It has been about a month since I've posted.
I hope everyone enjoyed my CHD Awareness Week posts.
So onto an update:
I continue to have on and off heart issues... which is heart
beats and/or heart rate issues... these can bring chest
pain, lack of energy, being out of breath, etc. I have good
heart days and bad. Lately, I've had a few more good
heart days, but have been really tired... I've been sleeping
12 or more hours a day... so not like me. Having off the
chart sleep patterns as well (which is not extremely
unusual for me I guess... I've always had some sort of
sleep issue). Than, a few weeks ago I woke up in a lot of
pain in my right side where your liver is... my heart rate
was all over the place, I had a blueish-purple tint, and the
chills. I called my husband, Chris, and he keep checking up
on me... if it had not gotten better than to the ER we
would go... but it went away and has not come
back...weird... I'm not even sure if it was my liver, just a
small guess as I've been seeing a tiny bit of yellow in my
eye whites... but I've noticed that on and off for a few
years when I don't drink enough water... but it has been
there a bit more often. I've been drinking more water.
Yes, this stuff is concerning to me... and YES I'm going
to see a Cardiologist!... that is my next point actually. I
moved cross country (Michigan to Northern California)... I
was trying to set up an appointment with an
Adult CHD Cardiologist here about 2hrs from me. Well,
they Secretary was not very nice, they only had
ONE cardiologist who was booked (and I bet overworked),
they did not take my concerns to heart, etc. So in talking
heart to heart with Chris, we decided with research we
would find one of the best Cardiologists we could find that
had a lot of knowledge on Adult single ventricle Fontan
patients, like myself.. knowledge to include the
complications we can face like liver issues (which liver
issues are something recent they found in the pass few
years). SO after much research over a few weeks time
and talking to the first Cardiologist I had the first 22 years
of my life (love that man...saved my life... a picture of
him and I on the right sidebar... I'm still in contact with
him via e-mail).... we found an Pediatric Cardiologist who
also is an Adult CHD Cardiologist with 28 years of Fontan
patient experience young and old that we feel is the man
to take good care of me... downside: he is out of state,
in Georgia... SO to Georgia (Atlanta) we will be going in
April for an appointment. We are going more in debit by
doing this, but my AMAZING husband who is my best
friend, rock, support, and my everything said my health is
number ONE and would fly me anywhere and go into
debit for me to get the best care. I am SO lucky to have
Chris in my life. God sure has blessed me despite many
challenges. April 25th is my appointment... I will also be
seeing their liver specialist that has Fontan patient
knowledge on that day as well. It will be a long day, but
worth it to get answers and a plan. We have our flights
scheduled... we are leaving the night of April 23rd and
staying till the morning of April 28th. I'm hoping for
answers and to feel better. I have high hopes and faith.
**We will fly in to see this Cardiologist once a year or when I need any surgeries... anything else I may need will be taken care of here where I live by a local Cardiologist with CHD knowledge (basically this local one will just be following my out of state Cardiologist orders).**
Despite everything I still continue to live my life to the fullest I can. I may not get much house
cleaning done, but I relax, watch TV... on the weekends when Chris is home, he will take me out
for walks, rent free Redbox movies, buy some ice cream or M&M's, play video games, etc. I still
push myself to do the grocery shopping as I enjoy getting out of the house by myself once a week even though it means to wake up really early with Chris to take him to work (we only have one car). I "try" doing even two things a day is an accomplishment to me (like doing some laundry, cleaning the kitchen counters, and cooking a small easy dinner)... though some days I do nothing, but sleep and eat, but that is OK. Chris is proud that I'm hanging in there and doing the best I can with everything. I am SO SO grateful for Chris... he is my rock, best friend, love of my life, and has been so supportive even though I know it's not always easy on him. But we are a strong couple and I have faith that we can get through anything together! We have already been through a lot and are stronger for it.
I have high hopes and goals for my future still... I'm slowly doing great things. These "minor" issues and setbacks will not hold me back... and things can ALWAYS be worse, so I try not to complain... I still have pretty good health, a wonderful hardworking husband, a roof over my head, a few good friends (though they live out of state), some supportive family members (though they all live out of state), and an awesome CHD community who supports me.
**Chris and I have been married over 3 months now! Time flies!**
Some more news: I'm now a Heartwaves,org blogger!
I'm very honored to have been asked to be one!
Heartwaves.org is a website dedicated to helping,
supporting, and informing Congenital Heart Defect
(CHD) families. Check out the site.
Here is my first blog post: http://info.heartwaves.org/bid/130077/An-Adult-with-CHD?utm_medium=social&utm_portalid=142212&utm_source=facebook
I'm also looking into something I can do during the week...
like joining a book club or something so I can meet others
my age with a common interest so maybe I can make a
friend or two... which would be nice. We'll see what I can
find and I will share what I end up doing.
I will update again when I have other news to share. :)
Sending *heart hugs* to all!!
