What was your Open Heart ASD recovery like? (if you had it as an adult)

General ASD/Septal Defects Discussion
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Hi Everyone,

for those of you who know me I have been on this page for about 1.5 years. I had a Transcatheter closure back in 2013. But after 18 months of difficulties (I am one of the rare patients that is not doing well with an Amplatzer) - We are having it removed.

My surgeon has scheduled open heart surgery for me in May. I know all surgeries are different but can anyone give me some general ideas about the recovery? Also keep in mind I am over 40 so I don't expect to bounce back quite as fast as an 18 year old.

I am trying to give my family and my job adequate notice about how long i will be out of commission.

My surgeon said I won't be able to drive for a month after surgery and I heard the first 2 weeks of recovery are pretty painful but it gets better after that.

Still I would love to hear first hand experience!

Thanks for all your advice from this great group!

Jennifer

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Hi Jennifer

I was 41 when I had OHS to correct my severe ASD which couldn't be corrected with a device. It was a tough experience and you are right to allow yourself plenty of time. I was checking emails and working from home after 3 weeks and I actually started exercising (signficantly) after 5 weeks. I was driving after 3 weeks. Yes the recovery was painful and uncomfortable but doable. I stayed close to my PCP and had regular visits which gave me peace of mind and also good follow up care. This lasted until about week 7 or 8. You may be interested in reading the book I wrote - especially the first few chapters which are all about the surgery and recovery. www.ellenliveslifetothefull.com (I'm honestly not plugging it but many folk have found it helpful).

Hope all goes well.
Ellen

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I was 39 when I had mine, so I would think this is relevant :)

I was out of work about 6 weeks, and I was in good overall health and decent condition. I was only a little bit ASD symptomatic, even tho the hole was huge (32mm x 38mm), but there is simply no way to be ready to go back to work in less than 6 weeks. You will need 4 weeks of pretty close care. You can be alone, as long as the meds don't cause harsh depression (mine did), but don't plan on "living alone". You'll need lots of time to walk. You'll probably sleep in a recliner for 2-3 weeks. You will not sleep well, you will probably have insomnia, and if you have sneezing allergies like I do, you will hate life in May.

I was sore for a long time. My chest still pops, creaks, and hurts, and it's been 6 years and 2 days today. :) I do truly consider myself a "survivor" of OHS.

If you have a desk job, 6 weeks. If you do physical work, eeek, maybe 8. Most people can't afford that much time off, especially if you have to pay for insurance during that time.

Be prepared for being forgetful. You will feel - based on my experience - like you are a completely different human being than you once were. They don't tell you this. I am convinced that going on the pump starts a weird process of "dying" in your body and you'll wonder where the "old you" has gone. I'm less humorous than I used to be. I'm less social. I am in better health, and not at all sorry that I had the work done, but I'm not the same guy I was. Be prepared for that. It may not happen to you - hope it doesn't, but it's a phenomenon. I have a hard time focusing on tasks. I don't read as much as I used to. I'm not afraid and fearful, but stress seems more like a physical load than it used to.

Get it done. It's well worth it. But it's a hard thing. The surgery isn't the hard thing. It's the next 4 weeks.

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Thanks for both of your replies. It sounds like I might need to arrange for a bit more help after surgery..

My surgeon made it sound like I would be playing jump rope after a month (but I am cynical enough to know they always provide the short end of the recovery spectrum!)

that's a bummer to hear about the forgetfulness but I understand. My body already feels so different from 2 years ago when all my ASD troubles began.

How does your chest hurt now Bernard? Right now my chief complaints are fatigue, shortness of breath and chest pain.

I am hoping my surgery will improve some of these. But thanks for the realistic advice. I need to know

what I am getting into here!

thanks,

Jennifer

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My mother had open heart surgery to have a hole the size of a fifty cent piece closed she was 35 and that was forty years ago. She did not complain about her heart EVER! She lived a full life and worked like a horse afterwards. I wish you the best of luck. I wish I would have had mine closed through open heart surgery but really was not given that option.

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My Dad always tells the story of our neighbor who was my mother's regular doctor coming down to the house (this was in the 70's) and saying he had just lost a patient with a hole in her heart that was not diagnosed. He forced her to have surgery as he said he would not allow that to happen to her. He saved my wonderful mother from what I have now gone through and I'm so thankful for him! She was always stronger than me and my sister and now I know why as we both had holes also but just didn't know we had them.

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Jennifer - the pain now is not "heart related" in most cases. Every now and then I have a twinge of something like angina, but not a lot. I did still have a good bit of that for a year or maybe more, I can't remember exactly. But NOW, what I was referring to is actually sternum / rib cage pain due to the fact that I have to "pop" my ribs now just like many people pop their knuckles. I seem to have a rib on each side that isn't completely stable and sometimes gets sort of "out of joint" and has to be popped back in. It's a "chest pain" that very clearly is nothing heart related.

As for "jump rope" a month after, I rather doubt that. The words they used with me were "you'll feel better IMMEDIATELY." Well, no, sorry, Doc, but you're crazy. I felt like some fool had taken a chain saw to my chest "immediately", but it was NOWHERE near as "bad" as I had thought it would be all my life. At the same time, I did not feel better immediately, because I didn't have that many symptoms to start with. I'm pretty sure I was at the start of a REALLY bad downhill road, because my pulmonary artery had enlarged to triple normal size, and they simply couldn't believe that I hadn't been totally symptomatic at 19 or 20. So, these 6 years later, you better believe I'm glad I did it. I know that doctors have to be careful to not discourage repair, but I really felt that they didn't prepare me accurately for the recovery. I was never even given much dietary instruction, for instance, because I had no cardiac disease other than the ASD and resulting enlargement. They kinda fixed it and left me on my own, it felt like. I had some significant palpitations AFTERWARD, much more than I had before, it seemed, but here's the BIG thing you need to expect - IT WILL TAKE YOU PROBABLY A YEAR TO STOP FEELING EVERY HEARTBEAT. I had a LOT of skipped heartbeats, which scared me to death night after night after night. They just threw out "Oh, those are just PVCs" which made it all good to them, but nobody ever explained what those are, or why they happen, or that I didn't have to be terrified that I was about to die. (Note - I didn't die. :))

I hope I'm not scaring you - I really don't want to, I just felt a good bit of frustration with my doctors - who clearly did a great job - that seemed to think I was in awesome shape, recovering amazingly, etc., but I was terrified every night that the next heartbeat would never come. Eventually, the sensitivity to heartbeats wears off, and I may STILL be skipping heartbeats, I don't know, but I don't think so.

You WILL be exercising, and you need to. I've gotten very slack on my stuff many times, but much of what the docs tell "us" about how good life will be in the future is based on exercising regularly and continually. So, plan for that.

You can do this :) You'll be great, and you'll be glad you had it done. Sorry you've had to do it twice.

Oh, as for driving after 3 weeks, they wouldn't clear me for that. I got off painkillers pretty quick, but our local community likes OHS patients to keep a firm pillow between them and the shoulder belt in a car for 4-6 weeks (at least 4, if I remember right) so that the sternum risk is reduced in a crash, and driving like that wouldn't be a good idea. I probably COULD have driven, but I didn't have to, so I didn't.

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Hi Everyone,

Well it's July so I am about 2 months post surgery. I went back to work part-time after 4 weeks. But I work from home

doing computer work so that was manageable. Last week I started full-time and that was a big change. 8 hour days are tiring!

I still tire easily and get some chest soreness -- but it's not too bad. I guess my next question is "when will I feel fully recovered"?

But overall I am relieved the surgery went well and my amplatzer is out. For my body not having a device was the better solution.

-- As a followup question to other OHS patients. When did you feel fully recovered? 6 months? a year?

at 2 months I feel like I can do my daily obligations but I would not say I feel fantastic. But I do have some good days here and there and I am very greatful that I seem to be having more of those.

Thanks again for all the advice,

Jennifer

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Bernard - I did want to mention that this part you wrote is very true:

Be prepared for being forgetful. You will feel - based on my experience - like you are a completely different human being than you once were. They don't tell you this. I am convinced that going on the pump starts a weird process of "dying" in your body and you'll wonder where the "old you" has gone. I'm less humorous than I used to be. I'm less social. I am in better health, and not at all sorry that I had the work done, but I'm not the same guy I was. Be prepared for that. It may not happen to you - hope it doesn't, but it's a phenomenon. I have a hard time focusing on tasks. I don't read as much as I used to. I'm not afraid and fearful, but stress seems more like a physical load than it used to.

I do feel like something fundamental has changed in my personality. I don't know if it was the going on the pump, 4 days of misery in ICU -- but I definitely feel a shift in my mood and feelings. It's hard to describe but you did a pretty good job.

I do feel like it has made me appreciate small things like nature, kindness, etc that I had been kind of taking for granted.

I am trying to keep that perspective and use it in a meaningful way.

But I wanted to thank you for sharing that - it is sort of one of the phenomenons that wasn't mentioned much.