Feeling so awful from my ASD

General ASD/Septal Defects Discussion
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1

Hey everyone!

I’m so happy to have found this support group, I felt so alone with my problems.

I’m a 20 year old girl who just recently got diagnosed with ASD, I went to see a doctor due to my symtoms of having trouble breathing, heart palpalations, feeling extremely tired and just all horrible symtoms that you can think of.
He heard a murmur on my heart and I did a ultrasound that diagnosed my ASD.
The doctors are saying that this defect isn’t life threatening in my situation and my heart hasn’t taken any damage from the defect apparently. But then I wonder how I can feel so freaking awful, literally not a day goes by without having symtoms. I get dizzy very often, I have a difficult time breathing almost all day, my heart rate is very fast from time to time and I feel very sick.

Has anyone else experienced this level of symtoms from your ASD? I don’t know how to handle it to be honest, it’s good to hear from the doctors that I’m not in a dangerous situation but that doesn’t exactly make my symtoms go away…do you know if there’s any medications that your cardiologist can prescribe before surgery to ease the symtoms? Can’t live like this oh my god, I’m not going to school right now cause I can’t concentrate due to all my symtoms. It feels like something is terribly wrong even though it isn’t due to the doctors and cardiologists.

One doctor (not a cardiologist though) said that my symtoms isn’t related to my heart defect, that the only symtom that may occur from this is shortness of breath when exercising. That’s just bullshit I think, I feel a lot of horrible symtoms all the time.

I would so much approciate if someone could answer my questions and tell me about your journey with an ASD.

2

Hi there, my name is Jeff and I’m 50 and was diagnosed at age 47, your symptoms are real and get other opinions if needed and closure of this is definitely a must… There’s a great group on Facebook if u want to join, it’s called Hole In The Heart, adults with ASD… U can look me up there and private msg me at anytime… Jeff Burt…

3

Yes I know that a closure of this is the only option and it’s a must. I have had different opinions from different cardiologists so not just one, and everyone is saying that it isn’t life threatening and it’s not a emergency but the closure needs to be done.
Did you experience similar symtoms before your closure, if you had a closure?
Thanks for the tip about the Facebook group! @Sergeant

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Yes I did have the same symptoms, and my closure will b this Nov, not sure of the exact date but so looking forward to getting it out of my mind and behind me… And I checked the exact naming of the private Facebook page and it’s called Adults Atrial Septal Defect (hole in the heart) and it’s a great place to chat and get information, I joined a few wks ago and the responses are quick and it seems like there’s always someone there to answer questions…

5

LenaRebecka, I too experienced all the same symptoms before my diagnosis (Sep 2015 age 24). It took my doctors a year before finding my hole. Over that period of time my symptoms only got worse. By the time mine was discovered it was about 42mm!!! Even with my sever symptoms, such as, restless sleep, not being able to breath at night, wheezing, coughing, exhaustion and chest pains my doctor said I would be fine if I had the surgery the following year. To say the least, I called bullshit and had my surgery that next month. Immediately after surgery my symptoms were gone.

I am no doctor, but medicine isn’t going to fix this issue and prolonging the surgery only increases ricks. I certainly hope you choose to have the surgery. If you have any questions about the surgery I would be happy to tell you anything I know!

Get better!

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I can’t say I’m happy to hear that you had the same awful symtoms, of course not, I wouldn’t wish this feeling even on my worst enemy…but it makes me somehow feel more calm hearing that someone else experienced the same symtoms and felt good after surgery.
My symtoms started during summer with shortness of breath but it wasn’t the whole time, it could appear all of a sudden and then just pass in a few seconds and then I felt normalt again. So I didn’t put much attention to it, never thought it could have anything to do with my heart. It was about 2 months ago when I started to have real symtoms, and since then my symtoms haven’t eased a bit. I wouldn’t say it has become dramatically worse, but it has all been the same and really difficult to handle during these months. As I said earlier, I don’t have a day where I’m free from symtoms, drives me nuts.

The worst parts are the chest pains and most of all the difficult time breathing, I too have a hard time to sleep because I feel like I can’t breathe properly when I lay down in bed. The heart palpalations and “skipped beats” is very scary too.
I have death anxiety everyday almost due to this, but my doctors says that an ASD isn’t a cause of sudden cardiac death so I don’t have to worry about that.
But they say that it’s a good thing they found my hole now so it can be fixed, if I would have continued my life for years without knowing it could be dangerous and life threatening later in life.

No I don’t think there are any medication to repair the hole :wink: But I have read that there are medications that can be prescribed before surgery to ease the symtoms before it gets fixed, so you can life somehow a more normal life while you wait for surgery.
I’m to 100% going to have the surgery done, hell I would do the surgery tomorrow if that was possible! So tired of this shit and feeling so awful and not being able to live a normal life, makes me really depressed…

I’m so glad to hear that your symtoms dissappeared after surgery and that you’re good now :slight_smile: Did you feel a big change pretty fast after surgery? Could you go back to a normal, active life afterwards?
As for the size of the hole I don’t know yet how big mine is, I’m going to see my cardiologist next week and then I’ll find out and how far away a surgery is for me.
But I will tell them that I need help soon because it’s not okay to live like this, I want to be able to go to school, work, meet my friends, exercise and all the stuffs I’m used to before I got “sick”. @tps21491

7

Hi Lena. Sorry to hear you have an ASD. I did have all the symptoms you describe. I had my hole closed 3 weeks ago. The thing you need to know is that your doctor is right. It’s not life threatening. You need to be careful not to stress yourself out now that you know you have this. Stress will make your symptoms worse. So take deep breaths. You’re going to be ok. Right now it’s a mind game. Be glad you know now what it is. You’re closer to getting better. You should have it closed asap so you can put this behind you. You’re doctor will tell you that you will be back to normal in a few days after the procedure(at least mine did) That wasn’t the case for me. Now in my third week I’m finally feeling better. Remember this is surgery and your body will need time to heal. I had my done via cath which is much shorter recovery than open heart. Everyone is different. Im older than you so you may recover quicker. I’m telling you this because I don’t want you to worry or panic. I know how scary it seems. I’ve been there. You’ll be fine Dear. Make sure you have a doctor who has experience with this procedure.

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Thank you so much for your kind words!
I’m glad to hear that you finally are starting to recover. How long did you have to wait from the time your symtoms appeared and you had your diagnos til surgery?
I’m having an appointment with my cardiologist next week, if I’m lucky they can have me this week.
As I figured, if they still doesn’t see my case as a emergency I can be put on a waiting list for surgery and maybe have to wait a few more weeks or even months.

I could probably live with this for a time without it being life threatening but it’s difficult to live like this, everyday is a struggle. I will be very clear about this with my cardiologist and hope they can have my surgery as soon as possible so I can go back to living a normal life.
@Bmalaczynski

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I know your struggle. The year it took figuring out what was wrong with me was not easy. Naturally, I thought the worst. Then to find out it was heart related was even scarier. But educating myself and talking to others that had the same experience relieved a lot of anxiety I had.

My symptoms slowly progressed as the year went on. It started with the cough, almost like a smokers cough, wet and flemmy (and no I don’t smoke). On multiple accounts I was prescribed antibiotics, which did nothing. The only thing that really seemed the relieve the tightness in my chest was my inhalers. Since birth, I was told I had asthma, so I have always had a stock pile of inhalers, steroids (prednoisone) and nebulizers. All these would temporarily allow me to breath, especially at night. Since my surgery my doctor believes I never had asthma and that all my breathing issues were related to my ASD. Maybe your doctors could give you an inhaler or a nebulizer to help aid your breathing, especially at night. I also found propping the head of my mattress at a slight incline, with some 2x4’s, helped. I also kept an air purifier and a diffuser with menthol and peppermint oils in my bedroom.

As for my surgery, it went great! Mentally preparing myself before was the hardest part. Especially knowing there was a recovery time of at least 8 weeks, which for me, meant no work, no driving, no lifting, etc. Luckily I had a great family support system that helped me during my recovery. Right after surgery I noticed the tightness in my chest was gone and I was no longer having issues breathing at night. The surgery itself was pretty hard on my body, I mean, they did just crack my chest bone and sew up my heart. So my energy level didn’t come back right away. Getting in and out of bed was not easy. Sleeping on my stomach or my side wasn’t an options. And sneezing for the first time was AWFUL. But within days I was walking daily just to get my blood flowing and to not get stir crazy from resting all day. It was probably a good 2 weeks before I noticed I wasn’t feeling exhausted all the time. It took me about 10 weeks to get back to the gym where I started with light cardio and weights and slowly gained my strength back. I also did a lot of yoga to help stretch those muscles and gain my flexibility back.

Working out, eating a nutritious diet and having a good support system really helped me channel any negativity I had during my recovery. Focusing on the bigger picture and knowing I could see the light at the end of the tunnel, I believe, allowed me to have such a great outcome. Almost a year after my surgery I am now and have been back to myself, only 100% better!

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I totally agree with you, it helps a lot to hear from people in the same situation.
I too know the feeling of not knowing what is wrong with your body, even though you feel that something is. I Googled all my symtoms like a crazy person before they find out my ASD and I could make a big list out of all the diseases I thought I had before finding out haha…and at the beginning when I went to the emergency due to my symtoms and visited the doctor they thought it was great anxiety and panic attacks.
But I knew that my symtoms were from something else than just anxiety, I was 100% shure, and I was right. I prayed that it wouldn’t be a heart problem but yep that was the problem…felt like a slap in the face to find out, no not a slap, probably like someone throwing a big stone at your face. I was floored when I had my diagnos, I cried hysterically and didn’t know what on earth to do.
I went from a pretty healthy girl (or that’s what I thought all my life until now) who very rarely went to the doctor, to find out I have a heart defect that needs surgery.

However, I was lucky and my cardiologist called me today and said he could have me today. So now I have had a discussion with him, as I thought there will be surgery done. I asked about the size of my hole and he said that they can’t tell from the ultrasound, so now I’m going to do a TEE (that’s what it’s called right?), a ultrasound but via your mouth. Apparently that’s how they see the heart even more correct than with the normal ultrasound and after the TEE they can determine the size of the hole.
A surgery ahead of me is for shure, but my cardiologist said that the size of the hole and also more exactly where it is (I think that’s what he said) will decide if I can have the catheter closure, but if the hole is to big or in the “wrong” place for a catheter closure I will need open heart surgery.
That scared me so much, I was so shure that a catheter closure would do it for me without a doubt. But now I don’t know for shure until I have my TEE test…so I lay all my prayers in that now. But if a open heart surgery is needed, I will have to deal with that as well.

My cardiologist informed me that there’s a very small risk with catheter closure, it’s almost always a success and me being in good shape aside from my heart defect, young and I don’t have any other health issues is very positive for the outcome of this surgery.
He said that a open heart surgery isn’t something to be that scared of either in my case, but of course there are more risks with OHS.

I also took a new EKG today wich was perfect as always, normal heart rythm as always. They also checked my bloodpressure wich was low and great as always. I have also done a lot of blood tests and they all looked perfect.
So it seems like this can work out pretty good for me right?

He didn’t put me on any medication, he said that there isn’t any specific medication to cure even the symtoms of an ASD, there is medication for heart failure and high blood pressure but since I have neither of them it’s useless for me.
So I just have to live with these horrible symtoms until my surgery, one positive thing is that he said because I suffer from so many symtoms and they want to do something before my heart takes more damage of the defect, they will for shure put me high up on the prior list for surgery after my TEE is done :smiley:

I’m happy to hear that your recovery was a success, must be such a wonderful feeling having energy again and feeling great and that life’s good. Really gives me hope too :slight_smile:
Can you exercise normally again now? Or do you have restrictions of how much you can exercise or how heavy weights you can lift?

@tps21491

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And oh yes one more thing when you’re mentioning the breathing problems and asthma!
When I was a little girl I had several colds where I couldn’t breathe properly and my parents took me to the doctor, they thought I had asthma wich only appeared when I have a cold and is sick. But that went away, and the only thing I’ve noticed until today when all the horrible symtoms started is that my entire life I have gotten tired very easy during exercise and it has always take time for me to catch my breath.
Me, my parents and my friends always blamed that on me needing to start running and exercise more, but now with this diagnos I think hmmm maybe this was the cause this whole time?

Oh yeah and my cardiologist also said that I can exercise now before surgery if I want to, nothing bad will happen. But I will only take calm walks because that’s the only thing I have energy for right now when it comes to exercising, gaah.

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I cant help but laugh as I read your experience (very sympathetic laugh) as I feel like I am looking into a mirror. I diagnosed myself, with Google and concluded I had lung cancer, COPD and a whole list of CRAZY illnesses. Im glad to hear you listened to your body and it helped you and your doctors figuring out the issue.

I initially had an EKG done and they too said everything sounded normal. Had another one a year later, again, normal. But I kept pressing my doctor that something was physically wrong with my body. Finally she referred me to a cardiologist. Where I had another EKG, that was normal. It wasn’t until the ECO when they discovered the fluid leaking into both chambers and saw the hole. Like you, I broke down and thought the worst. My doctor talked to me about both options, but that size would determine how to move forward. That is when I had the TEE. It was simple, because they knock you out hahah. I went in, they drugged me, woke up with a dry throat and a little disoriented from the drugs. That is when they told my my hole was too large for the catheter closure and that I would be having OHS. After meeting my surgeon and him really explaining my condition and how the surgery would work, it took a lot of pressure off. The way I interpreted all the mumbo jumbo that my surgeon so greatly illustrated on a pen and napkin was that it is a pretty standard procedure and its takes all of 45 minutes (I couldn’t believe that). The biggest scare is just that it’s OHS.

Ill be interested to hear your outcome after your TEE. Please keep my posted. For you all signs seem great! It was caught and no extensive damage has been done, which I think they would have caught on your ECO. As far as treating your symptoms until your surgery try elevating your mattress and using an air purifier and diffuser.

Now, my work out routine is back to normal, if not better. I don’t get dizzy or winded from running. About 6 months after sugary I experienced runners high for the first time in my life! When I first started working out, things that were a bit challenging were weights or anything core related. I took it very light on the weights and any body conditioning. Push-up were the hardest…partly because I just kept imagining my chest splitting open (sorry to be so graphic). But my doctor assured me it wouldn’t…and it hasn’t :wink: My doctor always encouraged me to work out and be active, before and after my surgery. Just to listen to my body and never over do it!

I think your lack of energy to run is certainly due to your ASD. My parents, sister, friends and coaches always told me I was just lazy and needed to push myself more. I remember one time, in 8th grade, pushing myself so hard that a blacked out and fainted. Everyone seemed to brush it off and so did I. But I think your doctor is right in telling you to continue exercising but don’t over do it. Being active and eating a nutritious diet will only help you during recovery!

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Haha yeah I understand :smiley: I too diagnosed myself with a lot of different cancer and a lot of illnesses and I forced my doctors to take a lot of different blood tests and so on, wich all came back perfect of course and that made me so frustrated. I began to think that if these symtoms only are because of anxiety, then it has gotten reeeal bad haha.

Yeah I’m kinda nervous for the TEE, I have a feeling it will be so uncomfortable. But yes my cardiologist also told me today that they can give me drugs before if I want to so I calm myself down, and I for shure will haha :wink:
My biggest fear now is that they will tell me the hole is to big for catheter closure, but hearing your succesful story even with OHS makes me less nervous, I still somewhat have trust in the doctors and here in Sweden we are considered to have some of the best cardiac care and also surgeons in the world. I also heard that the US and Australia is leading in that part too.

The only “negative” thing my cardiologist told me about my hole is that it has affected the right side of my heart a bit, but nothing major and they want to prevent that of course by having this surgery on me so it will go back to normal.
But as I said I haven’t developed heart failur due to this and my rythm is fine and I also have 100% oxygen in my blood due to tests.
Did they tell you anything about one side of your heart being somehow affected by the ASD before closure?

Sounds amazing that you are able to exercise like that now, really happy for you. You truly inspired me and gave me hope in this mess I’m in right now, I try to think positive and think that it could have been worse.
Do you still do ECOs and see your cardiologist regular? :slight_smile:

I will also post after my TEE when I found out what kind of surgery I have to go through. :slight_smile: Hopefully the TEE will be done asap but that’s the vibe I got from my cardiologist, he said I won’t be waiting for long so this week or maybe next week I guess.
@tps21491

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Lena, mine started with a heart arrhythmia about 5 years ago. It got really bad about two years ago. I went to a cardiologist when I lived in Manhattan and she ran a lot of tests. She found the hole in my heart. The way she described it, the arrhythmia was not related to the hole. She said as long as I’ve lived with it this long I should just monitor it rather than do anything invasive. She said the arrhythmia was in a place I did not need to worry about. I can tell,you there were nights I thought I wouldn’t wake up the next morning it was so bad. I got laid off my job a year ago and moved to PA. I had to establish a doctor so I told him about my arrhythmia and that I wanted a second opinion so he referred me to a doctor here. When they ran tests they heard a heart murmur which is caused by the hole. I told them I knew I had one and he was concerned that I hadn’t told him. But I was more concerned about the arrhythmia that I thought wasn’t related. Anyway they recommended I have it closed. I had two cardiologists on my case and was discussed at the doctors round table because they weren’t sure closing the hole would help my arrhythmia. One doctor thaught it would and the other one wasn’t sure. Anyway they gave me the option to close the hole now or wait a year and get evaluated again. However the doctor felt I should do it now when I asked his honest opinion. It took 3 weeks and I went in for a cathe and a TEE. It was like the procedure only it was a test to look at my arteries and make sure everything was good before they closed it. They measured the size of the hole. My surgery got scheduled for a month after that. That month was the hardest part for me, waiting for the heart procedure and healing from the catherization. So I know what you’re going though. You will be fine, you need to trust that and not worry. Most doctors only do surgeries on certain days of the week or month so I’m not sure you will get in within a week or two but you shouldn’t have to wait too long. Maybe you’ll be lucky and get in sooner. BTW my arrhythmia is not gone but it’s much better. I was told it could take 3 months to know for sure as the procedure alone can give you an arrhythmia for up to 3 months. I’m hopeful and excited that it’s better already. I wish you the best. Be glad they found it. Keep me posted.

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Glad to hear that your surgery is helping you with your arrhytmia :slight_smile: I hope you’ll get rid of it soon.
My cardiologist told me that the waiting list for a TEE isn’t long, he said they would have me pretty quick so now I’m just waiting for a phone call or a letter with a time and date. They can do the TEE here in my local hospital, but the surgery will get done in another city since they don’t do those kind of surgerys (catheter closure or OHS) here where I live, all the specialist surgeons are settled in the south of Sweden. But they need some tests done here first so the surgeons there know if I can have a catheter closure or if I will need open heart surgery. It all depends on the size of the hole and where exactly it is, so after the TEE they will know and they can set a date for my surgery.
I’m crossing my fingers that catheter closure will do it for me, I’m so anxious I will have to go through open heart surgery…

My cardiologist is telling me that my heart rythm is normal, so I don’t have any arrythmias. I can have a feeling myself that my heart is beating irregular and skip beats but due to all the tests my heart is beating as it’s supposed to wich is a good thing. But he told me that if I don’t have the surgery now I can develop arrythmias as the years goes by.
The only thing he told me is that the right side of my heart has taken some affection from my ASD, but nothing big or dangerous and he said it is nothing to worry about as for now, but of course the surgery is a must so it doesn’t take more damage in the future. Aside from that my heart works the way it’s supposed to apparently.

He also said that if they would have find my ASD, but if the right side wouldn’t have any affection at all or if I were without any symtoms they wouldn’t do the surgery now. Then they would just call me in about maybe a year from now to do another checkup.
But since I have so many symtoms and my life has taken a downturn due to the ASD he sees no reason to wait for the surgery, now I just need all the tests done and then I hope I won’t have to wait too long for surgery, so tired of living like this now.
I’ll keep you posted and I wish you all the best :slight_smile:

@Bmalaczynski

17

I would say don’t be worried about the TEE but it seems unnatural not to worry…But its really is pretty simple, considering the worst part is getting pricked for the medication that will knock you out.

I had my surgery at Medical City Dallas, which is a very prestigious hospital when it comes to cardiac. I was very blessed to have have a phenomenal surgeon and staff!

One side of my heart was very enlarged because of the hole…I honestly can’t remember what side. But I do remember my doctor saying that was why I was having such sever symptoms. Before OHS he said it could take up to a year for the enlarged side to go back to normal, maybe even longer. It took about 9 months for it to go down.

I continued to follow up with my cardiologist 2x a month because I was having issues with my pericardium. That is basically a sack that encases the heart. After surgery there is built up fluid from when the heart is enlarged and when it gets closed it released through the pericardium. Sometimes it doesn’t release fast enough and sits in the pericardium, as mine did. So I was put on a medication (cant remember what is was) and had regular ECO’s until it went down. That took about 4 months. Had it not gone down, they would of had to drain it…not a fun procedure! After I was in the clear I now see him every 6 months!

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Now I have a time scheduled for my TEE, it will be next friday :slight_smile: So he got me in pretty fast, so happy about that.
I will see it as a step closer to have my surgery done, get healthy and have my life back again, so it’s worth it defenitely :wink:

Happy to hear that you had a great experience when it comes to surgery, the worst part for anybody must bee to have bad surgeouns or non-understanding surgeons and where the communication is bad and so on…heard of those stories, however the hospital where I’m about to have my surgery (it’s called Sahlgrenska, it’s in the city Gothenburg here in Sweden) has very great reputation and known for having great surgeons, I’ve read stories about other Swedish people who had catheter closure at Sahlgrenska and they are very happy about it and it has went really well. So I’m not worried about that part, the only thing as I mentioned before I’m worried that catheter closure won’t do it and I will have to have OHS, but whatever it will be I’m sure it will be great, I trust the surgeons there :slight_smile:

And yes that’s what he meant too! I was so nervous when I met him so I didn’t quite understand everything he said and didn’t bother to ask further, and afterwards I thought “hmm he mentioned something about the right side of my heart…but what was that?”. So instead of wondering I called the cardiac center and the nurse there talked to my cardiologist and then she told me that what he was saying is that the right side of my heart is slightly enlarged from my ASD, but just slightly nothing major, and that was the only “bad affect” my heart had taken from my ASD.
And he also said that after surgery it will go back to normal again, not like the day after surgery haha but some months after hopefully. He said that I will be having regular meet ups with him and probably the surgeons as well don’t really know, but at least with him for a year after surgery. And if everything looks fine during that year they will pronounce me as heart healthy and I won’t be having to see him anymore :slight_smile: Or at least not as regular.

It’s still hard to deal with this situation but I feel a bit better now actually, not better physically but my mind has kind of settled into it a bit more. I have somehow accepted the situation but I know in my mind that it can be fixed and it could have been a lot worse, so I’m very thankful in that matter.
And also a lot easier when hearing other people who is/has been in the same situation such as you sharing their stories :slight_smile: So I’m very thankful for that as well!

@tps21491

19

That is great news about your TEE. Please keep me posted.

I think what was most shocking to me, at that time, was hearing that this is usually something caught as a child. Knowing that I had always been in and out of hospitals as a kid for my “asthma” and no one ever heard my murmur was difficult to wrap my brain around. But my doctors really help ease the pressure of what was ahead.

My surgeon was a pediatrics surgeon. They actually did not have an adult surgeon that performed the ASD repair. But my surgeon assured me that in his world, this is almost a routine operation. And that I have a greater risk of suffering from infection than I do having complications from the surgery its self. Not sure that made me feel any better. But it did motivate me to get as healthy as possible and build up my immune system.

After surgery I saw my surgeon maybe 2 or 3 times then I continued seeing my cardiologist form there.

I too was so happy to come across this group. Even though I discovered it several months after surgery its a great feeling to have when you can relate to others on something somewhat unheard of. I wish all good things for you as you go through all of this. Know that someone across the globe is praying for you!

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I will :slight_smile:

Yes I know right, I’m so confused that it got undetected during my whole childhood, I was to at the hospital when I was a little girl cause of my “cold induced asthma” and thinking back I have always had problems with my airways on and off, never anything severe but still. Never made the connection to my heart though and I’m surprised the doctors neither did that.

But actually, when I was 16 (so it was 4 years ago) I went to the doctor for a routine checkup and he heard the murmur on my heart and was surprised that no one had ever heard it or thought about it before. I was surprised too, I didn’t have any symtoms what so ever. But he wanted to make shure there was nothing so he send me to do a ECO, wich showed nothing. And I didn’t think about it no more.
I’m actually surprised they didn’t see my ASD 4 years ago when I did the ECO, and my cardiologist is a bit confused too. However they didn’t do a bubbletest back then wich they did now to confirm the hole, so maybe that’s the reason they missed out on it. Quite a shame actually, if they would have caught it by then maybe I wouldn’t have all these problems today, it could already have been fixed. But life is life I guess :slight_smile: It’s still a good thing they found it now and that they can do something about it.

Sorry to hear about the fluid part with your heart, but it’s awesome that you only needed medication to get rid of that fluid.
Did you still have symtoms during those 9 months post surgery while your heart was still in the process of going back to it’s normal size? And did you notice a big difference when it comes to all the symtoms right after surgery, like breathing issues (wich I find is the symtom that is the hardest part to deal with) ? :slight_smile:
Thank you so much for answering my questions and thoughts and I am really happy that it all turned out so good for you and I hope it always will in the future.

And yeah this support group is amazing, I’m so happy I found it too :smiley: I don’t know anybody actually in my real life who has a heart disease at a young age, and I had never ever heard of ASDs or VSDs before I got my diagnos, so I didn’t even know that kind of thing existed and still I was walking around with a hole in my heart my entire life haha :wink:
@tps21491

21

I also wonder! Did any of you feel naseous from your ASD before closure?
I sometimes feel like I have to throw up even though I don’t, but there’s a weird feeling of being sick and like a “lump” feeling in my throat and chest, it’s super frustrating. I also start to shake a bit sometimes and feel very weak in my muscles as well.
Is this also normal and related to my defect?

@tps21491
@Bmalaczynski
@Sergeant