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