Tag Archives: heart

Process and Prepare

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It has taken me about this long to normalize after last week’s hospital stay.

Intense is the word I’ve been using to describe it.  I was treated very well at Columbia Presb but I also had a lot of crazy stuff done to my body within the first two hours of being admitted and I feel like I am just recovering from it.  They immediately sedated me and did a test  (a TEE) where they stick a camera down your throat to get a close look at the heart.  This was to ensure that I hadn’t developed any blood clots during that time that my heart was bugging out –atrial flutters, as they call it.  It felt like my heart was going to pound right out of my chest and I have no idea how I stayed like that for three days before going into the hospital.  I get these things in my mind, you know? I get determined, and I decide that my heart will correct itself.  Well, when the third day came and I couldn’t even stand I knew it was time to surrender and listen to my doc.  Off to the hospital we went.

After this first test (luckily there were no clots) came the big show.  Cardioversion.  This is when they shock your heart back into a normal (sinus) rhythm.  Like in the movies when you see them say “clear!!”  Anyway, they give you a super heavy sedative for this one and you don’t know what happened until you wake up with small burns on your chest from where you were shocked.  I felt much better after this since my heart wasn’t racing for the first time in days.  Yet, there was still something remaining…. a meeting with the surgeon.

I had been avoiding the cardiothoracic surgeon most of the summer.  Even though this open heart surgery is hanging over my head I tried to pretend everything was fine and have a fun time.  Turns out you can’t avoid reality forever.  After a talk with the surgeon, my doctors, and a weekend of many phone calls and a year of research under my belt, I have decided to go ahead with open heart surgery to repair my (mitral) valve.  Last week was a clear indication that I can’t put this off much longer, there is too much at risk … if that happens again it could significantly weaken my already fragile heart.

So, once I made the decision to get the surgery I went into business mode.  Getting tons of stuff done, my records sent out, preparing, talking with my family.  I want the best mitral-valve-repairer in the US.  I want someone who has done hundreds of these surgeries, an expert on repairing the mitral valve.  It is very important since I am young and I hope this will be a badass “band-aid” to keep my heart strong enough for 10-15-20 years before I have to make any more major decisions.  I’d like a chance to live my life without this heavy decision and scary surgery hanging over my head.

In true Lauren fashion, now that I’ve made up my mind I want it done asap!  We are looking at this winter, hopefully January so that my 6-8 weeks of recovery is done while the weather is cold and bitter. I would hate to miss out on summer weather.

Back to my full-time position now.  The phones haven’t stopped since I’ve been home.  I want to be sure that anything I can have control over is done to my liking. Sure, there are tons of emotions; I don’t really sleep from nerves, and I am super scared to think about being cut open or waking up with a tube down my throat, but I haven’t allowed my brain to go there yet.

For right now it’s all business.  After that I can cry and be scared.

Pop Heart

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Wow, I’ve been slacking when it comes to posting all of the beautiful hearts that are streaming in!   They are piling up so I plan to post some every day this week…

Today’s heart is an amazing way to start the week.  It is so powerful and FUN. It put a big smile on my face.

Thank you to Nadia who sent this in from Singapore…  much love.

Innocence

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Here are some hearts from the kids that sent them into me a couple weeks ago.

I took all of them and just sat in the middle of the colorful hearts on Saturday.  I could feel the love, I could see all of these sweet little 1st, 2nd, and 3rd graders coloring away just to make me and my heart smile. It’s amazing how much I am lifted just by looking at these.  I spend time with my hearts every day.  Morning and night, they help me picture a perfect healthy heart inside of me.

Even more amazing?  Some of the messages they wrote to me… Enjoy.

“…are you a christian?”

don’t be sick ever again!

so precious

i hope the sickness goes away soon

don’t be worried

be brave

there is always hope

don’t be scared

so sweet

don’t be scared

well wishes and a sad face

“get healthy. or make a 1,000 paper cranes and you get one wish from the gods”

sparkling heart!

“we could keep your heart healthy by eating vegetables and fruits”

“drink a lot of water and eat fruits”

“…if you have no heart you cannot breathe”

“you have to eat fish and crab”

keep your heart healthy by eating fruit

vegetables milk and exercise

a beautiful freehand drawing

Pump it Up!

thump thump thump

i love his illustration

rainbow bright heart

dude!

stay healthy be safe

a heart that shines

admiring all of my hearts

feeling loved

Lauren’s Healthy Heart Project

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I finally have an address as to where you can send your completed hearts.

Of course, you can email the finished products to me at savelaurensheart [at] gmail [dot] com, but you can also send them to me the old fashioned way:

Lauren Del Vecchio

166 Allen Street PM BOX #23

New York, NY 10002-2110

I can’t wait to get more Healthy Hearts.  I am going to make a collage project out of them.

Here are some from this week…  I love them all so much.


Lauren’s Healthy Heart and Perfect Valves

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A big part of healing my heart involves a bunch of different exercises that I do on the regular. I’ve found the latest one to be a lot of fun and I can actually witness it helping me out, training my thoughts to focus on only one thing: my heart is healthy! My “assignment” was to find an image of a healthy heart, make a bunch of copies, and color the heart every night before bed.  This way, when I picture my ticker I picture a healthy beautiful heart with perfect valves.  The idea is for my mind to take this image and send the message to my body, which will then follow along and create this healthy heart inside me.  It’s all about believing to the core that my heart is perfect (or will be soon).

I took it one step further and started to ask my friends to color along with me when they come to hang at my place.  Most of them get really into it (I think coloring reminds us all of being a child), and this way I have others picturing my heart as a healthy perfect ticker (also, turns out coloring is very calming).

Then, I had another idea! I figured I could post them up here and give all of you the image to color as well!  This way, every one of you can help heal my heart along with me. You can color the hearts and think healthy thoughts as you do so.  Your collective thoughts will be absorbed into all of these wonderful images and sent my way and I’ll get better and better!  It would mean so much to me.  If we all concentrate on this healthy image we can truly create a shift, a difference in my body.

Then, you can send your finished products to me!

I’m going to turn this into a project and may even make a collage of all the healthy Lauren hearts I receive so I can stare at them every day –and I will definitely post them up here for everyone to see.  I will be posting a P.O. Box address as to where you can send the colored hearts here on my site later today.   I hope I get some!

For now, here is the link to where you can find a black and white image of a healthy heart with perfect valves.  It is ready for your imagination and colors and good intentions.   Underneath the link are some images my friends and I have colored so far.  I think they are all amazing and gorgeous.

For heart image click HERE!!!






Discarding my Obsessions with Understanding Death and Illness

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Today, another step in a positive direction;  I’ve officially turned off my Google Alerts for the following keywords:

  • Scleroderma
  • Mixed Connective Tissue Disease
  • Pacemaker Defibrillator
  • Heart Failure
  • Autoimmune Disease and autoimmunity
  • Lupus

Sure, it’s great to know what’s happening and at times I even find articles within these alerts that I write about here, YET they do more harm than help on my mental state most of the time.   Every single Scleroderma alert typically opens up with an announcement of someone’s death that is covered in a small town newspaper.  It talks about their fight with this incurable disease, and how this good person didn’t stand a chance against it… and while I purposely don’t let it affect me, it must do damage and terrify me on some level because I think of them from time to time.  Really though, who needs to read about death every day?

The thing is, I’ve gotta keep my head in the “game”, and my healing and positivity game when it comes to my condition is pretty on point right now.  I’m happy to let these obsessions go.  Once upon a time I felt like if I read every single piece of information regarding my condition(s) available out there on the web I would miraculously cure myself.  Like, if I could just wrap my head around these illnesses, or narrow it down to the very second I got ill, or my heart started failing, and somehow make myself understand, I would make it all disappear…

Happy to be at this point.  Baby steps, but progress nonetheless!  The only Google Alert that I kept?  My fave, Stevie Nicks.

The “What Nows?”

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I find myself in such a new place right now. Feels like I am completely starting over and to be honest, I am feeling a bit lost.

Clearly the past three years have thrown me for a loop.  Whatever life I was living came to a screeching halt and got flipped upside down and shaken and stirred and sent on an insane roller coaster ride the second I heard the words “Lauren, your heart is pumping at 15%.”

While it’s true that I wish I never had to witness my body struggle with illness and heart failure, I am grateful for the transformation I’ve watched happen.  It’s changed me tremendously and taught me things about myself that I may have never otherwise learned in a lifetime.  True, I am grateful every day, but I can’t help but go through bouts of frustration with my “What Now’s?”

Since I am feeling better (and better and better and better), I am slowly gaining the luxury of living outside of the survival mode I’ve been in for so long.  Questions like “what is my passion?” and “what will fill me creatively, or  intellectually?” are beginning to surface.  It’s like going through a rebirth of sorts, viewing the world with endless possibilities all over again.  It’s overwhelming in a good way.  It’s simultaneously terrifying and liberating, and all of the by product emotions that come with those sensations.

The strangest part about this is living “in between” worlds; the world where I see myself as a healthy human exploring my future vs. the world where my sensible side reminds me not to “push it” physically and to keep up with my health regimen, doctor appointments, and all of the necessary upkeep of researching my medical options (open heart surgery in this case). This balance is so illusive!  Two weeks ago I am feeling amazing and free and healthy, making big plans –only to find myself in bed for most of last week struggling to work up energy to buy some groceries or even eat them.

What will this week bring?

Frustration

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I’m at my best when I stay far away from the doctor’s offices.  Unfortunately, I cannot stay far away for very long considering that I have a standing appointment with my heart failure specialist at Columbia every three months.  They like to keep a close watch on my ticker since it is quite the mystery…

In between appointments I keep my mind in a great place.  I truly believe with every cell in my body that I will heal myself, that my heart will improve –if not heal completely.  I work really hard with different healers and holistic doctors, I do my own work, I read and research.  But most of all, I believe and I stay positive.

There’s nothing like a trip to the hospital to drain that from you.  It’s like going into battle for me.  Simply walking into the hospital is enough to give me an anxiety attack.  I prepare mentally for the worst and I put up a shield so no words can hurt me.  Not that my doctor wants to hurt me but their “frankness” can be a lot for anyone to handle.  For instance, this time around a single sentence is what stung the most; when I asked my doc what she would do if she were me in this situation she began looking through my files and started her answer by saying “well, eventually we are going to have a problem…”  meaning, according to her medical training my heart is bound to only go in one direction.   She’s the expert, that’s why I go to her, but I just can’t think like that. No way.

So, here I am in the aftermath of a trip to Columbia at the end of last week.  Part of me has to be sensible and prepared so I do my research and consider what we’d have to do in the event that I do need open heart surgery to repair my valve.  I hate even thinking about it, but it would be stupid of me not to.

My current problem is how do I do both?   How do I believe and stay my own course of healing while making preparations for the sensible world of western medicine?

I’m very cranky today.  Sometimes I get incredibly fed up with having to make decisions about my health/my life constantly.

Beginning of the Month = Refills on my Meds

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I am very happy to say that I have cut down my meds to the bare minimums.  No more chemo-like toxic drugs, no more steroids — only the very necessary that I need for my heart.  Having said that, it’s still more than your average twenty something year old.

I stay away from taking anything that I absolutely do not need and I have taken myself off of things the docs insisted I “needed” yet I found to be making me SICKER.   There are days when I need painkillers (unfortunately I still have bad days), and there are other sorts of meds that I take as needed when a crisis arises, but for the most part these medications are not ruining my quality of life.  I’ve gotten used to the heart meds and have figured out a good schedule to take them throughout the day (the intense drowsiness and low blood pressure they cause used to make it impossible to get out of bed sometimes… and forget about standing up too quick)!

Thought I’d share a couple of shots of my medicine and the drawer they live in!  I took this opportunity to clean out that drawer and found a couple of stragglers…

Found !  Leftover steroids a.k.a THE ROIDS a.k.a. crazy pills.  Sure, these little guys got me up and running while I was still very weak and experiencing lots of pain but that came at a cost:  my sanity!  It’s amazing what these tiny pills can do to a person.  They made me a cranky, irritable, sobbing, mess.  I had to taper off them before I completely lost my damn mind.  Straight to the trash can little suckers!

Do not lie down for at least 10 minutes after taking this medication.

Dizziness.

May cause headache.  May cause blurred vision.

Heart protection.

Looking forward to the day I can use this drawer for jewelry and makeup… It will happen.

The Pacemaker Defibrillator on Display

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It’s that time of year again when layers of winter clothes can no longer hide the metal box in my chest from the rest of the world.

The first couple of hot days that I wear t-shirts or tanks are always quite strange.  It’s easy for me to forget about my pacemaker/defibrillator (I call it my “Kicker“) while I’m out and about, because it’s just part of my body now.  But today was an eye opener.  I see people staring at my chest wherever I go;  kids wondering what it is protruding from my bony clavicle, the bank teller, the girl in the shop, and the list goes on.  People try not to stare but it’s the double take that gives them away.  I can actually see their thoughts taking form in their brains trying to comprehend “what IIIS that in her chest?!“  (Also, if they just asked I would be happy to show off my high tech piece of machinery).

I’ll get used to it just like I have every other summer since the Kicker was implanted –I just forget how “naked” it feels now that I have nothing to cover it up with.

Yet, I’ve always made sure not to hide my Kicker.  I am proud of her and I find that if you walk through life feeling ashamed of something it will do some damage to your psyche in the long run.

So, stare away everyone.  This Kicker is keeping my heart healthy and strong and pumping every day.  It is there to tell you that this woman is a warrior.