Ok Where to start...
I got up at 6:30am, but considering I went to bed a little over midnight and had a
hard time sleeping... I didn't get much sleep... I was nervous.
We got to the Medical Center for my Cardiac MRI at 8am. I filled out papers and all
that good stuff. Went back, got into a gown, then got an IV... the nurse was nice and got it in on the
FIRST try (YAY!)... then had to wait about 15mins. Going into the MRI room was a bit
nerve racking... I got all hooked up and strapped in, than into the "tube" I went. The
tight space didn't bother me, it was the laying still for over an hour and the noise that
really got me... but I did it! WooHoo!
After the Cardiac MRI we got a quick bite to eat... I was sore and tired, but I did eat something.
We then headed over to Mott's Children's Hospital, Pediatric Floor... got checked in then I was
called back.
My Cardiologist came in... whom I've only had for two years (had to change Cardios from
the one I knew my whole life as he wasn't a Ped Cardio certified to take care of Adult
CHDers too and he wanted the best care for me). Dr. C came in then sat down and showed
me the MRI images of my heart. He explained I was looking at... what my heart is like
compared to a normal heart... all very interesting. Dr. C told me I'm "Stable"! An AWESOME
word us Complex CHDers and CHD parents want to hear! Now, he told me for a HRHS older
Fontan-er I'm "good" "stable"... what does that mean? Well, he told me this: an average
left ventricle in a normal heart has a gradient (I think that is the word he used) of 56-57...
that is just Average Minimum for a normal left ventricle... my gradient right now is about 47...
it has dropped since my Fontan 21yrs ago, so it's not "great" "stable", but "good" "stable" which
he said is still really good for me! Whew! **Gradient is just how your ventricle pumps...
mine works over time and doesn't have a good squeeze as a normal heart does because
I don't have a right ventricle.** He said once I get to about 35 then we will talk about doing
some sort of intervention... which will most likely be a Fontan Revision, but he said a Heart
Transplant isn't off the table... BUT he said do NOT worry about ANY of this right now!!
Just keep LIVING and doing EVERYTHING I can do, of course within reason.
Dr. C then listened to my heart and took my blood pressure... my blood pressure was a little
low, but he wasn't too concerned. I got an EKG... piece of cake. I had a 24hr Holter put on
as he wants to see how things are... especially my heart rate issues... he was thinking I "could"
get off my beta-blocker and see how I go without it depending on my Holter results, but he
says with my heart rate issues, it can be hard to balance... we'll see. I also go my yearly blood
draw and will get those results next week... I'm sure it will be fine.
I go back for a Cardiology check-up in a year!! Woohoo!!
Dr. C said he sees Fontan-ers all the way into their 40s and still doing pretty well...
he thinks I "could" last another 10yrs before I may need something done. Great News! :)
Thanks everyone for ALL your thoughts, prayers, support, and kind words... they all
TRULY mean a lot to me!! I don't know what I would do without my amazing Heart family!!
I'm speechless by all the love and support! Thank you, thank you, thank you!
I will keep on living my life to the fullest!!... Drs orders!! :)
Sending you all **Heart Hugs**!
