Tuesday, October 20, 2009

Answers to your Questions Part 1

Here are some of the Answers to Questions I have recieved from all you wonderful Heart Parents! Please, if you have any questions for me just leave me a message or e-mail me at: lceleskey87@gmail.com and I will answer them in a future post! =D

Also, before I forget... A HUGE "Thank You" for ALL the Congratualations on my new niece and kind words!!! It meant alot to me and made me smile!!! =D

OK, here are some of those Questions and Answers:

Q: What was the one thing that bothered you the most as a child growing up with a CHD?

A: The thing that bothered me the most was the fact that it was hard to keep up with other kids my age in gym class, on the playground, or just playing in general. Kids would always ask why I had to stop so much or sit out and friends asked the same, I would try my best to explain with the little knowledge I had about my heart condition at the time, but they usually didn’t understand. They would look at me different afterwards and sometimes didn’t want to play with me anymore and that was hard, but it taught me so much about other people and who my true friends are.

Q: Do you remember anything from the surgeries when you were younger?

A: I have one memory from my second open heart surgery when I was a little over two years old. I was sitting in a big red chair and had tube coming out of me. I was crying and asking for my daddy to pick me up, but he couldn’t because the doctors had to replace a tube. I remember the pain I was in, I remember not understanding what was happening only that I wanted to be held. Not the best memory, but I know it happened as I told my parents and they couldn’t believe I remembered. I have no other memories of any other heart surgeries or procedures. I do remember everything about my second eye muscle surgery I had when I was 8 and the one I had last year.

Q: What is different about the Fontan I got compared to the Fontan they do now?

A: I had what is called the Fontan Pilliation which was the originally designed Fontan procedure by Francis Fontan and his partner to fix patients with Tricuspid Atresia. Over the years the Fontan Piliation was modified for all one ventricle fixes. What they did simply was us everything that I had and make it work. I had three chambers intact so they used them. My one right chamber doesn’t do much, but it works to some extent. I only have one working ventricle though, so I’m considered a half a heart. The modern version of the Fontan bypasses the whole right side or left depending on the condition and makes the remaining side do all the work. From my understanding by doing this they reduce leakage from the side that didn't develop all the way, reduces the chances of blood clots as well (not sure how) , and reduces chances of high blood pressure.

Q: Do you plan/know if it is possible to have children?/What have the doctors told you about having children?

A: I do plan on having kids one day. How I will have them is still up in the air. I have always wanted to adopt and gestational surrogacy doesn’t sound like a bad idea either, though both are expensive. My cardiologist has told me that if I stay in the good health I’m in now then I shouldn’t have any problems having a child. I would be high risk, I’d need a c-section, medication would be adjusted, I would be monitored around the clock, and something unexpected could always happen just like anyone else. When I feel like I’m ready for a child, my cardiologist said to go to an adult congenital cardiologist with my spouse (when I have one) and talk it over before I get pregnant. If my boyfriend and I get married then we will talk about what we want to do. Though, in the back of my mind and in my heart I would LOVE to have my own child, but I’m not for sure if I want to go through with it. I have plenty of time to think about it though!

Part 2 Coming SOON! =D

I continue to pray for so many, special prayers for CHDers to stay healthy!! Sending warm **Heart Hugs** to ALL!!

With LOTS of Hope, Love, and Faith,

Thursday, October 15, 2009

I'm an Aunt!!!

As of alittle before midnight last night (Oct. 14th) I became an Aunt for the first time to an adorable little girl named Liliana Marie!!! I went to see her tonight and hold her!!! She is SO precious!!! Congratualations to my older brother, Ryan, and his girlfriend!!! I love them!!!

I found out that they are keeping a close eye on Liliana to make sure she is CHD free! Her pediatrican will see her once every other week for a few weeks to make sure everything is ok, plus she will not be discharged til Saturday. They are doing this because I have a CHD and it is now in the blood line. I asked why they just didn't do an echo... my brother and his girlfriend didn't know. My brother's girlfriend, Ashley, did have an echo before Liliana was born and nothing was found, but they are just being safe. Ashley is doing well and looks good!!! Liliana looks great as well!! I'm praying nothing comes up and she is healthy!! My older brother will be a great daddy I'm sure!! =D

Here are some pictures:




With LOTS of Hope, Love, and Faith,

Tuesday, October 13, 2009


To ALL you CHD parents and CHD adults out there: Do you have ANY questions that you were pondering my experiences with my CHD journey? ANYTHING!?!? If so, ASK it and I will answer them ALL and write up a post! =D Mind you these are my experiences and opinions only, I'm not a doctor and ALWAYS ask your childs (or your) cardiologist. I just know that doctors can't answer everything and get inside of the head of someone who has been there and done that.

So, if you have a question or questions either leave me a comment or e-mail me at (just delete the spaces in my e-mail address... I had to do this to keep from computer robots sending me spam): lceleskey 87@ gm ail.com

I came up with this idea when I was reading a CHD mom's blog about her CHDer might not be able to every ride a roller coaster. Now, I am NO DOCTOR, but to the surprise of many of you... I HAVE ridden a roller coaster! Actually, I've ridden almost all of the roller coasters at Ceder Point more than once! My cardiologist told me that I could ride most of the coasters, but the day I come off having chest pain is the day I'm never to go on one again. Well, I rode my first one when I was 13 and rode my last when I was 20. Honestly, I could have never gone on one and would have been fine, but what can I say I'm a dare devil in my own right haha. PLEASE KNOW THAT NOT EVERY CHD CHILD CAN RIDE A ROLLDER COASTER, THE ROLLDER COASTER QUESTION SHOULD BE POSED TO THE CARDIOLOGIST AS EVERY CASE IS DIFFERENT!!! I was just stating that it IS possible IF they are in GOOD heart health and the cardiologist says it's OK!!!

Considering I'm a one ventricle fix (though I'm a three chamber heart... that's how they use to do the Fontan) with a classic Fontan Pillation (old version). I've been quite surprised at what I can do... my cardiologist sure did surprise me with telling me I could ride a coaster... blind faith I guess, but I was doing VERY well and he DOESN'T tell everyone!!... EVERY CASE IS DIFFERENT, EVER KID HANDLES THEIR CONDITION DIFFERENTLY NO MATTER THE DEFECT!!! With that being said... BRING ON THE QUESTIONS, I DARE YOU!!! LOL!!!

With LOTS of Hope, Love, and Faith,

Sunday, October 11, 2009

Medicaid Update, Nasty Call Answers, and a Birthday Wish!!

Medicaid Disability Update:

I know I haven't given a Medicaid Disability update in sometime, I'm sorry about that. I've been so busy that it has slipped my mind. I did write my two State Reps. and I got a reply from one of them. His first reply to me said he would look into me case, which I was excited to hear. I recieved a second reply from him 5 days ago and he informed me that he can't help me get Medicaid Disability which makes me kind of sad, but I'm ok about it. I think State Reps. should have more pull in my situations, at least the State Reps. in my county. I wrote the State Rep. back and let him know what I think as well as a thank you for taking the time to write and try to help.

I did get a hearing date in the mail the other day, it's for the morning of October 27th. I don't have a lawyer, but I will try my best to sway them. I do have another letter from my Cardiologist, this one states why I can't work which I hope helps. I will let you know what happens.

Nasty Lawyer Call Answers:

1.) I do not remember what lawyers office called me, so I have no way of calling back or reporting them. I wish I was paying better attention.

2.) I do not have a lawyer, I have no money. I do know how to get a free one if or when I get asked to go to court for this, so I will worry then. I have alot on my plate right now.

3.) I'm trying not to let this nasty call to upset me any further, there is nothing I can do about it and I have no money to give them so they can't win this battle.

I thank everyone SO much for supporting me!!! I feel so blessed and loved with all the messages of support that I have recieved about this along with prayers!!! THANK YOU, THANK YOU, THANK YOU!!!! I LOVE you guys!!! It all means SO SO much to me!!! May God Bless ALL of you Sweet and Kind peopl!!! =D

One Last Thing: Today is my Little Brother, Aaron's, 11th Birthday!!!
Happy 11th Birthday, to my Spunky Little Brother!!! Your Sister Loves you VERY Much!!!


Aaron is of this year my little Football Stud!!!

With LOTS of Hope, Love, and Faith,

Friday, October 9, 2009

Irritated and Frusterated!!!!!!!!!!!!!!!!!!!!!!

I just got a phone call from a lawyer saying that they want to resolve my eye muscle surgery bills (from surgery last July) before anything futher happens. I NICELY explained to the man about my situation and he give me a LECTURE on how to be REPONSABLE and NOT get medical things done unless I can PAY for them!!! So, I tried to explain again... I have NO money, I have NO car, I CAN'T get a job right now, I'm LIVING off of LOANS!! I told him that I DID NOT ASK to be born with a CHD or other health issues, but I WAS and my HEALTH comes FIRST BEFORE ANY BILLS!! He told me that I should get a part time job then... He also asked me WHY I was going to college if I can't get a job now!!! I told him I have NO car (again!) and that NO ONE will HIRE me NOW BECAUSE OF MY HEART!!! He told me that I rely TOO MUCH on OTHER PEOPLE and that there are NO HANDOUTS in life and that I NEED to TAKE RESPONSABILITY NO MATTER WHAT MY SITUATION IS!!! OMG!!! I WAS SO ANGRY I WAN'T TO CRY!!! I CAN'T HELP the postition I'm in!!! I'm JUST getting by, what am I SUPPOSE to DO?!?!?! I'm going to college to BETTER my life so I CAN pay bills!!! He also told me to think about Bankrupcy!!! Then he said another snotty comment about how he is SICK AND TIRED of having to PAY for other PEOPLE'S MISTAKES!!! WOW!!! I'm SO NOT in a good mood!!! I WISH people were more UNDERSTANDING of SOME situations BECAUSE MINE is DIFFERENT then PEOPLE WITHOUT HEALTH ISSUES AND GO TO COLLEGE!!!


END of RANT!!!

Thanks for reading!!! =D

P.S.: I know I didn't have to take this phone call, but I've had non bill collecters come up on my caller ID as Unavailable that were impotant calls. I could have hung up on the guy, but I didn't want to be rude, just tried to nicely get my point across.

Thursday, October 1, 2009

Cardiology Appointment Results!

My cardiology appointment went very well! They moved me through my tests the fastest they ever have, they were on the ball! I like not alot of waiting hehe. The tests went well! My heart looks great! My cardiologist continues to be amazed at how well I'm doing! Alot of adult CHDers with my classic Fontan usually have some kind of complication (thus why they changed how the Fontan is done now), but I have none! My cardiologist was just so pleased and happy at how well I'm doing! I did have a few episodes of SuperVentricular Tachycardia aka very fast heart rate (I have excersie induced SVT's thus I've been on a beta-blocker for 4yrs.) during my stress test, but nothing to be concerned about... and I have NO rhythm problems! =D My cardiologist says to just do mild excersicing, but noting extreme. Other than that he says to keep living!

I told my cardiologist that I'm still concerned about the episode of very bloody stools that I had and landed me in the ER in early July as I've been having on and off spotting since then. He told me that he has been concerned as well. He gave me the name and number of a recommended GI doctor he would like me to see. He told me the bleeding is one of two things: either it came from my intestines and the GI doctor will find out what happened and have an answer for me OR if the GI doctor doesn't find anything it probably came from my heart and I will have a heart catherization to see if any abnormal blood vessels popped and started bleeding down my intestines...there is also a small possiblity that it was just a freak thing. So, I will make an appointment to see the GI doctor ASAP and go from there. I also asked all the other questions that I had for my cardiologist and he gave me the answers I needed. He said I should get the H1N1 shot, so I will be getting it. As for a cardiac MRI, he doesn't see the need for one yet, but maybe in a year or two.

Over all, things went great! I couldn't be more happy, blessed, and grateful for my heart health! I will continue to live to the fullest and keep on leaving my mark on the world!

Thank You ALL so much for the messages of support, much heard prayers, and just following my CHD journey! It ALL means alot to me!

May God Comfort, Guide, and Bless you on your journey!

With LOTS of Hope, Love, and Faith,