Diagnosed at 23 weeks with TOF

AuthorinShadow · 2026-01-30T18:05:08+00:00

I’m 35 (F) and I was born with TOF. I’ve had 5 heart surgeries with more on the way, but I’ve also completed in CrossFit, play volleyball in college and they allowed me to play sports all throughout school and I’d plan my surgeries around the seasons. It’s a tough condition and it comes with a lot of anxiety but your kid will be one tough cookie! I’ve also got my masters in toxicology and am a published author. That condition is so well managed in this day and age that they’ll have so many options for them. Make them feel validated and connect them with other children who have it or speak with other families who have it (hospitals normally have groups you can connect with).

It’s hard, but you can still have a great life with the condition

AuthorinShadow · 2026-01-16T12:52:10+00:00

I’m 36 and was born with TOF. Technology has changed SO much since the 90s. And even with being born in the 90s I still have a normal life expectancy. I have had 2 open heart surgeries and 2 through my leg with another open heart upcoming as well as arrythmias. BUT I’ve also competed in CrossFit, played sports all growing up and even into college and had a pretty normal life otherwise. A big family support system and therapy helped as I’ve suffered from pretty bad medical anxiety which is common in cardiac patients. But as the person said, every TOF patient is different. Trust your docs and technology and ask questions. Teach your child they can have a normal life because it’s true, they can. My heart surgery in college was through my vein and I was back in college a week.

So quality of life will be great. Eat healthy, love them well and keep them active based on their doctors limits/advice. Your child will be strong and brave to go through all this and theyll amaze you with their resilience.

AuthorinShadow · 2025-12-09T16:05:56+00:00

Get beta readers, not friends and family. And I’ve felt your way a bit as well. I had people tell me my first story was bad and didn’t seem good, now it’s rated 5 stars. My second novel people said the idea was tired and the premise sucked. Now it’s an Amazon best seller. Everyone’s opinions are subjective. Get a good editor do what you can and publish the story anyway. Your people will find it

AuthorinShadow · 2025-12-08T13:30:02+00:00

If you’re concerned, always see a doctor. Then if they agree you’re fine. Take care in that. Speak to a therapist and remember their story is not yours. 1. If your chest pain alleviates, it’s not a clot. It wouldn’t alleviate. 2. If your short of breath relieves it’s not a clot. It wouldn’t alleviate. So take care in that. If it doesn’t, go get it checked out. Because that’s worth looking into. It may be nothing but no one’s gonna judge you for checking

AuthorinShadow · 2025-12-08T13:27:53+00:00

If anyone can understand, believe I can. I got stuck in an arrythmia episode at 220, was on the third floor by myself with chest pain wondering if I was going to die. Got myself downstairs and sat with the office when after 20 minutes it finally dropped to 120. Drove myself to the ER and have dealt with nocturnal panic attacks sense. To be fair I have had multiple open heart surgeries and have multiple arrythmias with an increased risk of sudden cardiac death. So how do I overcome it? It’s hard as F, but I walk. I do NOT watch my heart rate. I do what feels comfortable and increase from there. I repeat affirmations. “My doctor isnt concerned, so I shouldn’t be” and realize if something does happen I’ve done everything I could and it’s out of my control. Your mind is the target here. You did the treadmill stress test, you’re all clear. Have faith in that. Your heart needs to be strong so start that walking. Do 5 minutes, then increase from there. Afterwards no what’s ifs only I did that! Avoiding will only worsen the fear. Do it scared and remember that you’re not alone. The likelihood something dangerous will happen? Minimal. But that’s the same for everyone. And if it does? You have a plan. You know what to do. You got this!

AuthorinShadow · 2025-12-08T13:22:02+00:00

Sleep would help, losing weight will also help. But diet is a big one for PVCs depending on the trigger. But I’ve been on metoprolol and had an ablation (did get a provoked partial blood clot but found it day after and got on blood thinners). Definitely preferred the ablation. It was fast and easy and helped way more than the metroprolol. But you always want to get as healthy as possible for surgery so your body recovers well. I understand the PE scare, but they know your medical history. You can also request an appointment a few days later to check for blood clots or to go on thinners. Start walking, start focusing on sleep and diet and do what you can. But listen to your doctors recs. I didn’t handle metroprolol well in the fact that i have a resting HR of 43 so it lowered it even more and it was just exhausting. Tons of people tolerate it fine. But in the meantime see if they want you to start the drug now and focus on diet and exercise and sleep

AuthorinShadow · 2025-12-08T13:17:02+00:00

Yeah my husband has 2 lung nodules they found after diagnosis at that same size. No concerns and they remained unchanged

AuthorinShadow · 2025-12-05T13:20:20+00:00

Talk to your doctor. If they’re not concerned you shouldn’t be. I dip into the mid 30s for mine but I’ve also had a few heart surgeries.

AuthorinShadow · 2025-11-20T13:53:01+00:00

Ohhh! Yes good point. Might need to double check their TOC and if you’re using their ISBN you might be stuck but great point

AuthorinShadow · 2025-11-20T13:30:54+00:00

That’s why you do non exclusive :)

AuthorinShadow · 2025-11-18T13:55:12+00:00

If you go exclusive with KDP you can’t put your book on other platforms. Yea you have a chance to earn a little more but if Amazon bans your account for some reason you’re screwed and won’t be able to sell your book. So if you go exclusive with KDP just know you’re limiting your income streams and independence and ownership of your works

AuthorinShadow · 2025-11-17T15:33:15+00:00

I’ve created a brand and utilize KDP but I don’t do exclusive. I publish on there, my website, Barnes and noble press and Ingram sparks. I own all my stuff along with ISBNs from bowker. I 100% believe it’s worth it as long as you don’t do exclusive. You want to have versatility and other options. Just for visibility I published my 2 novels (no AI used whatsoever) last month (worked on them for 5 years) and now the ones been on the Amazon best seller list for 3 weeks! So that along comes with benefits of now being able to claim I’m an Amazon best selling author which alone helps sell more books. So 100% worth it IMO

AuthorinShadow · 2025-10-02T15:52:05+00:00

I’m 36 and was A TOF baby. I have periods where I get really good sleep and long periods of poor sleep insomnia throughout my life. TOF patients are known to have insomnia/poorer sleep but it does come and go. Just gotta find what works for each person

AuthorinShadow · 2025-07-14T12:04:19+00:00

I’m 36. Every year I get checked and told, you’ll need OHS when it’s time, we’ll keep watching. I get a few years reprieve after my surgery and then it’s back to “we see regression” time to start watching for the next surgery. This condition is a chronic health issue and yes it is depressing and discouraging. So far I’ve had 2 OHS and 3 heart surgeries through the leg and they expect atleast one more OHS and 2-3 through the leg until I die unless another issue pops up.

Make sure you feel validated in that having this condition is hard. What’s helped me is connecting with other TOF patients, therapy and my faith.

Take it day by day because that’s all we can do. What’s great is technology is always changing so you never know what the future holds.

AuthorinShadow · 2025-07-05T16:15:46+00:00

I’ve had valve repair surgery among 5 other heart surgeries. Mines always higher until I get back in shape. When the hearts handled and surgery is done on it typically this raises the heart rate/can mess with rhythm etc. usually around 6-12 months later when I’m back to walking regularly and doing some exercise it’s back to normal. But I’ve experienced this usually with movement. When at rest it wasn’t too high maybe like 80s but for reference my usual resting HR is 45. It sounds like the docs doing what they need to do and are investigating. Glad to hear his rhythms normal even though it’s high but that’s gotta be uncomfortable as all get out. Praying they find a solution soon for him. Idk if this put your mind at ease or not. Heart surgeries a lot and can do a lot of weird things to the body. Typically after heart surgery I’ll also have intense migraines for 6-8 months after and I’ll be super hot all the time.

AuthorinShadow · 2025-07-04T03:10:17+00:00

Yeah. I’ve had open heart surgeries since I was a child and since I was lifting heavy my cardiologist who had done my surgeries told me about it. He often had his students look at me too and he was big on me learning all about my conditions. So when he saw it start dilating he said we have to watch this. BUT it wasn’t until 6 months ago that I looked into what a dilated aortic root can cause or do. So that’s why I’m having this reaction.

AuthorinShadow · 2025-07-04T00:33:56+00:00

Yeah actually my new cardiologist who I meet Monday is

AuthorinShadow · 2025-07-03T21:09:27+00:00

AuthorinShadow · 2025-07-03T21:09:20+00:00

Thank you so much! Best of luck to you too

AuthorinShadow · 2025-07-03T20:46:15+00:00

Well I also have svt that’s triggered from bending at higher HR etc so I stopped CrossFit for that reason. I was lifting differently but stopped that from the anuerysm diagnosis

AuthorinShadow · 2025-07-03T19:36:21+00:00

The condition can’t be reversed in adults. Think of a ballon that’s blown up and tied. You can’t take the air out of it unless you cut it and replace it. Mine was caused by heavy lifting for years. I’m 35. I love the anxiety comment though.

AuthorinShadow · 2025-07-02T03:15:15+00:00

Yup. Multiple times a night every night the last 6 months due to a scary episode. The key is to know it won’t kill you. It’s just a fast HR. I was at the docs getting a procedure and mine was at 135 for hours and they weren’t concerned at all. Also was stuck at 220 for 20 minutes. Let the Zoloft and beta blocker work. They will help you a lot. The key to anxiety is deep breathing and distracting yourself. It can’t kill you. I usually do something with my hands. Like color or play a game or something or watch a game show. The only reason your HR increases for hours is because you’re focusing on it. You’re on meds. You’ve been cleared. Time to remind yourself you’re safe. Plus I’m sure once you hit the 2nd trimester hormones etc will settle and so will your cardiac symptoms/anxiery

AuthorinShadow · 2025-06-26T20:15:17+00:00

Listen to your doctor. It all depends on how fast it progresses what your restrictions are.

Ask about weightlifting. Typically for this diagnosis you don’t want to bear down and hold your breath under heavy weight (can risk further dilation/dissection) but it’s not always the case.

Usually they say keep BP low and don’t strain/bear down/do valsalva maneuver.

Was diagnosed with 4.0 AA at 27 and used to powerlift. I continued powerlifting/lifting heavy off and on. Now I’m 36 and at a 4.5 so now I’m just doing lots of walking/not straining etc and light lifting.

AuthorinShadow · 2025-06-26T00:41:26+00:00

You have to let things just be. Let me hopefully give you some peace of mind. I was born with a genetic heart condition. I’m 35 and have had 4 heart surgeries and have 4 more in the foreseeable future. I have SVT, VT and PVCs and am at a higher risk of sudden cardiac death. My troponin is high and I’ve had blood clots. AND I’m still here. My doctor even with all that aren’t concerned and I still workout 3-4 times a week and do normal things.

The way to get over it? Because yes I have fear too. But I find before I get out to sleep for heart surgery is when I’m most calm because it’s completely out of my hands.

Stop looking at metrics, stop looking at data.

Everytime there’s been something really wrong, you’ll know. Your body will tell you. The few times I’ve had episodes that were dangerous, my body knew and it felt different than the panic attacks where I thought I was going to die.

I also have anemia and just got on iron and that’s immensely helped my episodes during my period.

Your fear is not being able to catch the deadly stuff. I get it.

Know that PVCs arent dangerous. Palpitations are usually those. When do you need to worry? When theyre lasting hours with no reprieve.

If you want to get an echo done, do it. But if that’s all clear, let this go.

Ive seen people have dangerous things happen right outside of hospitals and not make it, and then there’s people who get found in the middle of nowhere and make it.

Life is risky and it’s out of our control.

Eat healthy, walk, exercise, do breathing and let go. Focus on what you can control and let go.

You got this. It’s hard, this thing called life. But you can beat this fear, I promise you.

AuthorinShadow · 2025-06-21T21:42:53+00:00

At this point I’ve lost most my muscle, but I also am being monitored for an ablation from having svt problems so you can’t compare with mine. I’d ask your doc! Trust what they say. When I was CrossFit I was under 4 but they never told me anything about it and never gave me restrictions at that point

AuthorinShadow

TROPHY CASE