6 Years Later! Quick Update and New Ways to Follow My Journey!

Hello All!

It has been almost 6 years since I have written a post for this blog! Crazy! I realize that many people still find this old blog of mine and read it, so I thought many may wonder how I am doing today. So much has happened since my last blog post in 2012 that I can not cover all of it. Here is just a small snip-it. Healthwise, I am still doing well. Both my heart and liver are still stable. I have run into medication issues with keeping my SVTs (rhythm issue) under control, but currently the medication and dose I am on right now is doing a pretty decent job. I have IBS and that has caused some issues over the years, but it has gotten better. I had my first heart cath in adulthood in Spring of 2013. All went well and nothing needed to be done, so just pictures and heart pressures were taken. My husband, Chris, and I moved to Texas in the Summer of 2014. My older brother, Ryan, got finally got married to my niece's mom, Ashley, in early 2016 which was totally awesome. Sadly, my dad passed away very unexpectedly and suddenly in May 2016, so I have been on an emotional roller coaster since then. My little brother, Aaron, graduated high school last June. Aaron is in college now and currently lives with my husband and I. I turned the big 30 last August and my sweet husband, Chris, totally spoiled me... even took me for a night at a nice resort. I will be turning 31 years old next month! Woah! My husband, Chris, and I have been married over 6 years now and last summer we bought our first house! Being first time homeowners has been a lot of work, but so very worth it. We still do not having any children, but we hope to have a child in the near future...if a few tests and a medication change (to a pregnancy safe med) goes well in the spring next year then we will get a "green light" to get pregnant. Exciting and a bit terrifying at the same time! Well, that wraps up a small snit-it update. If you would like to find out  more about what I have been up to over the years and what my life is like now...here are a few ways you can keep up with me now: 

My new blog is: www.specialheartbigdreams.wordpress.com  

My Facebook journey group is: Lauren B- Adult CHDer/Fontaner with Tricuspid Atresia, HRHS  

My Instagram name is: laurenbednarz87

I will continue to keep up this old blog of mine so anyone can read it anytime, myself included as I love walking down memory lane sometimes. 

Hugs and Blessings to all!

Me on my 30th Birthday last August.

My husband, Chris, and I taking our 2017 Christmas pictures in Nov. 2017

Today I'm 25

Today I turn 25years old... on August 25th! Turning the age that corresponds to you birthday day is called your Golden Birthday... so even more special... only happens once in a lifetime.

I've been in the CHD (Congenital Heart Defect) community for about 6-7yrs, but this is the 5th birthday I'm blogging about. I went back and took a look at the last 4 birthdays I blogged on... my 21st, 22nd, 23rd, & 24th to see what I had to say and how far I've come in just that small few years. Here are some snippets from each one of those past birthday posts:

21st Birthday...August 25, 2008:

"...I'm going to saver today as you only turn 21 once. Though I still have mixed emotions; I know this is just another stepping stone in my journey."

22nd Birthday...August 25, 2009:

"Today I'm 22years old!! Do I feel older? No. I do feel very grateful and blessed to be here, to be able to celebrate yet another year of my life... I was put here on this earth for a reason... I think part of that was to spread hope and awareness for CHDs. I also learned a lo about myself and about how to look at life... I mean I've always looked at life as special and to never be taken for granted... I meant in a way I learned to enjoy myself more and stop worrying about my health so much. I basically learned to LIVE more and boy that was hard, still a work in progress as having an anxiety disorder is hard, but I can't have that be my excuse for missing out on so much! I thank my loving boyfriend, Chris, for that..."

23rd Birthday...August 25, 2010:

"Today I'm 23. Another year, Another milestone, Another miracle as I'm ALIVE! ...I don't feel another year older or wiser, but I have learned a lot. I always seem to be learning. I've been so proud of myself the past couple of years. There are so many things I've overcome and accepted. ... There is not one day that goes by that I'm not grateful or blessed for everything I've been given. ...I don't know what my future holds, but I know more procedures, pokes, prodes, surgery, and pain will be part of it, BUT I also know happiness, love, kindness, great times, wonderful people, family, and new exciting adventures will be a BIG part of it too..."

24th Birthday...August 25, 2011:

"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 though 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've 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 hold, but I will take it one day at a time (I say this a lot, but it's true)." 

**Today... August 25, 2012... I'm 25!!**

Taking a look back at some birthday past and the things I wrote, I can say that it all rings true still. My birthday will always be a special day for me no matter how old I get. I will always celebrate my birthday. I made it another year. Another milestone. Another year of beating the odds and living my life to the fullest I can despite only having "half a heart". I am and always WILL be grateful and blessed for what I have. I take things one day at a time. 

This past year has been a whirlwind for sure! I graduated college and got married in December 2011... one day from each other. Than a week after graduating college and getting married in a small quick courthouse wedding I moved cross country (from Michigan to Northern California) with my new husband for his new job. This was not the first time I moved cross country with Chris (my husband)... but this time it was not just temporary, it was permanent and that was a HUGE adjustment for me to leave family and friends for good. Then I had to adjust to being married and everything that comes with that along with getting adjusted to new surroundings again. I was under lots of stress and had many big life changes. On top of that my heart issues got a bit worse... weird beats, varying heart rate, and chest pain... I knew the stress didn't help.

Then Chris and I researched out a new cardiologist which led me out of state to Georgia. Come April I met him and got more information about what my future heart wise might hold as well as what it will hold. Surgery again is in my near future as mentioned in past posts. That was a lot to take in. Than I has medication and dose changes which messed with my body. I've battled my high anxiety, slight depression, and OCD. Not having a job and being at home all day 5 days a week doesn't always help. I'm sure some would say I should get a job, but that is out of the question with my health at the moment and we only have one car. But I can work from home and I've been looking for a work at home job. 

Let's say this year I dealt with a lot and many new changes and faced many new challenges. I haven't always been graceful or positive in getting through my bad days, but I try to pull myself up and keep moving forward as that is all you can do. 

"When everything seems ok, but everything doesn't feel ok; those are the times when you need to have the most faith, show the most love, and give your biggest smiles because it will give us the most strength to keep going." ~ Me (Lauren Celeskey Bednarz)

Despite everything there has been LOTS of good things this year to. I'm married to Chris, the love of my life, my best friend, my rock, and my soul-mate. Chris is always there for me and I could not have asked for a better husband. I know it's not always easy for him, but he is just amazing. I'm also a college graduate and that feels amazing. I'm SO incredibly proud of myself for that achievement and I will put it to good use as soon as I can. My little brother, Aaron, came to visit for 2 weeks this summer and that was awesome. I'm very close to my little brother and to spend time with him was just great. This year I also learned more about myself ... more so my strengths and my weaknesses. I've had a lot of time to think and ponder, which has helped me in getting my mind into what goals I want to accomplish. I've learned how to clean a bigger apartment and make lists of certain things to do each day. I've learned that I still very much love the simple things in life like spending time with Chris and just relaxing watching TV.

I'm proud of the person I am and I love the person I am. Ever year hold new life adventures, good and bad, that make you strong and make you wiser. This year has been a whirlwind like I mentioned, but this year has been the beginning of a new life journey with my husband and our life together. I can't wait for what our marriage will continue to hold in store for us. But I'm so grateful to have Chris in my life... we are in this for better or worse. We are our own small family of two and I love that. Plus, I gained more family by marrying him which means more love and support which has been great in the challenges and changes that we have already faced the past year.

Today I'm 25. Today is a special day to me. I still have many things I want to do and accomplish in my future especially writing and publishing my own book. I also will continue living my life to the fullest I can. Enjoying every moment I can. I will continue to smile and laugh whenever I can. I will continue to love my family and people I care about to no end as they are the most important things in my life... they are my support. I will continue to spread hope and CHD awareness.  

I'm excited about that the next year holds...also a bit nervous and scared, but that is OK. One day at time... I'll face the beauty in each new day no matter what that day holds. 

Sending heart hugs to all! 

Chris & I in April this year. 

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Long Time..No Post. Quick Update.

Hello Everyone! Long time, no post! 

I forget to update this... so sorry for no update in 

a few months.

First off, I have a Facebook community page which 

I update a lot more often. For anyone who wants to 

keep up with me, my Facebook community 

page is called:  

Lauren's Heart: Living a Full Life with "Half a Heart"

**Here are some update on every aspect of my life:**

-I'm not having open heart/the Fontan Revision next year. Chris and I researched the Fontan Revision also called the Fontan Conversion a lot, we also researched hospitals, statistics, etc.... We picked to have the surgery at Texas Children's in Houston as they have done the most Fontan Revisions/Conversions in the country (maybe the world?) and have great statistics. Thing is I need to be checked out by them personally and we just don't have the money this year to fly down there...Chris also does not have anymore vacation days left either. So, we are saving up and going next year...probably in the spring. If they think I need the surgery, than it will be in 2014. So everything is pending. This surgery is NOT an emergency for me... I'm still well and pretty good quality of life even though my heart function has gone downhill a bit in the past 5yrs. I have an older Fontan which are worse than the newer versions even though all Fontans aren't great as the Fontan is not a fix or cure... they aren't made to last a long long time. Doing a Fontan Revision to a newer better long lasting Fontan while one is still doing pretty good and only few issues means less risk to me.

-We are also trying to save up so we can fly to Michigan (and Ohio where Chris' mom lives) next summer to visit our family as if I have surgery the next year, it will be awhile before we see them again. And we miss out family. So it's important we go and visit them.

-The new beta blocker I was put on in April ended up not working out. It was interacting with my blood pressure medication making me feel sick (lightheaded, nauseous, dizzy, etc), so we tried lowering the dose of my blood pressure medication and I still got the effects. I ended up being taken off my blood pressure medication ...but had to monitor my blood pressure by a blood pressure machine. I was fine without it for awhile, but after a few weeks I started getting chest pain, my heart would beat hard, and I had some weird beats here & there.... it threw off my sleep schedule and made me miserable. So last week I started back on my old beta blocker and felt a bit better after a few days. I started my blood pressure medication up again this week, but they said I only needed half the dose I was on before medication changes as off the blood pressure med, my blood pressure did better than they thought it would. So overall I'm feeling better and slowly my sleep schedule is getting better... work in process. Hopefully no more medication and dose changes for awhile... it can sure mess with your body.

-Overall I have good and bad days heart wise and mentally. I'm working on the mental part and looking for a psychologist to see again as they always seem to help me out with my anxiety disorder...plus I have some OCD now. I'm also trying to get back into writing and still plan on writing my own book. I'm also trying to find a hobby I like... going to try making yarn friendship bracelets again as I use to make them as a kid. 

-My little brother, Aaron, who is almost 14 came and visited in early June (he lives in Texas with my mom). He was here for 2 week and we (Chris & I) really enjoyed having him. It was the first time I had seen him in over 6 months. I miss him already. He is a great kid. I love him a lot. We had a great time while he was here. Hope he lived California as it was his first time to California. :)

-Since Chris and I could not afford wedding rings when we got married last year. We are starting to look for  a wedding ring for me now. :) Money is tight, but it will be my birthday, Christmas, & 1yr anny gift kind of thing as wedding rings are not cheap. I'm excited about finally getting a wedding ring! There are so many to choose from... so it will be a tough pick, but I'm glad I get to choose the one I truly love. :)

-I turn 25 this month on August 25! Which is already next week! It will be my 3rd birthday away from family.. so I'll be missing family a little bit more like always. It will just be Chris and I, but it will still be a special day. I don't need anything material or a party for my birthday to be special. I decided that I'm going to start a small birthday tradition on doing a small Random Act of Kindness on my birthday starting this year. I till be small, but something I want to do. I'll post what I ended up doing and how my birthday went. 

****Well that's about it on updates for now. I do plan on a birthday post as well as a few blog posts of topics that might be interesting... when I have time I will... promise... it might take a few weeks to see another post though. Sending *heart hugs* to all!! 

Below is a picture of my little brother, Aaron, and I at Lake Tahoe this June during his visit:

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Heart Warriors.... And More

I recently read a book called Heart Warriors: A Family Faces Congenital Heart Disease by Heart Mom Amanda Rose Adams about her journey with her now 9yr old son, Liam's, battle with Congenital Heart Disease (he has HRHS like me.. but more complex than me).

I've known Heart Mom Amanda for about 4yrs, but only online through messages, forums, etc. Amanda started Hypoplastic Right Hearts which is an online support group for parents, family, and adult survivors of HRHS. I first "met" her through her support group/organization and for a year she let me have my own column in her newsletters called "Heart to Heart with Lauren" which I was SO honored to have had the chance to do that and even more honored to have "met" Amanda. I hope to one day meet her in person and give her a HUGE hug!

I got her book right before my big cardiology appointment and in an emotional state. I picked it up and started reading it right away. But after my cardiology appointment and getting overwhelming information and news, I put the book aside for awhile. Tried to pick it back up a few times, but had to put it back down. Finally, last week I was able to keep reading without putting it down and I finished it this past weekend.

Heart Warriors is such a beautifully written book that is packed with such an emotional roller coaster that Amanda went on with her amazing warrior son, Liam. It is touching, inspirational, heartwrentching, and so much more wrapped into one. I know I'm probably one of a handful of Adult CHDers to read it, but I'm glad I did as it gave me a small glimpse into what Heart Parents go through. I know all Heart Parents cope differently and handle their situation differently, but many have some of the same emotions. I know my parents, who are Heart Parents, did not go through all the same emotions and feelings as Amanda, but while reading some of the things she went through were similar to what my parents had told me they went through. Reading this made me feel so much more appreciation for my parents and the hell they went through with me. Not that I didn't already have appreciation, but since I got a more understanding of things it made me even more appreciative. Heart Parents are hereos just like CHDers (even though I don't consider myself as a hero at all).

It was a hard book to read as I never like reading about those in pain in anyway as it breaks my mended heart to pieces. No one likes to read sad stories, but we can learn from other's challenges in life to help us in our life even in a very tiny tiny way. This book should make those NOT touched by a CHD be even more grateful for their health, their children's health, and their family's health. Those going through any hard time with an illness, this book will let them know they are not alone. Amanda not only offers her story of getting through every parent's worse nightmare, but offers tips and advice about grieving and getting through tough situations like this that one maybe thrown into.... even if it's for an Adult CHDer who has lived with a chronic illness their whole life those grieving tips and advice can be helpful as many of us don't fully understand everything and really "get it" until we are teenagers or young adults. I know I went through my own grieving process when I was about 16 and learned EVERYTHING about my heart and fully got that this was very serious... that my heart was fragile. It's hard and you go through many ups and downs... including some of the steps of greif Amanda mentioned like Anger, Denial, Depression, etc... I know I was angry and did go through a bit of depression. It's how you move forward to help yourself in order to continue to live a life and not miss out on all the good, the happiness, the joy, etc as life is already short as it is, that you don't want to miss out on living despite extremely hard times. I know my life has not been all crappy or sad... despite everything I've had a pretty "semi-normal" life with so much love, laughter, and joy.

Reading the last part of the book as Liam was older and understood more, I could relate to what Liam felt on many levels. I too hated tests especially Holter monitors and EKGs because of the stickies hurt coming off. Actually, I still hate them and hate the marks they leave. But it's part of my "normal" like they are part of Liam's "normal". Amanda mentioned that all these tests, pokes, prodes, surgeries, etc. are part of Liam's life that he doesn't know different and he takes it in stride and has this zest for life despite everything, yet pains her so much as she knows most people never have to have that be part of their "normal". That is exactly how my parents have always felt. They hate this is so "normal" to me, yet are so proud of me for taking it all in stride and not letting it get in the way of my joy for life. Us CHDers are special creatures not just for what we have been through, but that we can still love life, be full of life, be full of joy and zest... that we still dream and we act like any other person despite our challenges. I truly believe we are like this because we know that we fought SO hard to be here and we don't know how long we will be here, so we embrace life and LIVE to the FULL no matter how long we are here.

Amanda talked about Adult CHDers and the few that have now passed, yet have touched her life forever as well as the one's still here continue to give her hope and inspiration for her son. I know I'm included in her hope for her son and it warms my mended heart that I give hope to CHD parents. I love giving hope and love giving support where I can. Amanda talking about CHD adults who have touched her heart gave me warm fuzzy feelings inside to know how us Adult CHDers mean to CHD parents... that we are an important part of the CHD community and that we need to keep being part of it. 

Amanda mentioned how us Adult CHDers should never be ashamed of our scars as they are badges of honor. I agree with that and have always thought of my scars of badges of honor. BUT some Adult CHDers do not like to show off their scars, but that does not mean they are ashamed of them... I know a few Adult CHDers who don't like to show off their scars, but they still love them and know what they stand for. Some Adult CHDers don't like their scars and that is OK. Just because they don't like them does not mean they are not grateful to be here and they know what they stand for... I know a few Adult CHDers who don't like them, yet are just as grateful to be here. The end thing is... all CHDers are different and cope with their CHD differently. Their scars are on their body and so they have a right to feel however they want to about them... all that matters is that they are grateful to be alive and grateful for the hell their parents/family went through to fight for them, that they realize they are beautiful with the scars, and that they are strong for what they went through. In high school I did not like showing my scars as I was a bit self conscious as I did not want people staring or asking... I especially did not want a guy to say I was not pretty because of them. After high school I decided that it did not matter what others thought of my scars... all that mattered was that I loved them and were proud to have them. Come to find out most guys do NOT care about the scars or that be the first thing they notice on a woman. 

What Amanda said at the end of the book happened to be something I'm so glad she mentioned and I totally agree with her wholeheartedly. Amanda talked about how Liam has dreams about his future, he has plans onto what he wants to do as an adult... one of them to be a dad. That Liam just keeps living and does not dwell on his special heart. Amanda said it's SO SO important to never crush his dreams and to keep letting him live HIS life to the fullest he can. She may not know how long Liam will be around for, but she owes it to him to let him life his life to the fullest while he is here. Amanda said that CHD parents should not put their fears on their CHDer and hold them back from living as "normal" or "semi-normal" they can. She said she knows Adult CHDers who call other Adult CHDers "cardiac cripples" because their parents held them back because of their fear of them dying or not growing up or not being able to do anything. I too know there are Adult CHDers like that. My parents did NOT know how long I would be around for... they were told before when I was little that there were no promises of me making it to a teenager or an adult. My parents knew that and they did have fear, but they let me live. They gave me as "normal" as a life as they possibly could... I went to school, I made friends, I had sleepovers, I went to parties, I was in activities, etc. I'm SO SO SO grateful my parents gave me that. Them doing that has helped me in being an independent adult. One thing my parents did do, was taught my how to be responsible for my health and ask questions which has also helped me GREATLY in taking my CHD into my own hands and making sure I do the best I can to be around for a long time. I can't control everything and I don't know what the future hold or how long I will be around, BUT I CAN control the care I receive, the questions I ask, the things I eat, the things I do, and the attitude I have.

Amanda's book Heart Warriors is SO worth the read. You may need tissues, but know that you will come out the other end with either learning something new, a new understanding, and/or knowing you are not alone... or at the very least if you are not effected by CHD, have been inspired to be a little more grateful and loving to your loved ones and your life.

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GIVEAWAY!!!

Want a chance to own your own copy of Heart Warriors by my friend Amanda Rose Adams?

Well I have TWO copies to give away!! That's right TWO!!

Here is how you can be entered to win one.... you can get up to 2 entries:

1 Entry-  Leave a comment on why you'd like the book 

2 Entry- Leave a comment saying you got a NON CHD friend or a family member to "like" Amanda's Facebook, Heart Warriors page... make sure you have your friend or family member write a comment saying "Heard about your book through my friend or family member so and so" and leave your name in your comment so I can verify this when I look. Here is Amanda's Facebook book page link: Heart Warriors Facebook Page

The Giveaway will END at 10pm Saturday June 9th, 2012.

I will announce the winners on Sunday June 11, 2012.

Good Luck!! And get out there and spread the word about Amanda's Book,

Heart Warriors. Be sure to check out Amanda's Website about her book: Amanda's Website!!!

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