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Text of the page (random words):
st 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 lovingly written by lauren at 8 15 pm view comments 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 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...