For a little over two weeks now I have been feeling AWFUL.  I’m talking major pain flare up of my underlying condition (Scleroderma/ Fibromyalgia/ Lupus), fatigued, strange thumping and palpitations of my heart, fainting feelings, chills and hot flashes, the list goes on.  Each day I feel like I am white-knuckling it, meaning I am holding on just to make it through the day.  And I get to a point where I just can’t keep it together anymore.

The ironic part is that I see friends, family, and even the staff in doctor offices and everyone says how great I look.  That I LOOK healthy!  For four years now I have never looked how I felt.  Aside from becoming very thing at one point and quite gray when my heart was barely pumping, I have done a pretty good job of looking “OK” on the outside.  Because of this sometimes people forget or do not realize what I’m dealing with. 

The other day I attended a charity event for Frenz for Cause where there was an amazing turnout for a Zumbathon to benefit lung cancer at Memorial Sloan Kettering.  It was so hard to sit there and not participate.  I wanted to get up and dance and let out all of my frustrations and just not care and move every part of my body until I couldn’t anymore.  I wanted to sweat and be out of breath and feel invigorated!  I’ve wanted to do it for years –just go crazy and DANCE.  But the harsh reality is that I cannot.  My body does not allow for that.  My heart simply is not strong enough.  I am not allowed to do any sort of cardio, I can barely do subway stairs let alone a workout.  And I’m 30 years old.  This is my life, and I always think I have accepted it but sometimes days like that one creep up and make me remember all the things I cannot do and wish so badly I could.

Each day I’m waking up hoping that it’s the day I feel better.  And today, on the 15th or 16th day of pain and weakness it’s getting to me mentally.  I am pretty miserable today. I just want to feel good.

All morning I have been on the phone with insurance and prescription drug companies.  There is nothing that frustrates me more than wasting hours of my life on the phone waiting and repeating myself, and waiting some more.

Today I went to refill a medication that I have been taking for one year and refilling each month.  This medication is crucial to my every day and I cannot simply stop taking it.  My prescription drug coverage was covering it for the past year leaving me with only a small co-pay which was great.  Upon refilling today, I was charged a lot of money.  I called the drug plan today to find out why this sudden change only to speak to what I can assume is a call center in India where two people were reading off scripts and could not help me at all with my question. 

After about an hour getting through these two people who were more like robots because they repeated their script over and over, I was finally transferred and transferred once again until I reached someone who could explain to me what was happening.  Well I got an explanation, one that is totally ridiculous and unfair.  I am beyond upset and now must pay between $400 and $600 per month for my medication going forward.  And the joke is that I actually have insurance… so tell me, what is it even for? 

My experiences with drug companies and healthcare in general in the US has left me disappointed and feeling like I don’t matter in many instances.  Anyone suffering with an illness where they must take medication is dealing with a lot already and to add these stresses into the equation is sometimes too much to take.  At this point money doesn’t even seem real to me anymore, it stands between myself and the means to getting me healthy, which is so messed up, and the numbers are laughable. $400- $600 monthly on top of the $600 I already pay per month for the vitamins that are keeping me healthy.  Laughable.

Today is one of those days where I want to bury my head in the pillows and stay in bed. 

Today begins sales for the SLH FundRager 2.0 on May 31st. There are no words to express how I feel.  My friends and family have been working hard and this event is going to be spectacular.  Each day they have another exciting auction item, or sponsor that signs on, and they are in the process of some exciting entertainment options.  We will keep you posted as things happen!  I feel so blessed and so grateful.

All event information can be found on our event page on Eventbrite (below).  You can donate and get your tickets to the May 31st event by clicking the button below.

Spread the word!

*if for some reason the button does not work, you can click this link:  http://savelaurensheartfundrager.eventbrite.com/

I made it. Thirty.

At my very worst, when I was so sick and fragile and didn’t leave my house much, I became obsessed with making it to thirty years old.  My heart failed  at 25, so for the past four years my goal has been:  Lauren, you will be strong enough and well enough to celebrate your 30th birthday.  You will be feeling confident and not scared, you will be out and about a lot more, and you will be on your way to healing yourself.

I cannot tell you how good it feels to be in the exact place I envisioned being.  To set up a goal and reach it made turning 30 that much sweeter.

Once dreaded, birthdays now have a completely different meaning for me.  For so many years I would get the “birthday blues” for two weeks before the 23rd. But now rather than getting weird and hard on myself about what I’ve accomplished that year, I am proud to have made it another year, privileged to turn another number, and grateful to be on this planet.  I feel so amazing.  I find it hard to put into words but it does feel like a milestone.  A big one.

My new goal?  90… with my own heart!

Four years ago, the original SaveLaurensHeart FundRager changed my life.  It was an amazing night and a tremendous success. Based on my recent trips to the doctor, my friends and family feel that NOW is the time to take action again, and host another SLH FundRager for my medical expenses.

Please SAVE THE DATE:  The Save Lauren’s Heart Fundrager 2.0

Thursday, May 31st, 2012 at 7pm. At The Angel Orensanz Foundation on the Lower East Side of Manhattan.  Tickets will go on sale the first week of April.

Here is a complete overview of the event, of Lauren’s illness, and why now is a crucial time in her healing… Please feel free to print this out and pass it along.

SLH_FinalPR_2012

About Lauren Del Vecchio and the SaveLaurensHeart FundRager
Lauren Del Vecchio was told that her heart was failing her four years ago at age 25. Her life was instantly changed. That day began a whirlwind of doctors, specialists, tests, hospital stays, and medications. Chest pains and ambulance trips to the hospital became common. Lauren became a prisoner of her own body, scared to leave the house for fear she would collapse on the street or have an arrhythmia and die alone. She could not rest at night; palpitations, night sweats, and nightmares replaced one of her favorite things: sleep! For three months she and her family did all they could to get to the bottom of why this happened. Although Lauren has had health insurance, many of the specialists do not take insurance. On the continued search for answers, in January 2008 Lauren and her family decided to visit Cleveland Clinic, the number one hospital for cardiac care in the U.S. There, she spent twelve days in the hospital for extensive testing and procedures. A pacemaker/defibrillator was implanted in her chest and she must continue to follow-up with the doctors in Cleveland for the rest of her life. The pacemaker/defibrillator can be seen in her chest (the restorative yoga helps her body to acclimate itself to the metal box in her small frame).
The original “SaveLaurensHeart FundRager” held in 2008 helped Lauren and her family to pay her enor- mous medical bills at the time, and it gave her the means to search for alternative treatments that would help her rebuild her body and her heart. For four years now the donations have given Lauren a reason to get out of bed each day and look for a way to get better and take action. Because of the donations she has been able to find a team of doctors and healers that she is working with to keep her heart in the best condition possible. In the course of four years, Lauren has been able to gain weight, build her muscles and strength, address her stomach and pain issues, and find a support system in her healers. Many of which are not covered by insurance.

above: Cleveland Clinic 2008

to the right: Columbia Presb 2011

While she has made progress, Lauren is still in heart failure, with one of her valves severely leaking. Her heart failure doctors at Columbia have been pushing for open heart surgery to try and repair the valve to hopefully preserve her heart for as long as possible until a heart transplant –something they still say is in- evitable. Lauren is reminded of this every single day. With the help of the raised funds, she found an Or- thomolecular doctor out of town (who also does not take insurance) and is currently on an intense routine where she takes over 120 vitamins daily. These vitamins have been responsible for her weight gain and strengthening, and they protect her heart from arrhythmias. Lauren must take these vitamins every single day. Vitamins are not covered by insurance so this costs about $700 monthly, not to mention the $1000 every two months to see the orthomolecular specialist out of state.

As the funds ran out over the past year from the last fundraiser Lauren had to stop doing the things that help her pain diminish and give her energy. Acupuncture regularly, as well as pain management, osteopathy, and restorative yoga are some of the many things she must do to stay in good health. Seeing that Lauren has such a complicated illness, all of these alternative treatments are crucial to maintain- ing the best possible overall health that she can and of course, in achieving the main goal of preserving her own heart for as long as possible. In the next few years Lauren’s pace- maker defibrillator will need to be replaced, a procedure that costs hundreds of thousands of dollars (even with insurance it is still costly). This procedure will take place where it was originally implanted, at the Cleveland Clinic, the best heart hospital in the US (which means more travel expenses).

Lauren’s friends and family believe that now is the time to take action again and throw another fundraiser to help Lauren continue on her healing journey. The event will take place on Thursday May 31st, 2012 at the Angel Orensanz Foundation on the Lower East Side in New York City.
Up until this point Lauren and her family have spent hundreds of thousands of dollars on treatments. They never want money to be an issue when it comes to Lauren’s health and they would like her to continue on her path to healing with the hopes of keeping her heart preserved long enough to push off open heart surgery for a while, and a heart transplant even longer. They want to give Lauren the chance to live her life outside of hospitals and doctor offices.
With each day Lauren and her family continue to be grateful to those around them who show never ending support and love.

Clockwise from the top left: Lauren sick in 2009. Lauren sick in 2010. Lauren in November feeling stronger. Lauren in the summer of 2011, three years after the original FundRager.
Her progress would not have been possible without your support and donations.
Lauren still has a long way to go to a healthy heart and a full recovery.

Background information on Lauren’s illness, Scleroderma.
To provide some background, when she was eighteen Lauren experienced a lot of health issues: muscle weakness, pain, and stomach problems. She was diagnosed with a rare autoimmune disorder called Mixed Connective Tissue Disease overlap Scleroderma. Autoimmune means that your own body’s immune system is working overtime, causing it to attack its own body as if it were the germs or disease it is supposed to fight against. The Mixed Connective Tissue affects her joints and muscles, often leaving her in pain and very fatigued. Scleroderma is known for attacking the body’s organs by depositing scar tissue until they can no longer function properly. Upon receiving this news at such a young age, Lauren immediately made a promise to herself that she would not let this mysterious illness affect her life. She would live it to the fullest, push her limits, love every day –and she did. Lauren graduated New York University in 2004 where she studied journalism and philosophy. Throughout school she always worked two, sometimes three jobs, in addition to being a full-time student, and loved every minute.
For seven years she grew, got new exciting jobs at places like MTV and Creative Artists Agency, bartended and served as a waitress in nightclubs, attended exciting events, and met new people. Despite the occa- sional bad days where it was tough to get out of bed due to extreme muscle fatigue, joint pains, and the many drugs (including immunosuppressant therapies) which made her nauseous and gave her terrible head- aches, Lauren still stayed positive and never allowed the condition to get her down.
Over the spring of 2007 is when things worsened for Lauren. She began spending entire weekends in bed, unable to move. She could not give 100% at her job as a personal concierge, often feeling faint and even- tually couldn’t even climb the subway stairs to make it to work everyday. Eventually she sadly had to stop working because of her limitations. In the fall of 2007 her condition took a turn for the worse: Lauren was informed that her condition spread to her heart which was now extensively scarred, pumping at only 15% capacity (a normal heart pumps at 50 – 65%). She was now classified as a patient with heart failure, di- agnosed with dilated Cardiomyopathy. The doctors tell Lauren that once the heart becomes scarred and stretched out as the Scleroderma had done to her heart, it can never go back. But Lauren believes there is a way to make anything happen, and she continues to believe she will heal her heart with alternative treatments.

Images from the original SaveLaurensHeart FundRager in 2008:

I know I’ve been quiet lately. For a few weeks I haven’t been feeling so good and so I haven’t written here.

As I mentioned here before, I have made a lot of progress over the past several months.  On my orthomolecular vitamin plan I have been able to gain weight, my energy has increased, and I was feeling more hopeful than ever.  So much so that I really pushed myself to be out and about –maybe too much.  Each day I wake up and I only think of that day.  I take one day at a time often refusing the urge to think about the future.  It’s just too overwhelming.

With my recent “funk” and all of the aches, pains and stomach problems that I’ve been dealing with I went to see my doctor.  And while the doctor also sees the positive improvements, sitting there for three hours and talking about the big picture was really overwhelming for me.  I haven’t been “ok” since that appointment last week and it’s because I am feeling scared.  When I sat with the doctor I had to think of the future, and all of the things that are hanging in the air… my heart, my leaking valve, the possibility of open heart surgery (I’ve managed to keep that conversation at bay for a long time now), my heart transplant doctor that still says it’s inevitable.  I left there with my head spinning and I haven’t been able to calm down since.

The reality is that I still have a long way to go.  Sure, I am dedicated each day to taking my 120 pills (vitamins) and medication -and eating right, but my heart is still the same and has not yet shown the improvements I am hoping to see.  I feel lost at the moment, scared and lost.  It doesn’t help that I am tired and achy because that just makes things worse.  I just have to get through this funk and keep positive but it made me realize that I have to really take my healing game up a notch.

For these past few months when I was feeling well it brought me a new sense of freedom.  I wanted to do things that would bring me into the world and out of my healing bubble. I was excited to try new things and maybe new projects but my recent health issues slammed me in the face with reality.. that I still very much have to make healing my priority.  Sometimes I feel lonely.  It’s been four years of healing full-time and my world has gotten a little smaller because of it.  I stay at home alone most days because my routine is so important and difficult to accomplish if I’m out and about.  My progress is amazing but now is the time to ride that wave.  There is a lot to be done still.

I’m a little sad today so I’m just letting myself “be”.  Every so often it all HITS ME! My heart failure, the possibilities, how fragile my body is.  So, I am just sitting here in my funk and hopefully it will pass. 

I still have a great announcement coming but I lost some momentum with my recent health issues.  I am excited to talk about all of the positive things to come, but for now I am crawling under the covers and giving my heart and body the rest that they need.  Tomorrow is a new day.

xxL

BIG news happening over at SaveLaurensHeart!

Announcement to come in the next two weeks.

Last Sunday the NY Times published an article that really disturbed me:

http://www.nytimes.com/2012/01/22/nyregion/chefs-butlers-and-marble-baths-not-your-average-hospital-room.html?_r=3

I am in the process of establishing my non-profit organization for Patient Advocacy and this is why… I want people to know that they are worth more than this!  A VIP patient? There should be no such concept! Every single patient should be treated equal.

I remember watching Bill Maher a while back and he was interviewing Chris Rock who was telling a story about the healthcare he was exposed to with his sick mother before he became famous while he was still “poor”,and many years later with his father when he was a rich celebrity.  Chris Rock said that his mother’s condition was not life or death, he felt that she could’ve been saved but they weren’t offered the treatment she needed because of their financial status and his mom eventually died from complications of her condition.  Years later his father was extremely ill and close to death, much sicker than Rock’s mom had been, but because of his celebrity status, everything was done to save his father.  They were offered things you couldn’t imagine, and his dad lived.  Chris Rock said that if the general public knew of this huge difference in the way the rich and the poor are treated in hospitals there would be “riots in the streets”.  So I ask, where are these riots? This article is evidence of this disparity. This is happening! Where is the anger?  Where is everyone when it comes time to advocate for ourselves, to demand better?  We must demand better!

The money and effort put into making these VIP areas should instead be used to renovate, update, and innovate the entire hospital floor by floor (beginning with the unacceptable state of the Emergency Rooms at Columbia Presb).  We, the people, need to demand this of our doctors and institutions.  You cannot be afraid to ask for things!  Stand up for yourself!  We have the power of the Internet to share our experiences and we should all start journaling our hospital and doctor visits; how we are treated, the state of the hospitals, etc.  Doctors, nurses, and staff should be held accountable for making you as comfortable as possible.  The boards of all hospitals should get reports from “real” patients about their experiences.

I suggest you print out this article and keep it in your bag, and if you should ever find yourself hospitalized or in an ER, hand this to your nurse and doctor and whoever else you can find and request that you be sent to one of these rooms… for free.