Hi!
I was just diagnosed with ASD at 37 after having fatigue, dizziness, pvc’s and pacs for a year and a half. I had every test under the sun until I was finally diagnosed with ASD after a TEE test. My cardiologist said it is a decent size hole, I forget exactly how large but he said about the width of a finger tip. He also said I was coughing a lot during the test and it was hard to find my 4th pulmonary vein which could mean it also needs repaired or it was just a bad image. And he can’t be sure my “rim” is long enough for the clamshell to adhere to. I was then referred to an interventionalist, however, have to wait 6 weeks just to see him for a consult. My appt is at the end if this month. I am going crazy waiting to find out what my future holds. I should add, my father just passed away in June after undergoing a mitral valve replacement surgery at 65. So the last thing I want to do is have any kind of heart surgery. My cardiologist understands my anxiety waiting so asked if the interventionalist could take a quick look at my TEE and give his preliminary thoughts. Good news, he said the hole is small and could be fixed w a heart cath clamshell procedure. That came as a huge relief, but now I’m reading about adults who have had this procedure and they complain about pain, and dizziness, palpitations and migraines. I guess I’m looking for some positive experiences! I want to know that there are adults out there like me that are tired, dizzy and get this procedure and come out of it feeling like themselves again!
Please anyone out there with positive experiences or advice I would appreciate it.
Hey! I can't help you to with what it feels like after surgery, because I am waiting for mine too.
I am 21 and I was diagnosed in November 2012 also after every test under the sun haha (It took 11 months to get the ASD diagnosis!) My ASD is 2cm. Like you I also feel dizzy, I am frequently lightheaded and I faint quite a bit (every doctor has said that my ASD has nothing to do with fainting, which is annoying). I also get really tired and generally feel awful. After my diagnosis I have felt dreadful! It is nice to know that I am not alone in this, no one I know (I live in the North West of England) seems to understand what I am feeling! Everyone just keeps saying ''oh well, it can't be that bad if they are keeping you wait for so long!
It is a relief to know I’m not the only one 
My cardiologist said that my symptoms could be related to the ASD, however, not all patients feel better after they get it repaired. And I’ve read a lot online about patients who say they have migraines after the clamshell closure 
I’d like (and I’m sure you would too) to hear about a few people who had symptoms like ours and after closure felt like themselves again
Btw: I live in Baltimore and a Baltimore Oriole, Brian Roberts has ASD and he had a closure via open heart at age 5… And he is a professional athlete now there’s a success story!
A great website is the adult congenital heart association website. I recently signed up to have an ambassador (someone who you can talk to weekly that also has chd as an adult). It’s been comforting to hear others experiences and They are terrific with resources, book suggestions, doctor referrals ect! Please check it out I think the website is achdheart.org you can google it.
My appointment is in 3 weeks (4/30) and I was told my closure would be scheduled after that and would be quick… So I’m looking at the first or second week of May. Please stay in touch as I’d love to hear about your experience. Fingers crossed we will both be back sharing our positive experiences
I hope that after we have our defects closed we will have no symptoms! Argh I feel like I have had enough of feeling rubbish!
I think I am having 'clamshell closure', although I am having mine under general anesthetic because of how poorly I coped with the TEE (I hated that)!
I will check out the links you have suggested, thank you :)
My appointment is the 23th of April :) it should have been next Tuesday, but it got cancelled. I hope it have my surgery before my 22nd birthday (the 28th of May), but with the UK's NHS you never know!
I will keep in touch and I wish you the best of luck!
Yes I’m also requesting to have anesthesia for mine! I had it for my TEE and didn’t feel a thing. Just woke up with a scratchy throat. I can’t imagine being awake for that!?! You are stronger than I am. I wish you the best of luck and think its so good you found out at 21. I wish I found out sooner as they say the sooner the better.
I’m trying to stay positive ans patient until my appointment on the 30th and hope you will too. If you find out any new info on asd please let me know and I’ll do the same for you. Also, please let me know how your appt goes. It’s comforting to know there is someone out there going though the same thing.
One year ago, after experiencing heart palpitations and extreme fatigue my primary care doctor ordered a round of tests, I saw a cardiologist, had an angiogram and was diagnosed with both an ASD and a PFO. After weighing the pros and cons of doing a repair versus the increased risk of developing pulmonary hypertension and risk of stroke if I waited to have the repair done, I decided to have the repair done. I am now almost to my year mark and am so glad I had it done.
Being 39 and finding out that I had had this CHD since birth was a shocker to say the least, as I am sure it was for each of you. But it is worth having the repair.
I had a couple different people tell me their success stories and I expected to feel the same way they did, they felt great just a couple of weeks after surgery. So I expected the same. Didn't happen. But I am feeling so much better now. After the repair my cardiologist kept me on Plavix and aspirin along with blood pressure medication. The blood pressure med was to keep me from having heart palpitations. I am now only taking 81 mg. of aspirin a day. My heart palpitations are virtually gone, ( I do have occasional 'flutters' but they're so faint that I hardly notice them.) My migraines have not been nearly as bothersome. After my closure I did have 3 or 4 but nothing since.
When I had the last echocardiogram all looked great. Both devices (they had to use two different ones to close both holes) were in place and healing great. The repair is so worth it.
Remember that not everyone is the same and the experience is different for each of us who has had the repair. It is so important to ask all of your questions and if you ever have any concerns about anything, from the repair to your recovery or any medications they may put you on, ask your doctors. There is no such thing as a dumb question. You will feel better if you ask.
I wish you both the best of luck and please keep us posted on how things go. It does get better. I feel better everyday.
Thank you so much for sharing your experience. I think the waiting is the worst part for me. Not knowing when or how or what the outcome will be. I am trying not to over think it too much and agre with you that everyone experience so different. I’m trying to be as prepared as possible and have 2 appointments in a week and a half so that I have 2 opinions to go off of. Like you, I’m shocked this was discovered so late but am grateful that it was because I was being to think I was crazy or depressed. I became so tired and weak feeling and then I experienced passing out and palpitations. I knew it couldn’t all be in my head, however, had a few docs say it was anxiety. I am so happy to finally have an answer for the ways feel and hope that this closure will help me feel like me again
Thanks again for your encouraging response. I’m so happy ou are feeling better now!
Hello Kimerlee! I am so glad to hear everything went well for you!
As for you both saying you were surprised to be diagnosed, I know I am only 21 but I was completely shocked to find out about my heart. I couldn't understand how it had never been picked up before because I have had two operations (when i was 11 i had my ears pinned back, it went wrong, so i had to have it done again) and therefore i have had 2 general anesthetics!
It's amazing how knowing you have a heart defect can mess with your head, I won't go out on my own anymore because I am too scared i might faint or worse... On top of the diagnosis, my mum died on the 14th of January from a very long illness and that has made me feel about a billion times worse :(. arghhhhh
I’m so sorry for your loss. We have a lot in common. I too lost a parent a few months ago. My dad passed away after an open heart surgery to replace his mitral valve. That being said, I am very nervous and scared about my closure. I pray everyday that they can fix this with the cath closure and I can avoid ohs. Like you, I also suffer from anxiety and will not go out of the house alone. I fear passing out or worse and no one will be ale to help me. It’s so sad how it overtakes you. I was given several books to read and I am on my first one which is helping me stay calm and relaxed. It is called “wherever you go you are there”.
I’ve also gone to the adult congenital heart defect website and they have been so helpful! They have great resources and they can pair you up with an “ambassador”. It’s like a friend or support that you can email or call to help you through the process. They all have some sort of achd so understand and have great advice.
In addition, if you are on Facebook, there is a group called atrial septal defect and they all have asd and share their personal experiences.
I understand how hard it is to loose a parent, I also understand how hard it is to find out about having asd. I’m so sorry you have to go through all of this at such a young age. It’s not easy so I can’t say that it is, but some encouragement my doctor has shared with me is asd is the “easiest” of all heart surgeries. So know that after this procedure you will feel better Also, you are so lucky to have found this at such a young age. My only advice is to stay focused on the positive. It’s easier said then done, but it works. When I start to get worried I try to become still and focus on my breath. I tell myself to relax and think of good thoughts. I wish you good thoughts and a speedy recovery!
Good luck at your appointment next week. Please let me know the outcome. I’m still waiting for mine on the 30th, and I also have one on May 1 (second opinion).
Thank you SO much for your advice! :) I really appreciate it!
I am sorry about your dad, and I can understand why ohs would be extra frightening for you. I will keep my fingers crossed that you can have the keyhole surgery. I also know how scary it is waiting to know if your going to have open heart surgery or keyhole. I had my TEE to figure out which option i could have on the 14th of December and did not find out the results until the 12th of January. Tragically, the 12th of January was also the day my family were told my mum wasn't going to make it. She was unconscious so I couldn't tell her that I was having keyhole :(
I can't tell you how much stronger I feel knowing that someone else is going through what I am going through!
Once again, I am so glad I found this support group!! Have a good day/night :)
Hey there :-)
I don't have ASD but I have MVP ( Mitral Valve Prolapse). I don't feel comfortable talking about my disease but I saw your message here and I said Thanks God I'm not alone. I'm also 21, turning 22 this June. I was diagnosed when I was 16 and I'm also taking some medications. I fainted just once. My cardio said it was sort of a hyperventilation. Not too related to MVP but my doc said many people with heart disease would usually hyperventilate.
I'm scared of surgeries, honestly. I just read something like mitral valve replacement surgery on Jarboea's post.. O_o
Just keeping myself strong though. I'm still thankful for all the good things God has given me. Life is very precious. They say I should count the blessings instead of the things that I do not have. And I'm still happy! Good luck on your appt for both of you.
XoXO
laurull said:
Hey! I can't help you to with what it feels like after surgery, because I am waiting for mine too.
I am 21 and I was diagnosed in November 2012 also after every test under the sun haha (It took 11 months to get the ASD diagnosis!) My ASD is 2cm. Like you I also feel dizzy, I am frequently lightheaded and I faint quite a bit (every doctor has said that my ASD has nothing to do with fainting, which is annoying). I also get really tired and generally feel awful. After my diagnosis I have felt dreadful! It is nice to know that I am not alone in this, no one I know (I live in the North West of England) seems to understand what I am feeling! Everyone just keeps saying ''oh well, it can't be that bad if they are keeping you wait for so long!
Mary, I’m sorry to hear you also struggle with dizziness and fainting. It’s an awful feeling, but the good news is it sounds like they know why it’s happening. Just to fill you in a little bit about my dads mitral valve replacement, as not to scare you. He had 2 heart attacks prior, a fib and rheumatic fever as a child which damaged his mitral valve and he was 65. So his situation was completely different then yours and I would use his experience as an example of the typical valve replacement. You are young and healthy otherwise so if you ever need a valve replacement it will have much less risk associated with it. My father in law had a valve replacement the same week as my father and almost a year later is doing great! He is 69 and skiing again, traveling to Europe and enjoying life. The one thing I’ve leaned about the heart is everyone’s experiences are so different and although we can all relate to how it feels emotionally to have heart defects, it’s almost impossible to compare surgery. Good luck.
Hello Mary! :)
You definitely are not alone! Although no one us want congenital heart disease, it is good that we have been diagnosed at a fairly young age. Good luck with your MVP!
P.s I am 22 on the 28th of May so soon we will both be able to sing taylor swift haha :)