Friday, August 24, 2012

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. 


Wednesday, August 15, 2012

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 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:


Wednesday, May 30, 2012

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.



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!!!


Saturday, May 26, 2012

Going Deep... Emotionally Deep

It's been awhile since I last updated. In my last update I wrote how my cardiology appointment and liver appointment went which brought me news of another open heart surgery next year called the Fontan Revision. I don't usually share everything that I truly feel and is happening with my life especially my life with a complex Congenital Heart Defect or "half a heart" (Tricuspid Atresia, HRHS... 22yrs Post Fontan). Yes I share my journey, yet I don't share all of it... make sense? There is only so much I can share or have opted to share. I usually focus on the positives as I know that gives more Hope to all you CHD parents out there. But it's not all roses and butterflies living with such a serious medical condition. So, today is going to be one of those times where I'm going to "let it all hang out" to give a glimpse into the emotional side that all Adult CHDers have, but all cope with differently/ handle it differently. 

Over the past year when I've been going downhill a bit more physically it's been hard... more emotionally. To know your body fails you to be able to do certain things you once did with more energy.. SUCKS. I've slowly been a bit more depressed, my anxiety disorder has worsened, and I now have some OCD issues. OCD in handwashing and touching things... totally has been out of control that I have to hide myself from seeing how my husband cooks dinner with meat, I won't touch meat now and have these feelings that I have it on my hands. This also goes with other things like I need to cover my hands to put the clean stuff from the washing into the dryer than  wash my hands after, to sometimes feeling the overwhelming need to turn on the washer to wash the clothes all over again. My hands are so dry and can bleed. These are just a few examples. I go through soap and toilet paper like crazy, which drives my husband insane. My anxiety of getting sick, ending up in the hospital, etc. has been driving me up the wall and causing me nightmares. I break down and cry a lot usually over nothing. With my energy lower and not being able to do much around the apartment, I feel pretty useless. I HATE how my mind is doing this to me and I HATE that my heart feels the need to take energy from my body. I HATE HATE HATE HATE IT!!! I'm looking to find a Psychologist to see so I can get my mind in a better state as I hate the OCD and anxiety issues SO bad. SO I'm determined to help myself in that way. And so I'm not as much of a pain in the ass to live with even if I sometimes think I have a right to breakdown every so often.

When I saw my new cardiologist, whom I love, he started to draw out my heart. I know my parents got that talk back all the way 24 years ago in a small room... now it was my turn. When he was drawing I knew where he was going to take the talk to. After all I had researched this guy out as I was looking for one of the best in treating Fontan patients especially older Fontan patients... he has almost 30yrs of Fontan experience and worked a bit with Dr. Fontan's colleague... so I knew I was going to hear some things I may not like. After drawing out my Fontan heart he started saying all the things that are not good about this route, than what is better about the newer Fontan routes, than how those are not great either but better. Than explained how all Fontans suck yet is the only thing that can keep us complex single ventricles alive for a long period of time holding off a transplant or well we all know the other option. Sitting there I felt like I got punched and was starting to hate my heart a LOT. That night I cried. But I have my amazing husband who was there to comfort me and throw out positives out there that made me feel better.

Since my appointment how am I doing? Honestly? It's a day to day thing. Sometimes I'm fine or OK... others I'm not and others is horrible. I get nightmares almost every night... some wake me up scared out of my mind and wanting to climb out of my body. Some wake me crying saying "I don't want to do this anymore". I've told my husband how unfair this is. I don't want this burden. I don't want another major open heart. My parents are the ones who basically remember everything from my first two open hearts other than maybe 2-3 memories from my second (my Fontan) that I remember. But I remember other surgeries and other hospital visits, and other pain that scared me as a child... but the bribes and comfort of my parents made things it ok and comforted me that everything will be ok; even though I know they hid their fears and feelings from me. Since I've been 16 and I've known everything... it has been my life and journey to take over... and it has not been easy to take it all on yourself. I remember at age 18 when the nurse called me back for my cardiology appointment my mom walking behind me got stopped by the nurse. "Mrs. Celeskey, Lauren is 18 this year, it's up to her if she would like you to come back." My mom just looked at me and I responded "I want to do this by myself and I'll make sure you get called back when the doctor comes in... ok?". She was ok with it, but I don't know how she really felt. But I KNEW I HAD to do this by myself... at least the tests part of it, not the doctor talk.

The day of my appointment last month my mom called a bunch of times like she always does the past 4yrs that my husband has come with me instead of her. Since this was a new doctor, I put her on speaker to hear everything and ask questions. She gave her feelings and questions... some motherly things she felt came out and said she wanted to give him her number. He took it down but than said "I know your Lauren's mom, but she is an adult now and everything needs to be run by Lauren first. All decisions are Lauren's alone now. I know that is so hard when parents have done everything for so long...". My mom was ok with it and she supports me with any decision I make even if I decide not to have this surgery and just up medication and hold out for a transplant 10 some years down the road. I can't imagine the emotions my parents especially my mom has gone through and coped. My parents share a lot but I KNOW not everything and probably never will. I'm OK with that. But to know that it's ALL MY decision now... that anything I decide I'm now the one signing MY life away... that is SO scary. I remember my third eye muscle surgery at age 21 and it was the FIRST time I had to inform consent for my own life. No surgery is simple for a CHDer like me.... I remember them going over all the risks "blindness, bleeding...." and in my case because of my heart "rare possibility of death". They had to have cardiac team in the room and I had to be put me to sleep by a CHD Cardiac Anesthesia. I teared up signing the form. I remember the Anesthesiologist come in and smile saying "You sure have been through a lot, looked at your medical record." Yea I felt freaked out. But I came too hours later with my eyes bleeding and swollen shut... I know others surgeries like open heart are TONS more painful, but even your eyes swollen shut isn't very fun, but I had been through MUCH worse. I just didn't like running into walls.

Where am I going with all this? I'm just rattling off some things I've had to go through and have been scary for me. This is a life long journey and in the beginning it is ALL on the parents... and boy I love my parents and they are my heroes for getting me through hell and back. The Adult CHDers like my who are very blessed and lucky to make it into adulthood now have the full responsibility, but with "hopefully" support from family and friends. My parents STILL worry and since they have known for sure that the reality they have ALWAYS known of my having another open heart is now here, they are scared for me. But once we are Adults, this is now our journey and it's not always easy. Next year I will have a heart catherization and an open heart... first ones as an adult meaning I will be the one signing the informed consent knowing full well what I just signed will be putting MY life, MY hope for the future into strangers hands... something my parents did so many times.... it will come full circle and I will feel the gut punch they did in a different way. This will be hard. This sucks. CHDs SUCK!! I'm honestly scared and honestly feel I may not be strong enough. 

BUT you know what? I have my amazing husband whom will be thrown into one hell of a journey that he has never been on before... but he is SO amazing and supportive... my rock and best friend... he has always been there for me already. My parents will be there by my side, my brothers, my mother in law, and my best friend. I WILL get through this. I'm trying to keep positive as I have my whole life whether it was my heart or any other challenge I faced. I know things could worse. I will keep living to the fullest. I WILL NOT let my heart take joy, laughter, or good from my life!! I just wanted to share a small bit of the crappy side of being a complex CHDer. 

I'm going to start to journal soon. I plan on publishing a book sometimes after my surgery. YES I AM planning a future!!! I won't let open heart stop me from that. I plan on also being a mom, getting a job, and spending many, many, many years married to the love of my life. <3

My Husband, Chris, and I the day after my Cardiology appointment

Monday, April 30, 2012

Cardiology & Liver Appt. Results...& Important Information

Hello Everyone.

As most of you know, my husband Chris and I traveled from Northern California to Atlanta, GA this past week to meet my new Cardiologist. We researched a LOT in trying to pick a new Cardiologist who is one of the best in single ventricle Fontan patients of all ages, but especially single ventricle Adults. All the reseach led us to Atlanta to a man who has almost 30 years of dealing with single ventricle Fontan patients of all ages... he is one of the best and is one of the few that know about the liver issues ALL Fontan-ers can get (He said it does not matter what Fontan you have). He said in about 5yrs that all Pedatric and Adult CHD Cardiologists SHOULD know about these Liver issues. My new Cardiologist is not just an Adult CHD Cardiologist, but he is also a Pediatric Cardiologist, and his interest of research is Fontan patients, so he has a LOT of knownledge.

After saying all that, I will now move on to how my appointment went. It was on Wednesday (April 25), I got there and filled out papers. I was then taken back for an echocardiogram and a EKG... than Chris and I waited in a room to wait for the doctor. He came in and was super nice... awesome bedside manners... even asked if we were going to see any sights and talked about this favorites in the city. :) He also knows my first cardiologist I had for 22yrs very well... not only have they trained together, but are still in contact by phone and e-mail as well as goes out to dinner during pediatric cardiologist conferences. :) I was SO happy to hear that! 

He started off by drawing a picture of MY heart based off my surgical records which I have never seen someone do for me before... it was pretty cool... def a picture I'm keeping. He said based on all the records he has and this echo.. my plans for the future depended first upon my liver. Since my liver damage is mild and with me having pretty good function, but not great he HIGHLY suggests the Fontan Revision. This is why: Because I have pretty good heart function and mild liver issues, yet I HAVE been going slowly downhill over the years especially the past 5 or so than I will benefit from the surgery AND the mortality rate for ME would be 1-2%. The Pros of this surgery: It would give me better quality of life for a longer period of time... about 10-15yrs AND it would take some pressure of my liver, slowing the damage a bit. He said ALL Fontans cause liver damage BUT the new verisions do not put as much pressure on the liver as the older verisions like me... so what takes my verision like 20-30yrs to cause a lot of liver damage take the newer verisions about 30-40yrs in most cases (those were JUST EXAMPLE numbers)... obviously ALL CHDers & Fontaners ARE DIFFERENT, BUT this is based on research and the average. Based on research and what they know SO FAR, the Liver can a big issue as the heart as the liver is killing more of us than our heart... so liver "can" be the first to go.

Now, he told me those who have severe livers do not have any other option other than Heart and Liver transplant. Right now I have a window of oppurtunity meaning: I'm doing well, I'm a low risk surgery and it has the most benefit for me. If I wait like 5yrs I may not be as in good of shape and the mortality rate goes up... and waiting longer than that my window will close and transplant is the only option. I could go down hill at the same rate meaning I could have 5 more years and still have this window, but he said CHDers can change at any time and NOTHING is gaurenteed for us... so take it while I have this change to keep living for a longer period. 

He told me with as good as shape I'm in which isn't even good good or great, having this surgery could also mean my liver stays more mild longer meaning IF IF I ever need a transplant it would only be a Heart and not Heart and Liver.

SO the plan for me: I'll be having the Fontan Revision next year... this will be my 3rd open heart surgery. I will have a heart catherization and Cardiac MRI a week before. The hospital stay is 7-10days and about an overall 2month recovery. Now, my beta blocker has been changed now which will help better control my heart rate issues than the one I was on for 7yrs. This next year and half will be tough on me emotionally and I don't want sympathy... I need love, support, and understanding... as well as prayers and positive vibes. I won't be on Facebook as often but I WILL STILL be here for ALL of you!! I WILL get through this and I PLAN on living till 80!! This is NOT a BAD thing as this will make me even healthier and by ME time for technology AND maybe NEVER needing a transplant!! This will also be hard on Chris. And money wise will be extremely hard as well. But we WILL make it!!

This has been a lot to take in, but I'm doing OK right now... I'll have good and bad days. But in the end I'm looking forward to being able to have more better years which considering I'm not doing horrible right now, I can't imagine the more energy I will have. Any tips or words of encouragment is well... tips about what to bring, what helped, etc. I know you guys will behind me all the way and I can't thank you ALL my amazing CHD community enough for ALL the love, support, hugs, prayers, well wishes, and sweet words.... it ALL means SO SO much to me!!

***IMPORTANT FONTAN LIVER INFORMATION: This is only about 5yrs old and research is ongoing... most Cardiologists do NOT know about this YET, but in about 5yrs they SHOULD!! PLEASE READ and Pass on!!

-The Liver damage ALL Fontan patients can develop is call Cirrosis of the Liver and this damage also puts us at a higher risk of a certain kind of Liver Cancer.
-The damage comes from the Fontan pressures and Vena Cava pressures which ALL Fontan verisions do, but the new ones not as bad.
-It is important that around age 12-13yrs old ALL Fontan patients should be seen by a Liver doctor with some Fontan knowledge.... starting at that age our Livers SHOULD be monitored EVERY year with a Liver MRI or Liver CT scan AND a full pannel blood work up... as we get into out mid 20s it SHOULD be EVERY 6months... I will now be getting a Liver MRI EVERY 6 months as well as blood work up to makes sure they keep a CLOSE eye on everything and could catch things early if possible.
-There is nothing PROVEN to help with the damage because it's mainly the Fontan pressures BUT anything that says "can" help the Liver is totally up to you as you never know.
-As we get older ALL Fontan patients Should watch their salt/sodium and protein intake as too much for each can put unneeded stress/pressure on the Liver.
-Drinking a lot of water and keeping as active as we can are also important.

**If you never heard any of this ASK your/your child's cardiologist AND do some research if you can... knowing information on our Liver and keeping a CLOSE eye on it could save our life one day** I'm JUST sharing what I've learned which I feel is EXTREMELY important information**

Tuesday, March 13, 2012

March Maddness! (Ok not really)

It has been about a month since I've posted.

I hope everyone enjoyed my CHD Awareness Week posts.

So onto an update:

I continue to have on and off heart issues... which is heart
beats and/or heart rate issues... these can bring chest
pain, lack of energy, being out of breath, etc. I have good
heart days and bad. Lately, I've had a few more good
heart days, but have been really tired... I've been sleeping
12 or more hours a day... so not like me. Having off the
chart sleep patterns as well (which is not extremely
unusual for me I guess... I've always had some sort of
sleep issue). Than, a few weeks ago I woke up in a lot of
pain in my right side where your liver is... my heart rate
was all over the place, I had a blueish-purple tint, and the
chills. I called my husband, Chris, and he keep checking up
on me... if it had not gotten better than to the ER we
would go... but it went away and has not come
back...weird... I'm not even sure if it was my liver, just a
small guess as I've been seeing a tiny bit of yellow in my
eye whites... but I've noticed that on and off for a few
years when I don't drink enough water... but it has been
there a bit more often. I've been drinking more water.

Yes, this stuff is concerning to me... and YES I'm going
to see a Cardiologist!... that is my next point actually. I
moved cross country (Michigan to Northern California)... I
was trying to set up an appointment with an
Adult CHD Cardiologist here about 2hrs from me. Well,
they Secretary was not very nice, they only had
ONE cardiologist who was booked (and I bet overworked),
they did not take my concerns to heart, etc. So in talking
heart to heart with Chris, we decided with research we
would find one of the best Cardiologists we could find that
had a lot of knowledge on Adult single ventricle Fontan
patients, like myself.. knowledge to include the
complications we can face like liver issues (which liver
issues are something recent they found in the pass few
years). SO after much research over a few weeks time
and talking to the first Cardiologist I had the first 22 years
of my life (love that man...saved my life... a picture of
him and I on the right sidebar... I'm still in contact with
him via e-mail).... we found an Pediatric Cardiologist who
also is an Adult CHD Cardiologist with 28 years of Fontan
patient experience young and old that we feel is the man
to take good care of me... downside: he is out of state,
in Georgia... SO to Georgia (Atlanta) we will be going in
April for an appointment. We are going more in debit by
doing this, but my AMAZING husband who is my best
friend, rock, support, and my everything said my health is
number ONE and would fly me anywhere and go into
debit for me to get the best care. I am SO lucky to have
Chris in my life. God sure has blessed me despite many
challenges. April 25th is my appointment... I will also be
seeing their liver specialist that has Fontan patient
knowledge on that day as well. It will be a long day, but
worth it to get answers and a plan. We have our flights
scheduled... we are leaving the night of April 23rd and
staying till the morning of April 28th. I'm hoping for
answers and to feel better. I have high hopes and faith.

**We will fly in to see this Cardiologist once a year or when I need any surgeries... anything else I may need will be taken care of here where I live by a local Cardiologist with CHD knowledge (basically this local one will just be following my out of state Cardiologist orders).**

Despite everything I still continue to live my life to the fullest I can. I may not get much house
cleaning done, but I relax, watch TV... on the weekends when Chris is home, he will take me out
for walks, rent free Redbox movies, buy some ice cream or M&M's, play video games, etc. I still
push myself to do the grocery shopping as I enjoy getting out of the house by myself once a week even though it means to wake up really early with Chris to take him to work (we only have one car). I "try" doing even two things a day is an accomplishment to me (like doing some laundry, cleaning the kitchen counters, and cooking a small easy dinner)... though some days I do nothing, but sleep and eat, but that is OK. Chris is proud that I'm hanging in there and doing the best I can with everything. I am SO SO grateful for Chris... he is my rock, best friend, love of my life, and has been so supportive even though I know it's not always easy on him. But we are a strong couple and I have faith that we can get through anything together! We have already been through a lot and are stronger for it.

I have high hopes and goals for my future still... I'm slowly doing great things. These "minor" issues and setbacks will not hold me back... and things can ALWAYS be worse, so I try not to complain... I still have pretty good health, a wonderful hardworking husband, a roof over my head, a few good friends (though they live out of state), some supportive family members (though they all live out of state), and an awesome CHD community who supports me.

**Chris and I have been married over 3 months now! Time flies!**

Some more news: I'm now a Heartwaves,org blogger!
I'm very honored to have been asked to be one! is a website dedicated to helping,
supporting, and informing Congenital Heart Defect
(CHD) families. Check out the site.

I'm also looking into something I can do during the week...
like joining a book club or something so I can meet others
my age with a common interest so maybe I can make a
friend or two... which would be nice. We'll see what I can
find and I will share what I end up doing.

I will update again when I have other news to share. :)
Sending *heart hugs* to all!!

Tuesday, February 14, 2012

National Congenital Heart Defect Awareness Day.. Heart Day!!

Today is Valentine's Day for most...
But the Chris and I don't celebrate it.
Actually before I even met him I thought it
was just a Hallmark Holiday... and still do.
Chris feels the same.

You should tell the people you love, you love
them everyday... and maybe do something nice
for them every so often. Don't just wait for Valentine's
Day to do it!

Today holds a different meaning for some...
including myself. Today is
National Congenital Heart Defect
Awareness Day or Heart Day.

Today celebrates ALL CHDers... young AND old... as OVER 50% of CHDers are Adults. Today we spread CHD Awareness, remember the CHDers young & old who have gone before us, the surgeons who made all the life saving CHD surgeries (the 1st one all the way back in the 1940's!)... & ALL CHD surgeons as well as Cardiologists..... to thank the older CHDers for being guinea pigs (I'm part of an Adult CHDer group, so I will do just that... but in a way I was a guinea pig for Single Ventricle Fontan-ers... the Fontan had only been around 17yrs when I had it.)...AND today is a day to also celebrate CHD Parents because without them, their would be a whole lot less of us CHDers. ♥

Being an Adult CHDer... I thought I'd share how much
CHDers especially the complex CHDers like myself go
through by the time they hit my age... and so you
know, my list is in the middle as I know MANY CHDers
with longer lists, but others with shorter ones...
the point is... ALL of our lists is more than most Adults
will ever go through in a lifetime.

My List... So Far (I have Tricuspid Atresia, Hypoplastic
Right Heart Syndrome...22yrs Post Fontan):

-2 open heart surgeries
-2 heart caths
-RSV days after being discharged from my 1st OHS,
so I was re-admitted for about few weeks
-1 blood clot in right leg after 2nd heart cath
-2-3 code blues (1 for pulling out my vent tube...
so naughty, 1 for a dangerous tachycardia ep..)
-3 eye muscle surgeries (I have eye muscle disease w/weak eye muscles)
-Walking Pneumonia once (that was fun... NOT)
-6 stitches in my bottom right lip (my fault...
I was 7 or 8)
-BAD case of Chicken Pox
-BAD food poisoning w/a few hour ER stay & IV fluids
-Over 3 months of my life spent in patient in the hospital
-About 100 Cardio appointments (maybe more)
-Hundreds of pokes, prodes, tests, an
-Hundreds of doctor appointments for my heart, eyes, back (I have congenital scoliosis), & primary (sick appts)... oh let's not forget the dentist
AND 1 1/2 of braces
-I've taken countless amounts of antibiotics
-Been on at least 20 different medications in my
life so far.
.maybe more, idk (NOT all at once though... usually 5 or 6 at the most at a period of time... right now I'm on 3)
-I've had countless night terrors since I was little (between ages 2-10 they were BAD)
-I've been battling an Anxiety disorder for years... but I will NOT let it rule me!
-And currently having some heart beat and heart rate issues that I'm trying to get to the bottom of (have a history of Tachycardia/very fast hear rate as well.. on meds of it)

AND out of everything I've been through... I have about 22 scars or badges of honor on my body... 12 on my chest from just my 2 open heart surgeries.

I am a PROUD CHD Survivor! ♥

I may physically have "half a heart" but I do NOT have half a life!! ♥

The one thing I LOVE about being an Adult CHDer, is
spreading Hope and supporting CHD families anyway
I can.

***I'd like to share pictures and some information
about some of the AMAZING CHD kiddos
(and their AMAZING families!)...
(this is just SOME... I've made MANY
MANY friendships with CHD families I will ALWAYS

I gave inspiration, love, support, and friendship which
made my mended heart so full of joy... BUT what I got in
return was even MORE special to me... I received
inspiration, strength, friendship, hugs,
and support.

These CHDers and their families will FOREVER
hold a special place in my heart... and I've made some
FOREVER friendships!! I gave Hope to these families for
their CHDers, that CHDers CAN grow up... (even those
with "half a heart"), and live a VERY fulfilling life!!

<3 ~ <3

This is Londan. He has Hypoplastic Left Heart Syndrome (the opp of me). He was 10 when I met him and his family for lunch. We got along very well. He is full of life and an overall spunky kid. He thought it was pretty cool I had scars on my chest too. The thing that touched me was when his mom told me that he said in the car on the way home that since I’m missing the right side of my heart and he is missing his left, that together our heart makes a whole heart. Beautiful. Today Londan is 12 years old, thriving, still full of life, and still full of smiles.

<3 ~ <3

This is Megan. She has Tricuspid Atresia, Hypoplastic Right Heart Syndrome like me. She was 6 when I met her and her family. She was very shy at first, but that is ok… actually it took me back to my childhood as I was super shy too. She opened up towards the end of dinner and hopped on my lap. She can’t wait to meet me again and I can’t wait to meet her again. Megan is just full of life! Today she is in 1st grade, doing awesome, living life, and will be 7 soon.

<3 ~ <3

This is Kyleigh. She has Tricuspid Atresia, HRHS like me. She was 8 when I met her and her family. I had known her mom for a year before we got to meet in person. Her mom, Crisse, and I talked ALL the time on the phone and I talked to Kyleigh a lot on the phone to… so when we FINALLY got to meet in person… it was AMAZING! I love Kyleigh like a little sister and her mom, Crisse, has become one of my best personal friends. I wish we lived closer to each other though… but we talk all the time via phone. Kyleigh is so full of life and just a spit fire! Love her! She is 9 years old now and considers me her big heart sister forever… and that makes my heart melt. Kyleigh is full of life and full of smiles!

<3 ~ <3

This is Hope. She has Hypoplastic Left Heart Syndrome (opp of me). I knew her mom via internet since before Hope was even born! Hope’s mom found my blog, left a comment, and from there we have had a nice friendship and I feel so special I could offer her hope for Hope. Hope was almost 2 when I met her. She was a tiny thing, which I was tiny too. But boy lots of energy, curiosity, and love for life is packed into such a small package. She is on the go! My favorite moment was when I showed her my scar, than pointed to hers… she knew as she pointed at mine than at hers. She is 2 now and doing amazing despite some weight gain issues.

<3 ~ <3

This is Joshua. He has complex CHDs. He was 2 when I met him. He played the whole shy yet I’m going to still look and smile at you cute game… adorable. He was more than happy to sit on my lap, smile at me, hug me… watch out Sarah he is a ladies’ man hehe. ;) Joshua is full of life and is wise beyond his years as you can tell through his eyes.

<3 ~ <3

This is Bayden. He has “pink” Tetrology of Fallot & 3 other CHDs. He was 2 when I met him. He is a spunky little thing! He is curious, adventurous, yet gives you a smile that melts your heart. Brittany you have a ladies’ man too hehe. ;) Bayden likes what he likes and has a kind spirit. He enjoyed sitting on my lap and taking pictures with me. He is full of life and full of energy! Amazing!

<3 ~ <3

This is Jilliana. She has HRHS like me. She was 2 when I met her. She is adventurous, curious, and full of energy. She smiles a lot and knows what she wants. She was so sweet and enjoyed sitting on my lap… she seemed to like me. Jilly has a love for life and exploring. A cute moment during lunch is her eyes lightening up at the big cookie we gave her, yet she enjoyed eating my chips more… she sure loves to make friends… what a cutie. Amazing little girl she is.

<3 ~ <3

~~ ~~