It’s a gorgeous day today yet I have spent/am spending my day in a waiting room in a PINK gown. When I wait in waiting rooms forever I think about all the time added up and how many days of my life it has taken up so far. It would be interesting to do the math. So far an hour long and counting. Why does every radiology place in the city run late? Mom is with me again today. Oh, maybe I’m cranky pants because I also couldn’t eat before this test so I am on zero food during this waiting game. Awesome.

it’s only tuesday and i already feel like i’ve been through an entire week for some reason.  right now i feel like i have this neverending project ahead of me (my body) and it is exhausting.   aaaaaaahhhhhhhh! that’s how i feel right now.

so, let me bring everyone up to speed.  yesterday’s stress test was unsuccessful.  the point of the stress test is to push yourself so they can measure a lot of things mainly how much my heart can do under pressure.  they could not get accurate readings from the test because i did not get to the point where they could get accurate readings.  i guess you could say i freaked out a bit.  the last stress test i took was in Cleveland before i got the Kicker. At that point I was at 50% capacity a.k.a not good.  since then, i haven’t done anything “aerobic” —i really haven’t felt strong enough to work out and i’m very sluggish. 

i know this isn’t logical but i kept thinking that if i got my heart rate up something bad was going to happen.  like, i am so scared to feel my heart beating fast and i am afraid i’m gonna have an arrythmia or faint or both not to mention how uncomfortable a stress test is!  they pinned my nose closed so i could only breath through this apparatus you wrap your mouth around. it’s all very scuba diver meets gym and i don’t like doing either of those things to begin with!  (it’s true i tried scuba diving back last april and i freaked out then too).

i also got the results of my echocardiogram today and it looks exactly the same as the last couple i took. they tell me my EF (the amount my left ventricle is squeezing) is around 35%.  this is a good thing compared to where i was 6 months ago (15-20%).  I actually got happy at this number (although the nurse tells me it’s all subjective and the number depends on the person reading it) The meds and the pacemaker have a lot to do with the improvement but it has plateaued since Jan.  Basicaly it’s the same as far as the doc is concerned.

I am scheduled for another stress test on May 2nd where I really have to push it and give everything i have to see just what the ticker can do now.  yikes.

now, all this transplant talk has had me nutty.  it’s all happening so fast.  i agree that it is the smart thing to do to begin this long process of getting on the list. i agree it’s a smart idea to be on the list. however, i feel some people already have me on the transplant table.  i would like to make it very clear no matter what anyone says doctor or non doctor:  I choose my own heart first. I am going to try my hardest to make this one work.  Of course, I am lucky enough to be in a position where I am not in a hospital hooked up to machines and waiting for a heart.  And because of that I will keep working.  I try so hard everyday every way I can.  I believe that there is still a lot of healing left in me.  I will do everything and anything I can to get my heart to sparkle and bounce back. It can happen I know it can.  I know that scar tissue will never come back but since I am such a rare case I am thinking my ticker will find a way to bounce back and just have the scar tissue as a unique accessory.  It can happen. It can.  I need positivity, I need people to believe in me and be positive with me.  I talk to my heart everyday, maybe you guys can send it a message too?  Maybe she needs some encouragement.  Medical technology is amazing, I am living proof (with the Kicker) and I am not knocking transplants.  But the truth is you have one heart and it’s yours and no other will ever be like it.  Eventhough mine is scarred and it’s been under a lot of stress I still love it and I want it as a part of me forever.  I have to get better I just have to.  

Reading that transplant binder i pictured a couple of days ago scared me to the core.  terrified.

another test tomorrow. a stomach test this time.  the heart failure affects a lot of other things and my stomach hurts after anything i eat. actually even before i eat. so, back to getting some answers. 

lots of love to and from the ticker.  

L 

as you may suspect, friday’s appointment took a lot out of me and there is plenty to address from that.  i went from being exhausted to sad, to confused and sad again —i needed a good weekend with good people to take my mind off things. there was just SO MUCH to process from that doctor appointment. i actually woke up crying on saturday morning. is that even possible?  but i had a great saturday with people i love love love and a great dinner with my fam tonight so i am feeling strong and positive.

i’ll get down to the gritty when i have the energy.  for now, i am saving mine for the week ahead.  it’s two tests up at columbia presbyterian tomorrow.  we are going ahead and starting the long process of the heart transplant list.  i have a stress test and then an echocardiogram.  should be a crazy afternoon.  then, it’s a doctor’s appointment every single day of the week after that. fun fun fun!

heads up.  as of saturday, my crew came over and there is an actual fundraiser that i can speak of!  we are planning one for late june, date to come soon. my goal is to make it a really fun party to celebrate life yet raise awareness for scleroderma and heart disease and what i’ve gone through at the same time. i want the people i love to be there and i want to have an amazing 3 hours where everyone is smiling.  i want it to be very “me” so i have become involved in the planning.  i hope everyone can make it.  more details as they become available but there’s some fun stuff i can’t wait to share with you all!  thank you to my saturday crew. you cheered me up so much when i needed it most.

now it’s time for some mental relaxation.  a funny movie on the couch with mas.

i’m sending love to all of you this week. it’s your energy that gets me through these tougher times. i’m thankful for you. each and every one.  

love Lauren 

this has been quite a special annoying intense 2 weeks.  ups and downs, feelings coming out of nowhere, dealing dealing dealing, doctors, new friends, old friends, sleepless nights and tired days, dealing dealing dealing — and always support from you, the ones i love and that love me.

i’m taking all the love you send me and storing it up for tomorrow.  i want to feel strong and i haven’t in quite some time now.  i WILL feel strong tomorrow. i’m promising myself.  it’s a big day, going to a doctor that we have tried for months and months to see.  she is the real deal, heart failure specialist and the best transplant doc in nyc.  i’m headed up to the nosebleed section, columbia university, something like 168th street.  i keep calling it the bronx haha.  anyway, i’m excited to see her.  hopefully i am not disappointed. 

the Kicker is bothering me a bit today. sometimes when i sleep the wrong way on my left side it get’s like, crushed.  so it’s annoying. also, that fluttering is back.  not as bad as it was but it came back last night when i was lying down reading.  i was like… oh no, not you again.

i can’t really get into all of the other stuff bothering me cause i don’t want to bring this post down.  let’s just say it’s been rough.  

i’ll check in tomorrow . hopefully with some newfound optimism from the bronx

almost 80 degrees tomorrow!  hopefully i can get some outside time.

sweet dreams team.

xoxo

“gosh, I wish I had some medical students here with me today. It’s so rare! What you have, I can’t even remember what it’s called it’s so rare! You should be in a text book. I really wish I had some students here to see your case!” -Dr Hon-Ming Eng April 16 2008 And I leave here with 2 procedures to be done in the hospital next Friday. Will this ever end? How much more can I take? I’m feeling ill, so done. Whatevers after done, that’s what I’m feeling right now. Aaaaaaaaahhhhhh

Ok, spring is definitely here. THIS makes me happy!

So, today is the second day in a row that I will see a doctor.  I will see one every day this week and then 4 days next week.  The first week in May is quite busy with docs as well.  I am a profesh at sitting in these waiting rooms, i’ve found the best waiting games (in my own head of course)  to play to keep myself entertained and of course, there’s always my trusty portable dvd player that Cyn got me.  It’s great for the especially long waiting rooms like my cardiogist who averages an hour to an hour and a half wait time. That one is especially fun. The dvd player keeps things light in otherwise gloomy waiting rooms (I’ll never understand why they don’t at least TRY and make them bright and happy places)?  I’ve made a lot of friends in waiting rooms actually.  Most of them are usually like 70 or 80 years old so it keeps it interesting.  Where else would I ever have the chance to make friends with 80 year olds ?  I helped a woman fill out her forms one time because she couldn’t see the small print.  Her birthday was February 1911!  She was awesome.  Had a cool little setup on her rolly walker and gave the nurses a hard time.  She got super dressed up just to go to the docs … lipstick and all.  Wouldn’t let anybody help her get to the room faster.  My kind of lady, took her own time and smiled and winked at me a lot.  Sometimes I feel I channel her, mostly when I get dressed up to go to the doctor.  Like today, I’ll wear something springy just to feel like I’m going somewhere fabulous.

Today is the stomach specialist.  During my very last MRI (ever) in January which focused on the heart they incidentally found something very interesting which might explain why my stomach always always hurts and why i am always always naush.  Basically it says that the celiac artery in my stomach is 70% closed. Now the celiac artery is the main artery from your heart to your stomach as far as I know. Hmmm…. should I be worried about this doc?  Most of them didn’t seem too concerned and said I should eventually get this looked at.  So, today’s the day.  Hopefully therein lies some answers as to my fatigue as well.  I wish I had a tape recording of my medical history .. at least of the past 6 months.  That way when I see a new doc I can press play!  Def worth looking into.

So, I am off.  It certainly helps that it’s nice out today.  I’ll make a journey out of it, maybe take myself to lunch outside somewhere near the doc.  

Feeling a bit better (mentally) than the past two days.  I’ve decided that when that happens I just have to ride it out, be sad, and deal.  I have to remember that it’s all part of the healing process.

Happy Wednesday.  The work week is half over for everyone reading this at work.  That’s something to be happy about!

Updates later or tomorrow for sure.

Off to Dr… What’s this one’s name?

xoxoxoxoxo Lauren