March Maddness! (Ok not really)

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!!

Christmas... Heart Update... CHD Awareness, etc.

Hello Everyone!

It’s been awhile since I’ve updated. I hope all is well, praying and thinking of so many in my amazing CHD community!

Christmas:

My first Christmas without family wasn’t easy, but it was still a very nice day. Chris (my boyfriend) and I had a nice quiet time. We missed our families, but made the best of the day. Chris and I decided to make a no-sew blanket together on Christmas. It didn’t turn out perfect as it was both of ours first time doing one, but we made it together and it turned out nice. It’s great to have such a special memory of making it together on Christmas.

Here is a picture of the finished blanket; I think we did pretty good for first timers:

The rest of Christmas day we just relaxed, watched TV and played some games. It was a wonderful Christmas we will always remember even though we weren't with family. The Sunday after Christmas we went and saw the movie “Little Fockers”. I thought it was really good, I already liked the other two movies. Definitely not a movie for young kids, but for teenagers and adults it’s a funny movie.

Heart Update: In other news, I’ve been getting on and off weird/random/double heart beats. So, I called my Cardiologist’s office this week and they called back yesterday. My Cardiologist is a bit concerned if I really am having these and so I will be getting a Holter Monitor (I’ve had them before, this is the first one in 7yrs though… it’s just a portable EKG machine basically). Thing is I’m all the way in California still and my Cardiologist is back home in Michigan. My Cardio’s nurse practitioner said that the monitor department said they can’t send one to me as it would be gone to long, so I’m getting official documents via mail that I need a Holter Monitor ASAP. With those documents I’m suppose to find a hospital here willing to put one on me and fax over the results to my cardiologist. I’ve called a hospital and they don’t even know if they can do it as I have Michigan Health Insurance and sill a Michigan resident not a California resident so even though the documents are from Michigan my insurance will probably not cover it and it’s like a few hundred dollars out of pocket and I don’t have that kind of money. So, I’m calling back my Cardio’s office on Monday and going to talk to them again, might even talk to the monitor department and just say bill my insurance and send me a monitor as I need one. Ugh, hate getting the run around. Prayers that it will all work out would be great.

CHD Awareness News:

I was on a new radio show about CHD Awareness a few nights ago. It was the first episode and I think it turned out well. I got 3 facts wrong (I was nervous), but that’s ok, I still think I did well. Here is the link if you’d like to listen to it (just copy and paste).

http://www.blogtalkradio.com/jirvin/2011/01/07/chd-awareness

I know CHD Awareness week is coming up Feburary 7-14, but CHD Awareness shouldn’t be just a week in the year, it should be all the time. I’m thinking on something small I can do. I will let you know what I come up with. With college and other personal things it can be hard for me to keep up with my blog and other things, but I’m trying my best. If any of you have any ideas of what you’d like to see, please let me know!

Lastly, here is a link to order FREE CHD Awareness brochures for CHD Awareness week! Order soon as they are only available for so long. I already have some for myself and thinking on where I can put them so people will see them.

http://tchin.org/pins/index.htm

Sending hugs and prayers to so many!

Ending with a recent picture my sister in law uploaded of my niece, Lily. She is almost 15 months old already! I miss her and my whole family so much!

With Lots of Hope, Love, and Faith,

♥