Tag Archives: hospital

A Day In the Life – This is just CRAZY

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I’ve been waiting for a while now to be contacted by the Evalve trial.  I got bloodwork done as soon as they asked for it two weeks ago (after waiting five months to be contacted by them).  They told me they would be in touch right away to get the rest of my testing under way.  Since then… silence.  I even left a few messages for them.
Today I get a call from the assistant of the doctor who is running the trial.  She called, concerned that I didn’t get my bloodwork done.  I explained that I did get it done, two weeks ago, and she should call and ask for it. This was the beginning of a very unsettling conversation:

The very nice assistant then told me I’m “all set for tomorrow”.  Tomorrow?  What is tomorrow? I asked.   Apparently they booked a very big test for me and never told me about this.  No phone call, nothing in the mail, nada.  I proceeded to ask questions.  The assistant explained I would be getting an echocardiogram.  No big deal I thought, I’ve had those before.  But then I thought about it and I asked if it was in fact a trans-esophageal echo (the one I need to complete my review for the Evalve trial –the one I’ve been waiting forever to have done).  This is a pretty big deal to me considering I will be put under anesthesia and I had less than one day’s notice. And sure enough, it is the test I am going for in the morning.  Good thing I know I cannot eat past midnight tonight AND that I would need to bring someone along with me tomorrow.  Because not one person called to prepare me.  How crazy is that?

This all made me very unsettled.  If they can’t even get themselves together and organized to schedule my tests how am I supposed to feel good about any of this?  How do I trust this operation to go into my heart through one of my main arteries and stick a microscopic clip onto a valve in my heart?!!!  It’s scary enough and it’s even worse when you go into a situation where you do not trust anyone because of the rampant incompetence.

I’ve had my share of bad experiences in hospitals so I am already scared of procedures because I have seen doctors act carelessly.  I have a hard time putting my trust into someone’s hands so when stupid stuff like this happens I feel so incredibly helpless.  It makes me really nervous and while I just want to get this over with I am super nervous about tomorrow.  I am headed to Columbia first thing.

I am getting these two tests tomorrow and from what I understand I will then be told if I have been accepted into the trial.  I will then meet with the doctor in charge of the trial itself and ask my questions.  I’m not even sure how I feel about any of this at this point…  It’s all so fast.

Another day at Columbia Presbyterian Hospital

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IRM

(click above to hear song)

I like this song because I feel like it’s an appropriate soundtrack to my doctor and hospital visits.  It evokes this mechanical robotic vibe and it feels very institutional.  Yet, her singing is melodic over it all which is sort of how I try to approach days like today.  There is a lot of harsh reality surrounding me, and I may get upset, but my positive thoughts and strong hope are the equivalent to her soothing tone of voice over the oppressive clanking and hammering.

I read somewhere that Charlotte Gainsbourg came up with the song when she suffered a head trauma and had to go for MRI’s frequently over the course of 6 months.  It was the loud clanking sounds that inspire the rhythm to the song.

Anyone who’s been inside one of those scary MRI machines knows about those sounds.  They add to the already uncomfortable experience of being tied down and slid into a tunnel.  The whole experience is unnerving. Luckily I am not allowed in those machines anymore because of my pacemaker/ defibrillator (no magnets please!).

By the time you’re reading this I will be in my appointment.  Here’s to good news.

You’re joking, right?

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After a solid two years of dealing with the circus that is Healthcare in NYC it takes an extraordinary mess to surprise me at this point.  An extra special feature that can set me off and become annoyed, enraged, or just insulted.

For example, I am keeping calm about my present gripe:   I emailed my Rhuematologist yesterday at 6am after a sleepless night of intense pain.  He wrote back explaining he would call me back to speak with me about some options.  He never called.  Not once. All day long.  This is infuriating, true, but I can’t get worked up over it.  I am so used to it by now.  Today I am trying to get in touch with him again.  Grrrrr

Now onto the showstopper.  I have an issue that is too personal to put on the internet.  There is ONE doctor in Manhattan that specializes in this problem.  I called the office today to make an appointment where I learned the following:  This doctor does not take insurance (not a  surprise), and the fee for your first appointment is $810 which must be paid the same day as your appointment.  WHAT?

$810 is an all time high.  I am in shock.

Evalve?

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Big appointment with my heart failure / heart transplant doctor up at Columbia Presb tomorrow.

We are going to discuss the next step and schedule tests to look close at my heart again to see if the leaky valve has progressed.  We are also going to discuss my options if it has progressed.  Options meaning surgery. (I hope it has not progressed).

Then today I get a phone call that I was supposed to get way back in September.  Yes, I’ve been waiting five months for this call.  It was the office of the doctor who runs the Evalve trial at Columbia.  They say that I am a candidate and they want to get all the testing done as soon as possible because “there is someone waiting”.

When I asked what they meant by that she explained that they only perform this procedure in pairs, for two people at a time, and there is a person who has been approved that is awaiting another person to get it done.  I had a weird reaction to this.  I was really annoyed actually…  I wait and wait and wait for your phone call now I’m going to be rushed into this?  I don’t even know how I feel about getting a clip implanted into my heart.  I’m not sure I even want this!  They are moving quickly but I cooperated since I like to have options.  I spoke with the nurse on the phone who asked me a bunch of questions and explained the process of testing to me.  This is means more time up at the hospital.  Awesome.

Tomorrow I’m bringing this up at my appointment.  I don’t have a great feeling about this Evalve thing so far.  I wonder if I’ll change my mind…

Have I mentioned how cranky I am today?  The pain has subsided but it’s still there.  I am super frustrated and really can’t stand to be inside any longer yet do not feel well enough to go out today yet.  I’m in bumble bee mode.

ICD Clinic at Columbia Presbyterian

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Yesterday I headed up to Columbia to the ICD Clinic.

The Clinic is where my pacemaker defibrillator gets a check up.  I am supposed to go every four months but this time I put it off way too long and it wound up being eight months since my last appointment!

It’s not my most favorite thing to sit through.  Basically a nurse tech interrogates my device by going into my pacemaker defibrillator through a special computer.  This always freaks me out big time.  While in the “system” as I like to call it, the nurse creates a print out of all of my data since the last interrogation and then checks my leads.  This is where I get queasy.  I have three leads (wires) so she takes the time to test each one by bringing the wire up to a certain intensity and then back down again.  You can feel each chamber of the heart speeding up as she tests it and then going back to normal.  I’ll never get used to feeling my heart beat fast (as if I were running) while I’m lying on my back.  Creepy.

Up until now there has never been an episode recorded.  Thankfully, I haven’t been shocked (you are shocked if you have an arrhythmia or if my heart beat goes above 180), but my device records all episodes where my heart goes above 150 and there were a bunch this time!  Confusing for someone who doesn’t workout or climb stairs.  There was also one tiny “blip” as they called it.  This I did not like … I had a “bad rhythm” for 2 seconds.  Scary because if it happened for 8 seconds longer I would’ve been shocked.  A huge fear of mine.

I asked to have my own copy so I could study exactly when these episodes happened.  The technology is so incredible it actually can tell you the exact day, time, and for how long these episodes occur:

The crazy arrhythmia is the very first one at the top.  Then, you can see as you go down the list how fast my heart was beating at different times it was recorded.  162 is really high.

I’ve combed through the list.  I wanted to see what I was doing during each episode.  I can see a lot happen between midnight and 2 am which confirms all of the times I wake up in a panic with my heart racing.  It actually wakes me out of a deep sleep.  Anxiety? Is it something else?

One thing is for sure, this has really messed with my head.  I know it isn’t logical but now I am scared to exert myself.  I feel like it will bring on an episode.  I think of how often I’ve been driving by myself lately and it’s so hard to continue doing so with this information.  I can’t even get my mind together to go to yoga tomorrow as planned.  This is just a big deal to me and it’s setting me back right now.  I feel scared and I really don’t want to.

I just wish my heart was protected.  I wish it to be strong and safe and episode-free.  I also wish this flood of emotions will dull down.  It only takes a little thing like this to work me up again.

Thanks Dee for coming with me xoxo

Prepping for a big doctor appointment tomorrow

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I tremble
They’re gonna eat me alive
If I stumble
They’re gonna eat me alive

Can you hear my heart beating like a hammer?
Beating like a hammer?
Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps
Beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer

Waiting

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While I am happy to say I have had a pretty good run the past several days I am not so great today.  I have a big day at Columbia tomorrow and I am always anxious the day before I head up to the hospital. I hate being up there in those buildings.  I am instantly transported to a “bad” place.

The thing is, I am feeling so great and then I am put in this position where I am a “patient” again.  “Sick” again.  My focus today and tomorrow is just being me, as I am now, and not letting this all get into my head.  I have to stay up and pretty much ignore what is going on.  Pretty hard when I have to drink some nasty stuff, get xrays, talk to doctors, etc…

One of the things I have going on that I haven’t mentioned here yet is a trouble swallowing.  It’s part of the Scleroderma… your esophagus loses its motility.  Stops working properly.  Often I cannot get food down without water and even then it hurts.  Sometimes swallowing water is a challenge!  We have to look closely to see what’s happening because I eventually need a “trans-esophageal echo cardiogram” of my heart to take a closer look at the leaky valve.  Of course, they can’t shove equipment down my throat until they do some tests to see what is going on down there that is preventing me from swallowing.  Annoying.

So, I prepare today.  Feeling a bit gloomy from the weather and I just want it all to be over already.

ER

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brianvan:

fatmanatee:

beansy:

Miserable

Lauren, you will get better!  I still owe you some pizza.

Right before your cellphone died?

WHY WAS MY PICTURE REBLOGGED?!

For those of you who do not blog or may be unaware, I have used the site Tumblr to power this blog.  I started with Tumblr because it was simple to create and organize my blog here.  Over the past year Tumblr has grown into it’s social networking capabilites and a community has developed surrounding people’s blogs, and other’s comments and “re-blogging” of said blogs.

I have never participated in the social networking part of the site.  I keep to myself and to my own blog.  I only write about the health aspect of my life for my own “audience”.  Since I do not comment or reblog others’ posts I assumed I did not court those who blog simply for attention and for being rotten human beings.

As mentioned, I started my blog for a very personal reason with hopes that I might be able to help those suffering with an autoimmune disease and raise awareness for this epidemic that is sweeping America.  Never did I ever think I would come to my computer to check on my blog and find that someone has used one of my posts as an opportunity to make fun of me or make some sort of (unfunny) joke. It was in one of my darkest hours… so scared, in so much pain that I take a picture of myself in the ER after many hours of suffering.  Can you imagine how surprised I was to find that it had been re-blogged across the Internet as a joke?

I have made the decision to stop my Tumblr immediately.  I will be moving my blog over to a platform that I am more comfortable with, and will be posting there from now on (I will notify friends and family of my new address).  Sure, people can argue “Lauren, you risk this when you put yourself out on the Internet.”  Sure, understood but lines do have to be drawn somewhere and this is mine.  I can at least take my content and my story to a place where I do not have to witness a childish community of bored people pick each other apart from behind a screen –-very brave indeed, everyone.

You can find the reblog ABOVE that has angered me so.

This “JOKE” was posted by a Brian Van.

I would like to think this person was not personally attacking me (since I do not know him at all), but maybe all you Tumblrs should think before you reblog. You’ve taken the meaning out of a blogging platform and turned it into a glorified chat room.

Lastly, thank you to a true friend who defended me.