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

My ASD closure...looking for some comfort/reassuring

So I am 38/m went in for normal check up. No health issues PC decided to do ECG which was abnormal reffered me to a cardiologist cardiologist did another ECG and ultrasound of my heart. Cardiologist suspected I had ASD. Then went to hospital for transopfegeal camera which confirmed ASD. The next week (2/13) had catheter closure thru my groin with amplatzer device. I am home now on plavix and aspirin. Having so inconsistent flutters which are strange but they monitored and doc said looked ok nothing to worry about. I am very sore muscles hurt all over feel like I have the flu. I have read some things about the amplatzer device corroding or breaking down and that makes me very nervous that I now have this thing in my heart. Doctor seems like it’s no big deal but I guess I am just having allot of anxiety. Any advice or people who went through similar experience? Just hoping to get back to life. I didn’t have any symptoms before ASD was discovered although I have always tired easily.

Hi Kevin,
I know that feeling of being young (I’m 46) and healthy and suddenly bam “you have a heart issue” as I just lived it.
I was having heartburn that was unusual when they did an ultrasound and found mine. I too was tired all the time with mild shortness of breath I thought was aging and weight.
I had surgery vs device to close the ASD because I was afraid of potential side effects of having the device. I’m glad I did because my ASD was too large for the device anyway despite two of three MDs saying it was 1 cm (it was 1.8). I had my surgery 5.5 weeks ago.
As for you, perhaps it’s anxiety, perhaps not. Unfortunately I have found that sometimes you have to be persistent with doctors. Really push them to listen to your symptoms. My advice is that if you don’t think something is right and your cardiac surgeon isn’t listening to you, seek the opinions of your cardiologist and/or primary care doctor. I had to do that last night with a minor issue I had post surgery (seroma - fluid sac). I got heard finally today after consulting with my primary care doctor.
Above all, take care of you. It’s really important.
Tammy

Kevin, I posted Jan. 10 about my amplatzer. It worked well for a year. I was told that it would scar over after a year and I’d be back to normal. Fifteen months later I experienced terrible vertigo before passing out. My amplatzer had slipped at some point causing bleeding that filled the pericardial sac and squeezed the heart, making it difficult to pump. The right ventricle collapsed. Long story, but I was rushed to a large hospital that does heart surgeries and they did a pericardial window to drain blood in the sac and saved my life. I was in ICU for 8 days. Got to come home after ten and was home for two weeks to recover before they did open heart surgery to remove the amplatzer. I’m 72, so they did an angiogram to see if I’d need a bypass too. I didn’t … in fact, they say I do NOT have heart disease and my heart is strong. Just had the ASD that decided to get larger at some time in my late 60’s. For a few years they thought my low oxygen level was a lung problem, but it wasn’t. I wish I’d studied up on amplatzer’s before getting one. Mine is gone, gone, gone and replaced by a permanent bovine patch. Checking on You Tube I found other videos of surgeries to remove amplatzer’s that caused other people problems. Maybe some do well, but mine didn’t. One person on You Tube had hers in for nine years before it had to come out. She’s doing fine after a bovine patch like I had. Best of luck. Stay alert to problems and keep a phone handy for 911.

Kevin - I had an ASD closure using same procedure in Oct 2017. Am doing great and hope you will do well also.
Regarding how you are feeling, Can only speak from my experience but I did not do well with blood thinners. Started with Eliquis and had such a bad reaction to it that within 24hrs thought I would have to go to the ER…stopped taking it and felt much better. Doc switched me to Plavix (Doc also put me on blood pressure med), better but could always tell that my body did not agree with it. I found that when using Plavix, there could be some pretty negative reactions to things one would not give a second thought to, i.e., a multi-vitamin made me feel like hell and chest pains…stopped the vitamin and felt better. Still had some chest pains and at time felt pretty rough though. Also, the blood pressure med lowered my heart rate and blood pressure so much that at times I felt I was going to pass, out so would have to get up and start moving briskly and was better. Doc took me off it.
Anyway, all that to say that you may be feeling poorly because of something interacting negatively with the Plavix. I took the Plavix for 6 months post op. Within a week of stopping I felt really good. I know that blood clots are serious stuff and it’s critical to prevent them so I soldiered on thru the Plavix but, was I glad when the Doc said I could stop taking it! Only use low dose aspirin now.
Wishing you a good recovery and a strong healthy heart!!
JJ

1 Like

Hi Kevin,

Don’t worry about your life after ASD closure. I did my ASD closure in 2009 and this year is my 10th years anniversary. My ASD was 2.6 cm which is very big. Now my stamina is much better than last time, just feel a bit discomfort with heart sometimes. I also have a friend who has same age and did ASD closure in 2002. She is still fine too.

1 Like

I had it done in 2013 and for me the Doc said it was a perfect hole! So I really did not have any issues, after couple of years I stopped plavix (that’s a killer by itself). Had slight flutters initial year but after that it’s all fine and back to my full routine. Take care of your groin area, that’s key and be aware of changes to heart beats/breathing etc…else you should be good

1 Like

I am doing a little better every day. Had a follow up appointment with my cardiologist today they did an EKG and said it looked good. I have a follow-up with the surgeon in about two weeks in which they are doing a ultrasound and a bubble study. I feel allot better than I did the first 2 days after in which I felt like I had the flu. There is a wicked bruise on my groin but Dr said it’s ok. Thanks everyone I am glad I found this site.

Hi Kevin,

I’m so glad to read that you’re feeling better and everything looks good. I was recently diagnosed with ASD at 34, and am super anxious. I have to schedule my ASD closure and reading success stories like yours make me feel so much better. Like you, I had no symptoms before discovering the defect. I was wondering how you’re feeling now. I guess I’m just looking for some reassurance that everything will turn out okay.

I’m doing good. Back to normal life. No issues. The plavix or clopidigrel they have me on causes me to bruise easily and I’ve had a couple nosebleeds and cuts that do not stop bleeding easily. I really want to get off that medicine. Supposed to be 6 months on it. My ASD closure was February 13th so hopefully off it in August. Overall though I’ve never felt better. I hope everything works out well for you.

Hey guys, my name is Scott. I just had my ASD Closure done about 2 months ago. I too had bad flutters for about a month. They progressively got better and now have almost gone away completely. My ASD was found after I got a blood clot that went to my kidney. The blood clot was unfortunate. However, it allowed me to find my ASD. So, for that I’m grateful. Hang in there Kevin. I too feel like there are so many uncertainties. I feel like there are so many unknowns. I’m just trying to take it one day at a time.

It’s wonderful to read everyones positive experiences and gives me a lot of hope. My ASD is scheduled for this Monday. I’m nervous but also kind of relieved that I’ll be past this. How long would you say it took to get back into routine?

Hi all, I’m 18 days in with the Amplatzer occluder insert/patch. I had the procedure on a Thursday and went back to work on the next Monday just moping around really not doing much, but getting paid nonetheless. Doc stressed to me not to strain of which I’m following that advice to the tee. I feel relatively good even taking Plavix. I’ve had a couple lousy days, but nothing overly noteworthy. I attribute those lousy days to my body getting accustomed to the Plavix. I recall the Saturday after the procedure I felt like there was a pinching in my chest on and off for about an hour, but nothing since then. I was definitely concerned, so I shut it down for the night that night. I go back for my follow up this Thursday, 3 full weeks post op and I have questions for the doctor I trust he can answer like how big was my flappy hole? I never did ask nor did I even think to ask. I dunno? I trust in God and am grateful for my wife for her support and other friends and family. Stepping off my soap box now:)

Well, I’ve surpassed the 1 month mark since my PFO closure and I’m happy to report all systems GO! My doctor has cleared me to do anything again. I work for a drywall company and deliver sheetrock and building materials most days. Doctor says the Amplatzer device has already begun to epithelioize and will continue to do so until there’s a complete wall in between chambers of upper heart. Otherwise, I feel fine-thank GOD.

Congratulations! That’s so great! I had my ASD closure a week ago through catheder (it ended up getting delayed for certain reasons), and today was my first follow up. The doctor said everything looks great and I should lay off the gym till at least 3 months after, but other than that resume normal life. I’m a mother of two kids under the age of 4, which means being on my toes all day. The first two days after the closure, I was feeling palpitations on and off which made me feel a bit uneasy, but thankfully, they’re beginning to wear off. Other than feeling a bit dizzy at times, and having the constant fear that somehow I might accidentally get hit on the chest by one of my kids, I feel normal and optimistic.