Wednesday, January 29, 2014

Hearts and Stars

Things have been difficult around here.  Brian and I were both sick over the holidays and into January with colds, strep throat and a weird virus resulting in body aches, fatigue and a nasty dry cough.  I have literally not felt myself since December 16th.

In the midst of all of that I have developed SVT, a cardiac arrhythmia where your heart speeds up to high rates (mine goes to 170s) out of the blue.  My longest run was about 15-20 minutes.  I don't feel ill during them, but they are very scary. 

The results has been two calls to 911 (once while I was at work...scary and humiliating all at the same time) and multiple doctors visits over the past couple of weeks.  On the one hand good news: so far the Electrophysiologist (a specialized cardiologist who deals with irregular heart rhythms) thinks that I have a 'simple' type of SVT which responds to vagal maneuvers (coughing, bearing down, gagging) and which is less likely to result in a blood clot forming in my heart. So instead of starting TWO medications, I only have to start one: "just" a beta blocker, rather than a beta blocker AND an anticoagulant.  So far.  My cardiologist seems like she might push for the blood thinner anyway: "just in case".  The beta blocker is bad enough...I feel like I'm drunk without the fun factor, although I've been assured this feeling dissipates.  Blood thinners mean a blood test every month for life.  It's not the needles that bother me, its the hassle. 

The bad news of course is that I'm scared.  Scared like I was when I was pregnant with Kaia and I had no idea what the outcome was going to be, but knowing how bad it could get. 

Is this a small hiccup in the life of my heart, easily controlled with meds?  How much is this going to affect my life?  Will the SVT episodes stop now that I'm on meds?  What's next? I've lived with that question all my life.  It's not "If" I'm going to start to have problems with my heart but "When", made exceptionally clear to me in the summer by my new cardiologist.  Will I be able to work?  Travel?  Raise my daughter in an active way?  This last month of sitting on the couch feeling sick has been difficult with a toddler (who by the way, was healthy as a horse the whole time).  I feel weak, fragile and sad...and I'm not sure how much of that is my body and how much of it is mental.  I'm a worrier.  I worry a lot.  I've worried about my heart my whole life, and have to work very hard to 'shelve' that worry and get on with it.  It's easier to do when you're not confronted with the reality of it all as I have been this past month.

Right now I'm off work pending a meeting with my cardiologist on the day before Valentine's Day.  Coincidentally Valentine's Day is also Congenital Cardiac Defect Awareness Day (get it: hearts!), and also marks the week that I'll have been 25 years post Fontan (the major surgery I had at age 6 to improve my cardiac function and make it possible for me to live.  Apparently only 60% of Fontan patients are alive 25 years post Fontan, so go me!).  I'm hoping between now and then, with a few weeks off work, getting settled on this new med, and (hopefully) not having any SVTs, will help my mental state (if not our bank account).  I just want to feel better again.


In the midst of all of this, Kaia has been our shining star.  She's a toddler and as such throws daily tantrums and freak outs...but in minutes she is back to hugging and giving kisses.  She's talking a lot more (and giving more commands including: "Mommy, Daddy, Kaia go play, then watch Mickey Mouse!"  Okay!").  Mickey Mouse is her new favourite.  She's into the Play-Doh, Lego and loves throwing and kicking balls around our house.  She loves baths, although mainly the splashing part, not the hair washing.  She loves "pushing buttons", where we sit at the computer with her and open a Word Document file and allow her to push all the computer keys.  Kaia loves games involving numbers and letters. She knows all the letters and counts up to 13, misses 14 and 15, and then says 16. She loves puzzles and music and dancing.  She can now sing parts of "Jingle Bells", "Twinkle, Twinkle Little Star" and "The ABC song". She still (in almost February) says "Merry Christmas" to people upon leaving and points out any Christmas lights that are still up around the city.  Kaia started to potty train, which due to the above mentioned circumstances, we are being pretty lax about.  She wears a pull-up when we go out and during naps and a diaper to bed, but while at home she goes diaper free and has been very good about using the potty.  I think by the spring she'll be in underwear during the day even during outings.  

Kaia goes to gymnastics once per week and although she seems to enjoy it, her lack of flexibility and balance is noticeable.  She's a very cautious kid too, so that doesn't help her push her limits. She still likes to hold my hand when jumping down from any height beyond 2 inches, whereas other kids her age are literally leaping off things a foot high or more.  However, one aspect of Kaia's personality seems years beyond her age.  She is incredibly sensitive to anyone's sadness or pain.  In gymnastics there are 'stations' and groups of kids rotate during the hour long class.  If another kid, anywhere in the room is crying, Kaia immediately stops what she's doing and wants to go over and investigate, inching her way closer to the one who is crying saying "Mommy, baby crying!" (anyone who is crying is "baby").  It's really noticeable in a room of 30 or 40 other kids who don't even flinch when they hear someone wailing.  I'm pretty sure if the crying kid's parent weren't there, she'd go over and pat him or her on the back.  It's a very sweet, sensitive and loveable trait and makes me very proud of her for being so caring.  

She would make an awesome big sister.  

If only things were different.