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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Upcoming Surgery

Hi All,

I’ve been a member for a few weeks now. I stumbled across this group when my surgery was locked in and felt the need to chat with people who really
understand.

I was diagnosed with an ASD (4.6cm) in December 2016. I presented at emergency with an Atrial Flutter and my heart was beating 160bpm at the top and 300bpm at the bottom. They tried everything to get it back into a normal rhythm, but after 5 days they ended up having to do an electric shock on my heart to correct it. Before conducting the shock, they put a camera down my throat to make sure that there were no blood clots that could dislodge with the shock. That was when they discovered the hole…

The reason for the delay with my surgery is due to my weight. I have been carrying a lot of weight and my surgeon wanted me to ideally shift as much as possible. I have managed to shift 23 kilos, but he wanted almost double that. Given that I cannot exercise with the inflammation in my heart, it is very difficult to achieve with food alone when I have minimal output.

In recent months I have noticed an increase in shortness of breath. As a result I had an echo done and my Cardiologist noted that whilst there is no damage to my heart, that he can see a difference from my last echo. This has ultimately brought forward my surgery and forced my surgeon to lock it in whether he likes it or not. He has explained to me that he does not foresee any issues with the surgery itself, but rather the recovery/healing, seeing as I’m quite big busted.

Naturally all of this makes me want to run away! Anyone want a visitor? :joy:

I have purchased a selection of front closing bras that should assist with keeping the girls in place.

Are there any other tips for post-op healing?

Any tips in general on how to cope with open heart surgery?

Any tips on how to cope with being so scared and mentally preparing yourself?

Surgery is booked for June 7th.

Thank you,
Karen

Hi Karen!

First of all I GET IT. Once the surgery is scheduled the days/weeks/months leading up to it are very stressful. May 2017, at the age of 51, I was diagnosed with an almost 5cm ASD (looked like the entire upper atrial wall was missing) and had open heart surgery August 31st. Scariest time of my life as I had never been in the hospital except to give birth 30 years ago.

I was only in the hospital for only 4 nights after the surgery. I was back at work (in an office) after 2 months and went on a 2 week vacation in Mexico at 4 months post op with not 1 issue. I’m going on 9 months POST surgery and I’d say I feel 90% healed. I have some soreness/stiffness at the incision site but that’s it. And NO…I was not in tip top shape when I had the surgery. I was a smoker my entire life, partied like a rock star (in my youth) and was about 20-30 pounds over weight. Just keep in mind that everyone’s experience and healing time is different.

Below is a copy of an email that I sent to a coworker that was going in for open heart surgery a few months after me (maybe this will help):


Hi Deb!
Surprisingly, open heart is really not as bad as you expect (or at least I didn’t think so after I got home and thought about the whole experience). They keep you pretty much pain free and I was so surprised at how good I felt even after 1 week.

My issue was lying flat was uncomfortable and I had some back muscle issues up until about 8 weeks (but my GINORMOUS pillow was my savior…LOL!). Coughing, of course, was difficult at first. After surgery you will have a lot of goo to cough up but that too gets better after a week or so. Try to avoid sneezing AT ALL COST for at least 1 month…OUCH! Still is uncomfortable months later.

Just a couple of things…

  1. Your lungs are most likely going to be very weak the first 2 weeks. They will give you a thing called the Incentive Spirometer in the hospital that measures your lung capacity and opens up your lungs. USE IT!! It really does help. Don’t forget to bring it home with you.

  2. I took a picture of my canoe body pillow (as I call it) I bought on Amazon. I recommend it. Sleeping (or let’s say lying flat on a bed with normal pillows) was difficult for the first month or so. This pillow was my life saver (I’m still using it…LOL!).

  3. Stairs were no problem for me but you may want have the Cardio rehab people take you up and down a flight at the hospital before you are released if you have stairs to climb at home. Just remember not to pull with your arms. Try not to use the hand railing.

  4. Prepare your house before you go for surgery.
    • Go shopping and have some snacks and easy meals available for the first few days that you can access and make easily.
    • I bought a “grabber bar” on Amazon so I didn’t have to reach up or bend down to grab things
    • I had pulled out of my closet several sweat suits and PJ sets that were big and baggy and easy to get on without assistance as well as having my slippers nearby cuz putting socks on was difficult
    • Make sure you have someone that will be there or at least come around once a day or so to do your heavy lifting, laundry, vacuuming, etc…


Hi Karen. I wound up in the ER with a 1st time AFIB attack similar to yours but the ER staff was able to get me back in sinus with IV cardiezim. Found my ASD from the ECG they did. Was 67 at the time. Had the closure done a few months later via CATH using the AO device. Was out of the hospital the next day, that was 6 mos, ago and so far so good. Has not been peaches & cream though. Seems that me & blood thinners don’t do well together. Was able to tolerate plavix OK but after several mos, had some issues, not life threatening…just made me feel that way. Now, 6 mos, post OP the Doc put me on just low dose aspirin. Feel pretty good & positive about future. My heart is performing more efficiently now; I can tell as I go thru the day without being tired. Pre closure, at 2-3 PM, I would feel like I needed to take a nap but, now, most days I’m good until around 11 PM.
Can tell you that feeling trepidation and concern pre-OP is normal and have not met anyone that has not experienced it.
Recommend doing as much physical activity as is comfortable for you prior to the surgery…don’t overdo it but if possible several short periods a day to help build up your strength.
Believe that if you have a good cardiologist that is experienced… done several ASD closures, and that you are at a good Heart hospital; things will go well.
All the best & let us know how you are doing.
JJ

So sorry for the delay in replying. I have made notes from your wonderful message and will do as you have said. Surgery is in two days time and I’m feeling scared and excited!! I plan to do everything that they ask of me and hopefully that will have me up and about in no time. Thank you so much for replaying, very grateful! :slight_smile: x

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Thank you JJ. I’m in for surgery on 7th June, so not long now! I’m scared and excited and ready to take this head on! My surgeon is amazing and I’m 100% confident in his capabilities. He is trained in transplants, so I think my ASD closure is a walk in the park in comparison. I will update as soon as I am well enough to be back on the computer :slight_smile: Thank you and very grateful for your response :slight_smile: x

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You will do great :+1: Prayers are with you for a successful procedure and a rapid and strong recovery!

JJ

Hi All,

Just a quick message to let you know everything went really well with the surgery. I was in hospital for 7 days and I’m home again now, up and walking around.

I will update again in a few weeks time.

I hope that all is well with everyone else too!

Thanks,
Karen

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That’s great to hear!!! I’m new here. My name is Megan, I’m 40 yrs old. I do my meet and greet with the doc in a couple of weeks. I had a stroke 4 yrs ago but I just found out that I have a asd but, mine is like a flap, not a whole. If you don’t mind, why did you have to stay in the hospital for 7 days?

Hi Megan,

It depends on what is required for your surgery. The closure of an ASD can differ from person to person. Most are closed via cath now, where a little clamp/device is used to seal the hole or flap closed. Recovery for this is merely days, as it is not a very big procedure at all. However, in my case, my hole was too big for the clamp, so I needed to have full open heart surgery, which required breaking my sternum and the hole was sewn closed by my surgeon. This kind of recovery is much longer, but the average stint in hospital is 5-7 days. Recover at home continues for up to six months. I should have been released to go home after 5 days, but my oxygen levels took a little longer to get back to normal and I spent an extra day in ICU.

Do you know what kind of procedure you are having? Is it just the cath? Or full bypass machine/open heart surgery?

Happy to answer any questions you may have :slight_smile: and welcome to the group!

Kaz

I have the flap in my heart I guess that’s the pfo, their going to do the cath like when I had the stroke and they got rid of the blockage like that. My doc said I have to go to Washington D. C. For surgery because their the best. I have to see their neurologist and then the cardiologist who I think is going to do the surgery