November 30, 2009

From Friday

http://savelaurensheart.com/2009/11/25/refills-day-3/

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November 18, 2009

Stem Cells and Scleroderma

In light of all this recent talk of open heart surgery I have become absolutely determined to find an adult stem cell treatment for my heart. My idea is to wait out the surgery for as long as I can and hope hope hope that there is a stem cell option to repair my scarred heart.

The idea is to treat the underlying problem if we could, rather than going in and sewing up a valve to repair it (even though the wall to which this valve is attached to is still thick and stiff with scar tissue). Repairing the valve is not going to fix my heart.  I see it as a band aid.  A very serious terrifying surgery for a band aid.

Stem cells on the other hand have the possibility to truly heal my heart.  They create NEW tissue which could mean a potential for fading out the scar tissue that covers 70% of my heart muscle AND fixing the leaky valve in one swoop.  Of course, it’s not as simple as I make it out to be…

For one, any stem cell treatment I’ve come across where they inject the new cells back into the heart has been controversial among my doctors.  I haven’t gotten the green light from anyone to go through with these things.  They tell me the technology is simply “not there yet”.  C’mon technology!  You have to get “there” because I’m so counting on this.

There is a new website dedicated to “educate and spread awareness about the potentials and successes of adult stem cell therapies.”  I’ve been combing through since I came across this site at 9 am.  They are even doing stem cell TRANSPLANTS for patients with Scleroderma!  It can reset your immune system!

I am hopeful.  Extremely hopeful.  Now, if I could just find the right one for me and my ticker.  It’s the one wish I make when I see my birthday on the digital clock, or a blow a loose eyelash from my fingertip, and right before I go to sleep at night and first thing I do when I wake in the morning.  I just want an answer, to feel in control again..  something to DO to help this go away.

http://www.stemcellresearchfacts.org/

*Any information is always greatly appreciated.  You can comment on this post at SaveLaurensHeart.com or email savelaurensheart@gmail.com

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November 17, 2009

I know in some ways I am getting better. Little by little.  I believe my illness is regressing.  I’ll have to spend some time repairing the disaster area it left behind after it ravaged my body but I’m up for the task.

Whatever I have to do to fix these things, especially my heart, I will do.  Every ounce of me is willing to fix it all and move on to feeling healthy.  To living my life.

I always think of my body when I listen to this song.  It sounds silly but I picture this one a song my body would sing if it could.

Good times for a change
See, the luck I’ve had
Can make a good man
Turn bad

So please please please
Let me, let me, let me
Let me get what I want
This time

Haven’t had a dream in a long time
See, the life I’ve had
Can make a good man bad

So for once in my life
Let me get what I want
Lord knows, it would be the first time
Lord knows, it would be the first time

-The Smiths

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November 16, 2009

Denial?

As you know, I have been spending a lot of time visiting my doctors the past several weeks in light of the newest heart situation.

I was upset last week when my cardiologist pointed out just how big a deal this leaky valve thing is.  I chose not to dwell on it but the fact that it went from about a .5 in May to a 2+ or 3 now is troubling (4 is severe 4+ is immediate intervention).  It’s no secret I’m scared and until then I never actually truly remotely considered going under the knife.  Now, I’ve introduced it as a possibility in my brain.

Over the past several weeks whenever these docs ask if I have symptoms my answer is no.  “I feel great!” I tell everyone.  But last night I was shocked to realize that maybe I’m not so great… I spend so much time convincing myself that I am “OK” that it hurts to look at myself and realize maybe that’s not so true.  Have I been in DENIAL?

I was with a group, everyone my age, and we decided to walk through the East Village because it was just such an amazing November night.  Golden leaves, purple sky, our electric city .. it was magic.  I was determined to make it to our destination on foot.  I had to stop twice (Every 6 blocks or so) because I was out of breath, weak, and shaking from fatigue.  I looked up at my group and not one of them was so much as breathing heavy.  Both times I would say “guys, I gotta stop” and they did, and they all get it, and they never make me feel bad for it.  But I couldn’t help it…  I felt so weak … so “sick”.  Ugh.

I tried to stay up but the rest of the night I wasn’t myself.  That simple 11 block walk was too much for me!  I was so sad not to mention worn out.  When I got home I lie in bed awake for hours.  I was mourning the days when I didn’t have to think about these things.  When I didn’t even have to THINK about walking.  What do I do now, I thought?  I am 27 what happens in 10 years?

I know I have to slow down and “take it one day at a time” as every single healing book advises,  but right now I’m just sad and really angry that this is happening again.  I want to walk walk walk, and soak in life, soak in delicious autumn nights like the photo I took below.

I will do anything so that can happen for a very long time to come.

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A big reason which keeps me coming back to write and share my experiences here is to promote self advocacy when it comes to your health or the health of those you love.

When things got bad with my heart I learned quickly that if I didn’t take control of my health I would be in a seriously terrible position.

Videos like the 3 below inspire me because it’s all about knowledge.  We have to be curious, ask questions, and do what YOU intuitively feel is the right choice for YOU.  Doctors’ diagnoses will scare you, you will innately want to take whatever will fix it fastest, but that may not be good for you long term.

I have used the last year to take myself off medications that I feel were doing me more harm than helping.  Many of my doctors disagree with me.  I also made a decision that I will not get a flu shot.   All this time I’ve been working hard to get the toxins OUT why would I inject poison back in?

The below may not be for everyone, but I give homeboy big respect for his passion and calling out the monster industry that is pharmaceuticals.  Courageous.

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November 14, 2009

my deepest wish, my ultimate goal, the dream i dare to dream



A Healthy Ticker

I got this image from the amazing bunnynico .  thank you.

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November 12, 2009

SaveLaurensHeart.com

The new Save Laurens Heart site is up and running!  It is a major work in progress, with a lot of design work yet to be done.  Can’t wait to add some love to it.

I will still update my Tumblr on the regs.

With this journal reaching 2 years, I wanted my own space, something fresh where I can continue to document this ride.

Will you Tumblrs come check it out?

http://savelaurensheart.com

Lots of love

L

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Fluffy blueberry pancakes with warm maple butter… Yea, maybe it was worth it

Fluffy blueberry pancakes with warm maple butter…

Yea, maybe it was worth it

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My own worst enemy sometimes

I haven’t been feeling well.  There is definitely a flare up going on.  Unspecific Inflammation as the docs call it.  It means I have inflammation in my body, they aren’t sure why or where, and it makes everything painful.  The rain exacerbates it to boot.

When it’s really bad I consider going back on the ROIDS but then I remember how off-the-rails-insane I was on those meds and I reel it back in.  I just have to deal.

All I want is comfort, relaxation.  I found it in blueberry pancakes today.  I do not eat much sugar anymore but I just wanted something familiar and warm.  Something that reminded me of being a kid, feeling great with lots of energy.

Now I sit here blaming myself for my pain and feeling incredibly guilty for eating sugar.  Sugar directly causes inflammation.  I know this.  So why do I still go for it?

My head is so messed up from everything.  I enjoyed them going down but the guilt is too much to sit with.  This is crazy right?  Doesn’t make sense.  But it’s my life right now.

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November 11, 2009

Overload

Cardiologist yesterday.  This Doc is old school.  He’s at the top of my list when it comes to doctors I trust.  We looked at my heart over the echo cardiogram machine.  We checked out that leaky creaky valve.  It is, in fact leaking much more than it did at the beginning of the summer (this Doc had noticed it then, but it was so insignificant he didn’t mention it or worry about it).  He said it was moderate, giving it a 2+ to 3 (4 or 4+ is severe).

He did mention that the leak will, over time, put extra stress on my left ventricle (bad) causing it to dilate and become stretched out and damaged (very bad).  At that point there is nothing that can be done to preserve the heart.  Then we’re talking transplant.


So, the idea is to fix the valve (first they have to determine if they will be able to even do so), and keep the heart intact and pumping efficiently.  The only way to fix it according to the docs I trust?  Open heart surgery.

I am still wishing it all away.  Wishing that my valve magically goes back to closing up tight when it contracts.  Wishing I didn’t have to say or type the words “open heart surgery.”

I have a couple of plans up my sleeve and there are a few more tests to be done before any decisions are made.  My doc said yesterday this isn’t an easy decision.  Huge understatement there.

I can’t help but to be upset over the news.  Upset that my Ticker is going through such a tough time in there.   Upset that my life has been doctors doctors tests doctors for the past 5 weeks.  I need OUT for awhile.  It’s messing with my head.

Tonight I convince myself, mind and body, that I am perfectly healthy and my heart is whole, strong and untouched. If I truly believe it my body has to as well.  Right?

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