Thursday, June 16, 2011

My 1st Ever Cardiac MRI & Yearly Cardiologist Appt Results

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**!

Monday, June 13, 2011

Cardio/MRI Change... Random Stuff Update!

Hello Everyone!

Hope all is well!

My Cardiac MRI and Cardiology Appointment was moved from last Thursday to this Thursday. I got everything confirmed and set up last week. I wanted everything done in one day so I could get results of my MRI that day as well as make sure I don't miss college. It was just my luck when they called to want change the date and have everything moved to one appointment instead of two... they must have read my mind and knew I was going to call and change it all. So, the big day is this Thursday... ready or not. I'm starting to get nervous, but I will be ok. I will update with the results as soon as I can.

As from my last update, things in my life are starting to calm down. I've had a lot of tough times the past few years, but I know I will be ok in the end... one day at a time. I hope no one thought I was complaining or having anyone feel sorry for me, etc. I just want to be real with what my life is like and what a CHDer "might" have to face as they are an adult... like the Medical Bankruptcy. A Heart Mom send me a message with some very harsh hurtful words a few days ago and it broke me a little... I don't think anyone should judge ANYONE without knowing everything that is going on in their real life... what I put on my blog or my Facebook is NOT my whole life... and those two places were made to all of us to vent then support each other... especially in the CHD community. We should all be allowed to whine, complain, and vent on our blogs and Facebook and NOT get bashed.

Just wanted to make clear about a few things: I'm filing Medical Bankruptcy because I have too many medical bills piled up and I need a clean slate... I will be on good Health Insurance in the next year or two, so I want to start clean. I'm getting Food Stamps because I don't have a job right now and going to college full-time... I can't get a job till after I graduate... and I will most likely never be able to hold a Full-Time job due to my specific CHD case... but I'm going to college to put me in a great position to be able to get the best job I can as a career whether is be a Part-Time or "Maybe" a Full-Time job if they can meet all my needs for accommodation. But having Food Stamps will help until I get out of college. Lastly, I need Social Security-Disability so I can have a something to help me out until I get a good career/job. Just wanted to explain as that one Heart Mom who messaged me certainly didn't know me or my situation... there is a LOT more to my life and situation then this, but I wanted to explain some of it. And not all the stress in my life has to do with my CHD... most has nothing to do with it... the economy is bad and many many many are struggling... and everything can have family issues too... my whole life definitely does NOT revolve around my CHD and I do NOT let me CHD take over my whole life.

***On a Happy Note: Chris and I celebrated 2 1/2yrs last week Tuesday (the 7th)! Wow time sure does fly! I need to get a recent picture of us.... when I do I will post it. I had a bad head cold last week and now Chris has it... ah the summer cold, boo. Love my Christopher SO much!***

Keeping you all in my thoughts and prayers! **Heart Hugs** sent to all!
So many CHD families have touched my heart and I think about them often.
You all are a huge support and I hope you know I'm here to support back, always!

E-mail: lceleskey87(at)aol(d0t)com
*I'm on Facebook too... under Lauren Celeskey

I Hope to meet a few CHD families this summer in Michigan and Ohio!
There is nothing I love more than to give Hope and make new friends!

**OH those who live in Michigan... I started a "Pulse Ox Michigan" Facebook Page.
I'm helping in getting a Pulse Ox bill/law in Michigan! :) Go "like" my page and help me, help save lives!**

***And I want to do 1-2 special posts on my blog this summer.... any ideas
on what you'd like to see? Thank you!***

Thursday, June 2, 2011

Catching up & Meeting CHD Families

Wow! It’s been over a month since I last updated!

Seriously, it has been a crazy busy, stressful, overwhelming, confusing, happy, & struggle (good and bad) of a month!

Where to start? Well we are now living in Michigan after over a year away living in California...well it was a year & a week... for Chris’ one year internship. We left California in the morning Sunday May 1st. For two weeks before that we had been packing and cleaning the apartment... the night before and the early morning of we were still packing and cleaning, but were on the road back to Michigan by about 10-11am Pacific Time. We drove or I should say Chris drove about 10-14 hours a day for 3 days! We made it to my mom’s empty house about 11pm Eastern Time on Tuesday May 3rd… yup we made GREAT time coming back just as we did driving there.

Since we’ve been back in Michigan everything has just been so crazy... it has been just one thing after another… looking for an apartment, finding an apartment, family issues, seeing family, going back to college, living out of boxes & suitcases, running around doing this & that, getting appointments for me set up, etc. etc.

WHEW! And thing STILL have NOT calmed down yet!!

We are finally in our apartment as of last week Tuesday. :) I applied for Food Stamps, but it will take a bit of time since I have to take myself off my mom’s…we should get a Food Stamp card in the next few weeks. I have a lawyer now for my Medical Bankruptcy, SSI Disability, etc… which happens to be a relative… hoping to get things rolling soon.

I have my Cardiac MRI on Jun 9th , which may have to be moved because I’d like it done at the main hospital not an office since this is my first one…we’ll see, suppose to get a phone call from them soon. I have my other Cardiologist appointment for results and everything else on June 15th.

Last week Saturday we went down to Ohio to get Chris’ furniture and stuff from his mom’s house, then on Sunday we drove back down to spend the day with her which was super nice. His mom took us out to eat at the Cheesecake Factory (Yum!) then we went back to her house to talk, then it was time to make the 3 hour drive back to Michigan. It was SO nice to spend time with Chris' mom... we really loved and enjoyed it!

*We wanted to spend a few days in Ohio visiting as well as for Chris & I to meet a few Ohio CHD families in that area, but unfortunately because of certain circumstances we could only spend part of the day down there. We are going back down sometime this summer for a few days and I'm really hoping I can meet those few Ohio CHD families then.*

We (Chris & I) have already spent lots with my little brother, Aaron (12yrs old), who is staying with my grandparents. I got to spend some time with two of my friends for a little bit since I have been back, which has been nice since Ihave been SO crazy busy. I’ve gotten most of my Financial Aid taken care of for school. And seriously I could go on and on with stuff we have done and stuff we still have to do… we have only been here a month!! Hopefully things calm down soon!!

To top everything off... I'm not feeling well... have a bad cold on top of allergies... fun stuff, NOT!

I’ve been so busy that I haven’t really had time to “worry” about my Cardiac MRI and other tests coming up soon… which is a good thing. I pray and hope they go well! I know I’ll get nervous soon! I will definitely update on how all of it goes even if it’s just a quick and short update. I know God is in control... all I can control is my attitude towards it.


OK done with all that…. I DO have something else to share! I’ve met two VERY special amazing CHD girls with the same CHD as me (Tricuspid Atresia, HRHS) along with their awesome family. I wanted to share those visits with some pictures with you. I have been close to both of these girls mothers.

The weekend before we left Chris and I met up with 6yr old Megan and her parents for pizza, it was wonderful. I’ve known Megan’s mom, Kim, for some time

through the internet… it was so nice to see them in person. Megan thought I was pretty cool and I think Megan is just the sweetest. They are an awesome and sweet family!

Megan & I

Then on our way home we stopped to meet Heart mom Crisse and her 8 1/2yr old daughter Kyleigh along with her grandma and little brother. I’ve known Crisse through the internet for over a year and we have been talking on the phone since October… we are really close friends. I’ve gotten to know Kyleigh by phone and adore her just like her mom Crisse. Getting to meet them in person was so awesome! I’m hoping we see each other again SOON! Love them!

Kyleigh & I

Me, Crisse, & Kyleigh

I LOVE meeting CHD families, CHD kids, and CHD adults! It is just SO amazingly awesome!

I hope to keep in touch with both of these families as Kyleigh and Megan grow. I told both girls and their moms that I will always been there for them, support means everything… I’ve been in Kyleigh and Megan’s shoes at their age and I know what they "may" encounter… I was to be there friend and mentor... it’s my honor. These girls have a special place in my heart and always will along with ALL the CHD kids, CHD Adults, and CHD parents I've met as well as CHD Angel parents as their kids are angel heroes!