Cold hands and feet - any answers?

[Keyhole]

Atrial septal defect- My 26 year old Son had a successful operation 4 months ago to close a previously unknown 2cm congenital heart defect. He previously suffered a stroke which thankfully left no lasting damage. Tests then revealed the heart defect that had now been treated by a wonderful surgeon at St Barts. In recent weeks after returning to exercise he is experiencing cold hands and feet. Would you please advise if you have any thoughts/ insights that may help us to understand this.

[Celtic]

Have they put him on a Beta Blocker recently - they are notorious for causing cold extremities?

[Keyhole in reply to Celtic]

No but thank you for the reply!

[Celtic in reply to Keyhole]

Sounds like a question for the cardiologist then but best wishes for his continued good health.

[Keyhole in reply to Celtic]

Thank you!

[Heythrop51]

Although he is not on a beta blocker is he on any other medication or have any other underlying medical issues?

[Keyhole in reply to Heythrop51]

No medications now, nothing that we know of. But then for 26 years we did not know about his heart condition. It’s been a terrible shock, very worrying! Thank you for taking the time to reply.

[Hidden]

Hi Keyhole. I had an ASD closed by open heart surgery about a year ago.

If your son’s was also open heart, maybe it’s just taking a while for the heart to “re-model” itself, which I believe takes 6-12 months. During that time, I found many aspects of my circulation & heart were a bit “odd” eg I got flutters, strange aches & pains. If it was catheter, I’m unsure, but imagine remodelling still occurs. Maybe his new-structure heart is learning to deal with pumping blood around the whole body during exercise, and has to do it differently than before.

How is his blood pressure? Does he ever get dizzy? I found I had to really focus on drinking water, as being dehydrated made it much harder for heart to cope. And it’s easier to be dehydrated than not, I think.

Is he warming up and cooling down ? My heart didn’t like it if I went straight into exercise. And if the heart doesn’t have a chance to slow it’s pumping before exercise stops, I imagine blood rushes everywhere in strange ways. Time for heart to adjust, both sides, is now really important.

I’ve had a tendency to feel cold ever since I lost a lot of weight 15 years ago. Post op, I still get cold feet at night. And I tend to wear gloves till about May/June anyway !!

But given your son’s is since surgery, and you think is related to exercise, I’d ask the cardio team. If his, or your, instinct is that something’s wrong, learn to trust that and phone your cardio specialist nurse team?

Hope his recovery goes well.

[Keyhole in reply to Hidden]

Thank you so much! This is incredibly helpful! There are a few things to consider here. Hydration, whilst simple, is something that we all fail to notice. My Son managed to avoid open heart surgery, even after the first attempt failed, he was able to have the closure done via keyhole. He does have another anatomical variant that came to light from the stroke, artery of Percheron, only one artery enters the back of the brain, unlike the rest of us who have 2. This contributed to the stroke.

There are some very straight forward suggestions that I can share with him from your reply.

Thank you!!!

The consultant was not overly concerned today, I’m his Mother and will naturally worry!

Much appreciated! Christie

[Amy615 in reply to Hidden]

Hey..how you doing..hope all is well at your end..just seeing ur post i thought u cud give good advice fr me..i receny had asd closure through catheter process and need some after care tips on health n lifestyle..if you do not mind sharing urs..

[DD13]

Is he on aspirin or blood thinners? They might make him cold? I have raynauds, has he noticed if fingers and toes go white?

[Keyhole in reply to DD13]

He has been on them for 6 months, recently stopped. Thank you for taking the time to respond, all things to consider! Best Regards Christie

[shwills]

If he is on any blood thinners he will probably have cold hands and feet

I am on Warfarin and always have cold hands and feet

[Keyhole in reply to shwills]

Thank you for the advice. Best Regards Christie

[Hidden]

PS Christie, if his hands/feet look blue at any point, I guess that would be important to talk again with doc.

To give you a laugh maybe - I can’t keep a straight face, if I get a hospital letter where the Doc puts something like “Ms X is pink & well perfused” ..... it’s a good sign I know, but really.. 😉

[Keyhole in reply to Hidden]

Thank you again, no blueness in the feet, though I have asked him to look out for changes ! You know in these worrying times, we have to find things to smile about. Thanks again. Christie

[Rainbow619]

I also have atrial septal defect and am waiting for the operation to close the hole, but have no idea when that will be now. I already always have cold hands and feet and for some reason my right hand is always worse. I have been wondering if it is because of my hole in my heart. How long did it take your son to recover from his operation, if you don’t mind me asking? 🌈

[Amy615 in reply to Rainbow619]

Hi there..i jst read ur problem..i too had been diagnosed with asd..n i could nt wait any more...any problem arose..i thought its the heart..so i got non invasive procedure done jst a few days back..nw am back home..recuperating..do share ur experince too..take care

[Amy615]

Hi there..

Hope a is well at your end...i do not know how much help i will to u..but all will be fine..i also was detected with asd at age of 37...it was a nighmarish shock for me n my family..i had no clue at all..i hv a 4 year old son after whom i had 2 run whole day...n 1 fine day..dis diagnosis..i just hd a catheter procedure..n ever since started on blood thinners ..n strangely have started 2 feel cold..shivery hands n legs..may b dats what it does 2 the body...more ppl share their experinces the better it wil b fr us...take care