Support, Transition and Resilience

I was asked by several parents yesterday at the Heart Talk Day at the Zoo to post my speech on my blog so that their family and kids can re-read it whenever they need to remember that they are not alone. I hadn't thought about doing it but I loved the idea, realizing that there are patients and families out there who need to read this and know that they are not alone. 

"In my 24 years of living with complex congenital heart disease, I have learned the value of support, how to be resilient and that transition isn’t as simple as learning what your defect is or what medications you’re on. I’ve been where you are and I want to offer up some lessons I’ve learned along the way, so you don’t have to learn them the hard way.

I’ve found that parents are going to be the biggest support system you will ever have and they won’t leave you. When you get too sick to go to school for long periods of time and your friends slowly stop visiting you – I’ve been there. But your parents don’t leave your side. They are more than just an advocate. They become your lifeline, a comforter and your best friend. I can say for a fact that I would not only not be alive without my parents, but I would still be struggling with my self-esteem, depression, the guilt I feel of being a burden to my family or all the fears I have about how I’ll be able to live on my own and pay my bills when my parents are no longer here. For all of you working through depression, fears, guilt, low self-esteem or any other type of internal struggle – I’ve been there and to be very honest with you, there are days where those fears, guilt and self-esteem issues come back in full force. You’re not going to feel great everyday and that’s more than okay, it’s actually normal.

The other type of support I’ve learned doesn’t go away is those wonderful people you meet at heart camp. For five days out of your life, you are no longer “the sick one” of your peer group. You don’t have to explain your scar or why you can’t keep up. Hold on to these life changing friendships because they are going to be the people who truly get it.

I’ve learned in the past few years that there are real emotional reactions to having to transfer from pediatrics to adults. Suddenly you are the one signing on that dotted line before each procedure, a daunting realization and reminder of how precious your life is. I’ve learned that although you may call in your own prescriptions and make your own appointments now, that doesn’t mean your parents are no longer involved with your care. Having an advocate in your parents shouldn’t stop just because you turn 18. These are people who know your medical history front and back and their expertise in your health should be seen as an asset to both you and your new adult physicians. When you start your transition process, know that you are not being “childish” or “immature” if you insist on having a parent there to hold your hand during blood draws, IVs and other daunting procedures. I’ve had eyes rolled at me, at adult facilities when I insist that my mom be present with me for specific tests. Nurses have tried to convince me that “That’s just not how it’s done here.” Is an acceptable excuse as to why I can’t have my much needed support system in the room with me. Don’t let them convince you. Its going to feel weird at first, standing up to an adult. I know it was for me. I was taught my whole life to respect adults and listen to directions. But this is your journey and you deserve to be treated with compassion and empathy – even if you are no longer a child anymore.

According to Webster’s dictionary, resilience is defined as: “tending to recover from or adjust easily to misfortune or change.” Throughout my life I have learned that resilience doesn’t just apply to the physical challenges that we as CHD patients over come. To me, resilience has meant making sure my quality of life is as good as possible. My family and I are not constantly waiting for the next medical crisis or living life in fear of my health. This doesn’t mean I don’t take my health seriously, because I do. I follow my low salt diet, my no caffeine diet and stay off of the beloved roller coasters I used to love to go on. But I have learned that if you spend your healthy days worrying about when your next sick day is coming up, you won’t be able to enjoy the life you have fought so hard to keep. I’ve tried my best, as has my family, to move on the moment I get out of the hospital. Resilience and quality of life go hand in hand to my family and I. A week ago this Monday I was checked into Stanford Children’s Hospital for arrhythmia and fluid retention. And while the concerns about my arrhythmias and talk of an ablation are still in my mind, I do my best to wake up every morning just glad to be back home and back to what I call a “normal” life.

Wherever you are in your medical journey, whatever you’re feeling or worried about – I’ve been there. And yes it is going to be a hard life with more ups and downs than anyone could ever imagine – I want you to take these lessons I’ve shared with you today in hopes of creating as happy of a life as you can. And I can guarantee you, from one heart patient to the other that things do get better. You start to figure things out and learn great coping mechanisms along the way to help you. One of those mechanisms is to remember, you are not alone."  

Out of the Hospital

Hey guys,

So if any of you follow me on Twitter, you may know that I was in the hospital. I was having irregular heart beats and my heart rate was getting up into the 130's. On top of that, these episodes were lasting up to two hours. Needless to say, when that would happen, I would be exhausted afterwards. So while in the hospital, they put me on some more medication to help stop these irregular beats from happening. While these episodes are not dangerous or life threatening, they were extremely uncomfortable and made me beyond exhausted. 

I am out of the hospital, and the episodes are not happening as often nor lasting as long. However, the medication I am on for them can (and has already) created problems for other parts of my body such as my Thyroid. So after I finish up school for this year, I will be going up to California to see the doctors up at Lucile Packard Children's Hospital to discuss two medication options. One of the medications though is a Beta Blocker so I may not be able to use that (for a reason my mom and I cannot recall, we just remember in the past they did not want me to be on one). And the other medication, we just have to make sure it does not interact with any of my other medications. And if none of the medications work, the other option is a procedure called ablation. However, that would be a last resort because of the risks that come with putting me under for a procedure. 

I am home now, but I have noticed that I am not feeling as well as I have been in the past. While I was in the hospital, I was on a strict low salt diet to help lower my water weight, which would then help my heart function. Well I got home and weighed the exact same... which is odd because I should've lost at least some weight. What's also a little worrisome is that daily activities that I have been doing for years without a problem suddenly make me out of breath. The other day I walked around my house to put away some laundry after folding them. I have done this ever since I can remember and never got out of breath before while doing this. I had to sit down and catch my breath. The other day I parked right in front of a building, walked inside and was out of breath. Not like I had to walk a long way or anything like that. So the topic of getting an ECHO to see if my heart function is the same or worse. I want to know... but on the other side... if it's bad news, I don't want to know. 

I'm hoping that maybe I'm still just recovering from being in the hospital and what has been going on. I am staying on my low salt diet, so it doesn't put anymore stress on my heart than it already has. I will keep you guys updated! 

Thanks so much for all your support, prayers and love! I appreciate it more than you could ever know!

Becca 

The Emotional Roller Coaster We Go Through – Knowing When it MIGHT Be The End

This is part 2 of "The Emotional Roller Coaster We Go Through" blog post series that a Twitter follower of mine asked me to cover. 

Surgeries, procedures and hospital stays seldom happen in an emergency. Most often, there are scenarios where family and patients know that in the future, there will be a surgery or some sort of hospital stay. And while in theory, having time to cope and deal with the inedible is a good thing, it doesn't always feel like it is for many. 

Knowing that in an X number of days you or someone you love will be put under for a risky procedure or surgery tends to be a double edge sword. Yes it gives people time to prepare and cope with the idea of what is going to happen, but it also gives them a time limit. I am well aware as I'm sure many patients who are old enough to be aware, and their families are that the day of surgery or a risky procedure could very well be their last. Some people say that they'd like to know how long they have left to live... I don't. I've had 4 open heart surgeries, 2 surgeries for my pacemaker/defibulator and over 20 heart caths. Due to complications in the past, even in "routine" procedures such as heart caths, I am aware well aware that I may not live through them. That I may not be able to come off the ventilator. Or that there could be complications. I have in some way been told how long I might have left to live and it does not empower me. It does not make me feel free or liberated. It terrifies me. And I'm sure it's the same for many patients and families of loved ones who are in the similar situation. 

I think the difference between my possible time limit and others who are given a time limit due to an illness that is too far long is that, my (and others like me) situation has hope. Those who are given an X number of months or years left to live are typically given those because there is no hope for a cure or treatment working. But me and many others with CHD, our time limit comes with hope. The reason we may die is for the same reason we may live. Open heart surgery. We know that without it, we would die eventually. But with it, we could either live for longer or die because of it as well. So while there is an excitement and hope that our lives will improve due to this surgery, there is that fear and knowing that we could very well possibly die from it as well. And even though you don't want to do it, you know deep down, you have to.

Would you want to know how much time you had left? 
How do you cope with the idea of another procedure or surgery? 

Hope and Love,
Becca

Next week I will cover the Preparing part of "The Emotional Roller Coaster We Go Through".

The Reason Why I Hate Being Sick - I Wish It Was Simple

When I was younger, around elementary school age, I hated having a heart condition and a lung disease. I hated it because I couldn't run or keep up with the other kids at recess. I hated it because during recess, I wasn't able to play kick ball or basketball. 

Then I got a bit older, into the pre-teen stage and I hated having a heart condition and a lung disease for a different reason. I hated how my scar looked. I hated the stares I would get. I felt ugly. I felt like I wasn't girly enough or feminine enough because of the scar in the middle of my chest. I felt like no guy would ever find me attractive because of the big pink scar. I hated having CHD and PH because of the scars. 

Then I got a little older, and I was able to realize that my scar didn't make me ugly nor was my scar ugly. But I started to hate having CHD and PH for a different reason. No more roller coasters and a low salt diet. I was so angry at my doctor. I blamed him for taking those things away from me. Still to this day, I go to a theme park or a carnival and there is a pang of sadness when I see other people screaming their heads off on a roller coaster and I keep thinking 'Someday... someday when I get my transplant, I'll be able to do that again.' 

But I have grown up since then and I no longer hate having CHD and PH for those reasons. Now my reasoning for hating having CHD and PH are more realistic, mature and very scary. Insurance. I hate having CHD and PH because of the battle with the insurance company to get my doctor visits approved. I hate having CHD and PH because of all the work my mom and dad have to do just to get the insurance company to approve one doctor visit. I hate having these illnesses because I worry what it might do to my dad's small business if he decides to put me on his own insurance plan. There are times when I miss the old reasons why I hated being sick. Looking back now, they were so much simpler and less daunting than insurance. 

There is a part of me that wishes I was not an adult and instead a kid once more, so I wouldn't have to worry or even be aware of the insurance problems. But I'm an adult now and I am aware of the insurance problems, and it terrifies me. 

Hope and Love,

Becca

What are the reasons you hate having a chronic or terminal illness?

What are the reasons why you hate that your child has a chronic or terminal illness? 

CHD Awareness Week Alert!

After asking my Twitter follows what topics they'd like to read about, I got some great ideas! Today I want to let you all know about Congenital Heart Defect (CHD) Awareness Week that is in February. You might be thinking, "Why so early?" Well like my mom always says, "If you plan ahead, you won't have to scramble in the end." So I am letting you all know now so you can get a head start on setting up fundraising events at your school, job and in the community. Starting February 7th and going all the way to Valentine's Day (How appropriate  a holiday that uses a heart as it's symbol!) is the week that CHD Awareness is scheduled for. 

If you or a loved one you know has CHD and want to help raise awareness during CHD Awareness week or any other time, here are some ideas! 

• Buy and wear a CHD T-Shirt, hat, jackets etc. You can buy a shirt from: Mended Little Hearts  - they have groups all over the US so you can find a group and a shirt that is from a state or city near you!
• Buy and wear a Lego Heart Necklace from Mended Little Hearts of Phoenix's website, here. (Pictured below) 

• If you are like me and are in the Phoenix area (Or Arizona in general) you can buy some clothing that raises awareness from: Mended Little Hearts of Phoenix 
• If you cannot buy any of these items, just wear a red t-shirt, jacket or anything else red! 

As for raising money for a CHD group that you'd like to donate to, here are some ideas: 

• Make necklaces or bracelets using red and blue beads that symbolize the hard time CHD hearts can have make un-oxygenation blood oxygenated - and then sell them at child's school, work and other places around the community
• Write a letter to a local business telling your CHD story and ask them donate money to the CHD cause 
• If you have a fundraising event, make a poster board that has pictures of CHD kids who look healthy, CHD kids who don't look healthy and then "normal" healthy kids - and ask the people who pass by if they can tell who has CHD. It's a great way to opening up the conversation that you can't always tell by looking at a person if they have CHD. 
• If you have fundraising event, you could also show X-Rays of what a normal heart looks like vs. a CHD heart - to help show the difference and catch people's eye! 
• Ask your child's school if they could sent out an e-mail to the parents in the school sharing your CHD story with a link to where they can donate money if they are interested in it 

These are just some ideas that you can do when trying to raise awareness and/or money. If any of you have any more ideas that you'd like to share with us, please comment below and share the ideas with everyone. Lets get out there during the week of February 7th to the 14th and raise awareness!

A special thanks to @CHD_UK for giving me the idea! If you are in the UK and have CHD or love someone who has CHD, check them out on Twitter and on their website: www.congenital-heart-defects.co.uk/ 

Hope and Love,

Becca 

Share Your Story!

Dear Readers, 

I am on the e-mail list for Photobucket which is an online free photo editing site where you can upload your pictures, edit them and share them with others. Its an amazing site and I have found some amazing photos that are beautiful on there. Although I myself am not a very good photographer and don't really have the patience to get any better - I thought some of you might like to share your story through photos on this site. 

Photobucket is holding a Stories Contest called 'Life is an Adventure' and the winner will get $25,000! There is no limit to how many stories you can enter - but each story should be different as should the pictures. I thought that through this contest we could help share our stories of survival, triumph and hope. Help spread awareness about CHD, PH or any other illness you feel strongly about.

If you want some more information, go here. Please note though - all photos must be your own!

If you aren't a good photgrapher (like myself!) feel free to comment below though and share your stories of adventure, survival and hope!

Hope and Love,
Becca

Spreading Awareness, All the Way to Germany!

Hey guys,

I am honored and so excited to tell you guys that a blog for people with Congenital Heart Defects has in Germany asked to use one of my past articles for their own blog. After corresponding for a few days back and forth, the article was published on its site just a few days ago. I posted a link to their website on my 'Favorite Links' section of my blog, so feel free to check it out! 

This is also exciting for me because I got to meet yet another person who has a congenital heart defect and the same lung disease I have, Pulmonary Hypertension. If that wasn't cool enough, she also has a pacemaker like me! I have met a lot of people who have pacemakers, sure. But none of them have had PH like I do! I thought I was the only PH patient who had one! 

It is amazing how the world can be so big but the internet can make it so small and you can meet and connect with people from all different countries that you otherwise wouldn't have even known existed! The written word can bring hope to the world and change. And know, its also brought me a new friend; all the way from Germany! Just another reason why I love to write and will continue to do so. 

Hope and Love,

Becca 

P.S. If you want to read my article on their website you can go here: Corience.

The Doors that being Chronically Ill Open

I wrote this for Adult Congenital Heart Association  and their blog and I wanted to share it with you guys! I want you to remember that bad things will happen to you throughout your life - but good times are just around the corner. 

Here is my entry: 

This past Tuesday I went to speak to a local sixth grade elementary class about bullying. I talked about how people would call me lazy for using the elevator instead of the stairs, how people would call me ugly because of my scar, and how kids in middle school locked me in a closet and refused to give me my medication. I wanted them to know that bullying is never OK and that before they made assumptions based off of how people look, they need to take a step back and realize that there is more to someone than what meets the eye.

Once I finished my speech, I opened it up to questions. I got a lot of questions about my health, which was fine by me. I want to help spread awareness about CHD. I get a lot of the same questions every year. “Do you swallow all of your pills at once?” or “Have you ever tried to walk up stairs?” and the crowd favorite, “So have you ever, like, died?!”

But one question took me by surprise, one that I hadn't heard before. It was a boy in the back who had made a comment earlier similar to: “Why would they even pick on you?” I could tell by the way this kid spoke that he probably had some learning difficulties. And every time he raised his hands, the kids would mumble under their breath or roll their eyes. But his question really got me.

"Do you ever wish you hadn't been born the way you are?"

I had to blink away tears at this question. Not because I was offended or anything like that. No, it was because I have a feeling that this boy at times wished he hadn't been born the way he was. He probably has spent nights crying over what kids say and do to him just because he has a learningdisability.

I wanted to give him hope. I wanted him to know that even if you are born with a defect or a learning disability, life can still be fun and full of joy. So I shook my head and I told him, no, I don't wish that, and I truly meant it, too.

While having CHD has brought on bullying and completely terrifying moments in my life, it has brought some great joys, too. If I hadn't been born with CHD, I wouldn't have been adopted by the amazing family I have today. I wouldn't have volunteered at the preschool in elementary school during lunch recess and started to learn American Sign Language from the teacher. I wouldn't have joined the sign language choir I am in now. I might not have gotten into writing, which has been so therapeutic for me. I wouldn't have gotten to go to camp with all my CHD friends and make friendships that will last a lifetime.

Yes, CHD is a difficult, scary, sometimes sad thing to live with it. But it has and can bring joy into someone's life. So next time you start to look at all the doors CHD has closed for you, look at the ones it has opened too.

Hope and Love, 

Becca