Rules

posting

by new to pace.... - 2024-10-06 22:09:34

If you look at your profile.  scroll to the bottom it shows all your former posts.  You can then look to see what you wrote and then the comments that were made on them. 

new to pace

New to pace

by Babesmom - 2024-10-06 22:15:12

Thanks 

That was very helpful 

I love helpfulness instead of criticism 

I never knew I could do that

Thanks again

It takes time to find our way around this site

by Gemita - 2024-10-07 02:33:15

Babesmom, rules for posting can be found under Club-Terms of Use-Your conduct.   

We all try to help each other here and to be tolerant.  The important rule that we have in place is to avoid making offensive remarks to another member and causing upset.  This would never be tolerated, nor will posting spam to the new message board.  

I noticed that you posted an identical message simultaneously yesterday, so I removed one copy, to avoid duplication of responses, but I see you have removed the other copy now which was answered by one of our members who clearly seemed to cause some upset. 

No one is reprimanding you.  From what I recall, you continue to ask the same question about when your breathlessness will ease? You do this regularly each week, or even each half week.  

We can never replace the advice from your doctors and have tried to tell you to go back to them while your symptoms are so intolerable.  They should be able to make you more comfortable.  I don’t know what else we can tell you, to help you?  Clearly you are not satisfied with our answers and are getting anxious and frustrated about your continuing symptoms.   With respect there is nothing more we can do to help except to continue to encourage you to “keep taking this problem back to your heart team”.  We cannot treat your symptoms but your heart team may be able to and to make you feel more comfortable.

i am sorry if you feel you have been criticised.  Perhaps like you we may be getting frustrated that no improvement of your symptoms has been seen.  I am glad you have told us about your feelings.  It is a learning process commenting on a forum.  I remember I was very sensitive when I first started posting, but most members here are kind, caring and patient.  The member who answered your post, now deleted, is one of the kindest members I know and she would never knowingly cause offence.

So there are few rules other than not making offensive remarks to another member or posting spam.  As one of the moderators here, I try to keep the forum a clean and a safe place but if anyone encounters open hostility I will always try to intervene.  However, on this occasion, I did not see any hostility 

Rules

by piglet22 - 2024-10-07 05:47:45

Simple. Be nice to complete strangers, though you will get to know them, don't say something you wouldn't say face to face.

Be tolerant of cultural differences and attitudes.

There are forums that are free for all where people use the cover of anonyminity say what they like.

This isn't one of them. It's a place where you can come and get answers to problems that reflect real experiences and advice that you won't get anywhere else.

I could count on the fingers of one hand the number of times the clinical professionals have had time to tell me about my condition and I have learnt more here than anywhere else.

People are genuinely concerned about your worries and will try to help.

Gemita

by Babesmom - 2024-10-07 17:48:53

I highly apologize for posting the same question more than once.

I am 70 and forget what I have posted.

I will refrain from posting any longer as this is causing upset.

Because of a kind member I now know where to look at what I have posted.

Again I highly apologize for upsetting members

Babesmom

by Gemita - 2024-10-07 18:13:15

You are not causing upset to other members.  We are frustrated that we cannot help you and want you to be well.  There is absolutely no need to apologise or to stop posting.  That is not the answer either.  We certainly don't want to push you away.

All I would ask is that if your symptoms are difficult to tolerate at any time, please do not hesitate to go back to your doctors.  You shouldn't have to suffer in silence.  Only you will know what you can and cannot tolerate and breathing distress can be frightening to live with.

From your history though, you clearly have ectopic beats and as an ectopic beat sufferer, I know how many difficult symptoms they can cause when they last for long periods.  

I hope you will post again soon on any subject you wish

Hi

by Lavender - 2024-10-07 19:12:24

You haven't upset anyone. Your posts of breathlessness concern me. It's a long time to be feeling that way. The advice given was strongly saying that if you're not satisfied with what your medical team says, then go back. Talk to your pcp, your EP, your cardiologist and see if anything more can be done. You're welcome aboard but if you were my sister and I heard you saying this... I would go with you for help. It's hard watching someone suffer for weeks with no resolution. We are trying to listen and help. 

Others gave you similar advice :

If you still have air hunger after the PM implantation then it's not doing its job

by crustyg - 2024-09-28 02:26:56

The whole point of a PM for folk with air-hunger (==lack of oxygenated blood to muscles that need it) is to increase the delivery of oxygenated blood to working muscles.  Many (most?) of us feel air-hunger when heart output isn't adequate for our exercise needs, whether that's climbing a single flight of stairs at home, or cycling up a mountain.

Depending on the intensity of exercise where you still experience 'breathlessness' - or air hunger - your device should have fixed most or all of that immediately.  Myself: implanted on Wed, out on road-bike on Sunday and could feel much better exercise tolerance - and I wasn't out of breath at the top of our stairs at home.  More intense exercise will require some time post implantation before your PM can be fully adjusted to your needs, so some delay is to be expected as others have advised.

We're of an age, so our expectations shouldn't be that far apart.  Go back to your EP-team and tell them about your air-hunger.  I think your device isn't doing what it should.

From Gemita:

If however your breathlessness is not well tolerated, please do let your doctors know immediately in case it needs to be managed more effectively or further tests need to be carried out.  I hope things improve quickly for you