I feel like I had just begun to put my life back together after the past two years.

I felt confident to be out and about. The doctor appointments are happening less, and for the first time in a long time I could see my future.  For so long I just wanted to see a future without procedures, health problems, and scary unknowns –just wanted to live my life with T.  Over the past couple of weeks I felt so free, so unafraid to talk about my future and make plans.

Then I went to Columbia on Friday to see my heart failure doc.  I was so psyched to tell her how great I’ve been feeling.  I felt super confident going in there.  In the exam room she dropped a bomb on me.  Record stops:

Doc: So you’re feeling well?  Fatigue is better?

Me: Yes, I feel great, so strong. Doing so well.

Doc (as she looks through my file):  well, great then, now is the perfect time to go in and fix that valve.

Me:  What?

Turns out I have a leaky valve (I’ve never been told this). Mitral valve Prolapse (which is common in women), is actually a big problem when we are talking about my heart which is already in fragile condition due to the scarring.  Basically, the leaky valve is making my heart work way harder than it has to blah blah blah.  The important thing is to preserve my heart for as long as we can and keep it in the best shape possible (and avoid a transplant). I ask how to fix this… open heart surgery of course.

I became numb and couldn’t really ask anything or say anything after that.  My brain went directly to a picture of me in a hospital bed and all I could think was here we go, this is going to be more years taken away from me.  25-27 is a blur can’t I just be a 20-something year old?

And poof!  Just like that I couldn’t see my future anymore.  I lost that bliss of daring to live my life.  I am so scared I haven’t been able to get it back.

Now it’s going to be a LOT of testing over the next couple of weeks to assess the situation.  We have to see just how bad the leak is (uncomfortable test) and then see how long I can go without the procedure (uncomfortable decisions to be made).  I also have to decide if I even want it!

I cannot believe I am back in this place.  All I can see ahead of me is doctors and tests and hospitals.

Please please please wish along with me that somehow there has been a huge mistake and I actually do not have a leaky valve.  Please wish really really hard.  I am wishing it away as I type this.

This week I am going to try and figure it all out.

This is still fresh for me and I am sure we will get through it.  However, I am still deep in frustration mode right now.

At my Rheumatologist appointment last Friday I was told that I should get my Flu shot as soon as possible.  My Rheumatologist looked at me confused when I said there is no way I will be getting the Flu shot or the H1N1 vaccine.  I could tell he was thinking here she goes again… silly girl with her silly paranoias about triggering the disease.

The truth is, the Flu shot could send my body into “attack” mode and create a big problem for me.  Anyone who doesn’t acknowledge this is a fool in my opinion.  He does what he can, but I am on the search for a new Rheumatologist.  Someone who understands the nature of these silent diseases that creep up on you and it’s too late before you realize the damage done.

Here is why I won’t be getting the Flu Shot.  I feel pretty secure in washing my hands and rinsing with Hydrogen Peroxide every night.

In and out at the hospital Emergency Room today.  It helped that I was under the care of one of the BEST*, most caring doctors I have come across.

I went in this afternoon because I was scared.  Starting at 10 pm last night my left arm was numb and painful.  It was something completely new and I was worried.  Couldn’t sleep all night and decided to call my heart failure specialist out of concern.

My doc calls me back and the phone call was seconds.  She said “I don’t know what that could be. You need urgent care at an ER. Go now you could be having a stroke”.  WHAT?  Nothing else, just a dial tone.  Oh yeah, she said “sorry”.  I was so annoyed.  Typical.

So, I called Dr. Glatter and he talked me through everything and we both came to the decision that given my medical history it’s better safe than sorry.  Peace of mind vs being a worried wreck all day long.  So I journey to the Upper East and trade in a sunny afternoon for a place that makes my stomach crawl and gives me anxiety attacks.

Turns out, they found nothing.  No stroke, no blood clots, nothing.  I still have the mysterious pain and numbness on my left side.  I am generally uncomfortable.

I’m back home and can’t help but feel weird.  I am so thankful to be outta there and able to spend the night in my own bed but every time I am in an ER it’s such a mind trip.  I get taken back to the bad place.  I wish with every ounce of my body that they won’t find anything, that I will not get bad news.  It’s so stressful and awful.

Tonight I am happy.  But, I do feel weird.  I never feel safe or far enough away from the grasp of this illness.

*If you’re in NYC and ever need a house call, Dr911 is amazing.  Dr. Robert Glatter and his crew will come to your place and take care of you.  Check it out.

My beautiful Sunday is now being spent in the ER. I am miserable over this. Not fair.

All afternoon.  Too much in my brain.  Feel way too overloaded.

Not bad news but not good news either. I forget how absolutely Effed UP my heart situation is since I choose not to really dwell on it…. I always pick this pretty garden in between this old chapel and two hospital buildings to sit down and cry in and then I pull myself together cuz now I’m off to the next appointment. I wonder how many people straight up lose it on these benches. I’ve cried here a dozen times. More details to come.

Up at the hospital today for a bunch of check ups. Even though I am feeling much better these days I am still a nervous wreck leading up to these appointments. First I’m with my heart failure specialist and it’s really hard being here. I am in the transplant center and the waiting room is a sad sight. It’s pre and post op heart, liver, and lung transplants. Frail people with masks in wheelchairs. Scared loved ones. It’s really nerve racking. I always need to get in and out of here as quickly as possible. Then my Rheumatologist visit after. Still debating if i should tell him the truth… That I basically took myself off of the Steroids without consulting him first. Tough one.