You asked for it...

[Gnusgal]

But, Monty, that's just it. I HAVEN'T just had surgery. My valve replacement was two and a half years ago. I went through rehab and had my stamina back for quite some time! I'm just on a downward spiral again. And this time valves are the least of my problems. I know this isn't a board about transplant, but all the transplant boards don't really apply to me very well either...

Marilyn, I wish I could blame it all on my pacemaker (and the most recent attempt may be able to be partially blamed on the EP doc turning on the "rate responsive" feature. Something I plan on getting turned off ASAP!), but I never had a problem with my pacer settings and sex prior to about two months ago. And no reprogramming had taken place. So I don't see how that could be the culprit.

Cort, sorry to bring up a tough subject. There's still nursing school.

Betty, I had planned on trying to talk to my card about it when I talked to her about my PFT results. But I still haven't heard back from her about those... Guess it will be next week? I'll try calling Monday for certain. It's an awful awkward subject to bring up, even with a gyno, much less a pedi card! Besides, I probably already know what she's going to say. She'll say I should ask one of my other two cardiologists. But she's the one that I feel most comfortable talking to out of the three... Oh, well. We shall see...

Thanks again everyone for all of your support and encouragement. I'm still feeling kind of alone in my troubles, but maybe others are just to shy to speak up?

 

[Guest]

Cort, sorry to bring up a tough subject. There's still nursing school.

*grins*

Yeah, I know....

*sighs*

No worries, too. It's just been a rough week...and, well, being reminded of what I don't have tonight didn't help much...heh.

But, it'll be just fine .

 

[Debrinha GT]

I guess I'm lucky!LOL!!

I guess I'm lucky!LOL!!

Hi there everybody, as most of you already know I've had three MVR(repacements), but I must say that I've never really had much trouble regarding the sex ussue. Well, my sex life started at the age of 19 and by that time I'd already been through the first two surgeries. Anyway, so that you can have an idea of what I'm talking about, even on the day before my last operation I managed to have a good time!!LOL!! , no further details available though!! My problem has been my daughter who just won't let up, I mean, she's everywhere at the same time and goes to bed awful late. By that time, I'm tired myself and just not in the mood for anything! . What advice can you give me there????!!!! And to make matters worse, our school holidays should start in a few weeks since it's coming up for summer here.

Débora from Brazil

 

[Gnusgal]

being reminded of what I don't have tonight didn't help much...heh.

If it helps, I didn't get any either...

 

[Ross]

If it helps, I didn't get any either...

I needn't explain myself again, same answer.

 

[Harrybaby666]

Me Neither....

Me Neither....

I would be too nervous to try it, as my symptoms get really bad, and considering the fact that I have not had any surgery yet...not to mention the fact that I wouldn't want to scare the H#$! out of my partner....Another reason I am still single....BELIEVE ME NIKI, YOU ARE NOT ALONE. Harrybaby

 

[Guest]

If it helps, I didn't get any either...

*grins shyly*

*ponders*

No...sadly, that doesn't help all that much.... .

 

[M&M]

Hi gnusgal, Your first post I read to my husband and we just 'laughed' mainly because I complained about the same 'feature' program on my pacemaker regarding the rate response. I could not hit a bump in the road and I couldn't breath. I had them turn it off the next day. I told my EP - hey sometimes 'more' is not better. I can't breath when I drive and hit a bump in the road. I'm coming to the ER if you can't see me.. I can't breath.. too many 'beats'.. Luckily, he said - come on in - so I came into the EP office and they turned the rate response 'sensor' feature off and its been much better. Not perfect - but I couldn't take having that feature 'on'. Now its just a matter of getting to 'excited' when I can't breath. At least I can drive and hit bumps in the road..

I know I had trouble shortly after having my pacemaker turned on when it came to breathing during sex. I'm sorry I can't convince you more on this - but when I read your post - it just reminded me of my situation. "Enthusiasm" and "excitement" can cause breathing problems no matter what your doing if your exerting yourself.

Some models don't have that 'enthusiasm' for SEX feature.. This is rather embarassing to say but : I try not to get tooo excited during sex - and then I can BREATH..

Good Luck
Marilyn (runner)

 

[tobagotwo]

Niki, that's just a bad place to be in. I feel bad for you both.

I don't have any answers, but Betty's nitro idea sounds like it might relight the candles. Clever idea. A heart patient's unisex Viagra.

I wish you better luck with this in future.

 

[Harpoon]

Things do get better after surgery.


My wife and I all but stopped several months prior to my valve replacement. I just couldn't do anything any more without coughing really hard and the last two months I was so miserable all the time I just couldn't get my head off of what was happening to me.


It's an important part of your relationship and it needs to be taken care of just like everything else that's going on. Talk to your cardiologist, maybe with your partner in the room.

You might also try looking for some "side avenues" if the main event isn't really an option. Outside of general intercourse (there, I've said it, you happy? )

Massage is probably the best recommendation. it may be a little much for you to do anything other than some light work, but there's no reason why he couldn't give you a nice rub down...

Get some decent oils, Bath&Body Works is a favorite store of ours that we have to fight the urge to enter when we're in the mall...

You can also order a lot on-line from various places, as well as getting books on a variety of techniques for all kinds of levels (and applications.........)


What's important above all esle is that the two of you sit down and talk and understand that, for the moment, you can't perform the way you'd like to, the way you want to, the way you NEED to and that's not going to change until you're heart improves.

Your heart WILL improve (positive attitude is everything) and when you're better, you'll be making up for lost time..............



Yeah, trailing off a lot here is nice............



It's hard, I know, I've been there. Sometimes I'm STILL there, but I know that things get better and it just takes some patience and maybe a little creativity now and then.

And on a side bonus, a little creativity now and then, especially when you've got real incentive to look for that variety, helps out in the long run anyways.


I won't say any more, there's a few "secrets" I care not to divulge...



insert VERY sly grinz here...

 

[Gnusgal]

Hi gnusgal, Your first post I read to my husband and we just 'laughed' mainly because I complained about the same 'feature' program on my pacemaker regarding the rate response. I could not hit a bump in the road and I couldn't breath. I had them turn it off the next day.

Oh, you better believe the very first call my EP will be getting on Monday morning will be from me (if I don't give up and go to the ER tomorrow)! I thought I'd try to give it a chance and see if it was just a matter of getting used to it... It's not! How could anyone have ever thought that rate responsive feature was a good idea is beyond me.

I know I had trouble shortly after having my pacemaker turned on when it came to breathing during sex. I'm sorry I can't convince you more on this - but when I read your post - it just reminded me of my situation. "Enthusiasm" and "excitement" can cause breathing problems no matter what your doing if your exerting yourself.

I've had my pacemaker since I was seven years old. I've never had sex without it... I don't know how my pacemaker could really have anything to do with my current problems, since no changes were made prior to the difficulties starting. I do agree that I need to work on my breathing, though. And that's something I've been trying. I've been trying to take slower, deeper breaths, but it only helps for so long...

Thanks again for all of your comments. I'm sure that things will be at least somewhat better when I get the rate responsive feature turned off, but I know that I was having problems even before that was turned on... Guess I need to start working on all those "alternatives" people keep suggesting.

I really do appreciate everyone's support and suggestions, but I want to remind you that I am TWO YEARS POST valve surgery. This is not something that is going to go away "once I have surgery" because there won't be any surgery. I wish I had surgery to look forward to, so I could feel better, but I don't. Instead I have several years of feeling worse and worse until I'm finally deemed "bad" enough to go on a transplant list. That's the other reason this is so frustrating... It's only going to get worse, not better, until I can finally get a new heart (whenever that may be).

I do plan to talk to my cardiologist, but I have little hope of her being able to do anything for me. It looks like we may be having "alternative relations" for the next several years. Boy, howdy, he better watch out when I get my new heart!

*To any of you who are pre-surgery, please realize that my situation is VERY unique because of my complex congenital heart defects, so don't start getting worried!

 

[Guest]

I've never had sex without it...

*grins slyly*

Sounds like an advertising slogan for a pacemaker, if you ask me. I can just see the advertisement now. Can't you?

"Get a pacemaker to help your heart out. And never have sex without it."

*shakes head and groans*

Yeah, I know...bad, very bad.

 

[Harpoon]

Sorry, I keep forgetting you're post-op a few times over and have a pacer....

 

[Abbanabba]

Thanks, Anna, for letting me know I'm not alone. It's hard to think that people as young as we are have to deal with this. But what frustrates me so much is that our partners are healthy (at least, I assume yours is) and have to put up with it too! But they sure are troopers! Thanks, also, for the suggestions for alternatives to sex.

Yes, the boy is hale and hearty and I feel incredibly lucky to have someone so understanding and accommodating (..he's even very supportive of my not having been able to work for the last year..). I really belive the measures we take to keep the intimacy in our relationship is what keeps us both sane... although (..to echo Cort..) the massages do sometimes get a bit out of control

(....moving right along...)

I also really feel your frustration with not knowing when you will be feeling better again. I think this is probably the hardest thing I'm dealing with at the moment; because no-one can tell me what's wrong, I can't "put up with it until it gets better" because I don't know when that will be. If you knew it was only going to be that way for another 2 months, or even another 2 years, at least it would give you a timeframe to work around. I hate the intangibles!!


Meanwhile, even though the boy and I were in a lovely Melbourne hotel on Friday night, we didn't get any either!! Maybe because this was a "medical" trip and a spa wasn't in the budget.

A : )