Ok, we have an answer…

Biopsy results are in and the heart scarring was not caused by a toxin (medication).  So, we do not have any official answer as to why this has happened to the Ticker.  The best I can do is be positive and happy and that will have to be enough to prevent any more progression of whatever this is!

A common theme in my blog/life throughout this whole “event” has been waiting.  I would say the most challenging part has been patience and finding ways to entertain the mind as you await news.  For me waiting is the toughest part and it’s no different today.  Although I have kept my mind busy it’s there… the question in the back of my head nagging at me… what will the biopsy say?!  I know that we are supposed to get answers tomorrow or Friday so as we get closer I can’t help but to be antsy.  The results from the biopsy mean so much right now and I just hope it’s the answer that I am looking for.  If it is, it will be a final relief and I could proceed with getting better.

So, while we wait here is a little something that I found to be interesting.  Earlier today I spoke with a doctor of mine (one of my very good doctors in NYC who is not a cardiologist).  I wanted to touch base with her and bring her up to date on everything since I have been back.  She is a huge advocate for the Cleveland Clinic and she is thrilled I went there and received the treatment that I did.  She said, and I quote “New York State is under occupation.  You had to leave and head to the free world, Ohio, to get the treatment you needed”!  So you mean doctors KNOW that you cannot get good treatment in NYC?  I thought we were this big tough great city —how could we NOT excel in healthcare?   She went on to explain to me her frustrations:  as a doctor who works closely with cancer she cannot even order certain tests to be done on her patients because NY law prohibits it.  She explained other obstacles and atrocities she (someone who cares about healing her patients) encounters.  I only heard a minutia of this and it scared me.  I have lived it and it scared me.  I mean, before this I naturally trusted doctors.  I believed they are all there to help you and heal you and do what is best.  Now, I’m not saying anyone has intentionally put me in harms way but I will say that I have solid proof… when there aren’t any restricitons and it’s not all about corporations and money doctors can actually “doctor” (shoutout to Cleveland).

I share this story for two reasons.  The first being her amazing quote.  I had to write it down because she was so on the money and because more and more I have become aware of motives and frankly, the current world thrives on them.  Second, I want every single one of you to be your own advocates.  If anything ever happens we owe it to ourselves to ask questions, dig deep, and make healing a full time job.  Nothing else matters when you do not feel well.  Once again I find myself about to repeat a cliche you hear all the time, one that I have shrugged off because “hey, I’m 25 I’m practically invincible, I’ll take care of myself when I am old” but it couldn’t hold any more truth: your body is your temple and without your health you have nothing.  Maybe we can all be a bit more conscious of our bodies and be a little nicer to them…

It may be cheesy and cliche to say this but when you go through rough times the people in your life make all the difference. I can’t let any more time pass by as I “speak” to you all every day over this blog without saying thank you from the bottom of my Ticker.  It is an absolute truth that all of you and your support is what keeps me going strong and cultivates my iron clad will to live a healthy, full life.

As you know, it’s been a little rough getting adjusted and back on my feet.  I have not been attached to my phone like in the past rather, I am trying to concentrate on healing.  I have gotten many phone calls from family and I just want to put it out there if I don’t call back right away it is for no other reason than I just haven’t gotten “there” yet. Please do not think that the phone calls are a bother because that is not the case.  My mom even wanted to have a huge dinner and invite a lot of people over and I discouraged her because it’s a lot to take in and deal with in this state.  I look forward to the days I can attend one of our infamous family “ragers” we have so often without thinking twice and getting worried about how I feel and if I will be able to last/attend and not be without energy for days after.  For now, it’s baby steps.

Last night I went out for the first time in what seems like forever.  I cannot remember the last time we went out to group dinner and I was even able to stay for the whole thing.  It was the perfect setting with great people and so the ideal situation for my first time out.  I miss things like that so much and I cannot wait as the weather gets nicer and my Ticker totally heals to get out of the house more and put the hibernation days behind me.  

So, for the daily update:  the strangest thing has been happening with the Kicker.  Since it has been in I have found it very hard to eat.  It sounds like a movie, but I can actually see my heart beat through my stomach (I know, it sounds gross but I promise it’s not)!  It is so strong that it upsets my stomach and I find it really difficult to eat any food.  When I lie on my back the heart beat in my tummy is so strong that it actually shakes my upper part of my body!  So, I called my NY doctor yesterday.  She is my local doctor who is the expert on the electricity of the heart.  From what I have described she thinks it sounds like the leads in my ventricles could be sending impulses and pacing not only my heart but also my diaphragm. Apparently this happens sometimes.  This means of course, my stomach and breathing are affected.  It is not dangerous (she assured me) but she will have to do some “tweaking” and fix the strength of the impulses that the Kicker is sending through my body.  So, Friday morning I will go for my first tune up.  Until then it is light meals and shakes for me.

Hello Everyone.

I needed a couple of days of rest before I got back to blogging.   But, I’m back!

It was the greatest feeling to be home and get into my own bed.  I already felt so much better having done that.  I left the hospital in a tornado…  after thinking I would spend another night there the docs came in and told me I would be able to leave.  Turns out, what I was experiencing that night before I was to be discharged was something called Atrial flutters and they seem to think my Ticker was behaving erratically because of all it had gone through in that past week or so.  It is the same rhythm I was experiencing during that scary biopsy.  It is mostly uncomfortable and left me short of breath but all they had to tell me is that it wasn’t life threathening and I was out of there! 10 days in the hospital was enough.  We literally booked the next flight out and before I knew it I was in NYC.  It was so surreal… I was wheeled out of the hospital, straight to the hotel lobby into a car to the airport where I was wheeled to the airplane, got on the airplane, was wheeled through LaGuardia to a car and before I knew it I was home.  Crazy!

For some reason this whole experience seemed to catch up to me after the fact.  I was generally fine during my time at the Clinic.  I did what I had to do, went through the tests, dealt with the constant poking for blood tests, the interrupted sleep,  etc…  all feeling positive and ok.  Well, something hit me as I wait for the plane in Cleveland.  I got super emotional —I didn’t even see it coming!  The thing that got me most was looking over at my mom and Thomas (Cynthia had taken an earlier flight).  I was thinking about the three of them and what we had all just went through.  It was like fighting a battle together.  I looked at their exhausted bodies, tensed from 1O days of trying to make otherwise uncomfortable upright chairs a suitable place to sleep, their tired eyes, watched them snack to pass the time… I just felt so grateful.  I realize that I could have never got through it all without my “team”.  From that point on I just got to thinking about everyone in my life and that is what has kept me in this bittersweet state that I haven’t been able to shake since I’ve been back.  

There is a lot going on right now.  I am trying to adjust to life with the Kicker.  I am awed by it’s power yet I am still very uncomfortable.  It hasn’t quite settled in and we are getting to know each other.  I wake up in the mornings like, “what is that thing in my chest?!”  Having said that, I believe it is helping me already.  I didn’t realize just how short of breath I was pre Kicker.  I took a walk on Saturday night and it hit me that I was talking AND walking at the same time …. all without stopping or losing my breath and all with a strong voice.  I can project again! I did not even know how weak my voice had gotten.  So, can you imagine what the Kicker will achieve in like, 2 months if it’s done that already?!  I can’t wait.  My goal is to be able to take a Yoga class around the time of my birthday at the end of March. 

There is a lot to be done.  I am working full time on the Ticker project.   I have to orchestrate a whole plan of follow ups in Cleveland as well as with my local doctors but I am happy because I believe the worst part is over.  I look forward to healing while I continue to get to the bottom of things.  We do have tons of information from our trip.  That terrifying biopsy will actually prove to be an amazing pool of information.  From that lovely test we already know that there is not active inflammation in the heart muscle.  This helps us in how we approach treatment; it rules out some nasty drugs that I may have otherwise been on through trial and error to try and stop the inflammation and it tells us that it wasn’t a virus that attacked the Ticker yet something chronic (we now believe this has been going on for some time).   We will have some very important information at the end of this week actually.  They are bringing in a super duper microscope to look at the scar tissue they retrieved from the Ticker during previously mentioned scary biopsy.  Apparently they got a nice chunk of that tissue and they saw something they would like to investigate further.  Basically, it will tell us if it is caused by an underlying systemic problem in my body or if it is from a toxin (aka a seemingly harmless medication I have been on for some time).  If the scarring is from a toxin that is actually good news because we can stop it!  I am hoping this is the reason.  It would answer so many questions. It would also mean that I have control over protecting the Ticker.  I dont’ want to speculate so I will save it all for when we get answers but that scar tissue holds some very very important information and I am sending positive vibes out there everyday that we find it is the lesser of the two problems causing the Ticker to scar.  Let’s all hope so. 

The best news of today?  I get to shower!!!  Yes, as I write this I am 5 plus days without a shower (we couldn’t get the construction site of the Kicker wet until now).  I cannot explain how excited I am to wash my hair!  I think I will feel like a new person!

Maybe I’ll take the Kicker out for a walk.  It’s a nice one outside today…

Update:  I am home!  

There is so much to write and I have a great post to come but first, Rest!  I am exhausted and my Kicker is causing a lot of pain as it gets settled in.  I am going to relax and write when I feel a bit better.

I just want to let everyone know that I am back in NYC.  I am feeling really weird today, it feels like the last 2 weeks have been some crazy dream. Like, it didn’t happen or something.

Be back later! 

Well, in true Lauren fashion it looks like things will be delayed (again).  I was so happy to be discharged this morning but I had a couple pf strange episodes over night and the docs will not discharge me until we get to the bottom of what is causing it.  Basically I have not slept at all.  The first time I had fallen asleep I woke up suddenly to catch my breath and saw that my heart rate was 132 and pressed the nurse button. That is wayyyy high for someone who was sleeping.  It kind of dipped after that and then leveled off but left me with chest pains.  The nurse printed out the episode for the doc to look at in the am.  I was uncomfortable the entire night. Then, about 3 hours later I was trying to doze off into a nice sleep when bam! again!  I couldn’t catch my breath, I sat up and my heart rate was 135.  It has never once been over 100 on the monitor since I have been hooked up here in the room (except for scary biopsy day of course) so it is pretty notable.  This sort of episode has never happened before either.

Now, I await some doctors to make their way to me.  Wait and wait and wait.  I am told it could be a device thing so we are going to get the Kicker checked out today at some point.  I hope we get answers FAST.. I want to be home so badly. So so badly.  

I will keep you posted. 

I’m getting some snacks right now to cheer me up again

Thomas told me yesterday after my procedure that this has been an amazing trip.  I took a while to think about that statement because my definition of an amazing trip would never usually include a hospital stay, medical procedures, Cleveland Ohio (sorry, but it’s true) or any of the like.  But when I got to thinking about it I must say that Thomas was absolutely right; it’s probably the most amazing trip I’ve ever taken.  Medically speaking, we’ve gotten more accomplished here in 10 days than we had over 3 months at home. 

I feel as if I have been transplanted to a world of healing which is exactly what I was looking for.  Walking through the halls, you see more smiles than frowns, everyone says hello and it is an over all pleasant experience.  Now, I miss my city very much and like a true masochistic New Yorker I must admit I am craving a cabbie on cabbie argument, beeping horns, late night delivery, people buzzing by you on the street way too self enveloped to smile or say hi, that sweet smell of street meat… you know, the usual.  But Cleveland Ohio is exactly where I was supposed to be these past 10 days and I am so grateful to everyone here. 

So, the Kicker is in.  Yesterday was a bit rough because it was quite painful.  I keep thinking about this one point during the procedure that I woke up from sedation to feel them pushing the box into my chest.  It didn’t hurt because of the amount of IV medications flowing through my veins but I heard it and definitely felt it and it still gives me the creeps a bit. Brrrrrr.

Today they took the dressing off of the wound site and it relieved some pressure over there.  I am still trying to wrap my head around the fact that there is a metal BOX in my chest!  It looks… not as bad as I thought it would but I am still trying to “become one” with it.  I am in pain but it gets better with every passing hour.  The more I think about it I am so happy to have the Kicker.  It is a fascinating piece of technology.  I went to have it checked today, and they set the pace of my heart.  The practitioner explained everything I could expect from the day to day to if I were to ever go in to V Fib and get a shock.  Overall, I know the Kicker and I are going to have a very long happy and healthy life together.  The Ticker is happy to have some much needed help.

I already noticed a huge difference today when I took a walk around the G unit.  I didn’t get out of breath and completely drained from a stupid little stroll.  It wasn’t until that point today when I realized how good I felt and just how truly icky I have been feeling day to day previous to this.  I am so happy to heal, I cannot wait to do these little things we all take for granted like just walking to the bank.  I feel free again, I was so scared to go outside on my own for fear that I would get an arrythmia and faint, out, by myself.  I admittedly have a crazy imagination and until now I would never admit it but I kept imagining these headlines that would be printed in the back part of the local papers:  “Girl, 25, collapses in front of my cab!”  “Girl, 25, collapses in Bloomingdales in the shoe department” “25 year old Queens girl collapses at Ferrara’s… she almost got her dark chocolate covered pretzels!” Every trip to a doctor in NY increased my fears.  Those days are dunzo. 

Ok, I’ll wrap this one up because it is Project Runway night.   I am very happy, I feel healthy and I cannot wait to get home and see everyone.  I will be discharged tomorrow.

Health and positive vibes

Me

Also I would just like to say that while all of my doctors are wonderful here, Dr. Gary Francis has been a guardian angel.  There are no words for how thankful I am to him.

Celebration in room G91-02 tonight!  G for Gangster of course because I must say, I was tough in there.

I have to make this one short because I am in pain and on a lot of loopy narcotics.

Most importantly I am checking in to let everyone know that the procedure was a success.  I was in there for a little over 3 hours.  The doctors and nurses were true professionals and I felt safe at their hands.  I will give some more deets on the whole experience tomorrow when I am not speaking jibberish!

Tomorrow there is nothing planned… no procedures, tests, exams, etc.  It’s amazing.  So, the Bionic Blogger will have time to post all day long.

*Note, the Bionic Blogger is a name given to me earlier by our close friend. I loved it and just had to put it to use tonight (Thank you SC)!

love and happiness and morphine dreams

The Kicker has (once again and hopefully for the last time) been postponed!

The doctors have decided it best to wait another day to be sure that I am 100% healthy before they put the Kicker in.  Kicker + infection = Bad news so their decision is OK by me!

In the mean time I have been reading up on the bivalve pacemaker/defibrillator (Kicker).  They are giving it to me as part of Cardiac Resynchronization Therapy.  It sounds great.  I can’t wait to feel the effects of a strong pumping Ticker…

Didn’t sleep at all last night so it is time for an afternoon nap. 

Today seemed like the longest day ever.  Not much happens in a hospital on a Sunday it seems; no tests or procedures today, not many doctors coming by to visit like usual.  The hours seemed like days. 

Both Thomas and Cyn are coming down with colds so they kept away for most of the day.  Actually, Cyn did stop by but she wore a mask so she would not infect me with her cold.  Yes, a surgical mask!  It was smart and sweet thinking but also hilarious and I regret not taking a picture of it.  So, please see attached picture for a demonstration by my assistant, Dr. Thomas. (Warning, we are all bouncing off the walls here)!

My mom and I did have fun, we filled most of the day … she gave me a mani and we were laughing really hard.. mostly because we have severe cabin fever!  It’s at the point where we are completely delirious.  All of us.

Here is an update before I go any further.  I mentioned that I had a fever and chills yesterday.  Turns out, they had to put me on some antibiotics.  This was all very annoying; I have been in a lot of pain and just feeling… gross!  The major problem being that this little obstacle will now postpone what I have been waiting for (what seems like) forever… The Kicker!!!  The doctors will not proceed with implanting a device into my chest while I have an infection (duh), so now this has added some more days onto my time here at G91-02.   Hey, at least it’s looking better by the day, there are so many flowers from all of you (thank you) and while it’s not our view of NYC I do have a big window over downtown Cleveland.  So, we have decided to look at it as a “spa like” retreat from the city.  Only in this game my deep tissue massage and sauna will be a 2 to 5 hour procedure under some heavy sedatives haha.  I will have a prize at the end of it though.

So, it’s back to the waiting game.  There is still a slight chance they will do the procedure tomorrow but they will make that decision in the morning —most likey after they draw the first of 438476 vials of blood at around 6 am.  

Ok, almost bedtime for me. I am still not feeling 100%.  The Ticker needs some love.  I’m so proud of her. Even though she is not in top form right now she has really been tough over this past week. Ticker has been the subject of most discussions, she has been poked and prodded and tested and had little pieces taken out of her, she even got the hell shocked out of her on Friday and yet, she is still here for me, working hard.  I am happy.  I am grateful.