How can a loved one best help someone with BAV in the waiting room?

[anne casey]

What advice can you give a loved one from your experience? What did your loved one do or say that helped you as the patient? what did they do or say that didn't help? I try not to talk about it unless my son brings it up first, but I don't want to seem like I'm ignoring it. Although lately, he gets nagged on 'how you feelin?' Along with 'any pains, shortness of breath....tell me if you notice anything different....'

I know everyone is different on how they handle things or what kind of things people say that helps them...but just looking for some ideas.
Thanks.

 

[Eva]

I am the type I share how I feel, yet I'm stubborn when I need to do something and I get carried away overdoing things. So, I asked my sister and my hubby to remind me to take it easy. Before my surgery, My emotions blinded me from seeing my symptoms! So, it is good to share with loved ones and ask them to pay attention to any difference they see in you that you may not notice yourself!

 

[ski girl]

Personally I HATED it when people asked me about my upcoming surgery, or treated me like I was different/special or expressed any pity towards me. I wasn't going to die, I was going to have surgery that would make me better! So I would say - treat him like he is a totally normal kid of whatever age he is. But maybe make sure he knows that if he does want to talk about it, you're more than willing to listen.

You want him to go into this surgery in a positive frame of mind, looking forward to the improvements he'll see - so maybe ask him what he wants to do with his fixed heart? Play a sport, run a half marathon, climb Everest . . . .

And to be honest - I think this is just as difficult, if not more so, for the loved ones of the person going through OHS!! So make sure you have someone to talk to as well.

 

[MrsBray]

My father wanted clarification on what was going to happen, and then he focused on what was possible AFTER the surgery when I was recovered - long walks in the park, kayaking, rollercoasters He was the only person in my "recovery team" that was looking forward to the good stuff. That was a HUGE relief for me. He also read the "Coping with heart Surgery: Bypassing Depression" book. He's been my biggest cheerleader through this event.

 

[Blair]

I have been very appreciative of just about all the comments and questions I've received. "How ya doing, praying for you, what's the next step, when is your surgery, my cousin has a mechanical valve." All of that is good for me. I agree with ski girl on not wanting to be being treated different/special or having pity. The WORST thing for me is not saying anything. The elephant in the room thing. Don't ignore it or pretend it's not there. I mostly get that from young people. I think they just don't know what to say, so they keep quiet.

One thing that I haven't gotten, and would really like, is for someone to say they will walk with me when I get home. I may not need or want that when the time comes, but right now I would like to hear it. Of course, people not familiar with this are probably not aware that walking is part of recovery.

Has he checked out this site? This has been great for me!

 

[Mentu]

Anne, I can only speak for myself. The most comforting people to be around as I grew more ill were those that did not nag or try to be consoling. The best were those who were willing to listen when I needed to talk and made it a point to call or stop by just to chat and sometimes take me out to supper if I was feeling up to it. I would say that being open to your son when he needs to talk and trying to maintain as normal a routine as possible is a good start. My own Mother was very irritating in the months before the AVR and always steered the conversation to how awful it made her feel to think about my surgery. Let your son know how you feel then leave the drama aside.

Larry

 

[traveler]

I think just being there -- all the time. I think for many people this is not as big a thing as it was for me. We were high school sweet hearts and have been married 39 years and have rarely been apart. Just being there - at the appt's, in the hospital, after surgery, while I slept - made all the difference.

 

[knotguilty]

In my opinion, I think the only way to help is a possitive attitude. Let him know what he will be able to do once he is back on his feet. Be there to listen to his fears and encourage him that he will be fine. I know my doctor told me I would probably be surprised as to what I will be able to do in time, and boy was he right. I am better than before and your son will be too. Lots of hugs never hurt either when he feels down.

 

[knotguilty]

In my opinion, I think the only way to help is a possitive attitude. Let him know what he will be able to do once he is back on his feet. Be there to listen to his fears and encourage him that he will be fine. I know my doctor told me I would probably be surprised as to what I will be able to do in time, and boy was he right. I am better than before and your son will be too. Lots of hugs never hurt either when he feels down.