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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

Recently diagnosed looking for guidance

I was recently diagnosed with a 2cm ASD and will need to have it patched. Need a catheter test to determine if I am a candidate for the amplatzer* patch or will need open heart surgery (depending on how much tissue there is. How long from diagnosis to surgery did it take? I have some symptoms (palpatations, shortness of breath and am tired all the time). Will I be able to get it patched during the school year if I do not need open heart surgery? Thank You!

Yes. It’s much less non invasive than you think. I had Amplatzer on Thursday and back at work on Monday, taking it easy of course. You’ll be fine. Trust your doctors. I feel great now. Had mine done 6/20/19. I was apprehensive too, so I know what you’re going through. From diagnosis to procedure, I chose fast route and knocked it out 2 weeks later.

Were you able to get back to working out pretty soon after? What were your symptoms like before hand? I am relatively active (ran marathon last year) 24 year old male. My cardiologist says significant left-to-right shunting is likely the cause of some of the symptoms i’ve been having recently. applying to medical schools now so just really don’t want to be side-lined for too long of a period.

Hi cecilan1, I’m assuming your in the US, but say if U.K. timing info helpful. For the other option they’re checking you for - I had open heart and that takes longer to recover, but you are young (I’m 50). Mine was 2cm ASD also, the position was what required OHS. Where is yours? Mine was at the top of the dividing wall, known as SV-ASD (sinus venous, I think near where veins enter), so device wouldn’t have enough area to grab onto.
My recovery from OHS has taken 4 months so far, with 80% of daily life now back to normal. Just can’t sustain running or do lots of consecutive days out yet! Agree with you about shunt symptoms. Since op, I get less dizzy, and after lungs recovered from ventilator, less breathless as well (except that my fitness has gone for a while!). I also used to get no heart rate training benefit (no matter how much running I did, I could never get my heart rate to lower and cope with the exercise at a lower heart rate). I suspect this has changed, as my walking rehab is showing heart rate training improvements
Wishing you all the best.

PS I was able to study (in many short chunks) about 4 weeks after OHS, so even that route might allow you to complete school year & med school application, if surgery was during holidays.
With luck, you’ll be good for the device anyway :slight_smile:

Thank you I really appreciate it! I got a call from my cardiologist who said it looks like I may be a candidate for the patch, so crossing my fingers I can have that done soon in order to feel better and get on with my life quicker. I will need a kind of exploratory catheter next to determine if there is indeed enough tissue for just the patch. However, I know something like this should not be rushed and I should take my time to recover fully.

Hope they are able to confirm the device route. If your catheter check is anything like the “angiogram” I had, (through blood vessels at top of thigh, whilst awake), then some things you might like to know

  • I couldn’t exactly feel the catheter, but my heart could and did loads of ectopic beats during the half-hour test - nothing dangerous, doc said my heart was just a bit sensitive, but it was a strange feeling, like butterflies (but in the heart not stomach), or being on a rollercoaster.
  • after leg catheter, thy made me lie fully horizontal and still for several hours to not cause bleeding, and I had to watch for internal bleeding (swelling) in the days after
    Good luck.

my OHS was scheduled for about a month after my diagnosis.

hi there cecelian1, mine was detected in 2018 ,age 25 female… was a huuuge shock literally thought it was the end of my time here lol . after much research of my own and stumbling across this AMAZING group i had hope . i had a TEE done and there were 2 cardiologists present and measured the 2cm and concluded OHS was the only option because of its position , it was devastating. he then told me to return for a cath so it could be further analysed , the entire faculty of cardiologists were present during my cath, and they tried “various” (only 2 sizes) sizes from the AMPLATZ range , which either touched on the aorta valve or fell through , needless to say they concluded OHS was the only way, i cried the night away in highcare and was discharged OHS was something i was against from the onset, and all cardiologists told me it was the only way . i felt pressured and just didnt pitch up for my app with the Cardiothoracic Surgeons, i carried on researching and went back to my cardiologist to inform him about my findings which he was still adamant would not work as the size of 2cm was to large and amplatz is the best… (i was also diagnosed with PH during that time which scared the daylights out of me) idecided to search for another cardiologist and after much research i found him ! 7 months later , and he was fully booked for the rest of the year, i maintained that i would wait to see him and finally my turn came up this year 2019. during the waiting period the other cardiologists did call to inform me i could deteriorate, i heed nothing that was told to me. non the less,… i went for my app to my new cardiologist and explained to him my story and mentioned to him a company that would have the correct sizing for my ASD…OCCLUTECH!!! and he turns to me and says young lady thats the device i use aswell, goes on to perform an echo and says he has an opening for the next day in the cathlab , i instantly said yes book me in. went in the next day and in under 3 hours i was done , stayed a night, and discharged the next day. moral of the story research EVVVERYTHING .
i hope im not too late in this reply .
do keep us updated , :smile:

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How are feeling now?

I feel really incredible ! energy levels up, much much more easier waking up . i do not feel cold any longer.( hands use to be icey cold) overall circulation is far better .
please feel free to ask literally anything.


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oh yes! and the PH is close to gone. will give it till December / January . my body has / is reprogramming lol :slight_smile:


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What were some of your symptoms before you got the procedure?

symptoms were passing out “black out” ( more accurately it should be termed blue outs) , being cold even on a warm day. shortness of breath ( only during gym workouts,id last 7min on the treadmill and would feel lightheaded, vision use to blur) oh yes pin and needles in my hands too…

what are yours ?


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They have not been nearly as bad as yours. I have palpitations and fatigue. Also I have been quite tired lately. My cardiologist says I have significant left to right shunting with a 2cm hole. Getting checked soon to see if hole can be plugged by cath, cardiologist that performed my TEE was not sure. Did you have right to left shunting? You’re symptoms seem rather indicative of that.

Hi

I had my cath closure two weeks ago today and it’s been hell. I was expecting to feel the best I’ve ever felt but have the opposite. Chest pains and heaviness with body aching all over like I have flu and feeling that something is stuck in my chest. I’ve been told it’s inflammation of oesophagus and to take stomach tablets for a few months and maybe my body is reacting to the device or I had a virus. I’ve read a few posts about nickel allergy and asked consultant for a patch test. Why they don’t carry these out at pre op I have no idea. Don’t take the patients word they not allergic to anything as how would you know?!
I get tired all the time and feeling like I can’t take a deep breath and started to get headaches a week after closure, get hot and feel sick in the evenings.
Seems it works for some and not for others. I’m in the UK

Wow. I’m sorry you have to go through this and these struggles! I hope these symptoms subside soon. While it is not very reassuring to hear this, it allows me to look at the procedure in a way where I know complications are possible. I have some symptoms, but not as bad as the post-operative symptoms you have described. What were your symptoms like prior to closure? How big was your hole?

I agree through, everyone’s bodies are different in a multitude of ways and reactions of this nature are always possible. I am in the United States and may wait a little longer to have this knowing the recovery may be longer than I had previously anticipated. I’m attempting to finish up my masters graduate program and apply to medical school. While my current symptoms somewhat hinder my ability to deal with my course load, I believe having this procedure may side line he for longer. Hell, I don’t even know if I am a good candidate for the anplatzer patch or need OHS yet haha just know you will find answers and it will get better! This is just a hurdle and even if the device fails, which is very rare, there are other routes of closure, while longer, that may alleviate the symptoms and give you back the quality of life you deserve!

Hi @cecilan1, I know it has been a while, so how are you feeling now? Have you had the chance to meet with your cardiologist to determine if you are okay for the Amplatzer procedure or if the OHS may be preferable? We would love to hear an update!

EDIT- And here is an older thread that may be of interest to you: Can you give me advice about recovery after ASD closure?

This is indeed a tough decision for you @cecilan1 , and hopefully you are able to make the most informed decision possible!

Best wishes,
-Arjuna from Modsupport

Hello @Leanne, I am very sorry to hear that you are going through this post-op. Have you felt any better lately by some chance? Here is a previous thread that you may have seen: Young and scared

As you said, it seems to work for some and not others, hopefully it eases up soon for you! Wishing you the best- we would love to hear from you.

-Arjuna from ModSupport