One of the biggest ways I have continued to face the many obstacles that CHD throws my way is being future focused. ❤️
What I mean by this is knowing that I have to do this surgery, procedure, etc, but that I have X to look forward to.
For me this was often school focused. I LOVED school. It was literally my favorite thing in the world. When I was 18, I had to go down 2 days after my high school graduation (pushed so hard to be able to go to that and finish school — that’s a story for another day) to Boston for OHS #7… my biggest concern the whole time was making it to college in the fall. When everything went haywire and I had to go in on an emergency basis for OHS #8 6 weeks later, that concern got even bigger that I wasn’t going to make it to college on time. I told that to my cardiologist and I remember him saying, “we will get you there, and you need send me a picture of your first day.” Well, after QUITE the summer, we made it, and 5 weeks after back to back open heart surgeries, I drove my little self smiling ear to ear to my first day of college and sent him a pic (it’s me giving the thumbs up in the dress).
Now that I am done school, it’s often focused around getting back to my fur babies and planning fun trips to look forward to.
CHD does NOT control my life. Yes, there are absolutely things that I have to do to manage it, and there are times when it throws BIG detours in my plans, but it’s not going to stop me from accomplishing my goals! 💪🏻
Share this message with a friend 🫶🏻🫀
When it comes to having CHD or chronic illness in general, we have to get a lot of bloodwork which means our veins… not so good lol.
For me, for blood draws I have one good vein left that I save in my arm for that and then usually have nurses/anesthesiologists set IVs in my hands.
If you are one of the people who can get my blood on the first try or if you get my IV on the first try… you are in for life. At home, there is a lab that I go to and there is this phlebotomist I had when I needed cultures done before my valve replacement and she had to do 3 separate sticks and got them all on the first try. I now schedule my labs around her schedule and wait extra time just to have her. 😂
At the hospital, whenever I have procedure I have a specific anesthesiologist I request each time and let me tell you.. in 10 years of having him… that man does not miss and it’s such a stress relief having him come in and pretty much guaranteeing he will hit the first try.
For me, labs/IVs have always been one of the biggest anxieties. When I was younger it’d take 3 people to hold me down lol. So having those people who are excellent at getting our not so good veins, are truly amazing and so appreciated.
Let me know if you have people you request!
Living with scars is a common part of CHD, and it can impact people in a variety of ways. Because of that, different perspectives will exist and that’s okay!! One important thing to remember is that you are not alone. One question I often get is if I was self conscious of my scar growing up, how I became comfortable showing my scar in everyday life, and how you can help your kiddos be comfortable with their scars.I think one of the biggest things that helped me growing up not feel self conscious is that it was normalized. It wasn’t the focus, we didn’t name it anything, or draw any special attention to it. We also didn’t disregard it. Like I said, we normalized it. I knew I had the scar because I had heart surgery, but I also knew my mom had a scar on her arm because she had surgery when she was little, and my sister had a scar on her knee from falling on the hurdles in track. Everyone has a scar and every scar has a story attached to it. I grew up in a pretty small town and so everyone knew why I had the big scar down my chest and if someone new came to school or I entered I new situation and someone asked, I’d simply say “oh, I had heart surgery” and that was that. Sometimes people would ask more, but usually it was left at that. Every scar has a story, even the smallest of ones from when you fell and scraped yourself when you were little, to the big surgical scars and while I think for some it can be important to share that story, IF there is a time in life that becomes right for each individual. It might not be on a public forum, and just simply in your day to day life… and that is okay! Whatever you feel is best for you is the route to take. Know that if you’re reading this, and you are self conscious about your scar always know that you are beautiful inside AND out and what you share (or not share) about your story, is always yours to choose.❤️If you have experienced living with the scars of CHD and would like to share a word of encourage
The yummiest blueberry muffins
1.5 cups Gluten Free flour... i like @kingarthurbaking
3/4 cup sugar
2 teaspoons baking powder
1/3 cup vegetable oil
1 egg
1/2 cup milk
1.5 teaspoons vanilla
1 carton of fresh blueberries
Bake at 400 for 18 mins
#blueberrymuffin #blueberrrymuffinrecipe #glutenfreebaking #glutenfreemuffin
To those living with CHD… 🫀
You may not always feel it, but you are strong, you are resilient, and you are incredible in each and every way. I cannot wait to see all of the amazing things that you do as you continue to grow. I want you to dream big and follow your heart.
We may not always be able to do things the same way as others, but we have a great way of finding how to do things differently. Growing up, there were alot of things that I wasn’t able to do. I want you to stay focused on the things that you CAN do. You are all gifted with a beautiful purpose for your lives and there may be barriers that make it complicated, but one thing I know for sure, is heart warriors know how to overcome barriers.
With hard work and determination, I was able to graduate college, become Miss Maine, and work alongside so many nonprofits as an advocate for CHD. I have many more dreams I plan to accomplish, and I can’t wait to watch you accomplish all of your dreams as well. Remember to take it one step at a time, and know that you have a huge support system behind you, and I will be cheering you on every step of the way!!
Share this message with other heart families ❤️
Raise your hand in the comments🙋🏻♀️🙋🏻♀️🙋🏻♀️ if you’ve ever been stared at / spoken to for parking in the handicapped parking zone because someone thought that you shouldn’t be parking there. I know that I definitely have!!
Growing up, we always had a handicapped placard and then when I got my license, I got the disability plate. There have been so many times people have stared or even said something like “you shouldn’t be parking there” or in more aggressive circumstances have given me the bird, swore at me, and pounded on my window angry at me because they thought I was stealing a spot.
When people have said something and I am alone, I keep walking and ignore them because I don’t want any sort of conflict. In all honestly as well, if I have noticed that people are staring / look like they are going to say something, there have been times I have faked a limp walking inside of the store in hopes that someone doesn’t say something. (However, it’s probably very clear it’s fake because as soon as I get in the store I walk normal lol). When I have been with friends, they have simply said “she’s had eight heart surgeries” and we keep walking. Usually that pipes people down and some have apologized.
Invisible disability is just as real as visible disability and for me, parking in handicapped parking (or as I like to call it VIP Parking), I am able to not waste the energy walking across the parking lot, and save that for going into whatever place I am heading. Every ounce of energy counts when you have CHD. Leading with kindness and understanding in every situation is crucial because you truly never know what someone is dealing with.
One of the things that my mom did when I was younger was create little cards with a few CHD facts that she would cut out and give to people if they said something to her. I have a version of those listed on the resources page of my website if you’d like to download and pri
Handicapped parking
Raise your hand in the comments🙋🏻♀️🙋🏻♀️🙋🏻♀️ if you’ve ever been stared at / spoken to for parking in the handicapped parking zone because someone thought that you shouldn’t be parking there. I know that I definitely have!!
Growing up, we always had a handicapped placard and then when I got my license, I got the disability plate. There have been so many times people have stared or even said something like “you shouldn’t be parking there” or in more aggressive circumstances have given me the bird, swore at me, and pounded on my window angry at me because they thought I was stealing a spot.
When people have said something and I am alone, I keep walking and ignore them because I don’t want any sort of conflict. In all honestly as well, if I have noticed that people are staring / look like they are going to say something, there have been times I have faked a limp walking inside of the store in hopes that someone doesn’t say something. (However, it’s probably very clear it’s fake because as soon as I get in the store I walk normal lol). When I have been with friends, they have simply said “she’s had eight heart surgeries” and we keep walking. Usually that pipes people down and some have apologized.
Invisible disability is just as real as visible disability and for me, parking in handicapped parking (or as I like to call it VIP Parking), I am able to not waste the energy walking across the parking lot, and save that for going into whatever place I am heading. Every ounce of energy counts when you have CHD. Leading with kindness and understanding in every situation is crucial because you truly never know what someone is dealing with.
One of the things that my mom did when I was younger was create little cards with a few CHD facts that she would cut out and give to people if they said something to her. I have a version of those listed on the resources page of my website if you’d like to download and pri
You heard that right… chronic illness does not make YOU a burden… chronic illness is a burden on YOU.
This is a message I have to remind myself often as well so you are not alone! I think one thing that is super important to remember is that your support system loves you and wants the best for you. There are so many things that they are willing to help us with and at this point honestly probably don’t even think twice about it. All that they want is to see you thrive in whatever you want to do and see you feeling good.
Always remember… not being able to do everything does not make you a burden. Needing to change plans does not make you a burden. Feeling tired does not make you a burden. You are not a burden.
‼️SAVE this post for when you need the reminder ❤️
🤪🤪🤪
Growing up with CHD, I’ve had 8 heart surgeries before turning 18. I had:
1. Damus K. Stanzel
2. Norwood
3. Glenn
4. Valvuloplasty
5. Bi-Ventricular Repair
6. Myomectomy
7. Tricuspid Valve Repair
8. Mitral Valve Repair
🫀Let me know how many / what surgeries you/your Warrior have had. 🫀
CHD diagnosis
Lol who can relate 😂🤪
One thing that I think is really crucial is the importance of early detection of CHD. For me, 28 years ago, we didn’t have the technology that we have today. When I was born, my parents were told that I was perfectly healthy. It wasn’t until persistent trips to the doctors revealed the news at 4 months old that I had HLHS.
Nowadays, there are 3D ultrasounds and many cases of CHD can be identified around 10-15weeks. There is also the option to request pulse oximetry test be given during the newborn screening once the baby is born.
However, despite how far we’ve come, 44% of CHD cases are still missed.
Let me know in the comments how you/your warrior was diagnosed and at what age.
#hlhs #chddiagnosis #heartwarrior #chd #chdawareness
My motto to living w CHD
One of my biggest mottos when it comes to CHD is “do it… but do it differently”.
If you have CHD or you live with someone who has CHD… you know how to get creative, am I right? Living with CHD, it’s difficult to do almost anything the “normal” way. We learn to almost innately make accommodations for ourselves to make things easier.
A couple of examples:
-At stores, I always park in “VIP Parking” (aka handicapped parking lol) to conserve my energy.
-In school, I always had accommodations growing up. In early elementary school, I would use a wheelchair to get to the playground so that I wouldn’t expend energy before getting to play at recess. When textbooks came around, I had a copy at home and at school so I didn’t have to drag the heavy books back and forth. In college, there was only one semester where I received official accommodations, but I always made my professors aware and worked my schedule out where I would have days off.
-More day to day… I always have much more energy in the morning, so I try plan most of my errands, appointments, and “out and about” tasks for then so I can come back home and settle in when my energy starts to run out.
There are so many more that I can’t even write out because like I said above, it’s become almost instinct at this point to do things that make my life just a little bit easier.
Now, all that’s to say, are there some things that I simply can’t do. Yes. But, with many things, I try to find someway to do it, to get involved, and to chase all of those goals!
‼️Let me know some ways you get “creative” and do things “differently” in the comments. ‼️
#heartwarrior #chronicillnessawareness #hlhswarrior #chd #chdawareness #chronicillness
CHD and Anxiety
CHD and Anxiety🤍
In my opinion when it comes to chronic illness/CHD some anxiety is inevitable.
For me, there is always that looming cloud of when will the ball drop next? Will this visit go okay? Uh no, there’s a new symptom.
With some things, I do as the audio says and panic lol and others, I’ve found ways to help deal with my anxiety. For example, I get a lot of anxiety around needles. When it comes to lab draws, I always request a butterfly needle, and when it comes to IVs for procedures, I request my anesthesiologist to set it.
When I was younger, one thing that my mom set up for my Pre-Op visits was a fun game that helped give me back some control as the small child who was going through very difficult procedures, but one that also made some tough days pretty fun! PS.. It made it fun for the nurses, doctors, and medical staff too! If you’d like to learn more about this game check out the book my family and I co-authored, Nellie and Ellie’s - A Heart Like Mine. (Link in bio to purchase).
Unfortunately with CHD there is always going to be a “next time, next visit, etc” but know that are you are not alone and there are always people to support you. 💙
‼️Share this with a friend who would find this helpful as well as share something that has helped your warrior ‼️
Prepping for a visit
When you have CHD there is ALWAYS “another visit”. At minimum it’s at least 1x a year, but when you’re facing a procedure, it’s alottt more leading up as well as the obvious time for the stay.
There is so many things and faces that you meet and it can feel so overwhelming. I wanted to share some of the ways that my parents helped me growing up with visits that I still do to this day.
✨For standard check-ups, I always knew what to expect, but my mom always brought something to distract me whether it was a coloring book, my DS, or my portable DVD player (aging myself there 😂). We’d also end the day with something small to look forward to, for me that was Subway (I was literally obsessed with their hot peppers 😂)
✨However, when it came to something new (procedure/test) that was going to happen, we did the alot of the same things, but my mom also explained to me in an age appropriate way what to expect. What was going to happen, how long roughly it will take/will I be in the hospital for, will I have to get needles, etc. For me, I was (and still am) the person that wants to EVERYTHING that’s going on — most definitely am NOT a go with the flow gal. So for me, knowing makes me less anxious than being in the dark.
✨To this day, if I get a new test/procedure, I still ask my mom what to expect, still bring my distractions to my appointments, and still go to subway after appointments lol. It truly is the small things that make the world of difference.
❤️How do you prep for appointments/admissions?❤️
Choosing a Cardiologist
Choosing a cardiologist or any member of your care team for that matter is INCREDIBLY important when you have CHD. You have to find a doc that YOU trust and that is able to provide you with both the care, but also the peace of mind that you need.
I am SO thankful to have the AMAZING care team I do, and each individual holds a few of the same qualities:
🩺 It’s important to simply find a doctor that you trust, and when I tell you if one of my docs walks into the room, I fully trust them and feel safe/calm.
🩺It’s important for me that a doctor takes the time to help me understand my condition or the procedure that’s happening and answer questions I might have.
🩺It’s also important for me to find a doc who truly LISTENS to my symptoms, concerns, etc.
❤️🩹There are many more, but these are just a couple! What do you look for in a cardiologist/care team member❤️🩹
Heart Healthy
While I know people have the best of intentions by saying things like “drink a gallon of water a day” or “oh, taking a run is healthy for your heart” that isn’t always the answer to being “healthy” or “good for your heart” when you have CHD.
It’s also important to note that EACH CHD patient is different. One might be able to do sports and run a mile, while others can’t. One might be more sensitive to sodium than another. One might be able to handle more fluid intake than another.
What’s super important is that each individual checks in with their cardiologist about what’s going to be best for YOU to be your healthiest self. Because I’ll tell ya, if I drank a gallon of water one day I’d be retaining fluid for the next week. If I even attempted to go for a run, I wouldn’t make it more than a telephone pole length (if that) without getting symptoms. Each person’s definition of being “healthy” is different because each person is different, and we have to do what is best for US!
If you take one thing from this post, make it be to not feel pressured to conform to society’s definition of “healthy”, do what you need to do to make YOU the healthiest version of you!! 🤍
📍SAVE this post as a reminder when you need it
Medical Info
If you are someone with CHD or really any type of chronic illness, it is SUPER important to have places where you have medical identification and information QUICKLY available to professionals in case of an emergency.
What I mean by this is bracelets, ID tags to attach to things (I have a free downloadable of this available with the link in my bio). I’ve also even seen recently little velcro seatbelt covers that say an individual’s name and diagnosis, and on the iPhone, there is an “Emergency Access to Medical ID” under the health tab where you can plug in important info.
When I got my license and started going off more by myself, one thing that my Mom got me was a MedicAlert Bracelet. On their website, you are able to put in basically anything you could think of that someone would need to know and on the bracelet it says the person’s name, diagnosis, and the number to call to get all the info. It is a yearly fee and I more than recommended checking them out!
We always pray that we never come across an emergency where this info would need to be accessed, but it is super important to take the steps in the chance that it ever was needed.
Let me know in the comments what you do‼️
Medical Advancements
If I had a dollar for every time that I’ve heard this or something like this from someone…
The unfortunate, but real reality of having CHD, is that there is no fix, no cure, no magic answer. Raise your hand 🙋🏼♀️ in the comments if you’ve heard that statement before.
CHD patients, like myself, receive palliative care for the remainder of our lives. During the “stable” times, I’m able to do many things, but even within those stable days, not everyday am I at my 100%. But, there are also times when I’m EXTREMELY sick and really can’t even function to do the simplest of tasks.
CHD patients, especially the adult ones, are trailblazers for the medical technology that we see today. We were the some of the first to have some of the procedures done that are now commonplace. For myself, I was the very first Bi-Ventricle repair EVER. Now was that a fix and it solved all my problems? Unfortunately, no. But it is what has made it so I could thrive into adulthood and it gives me hope for what’s next!
Medical technology is pretty incredible these days and while there isn’t a fix or a cure right this very moment, I have faith that one day there will be!!
WATCH THIS
“You won’t be able to do anything because you have CHD”
In the heart community, I know that this is a big worry of many new parents, but I’m here to say, living with CHD doesn’t stop me from doing the things I love to do. While yes, there are things I can’t do like hike a mountain, play sports, ride rollercoasters, etc., you can still live an extremely fulfilled life when you have CHD.
One of my biggest pieces of advice for parents is to try not to focus on what your child CAN’T do, but instead focus on what they CAN do.
Growing up and to this day, my parents and I find adaptations for what I want to do, and still do it, but maybe just a little differently than healthy people.
So as the reel says “WATCH THIS” and know you TOO can do the things you enjoy!
Share this with a friend‼️
Popular
Saw this trend on tiktok and I couldn’t resist. 😂 In all seriousness though there is some truth to it. CHD is a VERY complex condition that truly is an all hands on deck situation. There are so many puzzle pieces that need to “fit together”. I am thankful for my team who are willing to put their heads together, do stuff that’s never been done before, and help advance CHD Care.
Something ALL heart warriors should have
One thing that I think ALL Heart warriors should have is a hard copy of their medical records. My family and I keep mine in a binder and let me tell you… she is THICK.
But this is so important to for reasons such as:
✨Obtaining a new doctor
✨Getting a second opinion
✨Your doctor (or previous doctors) retire / practice closes
Heart Families - do you keep your medical records all in one handy spot?
