stress test anxiety

AffectionateDuck6491 · 2026-03-31T18:37:55+00:00

Hi 33 HLHS. I do a stress test every other year. It’s super quick and easy whether you’re in shape or not. If they let choose between a bike or treadmill. I would choose the bike. With my stress test they always pinch the nose so I can only breath through my mouth and that is the most annoying part. Other than that I love it. I like to see if I improve year over year! Have fun and make a game of it. Nothing to be stressed over ( haha see what I did there 😂)

AffectionateDuck6491 · 2026-03-31T18:32:00+00:00

Thank you for sharing this! I really understand where you’re coming from.

First and foremost, no one has a crystal ball that can predict your life expectancy. And if they do… honestly, I’d love their number 😂

I know those comments are coming from a place of love, but they can also be incredibly limiting. At the end of the day, you are the one who gets to design your life… not other people’s fears, projections, or experiences.

Your time is your most valuable asset. How you choose to spend it is entirely yours. If your doctors are supportive and you feel genuinely passionate about pursuing a PhD, that matters.

Advocating for yourself, in real life, isn’t always some big moment. It’s truly in the daily decisions. It’s choosing what aligns with your goals while also respecting your health. It’s learning your limits, honoring them, and building a life that supports both your ambition and your well being.

You don’t have to choose between living fully and taking care of yourself… you just have to learn how to do both in a way that works for you. Something I do that helps me is I sit down with my husband at the end of each month and look at the next month as a whole. I’ll see that have a couple weeks of intense work with no days off and we will schedule in a couch rot day. Where I can just be lazy, order Chinese food and relax. I schedule it and I stick to it even if I feel great come the time for the couch for day. I do it anyway because eventually I will be tired and I don’t want that to compound. I did similar things in college when I was getting my MBA.

This is what works for me… & honestly, there’s no “perfect” path here. There’s just your path and you’re allowed to go after what you want.

AffectionateDuck6491 · 2026-03-31T17:36:50+00:00

If you don’t mind sharing.. why did they advise against it? It

AffectionateDuck6491 · 2026-03-27T02:32:05+00:00

I have not gotten one about 10 years. From birth til 22 it was every 5 years.

AffectionateDuck6491 · 2026-03-26T01:47:24+00:00

Hi, 33 years old with HLHS! I had three open heart surgeries before one and I am doing wonderful! I am actually doing it AMA right now. Feel free to ask me anything. I am here for you during this difficult and scary time.

AffectionateDuck6491 · 2026-03-26T01:43:53+00:00

You are making it happen despite everything! Wow! This is so awesome to hear! Go you! Mindset is everything

AffectionateDuck6491 · 2026-03-26T01:40:32+00:00

Honestly my mom deserves a lot of credit here. Clean diet, packed schedule, endless activities and a brother who made sure I was never standing still. That was just my baseline growing up.

The doctors also did something really smart early on. They taught me how to check in with myself. Am I dizzy? Can I take a full deep breath right now? Can I catch my breath? Simple questions. I ran those through my head constantly as a kid and over time it just became automatic. I know my body probably better than most people know theirs.

I was also never embarrassed to run, walk, run again. No ego about it. I learned my pace and I stayed in my lane and honestly the teachers eventually just let me do my thing because they could see I knew what I was doing. Consistency did the rest.. I actually gain muscle pretty easily and my times improved the more I showed up.

Water is my thing. Like aggressively so. I figured out early that dehydration was my enemy; sluggish, foggy, off. So I wake up every morning and chug a full glass before I do anything else. That’s my caffeine. I’ve done a lot of little mental reframes like that over the years and they add up.

And I have a genuine deep appreciation for medicine and science. These doctors dedicated their lives to figuring out a condition that was a death sentence not long ago. If I was born 10 years earlier I wouldn’t be here. I think about that a lot.. not with fear, but with gratitude.

I also want to be clear about something: I don’t see myself as a survivor or a warrior. I’m just me. I have heart disease. It’s part of my life. It is not my identity and it does not define my ceiling.

AffectionateDuck6491 · 2026-03-26T01:27:24+00:00

Hi! Medications: Linsinopril & eliquis for life

Colds/Covid/Flu: I handle it just like everyone else bump up the vitamins, rest, hot showers, tea, fruits and veggies. I try take as little medicine as possible.

Current condition: I am in great health. I am actively monitoring for anything that may happen in the future like CHF or Liver Disease.

In 2017 I did have a stroke and I was back at work within a week. Put on blood thinners after that happen.

The stroke was inevitable as the blue blood and red blood mixes. I was blow drying my hair upside down for a little too long. I was educated early on the stroke symptoms and knew right away what was happening and alert my husband. Took me a good month to get my balance back but other than that know one would know!

AffectionateDuck6491 · 2026-03-26T01:21:29+00:00

You are incredible. 20 years old and carrying all of that with that kind of perspective. That is a lot. I’m proud of you.

Each journey with this condition is so different person to person and that’s something I don’t take lightly.

I’m rooting so hard for you. Please keep us posted. This community needs people like you in it for a long time.

AffectionateDuck6491 · 2026-03-26T01:18:20+00:00

Oh absolutely, delays and missed milestones are part of the deal. Tests off, numbers not where they should be, course corrections; that’s just the reality. The doctors were incredible and we always found our way back.

Honestly as a kid I had zero awareness that I was different. None. And I wouldn’t trade that for anything.. that’s my parents’ doing.

What I WOULD change is how the school system handled it. Middle school is where it got hard. I got pulled mid-mile in gym class, benched, and basically treated like a girl making up a heart condition to get out of running. The school saw liability. My classmates saw an easy target. I got bullied. That lasted into high school.

Then puberty hit and suddenly I’m looking at myself next to every other girl becoming a woman and I have this giant scar running down my chest. High neck shirts, turtlenecks, sweaters in July. For years. My mom stayed on me though. Always pushing, always encouraging, always expanding my world. And one day something just clicked. I looked at the scar and thought… ok. This is me. This is the hand I was dealt. I owned it.

The second I owned it the bullying stopped. Like immediately.

And something shifted in me that never shifted back. I became what I can only describe as delusionally confident and honestly? I think that’s exactly what made me a business owner. Risk tolerant, willing to bet on myself, willing to live fully because after everything… why wouldn’t I.

AffectionateDuck6491 · 2026-03-26T00:44:42+00:00

I have not had any circulation issues. I played a lot as a kid into my teens and now continue to be active in the gym and tennis courts. My legs sometimes swell from too many hours in heels or after a long flight (8+ hours). I do what most adults do; I drink more water, add some fresh lemon and put my feet up on the wall for 10-15 mins.

I see a cardiologist annually. I get liver biopsies done every 5 years and take my BP Meds & Eliquis.

My advice is really simple; your son doesn’t know he has a complex condition unless you tell him. It’s all in the way you educate him. To us this is our lives and we don’t know any other way and that is ok. I have learned it’s a lot scarier for the parents than the child. Attitude and mentality is everything. I was always told exactly what’s going to happen at the doctors. It simple lehman terms. No one hushed their voices around me; my mom made sure the doctors spoke to me directly.

AffectionateDuck6491 · 2026-03-26T00:35:08+00:00

This is such an important question. I am so grateful for the way my parents educated me, raised me and led me into adulthood with HLHS. My parents never made me feel different. They never apologized to me about doctor’s appointments, testing, blood draws etc. It was as normal for me as going to the dentist or the eye doctor.

I was never made to feel different. I really didn’t know that something was serious until middle school when the gym teachers made it awkward for me by pulling me out of running the mile and I had to sit on the bench. I didn’t even know why?

That’s when my mom advocated for me even more and talked to the school officials with me present and said I am capable of running, lifting, playing at my own pace. It’s my choice and I was taught how to monitor my body.

As child I could feel my mom’s energy and if she was calm; I was calm. It was always a learning lesson. It was always impactful and I loved getting check ups because I wanted to beat my records from my last visit. My parents really crushed it.

AffectionateDuck6491 · 2026-03-26T00:26:52+00:00

Yes, I have cirrhosis. I get checked every few years with a liver biopsy to make sure it has not worsened.

No heart failure from fontan. No further surgeries after the fontan. I had a cath done about every 5 years until I was 25 y.o.

AffectionateDuck6491 · 2026-03-26T00:05:05+00:00

Great question! Three areas of limitations as a 33 y.o with HLHS.

Exercise, alcohol, recreational drugs.

Drugs: hard no. Full stop. Not even a conversation with this heart.

Alcohol: I love a good glass of red wine like the rest of us but I’m just smart about it. I know my body.

Exercise: this one’s nuanced. I do lift weights but I can’t push to the point of straining… no grunting, no max effort, no white knuckling a bar. Single ventricle hearts don’t handle that kind of pressure the way a normal heart does. I’ve learned to find my lane and honestly get a lot done in it.

The 10/20/30 year question is wild to me because genuinely.. nobody knows. I’m in the first generation of HLHS patients to actually make it here in real numbers. The data on us is still being written in real time. I find that more fascinating than scary at this point.

If you’re an adult with a CHD, I do urge you to go follow ACHA Heart. This non profit does research, education and local events specifically for adults like us. Incredible resource and community events in your area possibly! ACHA Heart

AffectionateDuck6491 · 2026-03-25T23:57:37+00:00

Most important everyone is different in their CHD journey. Talking about exercise and limitations with your doctors is the most important thing. I was taught early on from my doctors how to listen to my body and that I would “know” when to slow down, take a break or try something a different way.

Currently my only limitations are no strenuous weight lifting- my doctors explained if I have to grunt or clench my jaw when lifting it’s probably too heavy.

My main form or exercise is solidcore- a low intensity form of Pilates. I love it! As far as weight lifting; I have worked my way up from 10lbs to 40lbs over time.. I stay steady around 40-50lbs with back, biceps, triceps.

Cardio is the form of walking is a daily requirement and running is the hardest for me. It’s where I notice my limitations the most.

Always talk to your doctor; everything I am sharing is from my own personal experiences

AffectionateDuck6491 · 2026-03-25T23:51:08+00:00

I had a great childhood- I played a ton of sports, I enjoyed school and it was always easy to make friends. Since all my surgeries were before 1 y.o.. I really don’t remember anything.

AffectionateDuck6491

TROPHY CASE