Quantcast

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

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


Virus-free. www.avg.com

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 ?


Virus-free. www.avg.com

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

Hello

I am now back in work and had good days and bad days. They have changed my stomach pills and the blood thinning tablets from the clopidogrel to something else and it made the symptoms ease off. I still get night time moments where my blood pressure drops and I feel dizzy and spaced out and sick and I still am getting chest pains on the left side when laughing too much or over exhaustion.

Taking each day as it comes, putting on weight also as assuming heart working less and much less activity than before. Trying to eat before 7pm tobstop the acid reflux at night time.

If symptoms continue at 3 month check will review the nickel thing again then, although I’m allergic on the outside he said it might be different instead or could all settle down.

Thank you for asking

1 Like

Wonderful to hear that there has been some improvement Leanne! How nice would it be if it would eventually settle down and go away very soon. Some of your symptoms remind me of @Sarah_UK’s post a while back on this thread: Sudden onset Fatigue after Asd closure. She dealt with symptoms such as fatigue for the three months when she was on clopidogrel, and got much better after she was off of it.

Here is hoping you are 100% very soon Leanne! Please take care of yourself- would love to hear back from you on if the symptoms are improving.

-Arjuna from ModSupport

@Alison1972 has just joined us! After recently being diagnosed, she is awaiting a closure device. Thought this thread started by @cecilan1 would be helpful to you Ali! Please feel free to ask us anything, or expand on your story :slight_smile:

Take care
-Arjuna from ModSupport

First, they should have the plan of when they are doing catheter that they are repairing it same time. Mine was.

Second, I woke up from surgery no longer requiring oxygen full time, full of energy and for first time in my life, my digestive track and lungs felt relaxed.

I was walking the halls unassisted after I past the laying flat on back period (to prevent blood clots).

I am able to have the percutaneous patch closure and not open heart! My appointment was scheduled for October 30th, however I will not be able to have it done then due to family members being it of town, as well as academic obligations. Hoping to reschedule within the next two months and finally have this ASD behind me! Thanks for the responses everyone! I am hoping to feel better and run a marathon within a year of having this done

1 Like

That is wonderful to hear that you have a concrete plan now @cecilan1. It has no doubt been a major burden for you, and we are rooting for you to get that marathon completed! How inspiring would that be… please do keep us posted, would be great to hear your recovery story.

Best of luck @cecilan1, and take good care.

-Arjuna from ModSupport

@cecilan1 Hope all is well with you. I would like to introduce you to one of our new members, @LM26, who has had a percutaneous closure performed after ASD diagnosis, and is now doing great. I figured you may be interested in recovery timelines, as you want to complete a marathon soon! :wink:

Good luck!
-Arjuna from ModSupport

Hi - Happy to answer any questions you may have. I recently (early October) had my approx. 1.5cm ASD closed percutaneously. I found the most challenging things to be (i) nervousness about the procedure itself; and (ii) not exercising after the procedure. I’m now approximately 2+ months post-closure and feeling really well. I’m older than you (40), but I’m back to my pre-closure workout routine, including 45 minutes of weights followed by a 4-5 mile run each day. I’m happy to answer any questions you may have. This site was very helpful to me to understand what to expect as part of the procedure, recovery, etc. So, please feel free to ask. Thanks.

1 Like

@LM26 a 4-5 mile run every day just two months after the procedure!? @cecilan1 would be thrilled to hear that. It is so nice to hear that you’re going strong @LM26. As you may have seen, there have been quite a few threads discussing exercise on here. Here is one that particularly came up to my mind after I saw your profile: Running and working out

Although many of the folks on there had open heart surgery, and hence a different/longer recovery timeline, it will be great to see you contribute to that thread… since you have conquered both running and working out :smiley:

Looking forward to hearing more from you @LM26, and welcome once again to our community!

-Arjuna from ModSupport

Hi cecilan1,
I was recently diagnosed as well. It was known I had it for about 5 years and was told by my cardiologist not to worry about it until this year when problems came up. First test after US found a problem was a TEE. After that, my diagnosis changed to sinus venous ASD and that I needed open heart surgery, that is when they wanted to do a cardio cath.
My cardiologist told me they couldn’t see it through a catheter, so now I am set to do an MRI of my heart for a better look 2 days before surgery.
Best,
James

1 Like

Hello, it’s my 3rd month since the procedure. My asd was 20 cm. I started light workouts 2 weeks ago but petrified thinking it may knockout the device. Does exercising affects the device’s positioning?