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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

Anxious 20-year-old female going through ASD closure open surgery soon

Hi. I am A; a freshly graduated nursing student who just got to know that she has a hole in her heart. My cardiologist just told me a week before that I had a large hole in my heart and I was just about to start work at that time. My world crashed down because I have been healthy all my life; I didn’t know that I had symptoms. I did feel breathless often and my fingertips would turn blue when in cold settings for too long but I just thought that it’s because of my lazy lifestyle.

My cardiologist suggested that I go through an open surgery because the minimal surgery wasn’t going to be a successful one, based on my case. I’ve never underwent such procedures nor have I visited clinics when I’m ill so I am not sure what to expect. I am just very concerned about the duration that it will take me to recover, not fully, just enough for me to be able to lift patients and work long hours. To be able to start working, basically.

I do understand that recovery settles differently for different people. I just need to be reassured that I will be fine after the surgery. I must say that I do feel scared to go through this at my age. I’ve read other posts here on open surgery but I want more. How did you prepare yourself mentally for the procedure? What is the recovery process like for those who did undergo the surgery; from ICU to the ward? What did it feel like when the first time you wake up in the ICU? How long does it take for you to be able to walk, eat, sleep normally? What about the discharge plans? What did you do after being discharged?

I have many, many questions to ask all of you. I want to know all! I want to know your stories! I look forward to your replies and bless all of the wonderful, strong survivors out there! Your replies will be of tremendous help to me. Thank you!

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Hi, I just underwent my surgery on 6th aug ,I did LIS ASD closure ,My doctor told me most cases can be cured using least Invasive closure ,so you must check with other doctors before confirming ,for me the first two days I spent on icu was hard but was happy that surgery was successful ,there will be some pain but mostly contained by pill ,When you are in ward things will be easier ,always eat healthy ,drink and sleep for 8 hours and most importantly the excersices .

After taking anesthsia I woke up after 6 hours in icu ,it felt as a normal sleep only but more happy when they tell me my defect is fixed …

They will make you walk the next day ,For everyday you need to walk ,on 4th day they will make you climb stairs and most important of all is spirometry excersices ,have to do it atleast 10 times a day

Hello. I’m happy to relate my experience. Albeit, I was 45 when I had my OHS for a large hole. I went through a lot more of life, just like you, really unaware, and ignoring the small episodes and the lack of energy when doing physical activity.
waking up in Cardiac Critical Care (CCC) I was aware, but feeling very sleepy. I barely felt the tube stuck down my throat, and when they removed it a while later I felt nothing, which was a huge relief. grogginess prevailed throughout the first evening and night. I can’t remember when they took the drainage hoses out, but it must’ve been at some point the previous afternoon or evening. I just remember being very thirsty that first night (nurse didn’t help, when, at her observation window, she popped open a soda :slight_smile: As other’s have posted, they will have you walking, coughing intentionally to prevent fluid build-up, and will give you a pillow to support the sternum, which you will keep forever (everyone does) My recover was about 6 weeks before I was easing back into work,. I spent that six weeks doing regular walks. The important thing you need to remember (especially being a nurse) is to let your helpers…help. keep in mind you are in recovery and shouldn’t rush anything.

Also, I slept fine, albeit upright in a recliner. That wasn’t bad though.

After 3 weeks of surgery am back to daily activities ,my wounds are perfectly healed and the skin had peeled off ,I going to work from this week ,Thanx for all the support guys,Hope you will have a speedy recovery too.

You might consider a sewn closure, I am living with a fractured device in my heart that no one will remove. There are surgeons who can go in under the left arm and sew the PFO closed and you are left with no chest scar or possibility of device failure.
I did fine until my device fractured 2 yrs after insertion. Since that time I spend an average of 20 hours a day"resting", not fun at all

Anxious, how are you doing? We haven’t heard from you, and we’re wondering …

Drop a line if you get a chance, OK?

Seenie from Moderator Support

hello! i’m very glad to say that i’ve passed the scary phase and am on my way to the road of recovery! it’s been nearly a month after the surgery; i had mine done on the wee morning of 01/11/18. my surgeons and nurses were very kind to allay any anxieties that i had prior to the pre-admission. turns out that i was not scared at all when entering the operating theatre!

my surgeon suggested that i do a minimally invasive closure instead of the traditional one that cuts through the breast bone; of aesthetic purposes and the expected outcome due to my age. in total, i’ve spent eight days in the hospital; two days in the intensive care unit (ICU), two days in the high dependency unit (HD) and four days in the general ward (GW).

i was so sleepy and groggy the first two days that i felt nauseous every time i open my eyes. but on the third day, in HD, i was awake enough to walk with the aid of a physiotherapist. i had two drains coming out of me, one is the redivac drain and the other was the chest tube. it was scary but definitely an exciting adventure for me!

once the tubes were out, i couldn’t wait to get out of the bed! i begged and begged my nurse to take me off the ‘fall-risk’ category so i could. my surgeons were amazed at the rate i was recovering too! i felt proud that i was able to go through the entire thing.

now, i am able to walk on my own, lift things lesser than 5kg, raise my arms casually and even go shopping! i was initially on magnesium outpatient-wise but as of now, there’s no meds for me.

but one funny thing that happened was that my blood pressure went as low as 82/54, inpatient and my nurses were very concerned but i didn’t feel any light-headedness or whatsoever. so i knew what to do; of my background, and had glasses of water and was lifting my legs up to bring it back to normal.

it’s a funny experience and it’s even funnier when the healthcare providers who were caring for me asks what my profession was! all in all, i can say that i’m feeling much better than before and i don’t get as breathless as often! the palpitations were gone too!

thank you for all the (really) helpful replies prior to my surgery! i guess i won’t be posting anymore but i am extremely thankful that i found this support page! bless all of you who took the time and effort to reply to me! all the best for your future endeavors!

xx,
(not) anxious girl!

Hello,

Iv only just seen this post.

I’m a 28 year old nurse who was diagnosed with a secundum ASD, sinus venosus ASD and Partial anomalous pulmonary venous drainage in 2016 following the birth of my son.

Fast forward to October 2017 where my open heart surgery took place to correct this.

The main thing I wanted to tell you was that the open heart surgery was not as bad in reality as it was in my head. I’ve noticed how old your post was, would love to know how you are

Laura

Just read further

So happy you’re on the other side of the surgery

Best wishes to you

Laura