Hi everyone!

So we last left off the day before my heart biopsy.  From the very start I was terrified weary of what would be involved in this procedure and I was totally anxious the entire day yesterday as I wait in my hotel room to be taken down.  I was told at 11 am I would be taken “soon”, then sat here trying to keep cool for hours until they took me around 4:30.

Now not to brag but I have come to be somewhat of a pro at these tests and procedures.  I have mastered the art of pretending like I am on a gorgeous white sandy beach lying in the sun while a large needle is coming at my veins.  I talk myself out of being too much of a wreck for the larger procedures and it’s all been very well so far. But admittedly, yesterday I just did not feel right going into this biopsy.  I was uncomfortable about everything; the thought of them taking actual pieces of my heart muscle?! while I’m awake?!  I could just vom thinking about it.

So, here is the tale of the heart biopsy slash one of the scariest experiences of my life:

When I arrive into the cath lab I am told that the doctors will be going through a right vein in my neck (the same one they did two days prior for the right heart cathertization test).  I was already annoyed because while going through the groin didn’t sound like a stroll in the park it would have been so so so much better than going through that poor little vein in my neck again.

They begin.  I am entirely sober and awake for this procedure.  They insert a needle and then a sheath into my vein in my neck and proceed to go down the vein into the right side of my heart.  So very sci fi.

What is supposed to happen during a heart biopsy:

The doctors get into the space in your heart, take 4 – 6 microscopic pieces of muscle and then come out.  Total time with preparation should be 30 minutes. Piece of cake.

What happened to ME (get ready for this one):

The moment the doctor touched my heart muscle he hit a nerve which sent my heart into an arythmia.  He explained that it was an electrical impulse that was essentially chasing itself.  Clearly my Ticker was not having any of this and she was letting us all know.   I was lying completely flat on my back, with my head uncomfortably turned to the left with all of these wiry things hanging out of my neck on the right and I can feel my heart pumping super fast…. 120 (as if you were walking fast).  I can tell this isn’t right and I am talking to the doctor.  He says they are going to try to get my heart out of this arythmia.  He injects drugs (have no clue what ) two different times into my neck in an effort to slow it down.  This only makes it worse.  Still lying flat… heart is at 130…. 140…  I am the most uncomfortable I’ve ever been and now I am getting scared.  I see them conversing and they call in doctors from the Electrical Lab.  The Electro docs come in with a pacemaker and hook it up to the wires hanging out of my neck (I am still awake).  They now attempt to pace my heart.  But, they must catch up to the impulse so the idea is to speed it up a little and then slow it down.  This also, only speeds up my ticker more.  Still lying down, tears coming out, 150…160… 170 I can feel my heart beating in my back.  It’s getting worse and worse and nothing is working.  They even give me a tranquilizer through the IV to calm me down and it does NOTHING. I am looking to the nurse for comfort but look away once I see the concerned look on her face and the fact that she keeps yelling out “she’s back” (referring to my crazy cracky heartbeat).  I am now lying like this while I can see the docs conversing quietly and I know something is not good.  After what seems like hours of laying there with my heart racing the head doc explains to me that since nothing is working they will now have to “cardiovert” me …. aka knock me out with a powerful drug and put paddles on my chest that will shock me back into normal sinus rhythm.  I am so terrified at this point, I remember feeling that drug, my eyes rolling back, and waking up after I had been shocked.  I knew I was shocked because my chest was burning.  Like I had just lied in the sun for hours with only baby oil on only I came to and realized I am still lying on this metal table with everyone staring at me.  The tears are coming, I can’t stop them.  I just want to get out of there and see my mom so badly.  

In recovery it took me a bit to get myself together.  I was told this type of thing happens maybe once a year.  The nurse told me that out of her 5 years working in the cath lab she has only seen this happen 3 times.  I noticed in recovery that I had kept my Uggies on the entire time!  I hadn’t even realized.  I am attached to them since it is soo cold here and they were with me through that intense scene straight out of Grey’s Anatomy or something.  Now, they are my lucky Uggies.

Deep breath, thank God it is over. I hope we get the results we need.  We should find out on Monday or Tuesday.

Last night I was very quiet, in shock mostly, I was not feeling well and had a fever this morning.  I spent most of the day in the hospital bed and am more and more anxious to get everything over with!  Once the Kicker is in, all of this is behind me and we have only healing to concentrate on.

Tomorrow:  Sunday Funday… in the hospital?  We’ll find a way to make it happen, I’m sure.

News!

The procedure has been delayed. I willl not be getting the Kicker today.

I found this out at 6 this morning, my cardiologist called me to say that he spoke with some other doctors who are seeing me and they think it is best I get a biopsy of the heart before proceeding with the pacemaker/defib. As I’ve mentioned before, no one can explain why this has happened to my heart and my doctors agree that a biopsy may shed some light as to what is causing all of this. They have told me my case is one of a kind so I believe they want to really study what is going on here. The doctors have come to calling me “lucky” since I am the only one who has the combination of symptoms that I do. Awesome.

The biopsy will be done either today or on Monday. It is a procedure done in the cath lab where they go in through a vein in my groin (yikes), up to the right side of my heart and take 5 – 8 microscopic pieces of tissue from the actual heart muscle. I know, creeeepy!! But those microscopic peices could potentially have major information in them and I am more than willing to go for it. The reason the Kicker was postponed is because it is risky to do this biospy after that has been implanted.

So, it is a couple more days in the hospital for me. Not ideal but hey, I am willing to wait it out and get everything done that I can here while I am in such good hands. My doctors truly care and they want to get to the bottom of this and all they need from me is patience. I think it’s a fair trade. Ill just stock up on more gossip mags…

More updates to come.

Until then, I’ll be in room G91-02. It’s a private room with a lovely view of Clevland. You know how us New Yorkers roll

When I was a kid Christmas Eve was always my favorite.  It was so magical to me, I was so anxious to get to bed so it would be morning already and we could go downstairs to see what presents awaited us.  There have been other instances like this, where you are so excited and anxious about the following day that sleep seems out of the question; before I leave on a big trip (I remember I could never sleep before I would go to Greece with Sof), the first day of High School, the first day of school any year, the night before you start a brand new job… and tomorrow is about to join that list. It’s funny, while the other events are obviously joyous and a lot of people experience them, tomorrow is one that not so many can identify with.  Tomorrow represents happiness for me because I am looking forward to renewal and a beginning to feeling great again.  Sure, it is a little nerve racking to me.  I mean, I’ve never even had stiches so I am still trying to wrap my head around the fact that tomorrow I will have a metal box in my chest haha. But, that Kicker is going to be my sidekick and my protector and I feel safe knowing it’s there.

I cannot wait to get back to NYC after it’s in there and face Manhattan with my Kicker. I cannot wait to heal myself and start going out more often. I cannot wait put the worst part of it all behind all of us.

I am in wonderful hands here at the Clinic.  I am told I will be taken in anytime between 10 and 2 and the procedure takes anywhere from 2 to 5 hours. I am also so grateful that my “team” is here with me, supporting and taking care of me.  I said that when I wake up I want them all there

Ok, although I am anxious it is time to start winding down.  We are going to watch some tv.  I got moved to a private room (so very VIP) today so it is relaxing and very comfortable. 

Positive vibes.  I’ll be checking in tomorrow!

Love love love

Not me …. not me!!  That is exactly what Thomas and I awoke to suddenly  at 5 am!  It was my hospital roomate and it was an experience to say the least.  More on that below…..

Day 3 of Cleveland Clinic.

Well peeps, I am still here and today was just as eventful as the last.  Let me give you a full report:

They have now moved my procedure to get the Kicker to Friday afternoon.  The reason for this is because there is still a bit of uncertainty as to whether they should implant a kicker with or without a pacemaker.  Having the pacemaker is an advantage because my heart is dis-synchronized.  The pacemaker will synchronize my heart for all walls to beat at the same time  which could potentially (in 65% of people) make me feel better and give me some more energy.  They like to be sure I need the pacemaker because it is a more complicated device all together. The defib is a no brainer at this point because I do need the insurance that it is there just in case (every single doctor says so).  So, to determine this they give a stress test (yes, they are making me excercise!!) to determine just how limited I am with my heart failure.

I went for some more tests today and saw some more amazing specialists and it is still a big question as to why this happened and what went wrong.  We are still trying to figure this out so there is a possibility I will also go in for a heart biopsy tomorrow if the cardio says it is ok.  This is a pretty invasive procedure and they will take a piece of my heart muscle to check out under a microscope… freaky right?!!  So, that may or may not be on the table for tomorrow.  There is an entirely diffferent post waiting to happen where I will go into great detail about an underlying condition that I have which could be causing a lot of this havoc. But that takes energy.

Oh, as I type this I await an MRI which I was told I would get today at 11am.  I am still waiting. All I know is they better not come to take me down to the MRI machine while Project Runway is on

I had to change rooms because my previous roomate was loudly screaming all night.  She was super disoriented and she was saying some really crazy stuff which kept us awake. It was sad but funny at the same time mostly because we needed something to laugh about considering we were kept up and things have been so intense.  She was saying some loony stuff. So, now I am in a new room and my roomate was (she just got discharged) a 27 year old girl who had a defbrillator.  It was cool that I got to talk to her.  Her story was pretty crazy… she had a heart attack and passed out for 30 minutes but her 3 year old daughter was banging on her chest when she fell and she happened to hit her in the right spot and she came to while her daughter was hitting her chest!  Crazy right?!!  She got her defib two months later.  So many stories, so many people, so many hearts, so many defibrillators, this experience has been eye opening.  It also continues to amaze me what modern medicine is capable of doing, it’s given so many people a chance to live.

Ok, it has been another long day so I am gonna cut this one here. I need some rest but here is a pic for you guys. I am in my very stylish hospital gear and I do not go anywhere in this hospital without my Uggies on because they keep me warm and cozy.

Positive vibes

L

Never a dull moment.

Last night after I posted my blog I wasn’t feeling so well.  I had bad chest pains.  Now, I’ve come to know my body pretty well and these chest pains were different than what I usually get so my mom and I thought it would be best to head to the ER (located literally a minute and a half from the hotel).  The chest pains turned out to be just that… pains but, I was kept overnight for observation so the plans have changed up a bit.  As you know, I was due back to NYC this evening.  Not the case anymore:              

The wonderful doctor in charge of my care thought it best that I be admitted to the hospital so I could be monitored closely and (the best part) get all of the tests and procedures that I need done all in one shot.  He said it is so much better to do this as an in-patient rather than coming back here for test after test after procedure.  I couldn’t agree more.  Also, when I am feeling so awful it is a relief to konw that I am under the watchful eye of a heart monitor and nurses all night long.  I think I will sleep well tonight.  That and i have Thomas to keep me company (he flew out here this afternoon) !  Yay! 

I had a weird test today.  It is called a right heart cathertization.  The doctor goes in with a cath through a vein on the right side of my neck and goes down through my heart to my pulmonary artery to test the pressure in that artery.  The doc wanted to rule out something called pulmonary hypertension and GREAT news.. he did!  Good thing because there really is no cure for that and it puts tremendous stress on the heart.  My pressure is 100% normal!  Phew. The test was so odd.  I did not feel pain because they gave me a local anesthesia but i did feel pressure and the sensation when he was sending the cath traveling down through my neck to my heart.  Yikes so creepy!  Good thing I was still feeling a bit of a buzz off the morphine they gave me n the ER because I was able to just deal without getting too nervous. (Sidenote, I complained of a bad headache in the ER and the nurse returned 20 minutes later with.. morphine!! Yes, can you believe?  We couldn’t.  Turns out, not so good to help a headache but great for a few laughs). After the test I waited for a while to get a bed in the cardiac unit and when I finally got settled in it was probably 8 pm (looooong day).  Thomas and Cynthia flew out here which really made my mom and I happy.  It brought my spirits up so so much and I feel stronger with a “team” out here.  I have not had service the entire night and day so I recently turned my cell phone on only to find many many emails and text messages from all of you.  I cannot say enough how much that means to me and seeing those messages brings a big smile to my face.

Some more good news came our way.  I will, in fact, be able to get my defib/pacemaker implanted while I am here.  The big event is set for Thursday morning.  I got to see different models of my new piece of jewelry today and i am so very interested to see how this thing will look once it is inside me!  I am also amazed as to how much it should do for my Ticker and I believe it will be the first step to feeling better (even if it’s just sleeping better at night knowing that I am safe).  I was thinking about this device and I came up with a great name for it.  I am going to call it my Kicker.  The Kicker for the Ticker….. I like it!

Ok, almost bed time for me.  The nurse gave me some percocet for a headache that would not go away so I am sleepy.  

We all say “hi” from the Cleve Clinic