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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

Young and scared

Hi! My name is Gabby. I am 24 years old and had my PFO closed May 2017. I was diagnosed back when I was 21 years old, went to several doctors and cardiologist for them to call me crazy and nothing is wrong. Pretty much I have been through hell and back. And finally met my wonderful cardiologist. As soon as I met her we got going with the surgery ASAP. I guess you can say everything went well during surgery. A week later, I woke up in the worst pain of my life. I couldn’t breathe, talk, move, nothing. I had to crawl to my dad pull on his shirt and tried rush me to the ER something dramatically is wrong. After being there for a bit they admitted me. Long story short they found fluid in my stomach and all around. I bled 6 liters of blood. When they did my surgery they went through my groin and one of the doctors must of nicked me somewhere. Now its been a few months, I still don’t feel better like the doctors said I would be. I cannot lose weight, I’ve gained weight. I’m a super active person too. I have these auras were I literally cannot see and it seems “fuzzy” or you are watching “white noise TV”. It’s ruining my life, I’m going to be a teacher in a month and I cannot deal with this. These auras aren’t followed by a migraine, but I recenetly got an apple watch to track my HR and when this happened the other day it went from a 124 to a 66 BPM and it was going up and down like that for a while. Following feeling almost like I was hungover and a really foggy and dizzy feeling. I don’t know what to do anymore. Nothing is helping me… Someone please help or lead me to some advice. I would really appericate that.

GabZach, welcome to the Atrialseptaldefectsupport community. We’re glad that you found us, but so sorry about what you are going through. This really isn’t good, is it?

The doctors said that you should be feeling better by about now, but it sounds like you are aren’t better at all. I think you need to go back to those doctors ASAP and get some answers.

How soon do you think they might be able to see you? If you’re really worried (and it sounds like you are) maybe a trip to urgent care or to the ER would be in order.

Let us know how you’re getting along.

Seenie from Moderator Support

GabZach,

For me, the recovery process was much longer than all the doctors predicted. The auras are common after ASD closure, many times with migraines as well. These do improve over time for most people. It took ~ 6-12 months before I felt back to “normal” (no more migraines/auras, shortness of breath, fatigue, etc.) I was very active prior to my surgery (running 1/2 marathons, weight training, etc.), and I did not get back to cardio shape and run a half-marathon until ~ 12 months after surgery. It was a slow road!! Also, the weight gain also seems to be common. There are others on the forum that have also had this issue. I agree that is is much harder than it used to be for me to lose weight.

I have learned from this forum that many people have many of these same problems after surgery, and the road to recovery can be slower than what doctors predict. I was also found to be allergic to Nickel and had prolonged symptoms from the device due to this allergy. My cardiologist has been wonderful and has learned with me due to my struggles. My cardiologist now thinks he has another patient with symptoms from Nickel allergy and their device, due to my situation and recovery.

Good luck and hang in there! I know it can be frustrating as I have been in your shoes, but for most people, the symptoms decrease over time. The only option is to have the device removed through open-heart surgery and have the ASD surgically closed. This is not a great option either. I opted to wait it out for at least 12 months before I chose the device removal route. I am glad I waited and made it back to pretty much baseline. Good luck!

-Katie

Hi Katie, how did you remove your device, minimilly invasive or down the sternum . Am planning on taking mine out too, because of the persistent migraines, ive done similar research and it points to nickel allergy . Please let me know how the surgery went and how your recovery was, it will help me a lot. Thanks

I did not have mine removed. My symptoms improved over time and resolved by ~ 9-12 months. Once the device epithelializes, which takes almost a year in some patients, nickel levels usually drop and symptoms improve in most people. this is what happened for me. I toughed it out through ~9 months and was pretty much back to normal by 12 months. I chose waiting rather than open heart surgery (down the sternum). One hear surgery has a long recovery and many risks. I am glad I waited it out.

Okay, thanks
Ive been having migraines for over wight years now
so am gnna take out the device soon

Hi @aenceledus and @Frustrated , I know it has been a very long time since you have shared your stories, and we have a new member @Leanne who is currently dealing with a lot of discomfort after her procedure, and it would be refreshing to hear an update from either of you. I understand both of you decided to go in different directions with regards to keeping the device or removing it- @Leanne would appreciate any insights you may have!

And @Leanne, please feel free to take it from here!

-Arjuna from ModSupport

Thank you. Taking things day by day and back to work even though I’m still signed off until end September. I have had my medication changed from clodiogrel as that was causing some symptoms and also the stomach tablets changed. Still get chest pains left side and body aching but not as much. Review in 3 months time.

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Hi Gabby,

My name is Natalia. I had ASD about 5 years ago roughly. I am so sorry to hear about all your complications. My heart goes out to you. What struck me in your letter is that I too get Auras all the time but do not get a migraine. My cardiologist says he does not know what causes this. I have always wondered if anyone else gets them. You are the first person. What does your cardiologist say. I would go back to the dr. Please get keep me posted.

Natalia

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I am glad you are coping through this @Leanne, and found substitutes for your meds to better your circumstances. It’s amazing to hear that the body aches have reduced in intensity, we are all eager to hear how you are feeling in the next few weeks/months, and are rooting for you.

All the best,
-Arjuna from ModSupport