Dealing with a new health condition/diagnosis

I was recently diagnosed with a congenital heart defect (CHD), specifically, an atrial septal defect (ASD - a hole in my heart). I am almost 39, so this was a huge shock, although also somewhat of a relief to finally know that the symptoms I’ve been experiencing on and off for four years weren’t in my head!

I’m currently undergoing additional diagnostic testing to determine whether I will need open heart surgery to repair the hole.

I’m still processing everything, but I don’t want to freak myself out so I’m trying to not think about it too much, yet. I have an 8 month old and a 4 year old, so they keep me pretty busy.

So far my cardiologist has been pretty optimistic about being able to repair the hole to prevent future complications, but I know if I have to undergo open heart surgery I’m facing a long recovery.

Does anyone have any experience they’d be willing to share regarding any of the following:

1. Having a CHD/ASD
2. Undergoing major (heart) surgery, including preparation and recovery
3. How to talk to my 4 year old DD about everything....yesterday she told me my heart was “ridiculous” and I should “stop going to the doctor so much”. Cute/funny, but I want to be able to be open with her without scaring her.

Any advice?

Anagram
eggplant / 11716 posts

Jul 20, 2020

My 41 year old brother had emergency open heart surgery last November. Apparently, he had a congenital heart defect that was never caught (which is crazy, because he’s a cancer survivor and has had multiple surgeries and hospital stays, so you’d think it would have been caught—but it wasn’t). Anyway, two of his valves were so damaged (I’m forgetting the word, but they were bulging to an extreme degree, the worst his surgeons had ever seen, he could have died at any moment), so he ended up having two valve replacements.

His scar looks bad, but he said in terms of recovery, it was way less painful than any of his stomach surgeries. The chest had fewer nerve endings and you don’t use it like you do stomach muscles to sit up and stuff. He’s a beast, but he was working from his laptop From the hospital on day 3 post surgery. On the treadmill at the hospital (just walking of course) the afternoon of the third day, home on the 4th or 5th day.

By Christmas, he seemed totally normal/fine. He does have 4 prior surgeries under his belt so maybe he’s good at pushing through the recovery process.

The only tiny thing—and I hope I don’t freak you out, it’s pretty rare—the breathing tube damaged his vocal cords. He didn’t have more than a whisper for 5 weeks after the surgery. He had to start speech therapy and now (9 months later) his voice still isn’t 100% normal but it’s much improved. But he used to be a good singer and has always been in theater and stuff, and he wouldn’t be able to do that now.

But he’s happy to be alive, so he’s handled all that well.
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eggplant / 11716 posts

Jul 20, 2020

As far as your questions: he didn’t have much time to “prep” since it was an emergency, but he had a heart sonogram at a doctors office and they basically called and told him to go to an ER immediately. But he’s so chill from previous surgeries, he waited 6 hours until my mom flew from Georgia to Texas, and he waited for his girlfriend to come, and they ate dinner (his last big meal, he was saying) and then checked in at the hospital.

We told my kids the truth, Uncle Js heart stopped working correctly, and Nana was going to help take care of him. They saw his scars when they were still looking very fresh and gross and they weren’t phased by it, they asked several more times to see the pictures of his scars.

Recovery: he was able to eat normally as soon as he was discharged from the hospital. I thought he would need a recliner or something at home, but his physical therapist said no recliners. And he had to get up and move as much as he could, right away.

I can PM you pics of his scar (day after surgery) if you want. On a positive note, this is him working from home, 5 days post surgery, the night he was released. He owns his own company, so he was back at it immediately.
Ms. RV
pear / 1930 posts

Jul 20, 2020

I suggest you seek out support from Mended Hearts. They can pair you with someone that has gone through the same thing, or similar, and they also have discussion boards.

https://www.mendedhearts.org
MoonMoon
pomegranate / 3392 posts

Jul 20, 2020

I'm sorry you're going through this! I work as a nurse in a cardiac ICU and we're the first stopping point for patients having open heart surgery. Most people are amazed about how quickly recovery goes for such a big surgery. The goal is to have the patient off the ventilator within 4-6 hours, and the expectation is that they're taking walks by the next day. The sternotomy incision is painful, but many patients find the chest tubes more uncomfortable, and those are usually out in 2-4 days. You'll definitely have medications for pain control, and that will help you with all the walking and breathing exercises that will help your recovery. You'll be on the monitor and your heart rhythms will be closely watched and any arrhythmias will be treated quickly (for example, it's common to go into atrial fibrillation after surgery). For someone young like you, and having a planned (rather than emergency) surgery, recovery can be quick and smooth. Feel free to ask me any questions you might have!
MLE81
cherry / 108 posts

Jul 24, 2020

@Anagram: thank you for taking the time to share your brother’s story. I can imagine how scary it must have been for him to be told he needed surgery almost immediately, but thank goodness they caught the issue in time to fix it.

It’s comforting to know that overall his surgery and recovery weren’t as painful as he expected. I’ve never had major surgery before, but I have had two kids so maybe that will help my pain threshold a bit ;). I think I’m most worried about being in the hospital and not seeing my kids for a few days/a week (due to COVID visiting restrictions), and then trying to parent while recovering at home. I will have help, but it will be challenging to not be able to lift my kids, etc. while recovering. Then again, I am grateful that my CHD was discovered and can hopefully be repaired.

I’m still waiting to hear from my cardiologist with the results of two additional diagnostic tests, so I may be back with more questions if it turns out I do in fact need open heart surgery. Thanks again for taking the time to respond
MLE81
cherry / 108 posts

Jul 24, 2020

@MoonMoon: thank you so much for taking the time to respond to my post. It’s very helpful to hear what to expect from an ICU nurse. Of course, a ventilator and breathing tubes sound very scary to me, but obviously they are a necessary part of the process. It’s comforting to hear you say that recovery is usually easier than most people expect....fingers crossed that will be my experience should I indeed need surgery.

You mention arrhythmias after surgery....I have been experiencing atrial fibrillation periodically for the past three months which is what led to the echo where my CHD was discovered....in your opinion am I more likely to experience arrhythmias after surgery because I’m having them now? Are they generally treated with meds or electrical cardioversion (sp?) post surgery?
MLE81
cherry / 108 posts

Jul 24, 2020

@Ms. RV: thank you, I will look into this.
MoonMoon
pomegranate / 3392 posts

Jul 31, 2020

@MLE81: without knowing the specifics of your situation, I can say that generally we treat a-fib in the hospital if the patient's heart rate increases to the point where they're symptomatic or it's affecting their vital signs, and then most often with medications (IV amiodarone to start, followed by oral).

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