Updated News...+ urgent question

Hi all. Further to my "concerned" post yesterday, I have just seen my GP. The good news is that my low BP has actually improved & is now 100/70....much better. However, as the GP says, the BP is probably not the cause of my dizziness (lightheadedness) as it is within the normal range now.

I told him that the cardiac team at the hospital told me to contact them if my dizziness got worse (which it has). My GP has said definately...but first he wants me to have a lot of blood tests this afternoon, to rule out other things first that can cause dizziness. He will get the results tomorrow & if they are all ok, he wants me to contact my cardiac team tomorrow. I am quite happy with all that.

QUESTION......last night, in response to my post yesterday about the dizziness, someone sent me a private message which suggested I should not be on this site as I don't have a pacemaker (yet).

I joined this site in May/June as I was going to have a sinus node modification with a very high pacemaker risk & I wanted to find out as much info as possible about pacemakers etc. It turned out that my EP did an ablation for focal atrial tachycardia instead as, during my EP study, he found I did not have IST after all. After the procedure my EP said my pacemaker risk is low, as he ablated near the sinus node but didn't touch the sinus node itself.

However, I'm not "out of the woods" yet as far as pacemaker risk goes, until I have my 3 month post ablation check up. So I have stayed on this site because there is still a possibility I might end up with a pacemaker.

Also, I've made SO many friends on here that I would be really upset to leave you all. This is the best site I've ever been on. I get lots of help with arrhythmia & ablation queries, as lots of you have been through these things too. I joined some arrhythmia sites in the UK (where I live) but people hardly ever reply. I even tell my friends & family how wonderful this site is & how much support & help I've had from everyone.

So my question is this.....am I still allowed to post on here, without a pacemaker? There are other people like me who join because we might eventually have to get one & it really helps to be in touch with people who have them etc. But I wouldn't want to upset anyone by being on here if I'm not allowed to as I didn't get a pacemaker in July after all.

I think you are all wonderful people & I would be very sad & sorry to leave you all if I have to!

Best wishes
Janey

11 Comments

I needed information!

by #1grandma - 2010-09-21 01:09:01



Hi Janey,
I feel that I am a member of this wonderful club and I have not had my pacemaker installed. This will happen for me on October 12th.. I felt very uneasy about the surgery and I needed help in understanding what to expect. If I had not had the help and understanding of these wonderful people I would have been very worried about what was happening to me. They call PM surgery as minor surgery but I figured that if they are going to put wires into my heart, it was major surgery. I now understand what others went through and I'm aware of things that could happen. Having my questions answered after my surgery would not have helped me.

Thank you to all that have made me feel more at ease and have shown me that they are here for me should I need them.

#1grandma (Sally)



Remain positive

by Nornor - 2010-09-21 07:09:21

Hello Janey

I was saddened to read of the private email you received from a member of this club. Unfortunately, insensitive, thoughtless and rude people exist in all groups within our communities but, fortunately, these are a small minority, whereas 99.9 percent of our members are caring, thoughtful, supportive and loving people. I applaud you for taking a positive role in the management of your well-being by seeking information and support prior to having to make definitive decisions. Rest assured that we, the caring members, are there for you.

Take care. Cheers and best wishes.

Neville

Keep posting!

by Heidiglassmeyer - 2010-09-21 07:09:28

Not sure would send a private message without having the courage to post for all to see. I have recently posted concerns with my symptoms that I thought mat be related to my heart/PM but ended up being a back issue. Although it ended up not being heart but back/nerve issues I was able to receive not only a sense of peace but valuable information from others with the same problem. That information was in valuable and would not have found that kind of support without this group! With unresolved heart issues I would ignore their post and stay with the group. As you are further investigated you will invariably need support. I only wish I found this site prior to my PM implant as I would have been more informed about placement and would have been much more comfortable with my placement! Until my ablation A PM was not even in my vocabulary. Now well informed I look forward to my replacement so I can make a better I formed decision. Good luck and shame to the person who sent the private message!

Happy posting!
Heidi

We Can Do This

by Bill-2 - 2010-09-21 08:09:30


I have a suggestion for all of us that get a private message that we think is improper. Cut and paste the message along with a message of why it is improper and post it here for all to see. If we know that is likely to happen, we all may stop and think twice about what we were sending as a private message. I know it would me.

Garbage!!!

by Edouard - 2010-09-21 09:09:37

As far as I'm concerned, you are welcome to stay as long as you want. I've seen numerous posts from individuals who have not yet received a PM and who need info and/or reassurance because a loved one has a PM or they themselves may eventually need one.
I don't see what we'd have to gain by excluding anyone who may not fit into a narrow definition of who might or might not be permitted to join.
Keep on reading and keep on posting. You've got MY vote.
Regards
Edouard

Hugely Welcome!

by Wannabe - 2010-09-21 09:09:43

Janey, I can't believe anyone would be so insensitive as to suggest you shouldn't be here because you've not yet had to have a pacemaker. As you point out, you're not out of the woods yet, and if you find the help and support available on this site is a comfort then there's surely no reason why you shouldn't be one of our number. I hereby invest you with the Order of Honorary Pacers (OHP) and am pretty certain this will be fully endorsed by the full membership, bar one.

If, in the unlikely event, you're further made to feel unwelcome, then let me know by private message and I'll give you my private e-mail address and we can correspond when you need some support.

Hope you're feeling a bit better today and everything's satisfactory with your blood tests. Despite all, do let's know the outcome. All love, Sheila

Somebody Is Wrong

by SMITTY - 2010-09-21 09:09:47


Hi Janey,

Unbelievable that someone one would have the audacity to tell you that you shouldn't be here because you don't yet have a pacemaker. If more people were like you and would take a few minutes and try to learn as much as they can about pacemakers before getting one, there would be fewer uninformed, confused and sometimes frightened people with pacemakers.
So far as I'm concerned you are doing the right thing. For what that is worth.

Anyway you are not the first and I hope not the last that comes here for pacemaker information before the get one.

Good luck,

Smitty

Booo!!!!!!!!!!!

by LS - 2010-09-21 09:09:52

To the person that sent you a private message saying that!!!! OMG!!
Funny they didn't have the cahones to post it publicly huh??
Hope you find some answers soon.
Keep us posted!
Liz

Not A Battery of Honor

by New Me - 2010-09-21 10:09:02

How rude for anyone to send you a message when you have come to this site for help and understanding. Coming here myself for the same reason, no doubt in my mind actually after some of the postings that had done so BEFORE having this "thing" in me, I would have NOT and let go and let GOD. Since the first days of chat rooms, internet sites for various reasons and causes in my mind some who come to sites as this have only one thing in mind, upsetting the balance of kindness and understanding. Stay strong and don't let the idiots get you down!!

Stick with us.

by mick2203 - 2010-09-21 10:09:05

Janey, please stick with us. I am also in the uk and know first hand how frustrating it can be over here getting information out of the health service providers and finding other useful support groups. This is the site for you and I for one actually find some of your post informative and helpful as a pacer with arithmia and syncope problems etc. Additionaly I would be interested in how your story unfolds following all your tests etc.

I also share your sentiments about the benifits and the people in this club.
Kind Regards
Mick

Thank You SO Much!

by Janey L - 2010-09-21 12:09:54

Hi all. Thank you SO much for all your love & support! I am truely touched by all your kind words & at how quickly you wrote your replies. I was SO upset last night about the private message.

Thank you SO much
Janey

You know you're wired when...

You’re a battery-operated lover.

Member Quotes

I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.