Saturday, December 17, 2011

Snippets from the Busy Life of This Adult CHDer...

AH it has been SO long since my last real update!! Life has been SO busy (good and bad, I guess)!

First off... I've reached 100 Followers to my blog! WOW! Thanks to those who follow it even though I've done a horrible job keeping up with it lately... when things calm done in a few months, I will have more time.

Now on to SNIPPETS from what has been going on in my busy life lately:

- I got Pre-limanary results from the 30 day Heart Monitor I wore back in September... I get low heart rate at night and can get out of rhythm every so often (like a few times a week)... but they think it is nothing to worry about... still waiting for "official" results (upset it has taken SO LONG). My heart has been behaving better lately... so that is good considering the stress I've had...

- We had a WONDERFUL and relaxing Thanksgiving with Chris' mom!! And I got to meet another amazing CHDer and their amazing mom!

- I will be a College Graduate as of December 22nd!!! WOOHOO!!! :)

- I'm getting legally married to Chris NEXT WEEK on December 21st... it is just a SMALL Courthouse thing, but we plan on having a BIG wedding/reception in about 18months when we have the money. But it is the LOVE, Commitment, and marriage that counts! :)

- I'm MOVING back to Northern California in less than 2 weeks... this time permanently (for now anyways)... Chris got a job. I will be transferring my Cardiac Care from Michigan to Norther California... will be seen at Standford Children's.

That wraps up the MAIN points of my life right now... LOTS going on next week including Christmas!!

A NEW Chapter in my life will soon begin!! I'm SO grateful to be able to live a life despite the challenges and hardships (health wise and personal issues)!! I may have "Half a Heart" but I do not have "Half a Life".

Sending thoughts, prayers, and *heart hugs* to all!!

Happy Holidays and Merry Christmas!!

AND STAY TUNED... more updates to come...

I will end with a new picture of Chris and I.

Monday, December 5, 2011

I'm WAYYY Behind!!!!

I'm really behind on updating. LOTS have been going on! I plan on updating after finals aka after finishing college which is 2 weeks away. Stay tuned! Lots to share!

Thursday, October 13, 2011

Mid October Already?!?! Random Stuff and Heart Stuff

Hello Everyone!

I know it has been a long time since my last update… over a month almost two months!! So what has happened since my birthday?!?! Here is a small update…

My 24th Birthday was a nice, quiet, and enjoyable day. Chris took my out for dinner and he had bought me a Ben & Jerry’s ice cream cake (that had no cake in it HA!). Chris let me pick where I wanted to eat and I choose Pizza Papalis which was yummy! Then we got home and had ice cream cake… it was one of the best ice cream cakes I ever had! We ate the WHOLE thing in 4 days! HA! Since my dad lives with us at the moment, he got to enjoy left over pizza that we brought home and some ice cream cake. Chris and my dad sang Happy Birthday to me! :) I got some nice phone calls from my mom and grandparents… and the day before I had gotten to hang out with my awesome little brother. I also received SO many Happy Birthday messages from friends and the amazing CHD community. I felt very loved! Thank you from the bottom of my mended heart!

Here is a picture of me with my Ben & Jerry’s cake on my 24th Birthday (Aug 25):

In other news:

-My little brother, Aaron now lives with my mom in Texas. I miss that kid like crazy!

-Labor Day weekend Chris and I drove down to Ohio to spen

d time with Chris’ mom… we also got to spend time with his older brother, niece, and nephew of a little too. The day we left Ohio Chris and I met an amazing Heart mom and her amazing 2yr old CHD warrior (HLHS… the opposite of me). It was a very special visit that I will never forget!

-My last college semester started on Sept. 7th! I’ve been trying hard to focus and get everything done…. It’s hard though because all I can think of is “I gradua

te college in December!”. I’m so proud of myself and excited to hit this milestone especially being a single ventricle CHDer. College has been keeping me very busy along with other things going on too. I try to take some time to relax.

-I got to meet my dad’s side of the family a few weekends ago for the first time in over 3yrs. It was so nice to get to see them. I had a nice time.

-Last weekend I got to meet two amazing CHD Moms and th

eir CHD warriors. I really enjoyed meeting them! I love meeting CHD families!

-We are only going to be in Michigan another 2 1/2 months before moving back to California, so I’ve been trying to make plans with some people and family so I can see them before I leave. We will be busy packing around Christmas time… oh boy. Chris and I st

ill haven’t figured out how we are going to move everything… as

we have a LOT of stuff this time. Also, I’m moving my heart care to Standford Children’s Hospital when we move to California. I’m nervous and excited about moving and new doctors, but it will all work out.

Heart wise: I kept getting on and off palpitations/weird heart beats that came with discomfort and/or chest pain. I’ve been getting these on and off for over a year, but they seem to come more frequent. I had a 24hr Holter put on me in June, but nothing was picked up. So I talked to my Cardiologist’s nurse practitioner and I received a 30day Life Watch Monitor in the mail. I wore it for 3 weeks. A Life Watch Monitor is like a Holter and a Even Monitor all into one… it has three leads & wires that attach to the chest… then it has a Blackberry cell phone that connects with the monitor and the Life Watch Center… though the monitor runs everyday 24/7 (and yes I could take it off to take a shower), I would send them text messages when I was having symptoms so that a red flag is marked during that period of time during monitoring. I took off the monitor last week and sent it back this week. My Cardiologist’s nurse practitioner said it will take a week or two to review everything. I will update when I know more.

Here is a picture of me with the Life Watch Monitor on back when I first got it:

Alright, that is it for now. I hope to update soon with more news.

Take care! Sending thoughts and prayers to many!

*Heart Hugs* sent to all! <3

With Lots of Hope, Love, and Faith,

Thursday, August 25, 2011

Today I'm 24

Today is my Birthday. I’m now 24. 24 years old... where has time gone?
The past weeks have not been easy. I’ve been stressed and emotional. Been dealing with school and other personal issues, but I’m hanging in there and I know that everything will work out as it should in the end.
Every birthday since I have been older, though I’m not old, I’ve looked back at everything I’ve overcome. I remember the good times, the bad times, trails I’ve gotten through, and the triumphs. I have been through more in my short 24 years than most people will ever go through in their lifetime. I can say the things I’ve been through, my experiences especially living with a life threatening Congenital Heart Defect or “Half a Heart” has had a big impact on the person I am today. I’m very proud of the person I am.
Today is another milestone. Today is a day to remember the past, celebrate the present, and look to the future. I don’t know what my future holds, but I will take one day at a time (I say this a lot, but it's true). I know it will include more challenges especially medically, but I know it will include great things too. I graduate college in December and I plan on marrying Chris in the near future… I’m using my knowledge of what it’s like to be in the hospital, my degree in Psychology, and my love for children to become a Child Life Specialist at a Children’s Hospital. I have so much to look forward to despite my not so easy life living with a chronic illness.
I will never stop spreading CHD Awareness, telling my story, spreading Hope and inspiration, and being a support to others. From doing these things I receive priceless gifts of meeting amazing people, kindness, support, hope, inspiration, and so much more.
Thank you for everyone that has been in my life in some way, you have played a part in the person I am today. To my personal heroes: my parents, my doctors, and my surgeons who are the reason I’m here today… there are no words to express how thankful I am to them… I much I love them and how much I’m grateful.
Though things have not been easy (health wise, family, school, etc), I’m blessed and super grateful for everyone and everything.
Today I’m 24. Today is a special day for me.

Me on my 1st Birthday

Me back in June

Monday, July 25, 2011

Liver MRI Results, Holter Results, Another Appt

Hello Everyone!

I had my Liver MRI July 15. The MRI itself went well and was a lot shorter then my Cardiac MRI that I had last month, I did have to wait awhile to go back for the test as the office was so busy that they were running a bit behind, but that is ok. After the MRI Chris took me out for some yummy pizza, so we made the best out of the day.

Last Monday I got a phone call from my Cardiologist’s office with my Liver MRI results and my 24hr Holter results. It had been over a month since I had worn the 24hr Holter monitor so I was glad they finally had the results of that in as well. I’ll start with my Holter results: All is well. I have no abnormal heart rhythms, a-fib, etc. which is great! I still have my minor heart rate issues, but they haven’t gotten worse and I’m still on my same dose of beta-blockers (my heart rate medication) that I have been on since I got the issues 6 years ago. So I was glad that everything is stable right now. As for my liver... it looks “ok” for a Single Ventricle Fontan patient with an older Fontan. My liver is enlarged which is to be expected, but my liver function isn’t what they were exactly hoping for. With my pretty good stable Heart function they were expecting pretty good liver function as that’s usually how it goes… not me. My liver is “high” normal for someone who is an older Single Ventricle Fontan doing well Heart wise. So, my liver will have to be kept a very close eye on from now on and they said if my liver levels continue to rise, then they we’ll think about options… which the first step would be medication. BUT they said to keep living and not to worry about it right now as there is nothing I can do about it, it’s just the way my liver is reacting to my Fontan in MY personal case and that my liver is OK and acceptable for right now… it could stay this way for years or one year, who knows, but I will continue to live and not worry about it.

In other news, I got to meet a Heart Mom while getting my Liver MRI as she worked in that office. It was so nice to finally see another person I have “met” through the online CHD community face to face.

Also, my Cardiologist signed Handicap parking papers. So, now I have a Handicap parking placecard for our (Chris’) car. This will help in really hot weather and in really cold weather or when I have to park all the way out of the way on my college campus. I may be doing well, but in certain weather and walking long distances is not very easy for me, so this will be helpful. This to me does not label myself disabled, this just means I have some limitations and I care about my Heart health.

Other than all that, life continues to be busy with college, family, keeping up the apartment, etc. We do get some time to relax now which is nice. There hasn’t been anything new or exciting lately, most stressful than anything. I do have a doctor’s appointment at my Primary doctor’s on Friday to get some booster shots (Tetanus & Whooping Cough) and to get evaluated for Asthma… hopefully they give me a referral to a Pulmonologist to see if I do indeed have Asthma. A few years ago after a stress test I was told my old Cardiologist (of 22yrs) that I may have minor Asthma, but I had no symptoms so never got tested for it… well for over a year I’ve had symptoms and they keep getting slightly worse… I hit most of the Asthma symptoms, so I’m hoping to get an official diagnose and medication… if not then I’ll be tested for other things to find out what is going on. I know it’s not my heart as I just had a Cardiologist appointment and all was good. I’ll keep everyone posted.

Even though things haven’t been easy, I shouldn't complain as I’m doing pretty well and do have many things to be grateful for… I am blessed. Sending thoughts, prayers, and **Heart Hugs** to all! My Heart/CHD family means SO very much to me!

With Hope, Love, and Faith,

Wednesday, July 13, 2011

Quick Random Update

Thought I would drop in and just give a brief update on what's going on in my crazy life haha.

My 2nd Summer term of classes started last week. I have two classes instead of one like the first half of the summer. I'm in school most of the day Tuesday and Thursday (11:30-2:20 & 6:10-9) which can get me tired, but I mange pretty well and I'm proud of myself for it! I graduate in December and I can not wait! Woohoo! :)

I sat down and thought about what I want do as a career after college for a long time over a few day period it was in my head. I think I'm going to try my hand at being a Child Life Specialist. I know what it's like to be in and out of the hospital, so I think I would do well at this. This will mean that after college I need to do 100 volunteer hours, then a 680 hour Internship, & lastly pass a test... all this to be certified. I hope I can do it. I'm going to give it my best effort and either way the experience will mean a LOT!

Life continues to keep me busy with ups and downs, but I'm doing pretty well. Keeping my head up and looking at positives. I am blessed and grateful for so many things.

I have my Liver/Abdominal MRI this Friday. I can't eat or drink 4hrs before... so that means I need to get up at 7am (can't eat or drink after 8am) to eat and brush my teeth. I won't know the results that day, but I will post a quick update on how the MRI went. I also have not gotten my 24hr Holter results yet even thought it's been almost 4 weeks, but they told me it can take up to 8 weeks for the results... so I will post when I have them. The best part of this MRI is a Heart Mom I've known online for awhile works in the MRI department that I'm going to this time around, so we will finally meet! :) And Chris is taking me out to eat after the MRI. So I'm going to make the best out of it!

That's about it for now. What kinds stuff do you want me to post about? Let me know... I could always use a topic. I wish I wrote funny posts, but maybe I need help in that area. I need to think of funny stuff.

**Oh almost forgot** Adult CHDers who had the Fontan AND CHD Parents whose child has had the Fontan, please if you have 10mins click on the link below and do this survey. The University of Michigan, Mott's Children's Hospital is doing this Anonymous research survey on anyone of any age who has had the Fontan surgery. This survey could collect great information in how to better the treatment for who, like me, have had the Fontan surgery. Thanks! Link to the survey:

Thanks so much for all the prayers and support! Sending prayers & **Heart Hugs** to all!

With Lots of Hope, Love, and Faith,

Friday, July 1, 2011

A Quick Bunched Up Update... Another MRI...

Hello Everyone!

Happy July! Woah can't believe it's already July! I will be 24 next month... where did the year go?! Geez... time slow down a little! I've been super busy still, but wanted to write a quick update... there is a bunch of stuff to quickly talk about, so I'm sorry if this update is all over the place.

I finished my first summer class on Monday! Woohoo! I did well! :)
I start my other two summer classes on Tuesday... if one wasn't busy enough, I will have two... but need to get that college degree in December. I keep telling myself only 7 more classes away from a college diploma now! :) So excited! I decided I want to be a Pediatric Social Worker or a Child Life Specialist as a career... hopefully that works out... I think I would be good at both, just have to see which one I can get. Fingers crossed! :)

Last Sunday I saw my mom's side of the family for my Grandma and
Uncle's birthday... it was so nice. I got to see my niece again! Oh my Lily (my niece) keeps growing! :) Here is a picture of here and I... not a great one as she looked away haha. Oh got a new haircut last week, so that is a good picture of my new do.

So, I tried my hand at making sem-homemade cinnamon rolls last weekend. I had dark brown sugar, cinnamon surgar, butter, and pizza dough balls... they smelled great and looked great (see below picture), but they tasted nasty haha. Not sure what I did wrong, but I'm almost certain it's the pizza dough... I've learned to never use pizza dough for cinnamon rolls... it was worth a shot though. I had fun even though it was an epic fail ha! Now, I need to think of my next food experiment haha. ;)

**Health News: So in my title I say Another MRI... let me explain the best I can. I had gotten a call 2 weeks ago about my lab/blood results. My Cardiologist's Nurse Practioner said everything looked fine, but I asked to get a copy of my results sent to me so I have a record of them (I try to get a copy of all my medical records). A few days later in the mail I get my lab/blood results and I look over it, then decide to compare with last years. My new Cardio has never seen last years as I had them done before I first met him... that's why I wanted to compare. I noticed that my Bilirubin (liver function levels) were slightly high last year, but that is Normal for most CHDers especially Single Ventricles who had the Fontan like I did... but I noticed a big jump from last year to this year, not a huge jump but almost a point higher which "can" be concerning. So I called my Cardio's Nurse Pac... we ended up playing phone tag for a few days (hate that). I finally told her my concern and wanted her to ask my Cardio what numbers should I start being concerned... the nurse said she would ask and call back in a day or two. Well, I get a phone call 2 days later by one of my Cardio's secutaries wanting to schedule my Liver MRI.... UM WHAT?! She said "Oh I'm guessing you don't know..."... Well later that day my Cardio's Nurse Prac. calls me saying sorry for scaring me and not getting to me first. My Cardiologist had went to conference about a week ago... the topic of Fontan-ers (my second open heart) and livers were brought up... that even a slight jump in Bilirubin from year to year "can" be concerning and eventually effect my heart (which is going well). So, they the increase in my Bilirubin is high enough to be concerned to get a Liver MRI as a precaution... that way if there is anything it will be caught in time before it effects my good heart function. Makes total sense. So, on July 15 at I go back to the hospital for a Liver MRI (well it's called an Abdomen MRI). I'm hoping everything is ok and this is just going to be a baseline MRI for my Liver.

Alrighty, I have a busy busy weekend and week ahead of me. I hope everyone had a safe and wonderful 4th of July weekend! Sending thoughts, prayers, and **Heart Hugs** to all!

With LOTS of Hope, Love, and Faith,

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!

Monday, April 25, 2011

Late Night Thoughts and Feelings

It's very early Monday morning that I'm writing this... right now it's 1:32am California/Pacific time.

I don't usually write posts this late, but I have things on my mind that I thought I'd share that I haven't before.

As most all of you know, I'm a 23yr old CHDer (Congenital Heart Defect/Disease) survivor with Tricuspid Atresia, Hypoplastic Right Ventricle (aka HRHS) and over 21yrs Post Fontan (2nd open heart) along with a few others things.

Anyways, I've been part of the online CHD community for over 4 years now... it certainly has been a truly amazing experience and blessing, but on the other hand it has also been a very scary and hard community to be a part of. I've read and heard of many many CHDers, young and old, passing away...some I even had the honor of getting to know or getting to know their parents... the first time it happened I was totally beside myself and cried so very hard... fast forward to now, years later and passings just numb me a bit. My mended heart still aches with every passing.... each one earns angel hero status in my book. I know that each one of these angel CHDers would want me to keep living, to keep fighting, to keep spreading awareness, and to just get the most out of life in general as that is why my parents, why CHD parents fight for their child! So, I try to keep going and not grieve so much... but trust me each one of them bothers me very much... each passing gives me survivors guilt and scares the living h*ll out of me!

I know we CHDers, young and old, are here for a reason... we have a plan just like everyone in this world, CHD or no CHD. Trusting and having faith is what keeps me going. Each Adult CHDer copes differently and has different opinions, but most do agree we are here for a reason and given our special heart for a reason way way beyond our understanding... some find peace, others struggle, then some like me are in the middle of peace and struggle.

With each passing, as much as I keep living and going it's hard... for the most part I can get back up, be positive and hold on to faith... others it hits me. A passing that hits me is hard to explain, I don't always cry... it's can be like a bad night in general for me without sad news of a passing which includes a sleepless night... thoughts of life run through my head... I keep listening to my heart beat... is it too fast? too slow? doing weird beats? I think I felt something? No I'm fine. I get my stressed muscle spausms down my back and chest, I shake... I'm super scared to go to sleep, too dark, everything is unknown... what happens next?... then the thoughts that I hate... I want to be able to get married to Chris, I want to be a mother, I want to have a career, I have to publish my own book... will I get to? Please God let me! Will this nightmare end!? Then thoughts of my future surgery(s)... I don't want one... I don't want to go through anything... what will happen... I don't want to do this anymore I want a WHOLE **** HEART! Why me? WHY WHY WHY!! Sometimes on a really bad night I cry.... I feel like screaming... I walk around clutching my chest... I tremble... I want to breaks things. I had some nights were I just cry, just sit and cry. Other times I get so worked up I got into an anxiety attack and hard to breath, so I try to calm down. Then I eventually fall asleep from exhaustion... though sometimes I wake up on and off because of bad dreams, dreams I don't even want to share, very scary ones for me... This is what different bad nights can be for me... a little glance into a breakdowns of a CHDer.

BUT I wake up the next morning and it's new day... I usually put it behind me and thank God for everything I have. I'm blessed, I'm grateful, and I can be strong enough to keep going. After every breakdown I pull myself back up and say to myself "My parents, surgeons, etc did not work so **** hard for me to waste my life being in a bubble all depressed... I need to get moving and embrace everything... I get ONE chance at this just like every person, ONE!" I know my special heart was not a mistake and I do really love my special heart... I may have a "Half a Heart" but I do NOT have "Half a Life"!!! But I have really bad dark days... ones that have been hard to be put into words.

Chris, my parents, and others tell me all the time I need to live, to put my health and heart first, to learn some good coping methods. With each CHD passing a CHD parent face their child's morality, but with each CHD passing I face my own. Chris, my parents, etc don't like seeing me deal with this over and over and over again... what kind of life would I have then? So I take breaks from the CHD community, I take steps back... I regroup, rethink, and relax. I love all of you, but sometimes it's necessary for my health and my heart. When a person is stressed and/or depressed their heart rate changes and sometimes your heart beat, their heart and body works harder... this is not good for a CHDer. Positive thoughts and support helps... so does talking and I know Chris and my friends are good for that. I do love my life... I embrace it and live to the fullest... but there is a dark dark side to having a CHD/Chronic illness.

So, with each CHD passing I want you CHD parents to know: With Adult CHD survivors like me... please be gentle in talking with us... please understand we are going through totally different feelings and emotions then you as parents (and no CHD parent unless they have a CHD themselves can tell me our feelings are the same, they aren't...facing your child's mortality to your own brings different feelings... things CAN be similar though... respect for each others opinions, feelings, and perspectives along with support is what we need to do)... what we need is to be offered support... ask us if we want to talk about it and if we don't then give us space.

Alright that is all I have left to say or write before my eyes go blurry from being so tired. It's now 2:08am my time and I need to try to sleep... I will probably fall asleep from exhaustion tonight as tonight we lost a CHDer which led me to write this post.

Thank you for reading! Have HOPE... and LOTS of it.... HOPE HOPE HOPE... HOPE for CHDs!!!

Sending hugs, blessings, and prayers to my CHD community/family... you all are super amazing and super special to me!

With Lots of Hope, Love, and Faith,

Friday, April 15, 2011

Highs, Lows, & Craziness!

Where to start?!?!

Lots have been going on this past month... I guess I'll start with me...

3 1/2 weeks ago I woke up early in the morning and my big left toe was swollen, bleeding, and hurting. It looked like a cut in the skin by my nail. So, I took amazing care of it, washed it, but Hydrogen Proxide, & neuosporin every few hours. (**I did call my Cardiologists office back in Michigan, but the nurse prac. that I like wasn't helpful or very nice, just said go to Urgent Care if think I need too... yea I was NOT very happy**). After a week it was looking a lot better, but still swollen, so off to Urgent care I went. It stinks being in California, having no doctors, and only Michigan insurance... luckily my crappy MI insurance does cover ER and Urgent Care visits, but would have gone either way. I got there, explained my Heart condition in basic terms, but I had to write down meds and whatnot on papers anyways. The Doctor was super nice, she took a look at my toe and said it was a very minor infection, if that. Awesome! She gave me a prescription for antibiotics to be on the safe side. We were in and out in no time.

After 3 days on antibiotics I got the constipation side effect (sorry for TMI) REALLY bad and painful! I tried to just fight through it, but the next morning my allergies were really bad and I had high anxiety... guess what happened? Yup, I had a MAJOR anxiety attack, it was so bad that I had trouble breathing... (I've had anxiety attacks before), so I called Chris and he came home from work. I talked to my mom on the phone until Chris got home. I thought I might have to go to the ER, but Chris calmed me down, got me allergy medication, made me lunch, and talked to me. Chris also called the Urgent Care doctor about the constipation... it was decided that instead of taking 2 antibiotic pills a day, I would take just one. I've been doing that since and been feeling fine... my toe is almost 100%... it's just a bit bruised... since I'm a CHDer I heal a little slower. So that was my craziness.

As for me health wise other than my toe, I've been doing pretty good. Allergies have been really bad for me and my muscle spausms in my chest & back have been really acting up lately.... they kept me up last Thursday night... ugh... I will get through it. I've also been getting on and off migraines, but that could be stress too... again I will be ok.

As for my family, it's been a really tough month for both of my parents especially my dad. My dad gave me a scare, but he is fine now. My mom's house is now up for foreclosure sale, but my mom has plans for a new chapter in her life and move to Dallas, Texas. I talk a bit more about things on my personal Facebook as all the people on there I know and trust, but this is a public blog so I can't do that plus some things should always stay in the family and close friends. But please keep my family especially my parents in your thoughts and prayers if you can. thank you!

My online Fairy Tale class ends this week, so I'm excited to be done with it, it was getting a bit boring towards the end. In 10 days Chris and I will be on the road going back home to Michigan to live there for 9months and finish college. Chris got the job at Intel and already signed, so he starts in Jan 2012... so we will be moving back to California. It has been hard being away from family (and my doctors) for a year and I can't wait to see them in 2 weeks! It will be hard to move back next year, but I trust God has a plan for me and Chris as well as my family. I will miss my mom going to Texas and Chris' mom who now lives in Ohio so lots of changes, but with the economy we need to do what we need to do to survive... we are all still family and we will make it work... we still love each other very much no matter where we live and we will keep in contact as well as see each other when we can.

I've been busy cleaning, packing, and wrapping up my Fairy Tale class. I'm not really looking forward to the drive back through the mountains as all the different elevations make it hard to breath sometimes, but I'll be ok. Things will be crazy when I get home to Michigan... finishing school, seeing family, helping my mom out of the house, helping my dad, going to get Chris' stuff from his mom in Ohio as well as visit her, filing medical bankruptcy, my two Cardio appts in June, etc etc. Whew! But I will get through all the highs and lows.

I will keep you all posted about my move and of course my awaited Cardio appts in June which is making me nervous already... I get my first ever Cardiac MRI.... hoping the results are good and no Cardiac Cath in the near future, but if it happens then I will get through it.

***On some happy note: I will get to meet a CHD family with their CHDer this Saturday for a bit, then meeting another one or two on the way home to Michigan, then will be meeting some in Michigan & Ohio when my free time allows. Love sharing my story and spreading Hope!!***

I'm going to end my post with a picture that I found of me from 4 years ago, I took it and made it black and white, then found a quote I loved.... this is the finished product. :)

With Lots of Hope, Love, and Faith,

Thursday, March 10, 2011

March Update! Lots going on & will get Busier SOON!

Hello Everyone!

**First off: A HUGE “Thank You” too all the CHD Adults that gave me their information to use in my last blog post! You all are SO amazing and ins

piring… together we give HOPE and that we should be SO proud of! Keep living and fighting as that’s exactly what I continue to do!**

Now for an Update on me:

I’m doing pretty good. Most days I’m fine and live my “Semi-Normal” life to the fullest I can. I still get some weird feelings and/or beats that give me some chest pain. I never got a Holter as they won’t send one to me as I’m too far away and it’s just too much money to pay out of pocket… I’m already way in debit. I will be waiting till May when I get back to Michigan to get a Holter. I know if things are bad to go to the ER or call 911, but luckily it’s not that bad and they don’t happen very often… seems like when I’m stressed I get them. Lately it’s been my sleep schedule that has been really off. I can’t seem to fall asleep or scared to go to sleep. Sleep issues is nothing new to me, I’ve had them since I was little, but I think it’s at its worst, ugh. I just need to figure something out to make be able to sleep at a good time and have a peaceful sleep. I’m hoping and praying I can find something… trying out reading and TV right now… I know TV probably isn’t best though, but I watch boring stuff to make me tired.

Well, it’s getting close to moving time!! For those who don’t know: I’m temporary living in California, but was born and raised in Michigan… that’s where my family and doctors are. This move to California was a 1 year thing for my boyfriend’s internship. We might move back if he gets offered a job and if that happens I will get doctors over here in California. Anyways, we are moving back to Michigan (via car like we did coming over here) April 30th. April 28th is Chris’ last day at work, April 29th we are loading up, and the morning of the 30th we are heading on the road. We are already starting to pack a bit and sort through things as we have more stuff now then what we moved here with almost 11 months ago.

I’m SO excited to see my family! I miss my family SO much and I know they miss me! My family is and continues to go through many struggles and not being there for them makes me sad. I’m going through my own struggles, but to be with family for love and support is what I miss. We keep in contact though, all the time... love cell phones & the internet.

When I get back to Michigan I will be having lots of doctors appointments including 2 Cardiologist appointments: 1) I will get a Cardiac MRI (my 1st one ever) and the 2) I will get an Echo, EKG, Stress Test, and blood draw (all which I’m use to). I will also have a dentist appointment, my yearly physical, maybe an eye appointment (for my eye muscle disease), and maybe a back appointment (for my scoliosis). My mom is loosing her house and she needs to be out sometime in June, so I will be helping with that. I’m also graduating college in December (have a lot left to finish), filing bankruptcy, and spending time with my family who I haven’t seen in a year.

So I will have A LOT on my plate! I will TRY my best to give a few updates, but I will be all over the place! I will FOR SURE update on my Cardiologist appointments.

The best way to find regular updates on my is my Facebook and most of my CHD community/family are on my FB Friends list, but those who aren't and are interested in finding me please send me an e-mail and let me know who you are so I can tell you how to find me on Facebook.

Ok, that’s all for now. Thanks for reading! Sending many **Heart Hugs**, thoughts, and prayers to SO many!!

I’m going to end with a recent picture of my niece, Lily (16 months now!), that I got from my mom.

Auntie Lauren misses you Lily!

With LOTS of Hope, Love, and Faith,

Monday, February 7, 2011

Hope!... Here are 20 CHD Adults (myself included) that are Proof there is HOPE!

HOPE! That is a BIG word with BIG Meaning!

The definition of Hope: "a virtue defined as the desire and search for a future good, difficult, but not impossible to attain" (taken from

Hope is something we all need and hold on to! Hope can be difficult but it is NEVER impossible and CHD Adults are living proof of that Hope!

I know you don't hear about CHD Adults in the CHD Community very much, but we are here! There are over 1 Million of us in the world! A little over 80% of CHDers make it to Adulthood AND over 50% of CHDer today are Adults!!

The True reason you don't hear from us much is despite all over our hardships, pain, and limitations we are busy living "Semi-Normal" Lives! AND that is an AWESOME and AMAZING thing!! We are told my many to live and LIVE we do despite any limitations!

Here is 17 faces and stories of HOPE starting from the youngest to the oldest (I'm included):


Kenneth Castano, 22

CHD: HLHS (3 Open heart, 3 caths., 1 pacemaker in 2005)


My name is Kenneth and at the age of 22 years old I'm proud to say that I'm the first Northeastern SURVIVOR. They say I'm the first Latino nationwide....Who knows....First 16 years with NO meds whatsoever....Currently on 3 a day..Fontan and all other surgeries done by Dr. Norwood HIMSELF at CHOP..I am a recent graduate of the CNA program and will be an RN in 2 years and a half. I already have a job at a ER in my home-state, NJ....Die-hard NBA fan...Favorite team: NJ Nets....Huge NY Yankees fan....Huge sports fan period...

My main goal right now is to spread as much CHD Awareness as I possibly can. CHD Parents: Please allow your child to live a normal life. They will learn to adjust on themselves, however, knowing their limits. If they feel they need to stop and take a break, they MUST stop...I want parents to know they can reach me on Facebook and ask me anything they want. I always look forward to meeting new CHD parents and answering questions...In my area? Then I want to meet you! I would go pay you and your little one a visit....Oh yeah, one more thing.....CHD Parents and Dr.Norwood YOU ARE MY HEROES....

Contact Information for Kenny: Facebook page "KENNY- ADULT HLHS SURVIVOR" or add him on FB: Kenneth Castano


Zoe Dickson, 23

CHD: Transposition of the Great Arteries (Senning procedure at 9 months, Pacemaker implanted at 22 due to a slow pulse of 30)


I work at southampton general hospital uk as a nursing assisstant.


Contct infomation for Zoe:


Lauren (aka me...since your reading my blog), 23

CHD: Tricuspid Atresia, HRHS (I've had 2 open heart surgeries (including the Fontan), 2 heart caths, 3 eye muscle surgeries..I have a few other medical issues...eye muscle disease, scoliosis, muscular skelio spaums, etc)


I wasn't diagnosed till I was 11 weeks old. My mom knew something was wrong as I was having all these symptoms and for 6 weeks the pediatrian blew her off till one day she demanded that he send a write up so she could take me to the ER and that's what happened. An intern at the ER had just learned about CHDs and knew that it was most likely my heart, he took me from my mom for an x-ray. The x-ray showed my heart very enlarged and most of the right side of my heart missing. I was in severe heart failure and they weren't sure I'd make it the transfer to the Children's Hospital, but I did. I surprised so many doctors and have thrived! My childhood was "semi-normal" minus meds, annual check-ups, some limitations, and a few bumps in the road. Growing up I was in plays, bowling, and enjoyed the simple things in life (still do). I never had many friends, but the ones I did have I kept close. I had many life experiences (minus my CHD) that I'm grateful I had and grateful to have had such a pretty happy & "semi-normal" childhood despite limitations like not being able to be outside when it was really hot, not being able to play contact sports, or not being able to have the energy that other kids my age had.

At 23, I'm over 21yrs Post-Fontan and doing pretty well. I do have some issues, but I continue to live to the fullest I can despite my limitations. I have a wonderful and amazing boyfriend, Chris, of over 2 years. I'm graduating college this December with a degree in Psychology and I want to be a Child Counselor for children with health issues. I love to hang out with my boyfriend and people that mean the most to me (close friends and family). I enjoy writing, reading, bowling, talking, laughing, eating, and just enjoying the simple things in life. I've seen and done many things in my life including a one year temporary move to California. I don't know what the future holds for me... it will most likely hold more surgeries, procedures, etc BUT I have many goals I plan on making like writing and publishing my own book, getting married, having children (whether through adoption and/or surrogacy if I can't carry my own), and enjoying more new "adventures". My life with a CHD hasn't been easy, but it's been full of many blessings. I'm grateful to all the doctors, surgeons, my amazing and strong parents, and God for everything in my life.

Advice to CHD parents: Give your CHD as "normal" as a life as you can despite limitations. If they can do something, then let them! Let them live as much as the can! No one is promised tomorrow, so where ever they are make the best and make memories. Don't focus or dwell on their CHD all the time and as they grow make it a point to tell them age appropriate things, yet teach them not to dwell either.


Contact information for Lauren: This blog (, e-mail: Sweeetie2516(at)aol(dot)com (Sweeetie with 3 e's), and you can find me on Facebook under: Lauren Celeskey


Morgan, 24

CHD's: VSD, sub aortic stenosis, bicuspid aortic valve, malformed mitral valve, & coarctation of the aorta, (VSD Closure with Dacron Patch 4/21/88, Sub aortic resection via OHS 3/19/1991, and Radiofrequency Ablation for SVT 3/26/2009. I also have Asthma and GERD with Nissen Fundoplication 2/2006)


My name is Morgan, I am a 24 year old Congenital Heart Defect SURVIVOR! Yes, I've been through alot of stuff medically, 2 open heart surgeries, and an ablation among other things But first and foremost I am a Daughter, a Sister, a Girlfriend! I'm A Full Time Registered Respiratory Therapist! I love to listen to music (Think Dave Matthews, The Tragically Hip, O.A.R. I'm a product of the 90's) I'm happiest Sitting in front of a bon fire with friends and family or cooking out on the grill after a long summer day of puttering around outside. Yes, I have bad days! Everyone does. The trick is to roll with the punches, and to know how and when to listen to my body!

If there's anything I'd like CHD parents to know is that as hard as it seems early on, There is a big likelihood that your CHD kid will probably grow up to be a "normal" (wait, what is that?) kid! Don't forget this fact! It will pay off big in the long term. Don't smother your CHD'er more than likely they will be able to self regulate their activity. Teach them early on to do this! Teach them about their heart early on, let them know its ok, and you'll be there to answer all their questions! Teach them to make their way taking care of themselves. . . as hard as it may be for you to accept, they will eventually have to take their heart care into their own responsibility. . . and feel comfortable and confident doing this! Planning for the future is the easiest way to help this happen! Empower your CHD'er to ask questions, talk about the things that concern them about their CHD and to learn to live for the future! Just know, and teach them, that no matter what, there will always be support available


Contact infomation for Morgan:


Gabrielle, 25

CHD: Hypoplastic Left Heart Syndrome (Surgeries- 2 open heart before age of 2 Norwood stage one and Modern Hemi Fontan, Stent placed, Too many caths to count)


I'm 25 year old from Michigan. I grow up in a small town with my mom and brother. I have a 6 month old kitten named Simba he is a companion animal and helps reduce stress and helps keeps my blood pressure normal.

I currently live in a one bedroom apartment on my own in Flint Michigan with my cat. My favorite music is country and christian. However my theme song does not fall into either category that song is TubThumping by Chumbawamba, the lyrics sum up my life with HLHS well:

"I get knocked down, but I get up again

You nay ever gonna keep me down."

I feel them lines are good lines to live by. I have been knocked down but as my cardiologist says no one will ever keep me down.

I think I'm most proud of living my life. I don't let having a heart defect get in my way of living. We get only one shot at this life on earth we should live it. I also am proud of finishing a 10 mile race called the CRIM. It is this big thing in Flint and a friend one year said you should walk the CRIM. Doctors always said I would never go out and be in any marathon race so to prove him wrong I partook and finished a mini-marathon, took me over 3 hrs to finish, but I was not the last to finish, and I raised over $500 for Childrens Heart Foundation for finishing. I like to raise money and awareness for CHDs.

I do have a few goals one is to graduate from Michigan-Flint someday. I want to work for a heart organization and help research and other families. My dream is to see a reason why HLHS happens and find a cure for it once and for all in my lifetime.

Advice/tips for CHD Parents: We are always grateful for what you chose to do for us. You chose to give up a chance at life. Even when were growing up and teenagers and you have to say no to something we may not say were grateful we may ever say we wish we weren't sick, or other things. Remember we speak it out of anger not towards you, but towrds our peers, towrds ourselfs. We are angery right now because we are different and we haven't yet learned to accept it outwardly. It takes us time to accept being "different", accept being "sick". We don't like it anymore then you like seeing us sick. So even when we don't say it thank you for choosing life for us.



Cortney, 25

CHD: Complex cyanotic heart disease including ventricular inversion with LTGA, a hypoplastic inverted right ventricle, & coarctation of the aorta (Has had a coarctation repair and a classical Fontan with an atriopulmonary connection - 2 open heart and 2 closed heart surgeries as well as an ablation)


I love fireworks, summer is my favorite season and kids make me smile. I dislike pure chocolate (I know, I’m crazy) and rollercoaster’s freak me out. I love my Fiance more than than anyone could imagine, I have amazing friends and as you can probably guess my family means the world to me. I am a picky eater, I have a congenital

heart defect and I am fluent in American Sign Language. I am a teacher for deaf and hard of hearing children, I am 25 years old and I love to travel. That is pretty much my life in a nutshell!

Shocked? Confused? I know, it seems odd that my congenital heart defect is right in the middle of being a picky eater and the fact that I am 25 years old. Believe it or not that is how I view my defect. It is simply part of who I am and what makes me, me! I have had 2 closed and 2 open heart surgeries, the last one was when I was 8 years old. Yes, of course, since then my life has been a rollercoaster (and I already told how much I dislike rollercoasters). Numerous medications, lots of doctor appointments, hiding my scars and not being able to run the mile in 4th grade has not been a breeze. But, being able to focus on the positives in my life and not making my defect the definition of who I am has made me enjoy life to the fullest.

I promise you that I have the best parents in the entire world. My mom knows me better than I know myself and my dad has made me an optimist (and if you have a congenital heart defect, you know, you MUST be an optimist). So you can’t hike to the top of a mountain? Believe me, taking a cable care up and not getting sweaty blistery feet is better anyways. So you have scars on your chest? At least you can appreciate every moment of your life. So you are the most fragile of all 4 siblings? At least you have brothers and sisters who worry and care about you. So you have a hallucination as you wake up from surgery that a little man, who looks exactly like the guy from the Monopoly board game, tells you not to give up because you have too much to lose? At least you have hope. Blaming your congenital heart defect for your patience, kindness and compassion isn’t so bad, right?!

It’s weird how I only remember certain things about being a kid with a congenital heart defect. I remember waking up in the ICU squeezing my Nonnie’s (grandma’s) finger. I remember the excitement I felt when I came home form the hospital and all of my neighborhood friends welcomed me with posters and balloons. I remember the little guitar that my grandparents bought me to cheer me up after surgery. And for that, I can honestly say that I am the luckiest girl in the world. I have more people who love and care about me than I could ever ask for.

Yes, I do know that my life will continue to have its ups and downs. Will I need to have another heart surgery? Will I be able to have children? How many times will I have to switch my medications? The list can go on. But one thing I do know is that I will always continue to focus on the positives. My Fiance and I are getting married in July and there is nothing that will stop me from smiling now. If there is a blip in my life I must listen to my dad, “that too will pass”. The same goes for you. Yes, you. No matter what happens in your life listen to the little Monopoly man, life is waiting for you!


Contact Information for Cortney -Email:


Yasmin, 25

CHD: Tetrology of Fallot (2 open heart surgeries)


Hey There. My name is Yasmin and I am 25 yrs old, and I was born with a heart condition callled Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of 3 yrs old, and my second at the age of 20 yrs old.

When I was born, I was called a preemie which meant that I was premature and my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).

I am the wife of a loving man, mom to three great lizards, sister, daughter and aunt. I am a high school graduate, working to become a nurse so that I can help families. I love my life the way that it is and wouldn't give it up for the world.

To any CHD parents: I would suggest that you let your child grow up as normal as possible, don't be over protective, just let them be a kid. As they get older and wonder why they have a scar down their chest, tell them, and don't sugar coat it.


Contact Information for Yasmin: If you want to contact me you can at:


Alexia, 25

CHD's- Double Outlet Right Ventricle, Multiple VSD's,Mild Pulmonary Stenosis
(Procedures-Pulmonary Artery Banding at 2 days old, BT Shunt at 6 months old, An experimental repai for the Double Outlet Right Ventricle at 4 1/2, An Aortic Valve Replacement at 12 years old, A 2nd Aortic Valve Replacement at 19 years old, 2 Cardioversions to return my heart to a "normal" rythm (1 in 2004 and another one in 2008), Countless caths, 1 cardiac CT)


I have had the same cardiologist since I was 2 years old.My mom and I had been living in Sacramento for six months when we found out there was a Pediatric Cardology practice just fifteen minutes away from our house.She doesn't remember much of that first meeting except feeling overwhelmed. My grandmother accompanied us and she was the one who from the begining bombarded the cardiologist with question after question.To this day he still avoids talking to her.In fact it's an old family joke that he's afraid of her.When I was 4 1/2 it was time for my 3rd OHS. It was supposed to be the Fontan,but the idea that I could need a heart transplant later in life scared my mom so she asked if there was another option. Well the team at UCLA worked on it and they came up with an experimental surgery.I don't even know the name of it,or if they do it anymore.But we went for it and it was August 1990 when I had that experimental repair.I was hospitalized for 3 weeks.I then had a cath when I was 7 and then another one when I was 10.At age 12 I went into Congestive Heart Failure. I was extremely sick and no one was sure I'd even make it off the operating table.I needed an Aortic Valve Replacement and fast.I made it through the surgery and I was put in a medically induced coma to let my body heal and after six weeks in the hospital (4 of which I was intubated) I was released. For my most recent surgery I was in much better shape and this time spent a record 8 days in the hospital following my 2nd Aortic Valve Replacement. I have had a few issues with arrhythmias,but nothing requiring hospitalization for nearly 3 years.

I think the thing that surprises people most often is how much of a coffee drinker I am.I am pretty sure I got that from my mom.I also hate the smell of bananas for some unknown reason.That is a recent development. Up until recently I had always had cats in my house. My favorite color is purple and in fact I cannot stand the colors orange or yellow. I seem to gravitate to the darker colors for some unknown reason.I love music and I am a huge movie buff.I was also engaged at one point,but I felt like I was too young to be making that kind of commitment to someone so I broke it off.To this day we are still friends which I am so greatful for.

I have obtained two degrees at my community college.One in Criminal Justice and one in Social Studies. I also technically graduated from the community college 2 years ago,but I am hanging around until I figure out my career path.I have really been struggling with figuring that out.I have yet to find my niche.I love to read and not just boring textbooks either but really good thrillers.Ones that have you on the edge of your seat.At this point I feel as though I am at a crossroads in my life. I don't know what I want in regards to my career or love. I know I want a career and I want to fall in love,but I am no hurry to rush any of that.I'd rather wait and know for sure that the choices I make regarding love and my career are the right ones for me.

The most important thing I think parents need to know is to trust their instincts. They know when something's not right with their child sooner than anyone else. They need to be their child's advocate. The second piece of advice I would give parents is to tell their child the truth. When something is going to hurt,tell them because they will remember for a long time if you lie to them.Another thing is not to let your child live in fear. Of course it's scary having something seriously wrong with the heart,but no one is promised tomorrow and even if they don't have a CHD,they should still live life to the fullest.Encourage your child to live life to the fullest,despite any limitations they may have.


Contact Information for Alexia: Email:, Find me on Facebook under Alexia Boesen.


Jason, 26
TGA, VSD, Pulmonary Stenosis (3 open heart surgeries and many Cath procedures)


I'm a 26 year old survivor of TGA with my right ventricle still doing all my pumping. When I was an infant, I had the senning procedure. It was still unsafe for them to do the switch at the time, because It was such a new procedure and a new thing. They only gave me a 20% chance of living, but I fought and 26 years later, i'm still here. I am married to my Beautiful wife Jennifer. We have been together for almost 8 years and almost married for one now. I got my nursing license and I am currently a treatment nurse at a local rehab hospital. It really keeps me on my toes. I try my best to enjoy my life as best as I can. My wife and I are expecting our fist baby, and we couldn't be more happier.

Hobbies- I love to go to car shows and drag racing. I love driving my car and just hitting the open road.
Goals-I would love to go back to school and get my RN and work at a cardiac center.
I am most proud of myself by getting my EMT license and my LVN-II license. Also proud of myself for just being here today.

My best tip for any CHD parent is don't let the CHD run the child's life, let the child live their life with a CHD. If the MD tells you it's ok for them to run or play sports, try your best to get them to play as many sports as you can. Let them swim, (if they are cleared to) and let them enjoy their life.

Contact Information for Jason: You can find him on Facebook under: Jason Riley


Christopher, 26

CHD: Tricuspid & Pulmonary Atresia (Waterson Shunt Aged 12 Days &Various Other Surgeries Not Related To Heart) Had Heart & Double Lung Transplant Aged 22, Struggled With CHD For 22 years until i got my lifesaving transplant


Hobbies Are Watching Horse Racing & Wrestling Listening To Music also I Support Newcastle United Football club (Toon Army) I Love Playing Darts and going to Music Concerts

My Proudest Moments Are: How my mom has coped with my illness she has sacrificed most of her life to support me, Meeting Girls Aloud Before My Transplant It Was So Special, Proud To Be A Member Of An Exclusive Club CHD, Going To London And Having My Picture In A Gallery, Getting Out Of My Wheelchair And Living My Life After 20 Years Of Pain And Suffering

My Advice Is Never Give Hope As My Doctors Said I Would Not Survive Into My Teens HOW WRONG THEY WERE !!! And Always Have Faith In Your Children They Are Stronger Than You Think



Jeni, 25

CHD: Hypoplastic Left Heart Syndrome (2 open hearts including the Fontan and a pacemaker)


What is or are your greatest accomplishment(s) in life (so far)? Being married to the man I love with all my heart because as I was growing up all I wanted to be is a wife and a mother.

What has having CHD taught you?
I've learned to appreciate every breath God gives me. I have learned that no matter what I I want to do it for the glory of God. I've learned to not think of my heart condition as a problem, but as a blessing from God.

Briefly share your story of growing up with CHD:
It is next to impossible to briefly share my story growing up with CHD...but I will try. My family was always good at teaching me to never be ashamed of my scars and heart condition no matter what. Despite getting constantly teased and ridiculed by cruel children in school, I always knew that it was a problem they had...I wasn't the problem. My family also made an effort to always treat me as normal as possible. They always saw a uniqueness that shined from within me. They always encouraged me to persevere and never give up. It was hard in my earlier years because I always felt like I was the only child my age with a CHD. Back then there wasn't internet to communicate to others. I only knew of 2 or 3 others around my age with my HLHS until I went to Camp Del Corazon at the age of nine. Camp Del Corazon is a camp for children and teens with CHD or acquired heart disease. I find a certain bond in these people from Heart Camp that I do not have with anyone else, simply because we understand one another's rare life challenges. We all have scars on our chests, medications to take, doctor appointments to attend, and heart surgeries to go through. It was a huge turning point in my life. I can honestly say that going to Heart Camp has been one of the best things to ever happen to me.

How has having CHD changed your life (other then the obvious health issues)?
My heart condition is not just a part of is who I am. I'm not sure what kind of person I would have become if God wasn't in my life. If He hadn't blessed me with all the love and support of all the people I am close to, I probably would not be here today. Each and every one of these cherished individuals has played a role that contributes to the formation of who I am; they all helped me have a positive outlook on my heart disease. However, the Being who by far made all the difference is my Lord and Savior. I always thought of my heart disease as a blessing from God despite what I went through, instead of feeling sorry for myself and being depressed. I know that I am blessed by God to have such a wonderful understanding of the beauty of life. This in turn, has given me the desire to live every single day as if it was my last.

**Taken from her interview on another blog:


Contact Information for Jeni:You can add her on Facebook under: Jeni Busta, BUT please let her know who you are & why your adding her. Thanks.


Stephanie A, 27

CHD: Perimembranous VSD, Sub-Aortic Membrane/Sub-Valvular Stenosis, Dilated left atrium with increased volume index, and cardiac rhythm issues. Fortunately, never any surgeries!


I'm 27 years old and live in Indiana. GO COLTS! :0) I am a Nurse Practitioner and work in cardiac care in the hospital setting and am pursuing my Doctorate degree at the present time. I am passionate about my cause and have lobbied on Capitol HIll with ACHA to help spread awareness for congenital heart disease. I ran my first marathon this past October, love my family and friends, and love traveling.

I would like to let CHD parents know to treat your child NORMALLY. My parents always made a point to not differentiate how I was treated from my two sisters. I attribute this as the reason why I was never held back by having a heart defect.


Contact Information for Stephanie A: Always available to talk to anyone in the CHD family. Facebook (Stephanie Arnold) and email are best.


Stephanie V, 32

CHD: Congenital Heart Disease consisting of multiple heart defects, (L-transposition of the great arteries, single ventricle tricuspid atresia, pulmonary stenosis, atrial septal defect, right aortic arch and cyanosis... also born without a spleen (asplenia)...Surgeries that have been performed: Left Blalock Shunt at 6 months old, Glenn Shunt at the age of 10, followed by a Modified Fontan at age 14. *I love my scars!!!* I've recovered from 3 transient ischemic attacks (mini strokes) and have had too many tests to count. SO, clearly I am here for a reason!!!).


I'm now 32, and doing as well as can be expected physically and living a fairly normal life. Due to the heart problems, I'm unable to work, drive or have my own children. I'm trying to be more physically active to become healthier and stronger. 2010 was the first year that I've actually put on some weight and don't look so sickly. I enjoy being a 'home-maker' and taking care of the house and my fur-babies! (I have 2 dogs and a cat.) I enjoy reading, writing, and playing on the computer, I love camping, and being outdoors in the summer (if it's not too humid.)

Growing up with CHD was a struggle, I never felt like I fit in, as I was the only one in my hometown with a serious heart problem and would have to travel 2 hours or more to the cardiologist. I was often made fun of and would come home from school crying on a regular basis due to the teasing, because I had "purple lips". I missed a significant amount of school due to tests and surgeries, but managed to pass all of my classes. And when I thought grade school was tough, highschool was much harder as now there was a whole other larger group of kids to ruthlessly tease me. I fell into depression because of this, and became suicidal. My mom, who is my rock, gave me a wake up call, and I remember to this day what she said to me. She said " You are stronger than them, stronger than their ignorance and that I didn't try all these years to keep you alive for you to give up on yourself, you've made it so far, keep going..."

My words to all of you heart parents...Please, be strong, God won't give you anything you can't handle. It seems unfair, and you may not understand the reason for the illness, but if you spend your time worrying about why your child is ill, you will never have peace or be happy. Be there for your heart child, listen to them and take it one day at a time. Thank you for taking the time to read my story.


Contact Information for Stephanie V:You can contact me at or find me on facebook, Stephanie.Voakes ...Please just put CHD in title or friend request.


Christy, 33

CHD: Tetralogy of Fallot with VSD and PVS (My first surgery was in 1981 I was 2 years old, I had my pulmonary valve replacment when I was 30 in 2007)


Since my first surgery I was pretty normal. Did a lot of things that my brothers and sisters did. I also played sports in high school. I was a big time runner. still run today. but not as fast. I am also married to a wonderful man. hes been by my side though it all. The best thing that ever happen to me was becoming a mom. My son was also born with TOF. Doctors say it would be a 50/50 chance of passing it to my child.

I love to have fun. I am one for not letting life pass on by. u have one life so LIVE IT! I have over come alot in my 33 years. the worst news after living with only having one surgery was the though of having another one.

I am doing well as of today. I don't see my doctor until 2012. I was going yearly. I still am very active. I do have a part time job. and I am still running. a few days a week at the gym.


Contact Information for Christy: I do have a facebook page so feel free to add me: Christy Smith


Angela (Angie), 35

CHD: Tricuspid Atresia (3 Open Heart Surgeries by the age of 8, One was the Fontan Procedure)... Heart Transplant in 2009


I was born with Tricuspid Atresia on 2/11/75. They doctors never found my disease until I was 6-8 weeks old. I didn't have my first surgery til I was 4 or 5 years old. They thought I was to little and not strong enough til then. My second surgery was the Fontan procedure. My third was to clean an artery or so they thought, they did not need to do this but fixed an artery. (I believe) I was well for a long time until I was 16. Then they talked of a pacemaker because of Atrial Flutter. That never happened. At 22 I got married and began having episodes of flutter again. Then the put a pacer in which caused more a-fib and I had to have two cariac ablations. I still remained ill, got divorced and moved back home with my family in 2002. I became ill again in 2005 and they replaced my pacemaker. 2006 I went in to A-fib again and was in so long it is believed I had a mini-Stroke. Feb 2007 I was told I needed a Heart Transplant! I was going through testing as I planned my wedding. They found a lump in my throat that had to be biopsied to be sure that I didn't have cancer... I had a peri-thyroid removed. The Monday after my wedding, and was placed on the list on Sept 12th, 2007. I waited for my Heart until Sept 28th, 2009. Now 1 year and 4 months later I feel better then I ever have and still wonder what I should. After never being able to do anything you are afraid to try new things.

Love Pittsburgh Penguin Hockey and Notre Dame Football. Goals: My family and I run a non-profit organization to help other CHD and Heart Transplant Patients with Medical Bills and Medications and raise awareness for CHD and Organ Donations. We also you our foundations to raise awareness of Peritoneal and Ovarian Cancer as my mother just past of this diagnoses!

What you want to let CHD parents know, tips, etc. I am now 35 years old... when I was born they never thought I would survive or that I could even be considered for a Heart Transplant. Technology is ALWAYS progressing... they found ways to keep me alive and I am 1 year and 4 months out from a Heart Transplant! Keep the faith that Doctors will come up with a way to keep your little one safe and going!


Contact information for


Kathy, 36

CHD: Tricuspid Atresia and Pulmonary Stenosis includes ASD and VSD (Potts (1974), Central Shunt (1980), Reconstruction of the Potts/Modified B-T shunt (1989), Classic Glenn (1989))


Hello!!! I am one of those old heads with a heart defect. When I was born in 1974, the pediatric detect a heart murmur, but told my parents to take me home I would grow out of it. I am 36 and still waiting to grow out of it. I was sleeping through the night and not eating. At my 3 week check-up, my parents were told to take me to UVA. There they told them that they could see the blood going into my heart, but not exiting. I was to return at 7 weeks of age. At that time, a heart cath was preformed and it was discovered that I have Tricuspid Atresia. My parents were told that I would likely not survive, but if they wanted me to have a chance then they needed to operate. I had the Potts done at this time. (I do not believe this surgery is done anymore.) I came home after 2 weeks and started thriving. I was still slow to gain weight and I didn’t really walk or talk until I was almost 2 years of age. (Back then there was no speech therapy, physical therapy or feeding tubes.)

At the age of 5, I returned to UVA and had my second surgery, the Central Shunt. I remained in the hospital for 3 weeks and returned home to thrive some more. It took me a long time to learn to read and I was finally identified as Learning Disabled at age 10. I was removed from the program at age 13 because they couldn’t help me anymore. I also took Physical Education and hated every minute of it, but I did it.

During this time, it was noticed that my Left Pulmonary Artery (LPA) was very narrow and this limited the likelihood that I could have the Fontan. Finally, at the age of 15, I was taken to the Mayo clinic for reconstruction of the Potts in hopes of forcing my LPA open. It did not work and three weeks later, I had the Classic Glenn done. I made the decisions for these last two surgeries myself. I have studies the human body and heart for many years and my parents knew that I understood it better than they did.

In 2007, I had my last heart cath and it was discovered that I my LPA has closed off with a few collaterals feeding my left lung with blood. My prospects for future surgeries are limited. I have been offered a heart/lung transplant since I was 10, but I refuse. My oxygen stats run in the 80’s.

But what about me! I am happily married to a wonderful man and we have 2 cats as our children. (I didn’t want to take the risk.) I have a Master’s Degree in Chemistry and Life Science and I work as an Adjunct Professor at a local community college. I hope someday to teach while sitting on my sofa in my jammies. I love to learn, particularly human anatomy and physiology, psychology, cell biology and genetics. I tend to be rather nerdy. I love to drive and travel. I am learning to love to exercise. I love to drink hot mint tea and I think afternoon naps should be a requirement. Life is good!!!! The LORD has blessed me beyond my wildest dreams.

My motto: Tricuspid atresia has shaped my life, but I refuse to let it define me!!!


Contact Information for Kathy:


Cort, 37

CHD: TA, TR (3 open heart surgeries & pacemaker, 1977, March 1987, January 6, 2003 ... hernia repairs ... etc.)


-Hobbies, goals, things you've done that your proud of, etc just brag about yourself in about a 4-5sentences
...taking pictures,
...road tripping,
...driving my family of cars, radio shows when able,
...collecting (models, HO scale train, legos, etc.),

I'm not exactly sure I'd call them goals, per se, but I completed college (4 years). And, this summer (June/July 2011), I will complete my travels of the different sections of the continuous 48 states. I can link you to my road trip info, if you want. Another goal I've accomplished ... owning one of each generation of the Monte Carlo. I have a 1972 for the first gen (1970-72), a 1976 for the 2nd gen (1973-77), a 1979 for the 3rd gen (1978-80) and a 1981 and 1987 for the 4th gen (1981-88).

As far as advice ... relax and have fun with your children. Enjoy them as much as possible, while watching out for them ... and letting them be them. And, where appropriate, discuss their CHDs.....


Jan, 43

CHDs: ASD, VSD, PDA, Tricuspid Atresia, Pulmonary Hypertention... NO Surgeries!


I was born in 1968 with ASD, VSD, PDA, TA and PH. Although my parents were told that I would not live past a year, and that I would never hit the milestones any "normal" child would hit. Not only did I hit all the major milestones I surpassed them. I lived and thrived. I went to school and graduated.. I got a job, I learned to drive.. I do almost all the same things any other "normal" person can do. Sure I have my limitations.. I will never run a marathon or climb a mountain but that has not stopped me from doing the things I wanted to do. I have never had any surgeries or repairs.

My hobbies are reading, writing, jigsaw puzzles, spending time online. I started chatting with parents of children with CHD's back in 2004 and in 2007 I became Membership Director for A job that I truly love and enjoy doing. I am currently trying to get more involved in "off"line support groups as well, again working mostly with parents who have children with CHD's.

What I want to let CHD parents know, tips, etc: When I was born the drs. didn't know anything about CHD's and there was no internet so my parent's information was limited. This made my mother a "helicopter mom". Always trying to prtect me and never letting me do things by myself. My parents were told not to let me do to much physical activity as it would wear me out quickly and make me sick... We know so much more in 2011 than we did in 1968. I can't imagine how hard it is to be a parent but I can tell you how hard it is to grow up with a "helicopter mom". I used to tell my mother she didn't mother me she smothered me. I know she only had my well being in mind, and she did the very best she could with the information she had... but please...try to resist being one of those parents. We are smart kids and we need to figure out our own limitations. We will learn when to slow down and when to rest. Sure we will test those limitations every chance we get, but you need to let us otherwise we will never know what we can and can not do. We will all get scrapes and scratches.. broken bones and coughs and colds.. It won't be the end of the world if we do.


Contact Information for Jan:


Rita, 45

CHD single ventricle tricuspid atresia heart is 3times enlarged and have been diagnosed with Eisenmengers syndrome 4 yrs ago. (Surgery: Hanlan-blaylock, pulmanary shunt 1969, multiple cardiac caths, cardiac ablation twice)


I take quite a few meds but it doesnt really bother me b/c I have taken meds all my life.. I am pround of the heart GOD has given I feel that I have been specially chosen to take care of this heart and I do my best to do so . I am most pround of who I am and the woman I have become of my faith and my family they have strenghened me my whole life. I have never really been the kind of person not to do things I do what I like and if for some reason I cant accomplish the task then I work at it and make sure I get it done NO ONE better tell me I CANT b/c I'll die tring and show them I CAN!!! I am very independant. My family has alot to do with that my siblings always treated me like a little sister should be lol.. they teased me ,scared me ( even when dr's told them they shouldnt) but I was ok I am tuff!!! I am number 5 out of 6 kids I have an older sister 3 older brothers and 1 younger brother... my parents allowed me to do alot of different things driving, working, going away to camp with church, I had a great childhood and teen yrs.

Parents plz allow your children to do what they believe they can manage b/c they will learn themsleves what their bodies will let them accomplish and if they cant do it now they can grow into it and do it at a later time juwt give them encouragement and most of all LOVE>> you were chosen by GOD to care for these little angels.. plz remember to tell your children to talk to their hearts and to let you know how they feel b/c only they know b/c they live in their bodies not you.

I enjoy crafting , sewing, and walking my little dog SAMSON I do alot of sewing for children and my sister and mother and I have a little business so that is what I do now but I did go to college and I used to be RMA ( did my trianing at Valley Childrens Hospital Fresno with my own Pediatric Cardiologist which was a blast ) Phelbotomist, Med Tech, and trained as a Pediatric Nurse which I enjoyed very much but at the age of 23 yrs old I became to ill to sustained a 40 hrs work week and dr's suggested that I become dieabled so I have been disabled for the last 21 yrs .

Now I dedicate myself to my husband and my home and my step-children & grand children; since I never had children of my own dr's didnt think it would be a good idea for me b/c the size of my heart and the under-development of my lungs.

There is so much more I can say about me but just remember this I love ME b/c my heart and ME are one and GOD made ME just the way I like ME!!!! I am CHD


Contact Information for Rita:feel free to contact me at if you have any questions thanks for your time and GOD BLESS!!


Pam, 50

CHD: Tricuspid Atresia, ASD & VSD. Later, I was also diagnosed with Eisenmenger's Syndrome.... NO Surgeries!


I was born on Jan. 1, 1961. Six months after my birth, while my mother was feeding me, she noticed that as she held me, my heartbeat was irregular & was beating quite fast. She made an appt. with my pediatrician & when Mom & Dad took me for that appt. the suspicion was raised that something was wrong with my heart. My parents took me to MCV (Medical College of VA) & I was tested & found out that I had Tricuspid Atresia, ASD & VSD. Later, I was also diagnosed with Eisenmenger's Syndrome. They were given the option of heart surgery which was a 50/50 chance of survival or leave me alone & trust in God. They decided not to elect for surgery & put my life in God's hands. God has been good....I turned 50 years old a few weeks ago!!

I had a great childhood & had my limitations during PE classes & other activities. I had many friends & lived a pretty normal life. I adjusted my life to fit my heart defect. I was married 17 years. We adopted a son but sadly that marriage ended. I was fortunate to meet the most wonderful man & we've been married almost 11 years!!!
I love to read, scrapbooking, photography, travel & love my wonderful family. I have flown to Hawaii & went on a cruise, went to the Bahama's, Puerto Rico & a few other islands.

To parents: CHD isn't the end of the world. You're child will know their limits & please do not hold them back from their dreams. Let them follow their dreams but always be there if they fall. Let them know they are special & it is okay to be a little different. Keep good medical records.


Contact Information for Pam: If you have any questions, I am on Facebook under Pam Kendall Determan or


Thanks for Reading all about these 20 (I'm including myself) amazing Adult CHD Warriors! We all LOVE to Live and LOVE to Inspire!

Please Pass this post around and spread the HOPE! Because the CHD Community always needs HOPE!

With LOTS of HOPE, Love, and Faith,