about doing my best and waiting. Despite my bursts of impatience where I just want to be healed, I’ve actually waited a long time to report “no new news” on my heart. I’m perfectly happy to have some sort of stability. Perfectly content with no drastic changes. For now.
Don’t get me wrong, I’m more ferocious than ever in my will to get better. I still believe wholeheartedly that my heart will heal; the scar tissue will fade, the muscle will strengthen. And I’m working crazy hard to make it happen. I am more hopeful than ever.
It’s been five years this very month since getting my pacemaker defibrillator implanted. Five years since we spent twelve very terrifying days at Cleveland Clinic. I think back to that time and it’s like a different life; a cloudy memory of bright lighting in operating rooms, sleepy afternoons in a hospital bed, and worried faces of my loved ones. A five-year distance between myself and those memories and feelings is a great thing.
I’m figuring out where to take my journey. Wondering how I can help others as I get stronger and stronger. I always thank you for taking this journey with me and I look forward to the next step: making changes from all we’ve learned together..
Wishing my SaveLaurensHeart family health, great happiness and fun this year. I look forward to celebrating progress together!
With big love from the very bottom of my ticker, L
I’ve been terrible at my Tumblr upkeep.
This weekend, I’ll catch up my Tumblr family with all posts from 2013. Beginning with the first of this year…