Not such good news!!

Hi all
Well, I saw my EP today & he is not as excited about my sinus node as I am....or was!

Due to my previous arrythmia history & location of my first 2 arrythmias, he is actually quite concerned that I might be developing IST (another arrythmia....inappropriate sinus tachycardia).

He said that as my condition has been so up & down, with another arrythmia developing everytime he cures one, it is going to be a "wait & see" situation & he will not change any settings on my PM for the next 6 months.

If my condition remains stable over the next 6 months, I'll have another PM check then & see him in clinic. Then he will look into lowering my lower rate, if my SA node is ok. He said it does not matter if it is not changed from 70 yet as the PM will just sense & not pace if my SA node works.

However, if I develop any symptoms or problems within the next 6 months, then he said I must contact the Head of Pacing (or her Deputy) & they will take the appropriate action which includes contacting him. In which case I will see him sooner than the 6 months.

I've never had IST before but, in fact, my EP did think my first arrythmia was IST until he did an EP study & found it was atrial tachycardia coming from near my SA node. That happened with my second arrythmia too. So I can understand his caution.
Especially as my SA node seemed to work up to 130 on the recent treadmill test & it only ever went up to 80 after it was damaged 2 years ago.

It's a wait & see situation now for the next 6 months. I bumped into my arrythmia nurse & the Pacing Deputy after seeing my EP & they agreed with my EP's caution.

I asked my EP about having an op being PM dependent, with my current gynae situation. He said the main risk is from the diamerthy (?spelt correctly) but he & the pacing team will sort everything out if I do need an op. So I feel reassured by all that now.

My EP is also happy for me to get a part time job.

Not quite the SA node news I expected today but I can understand why my EP is being cautious about it.

I'll keep you posted & thank you for all your support, it is always very much appreciated.

Best wishes
Janey

5 Comments

Thank you

by Janey L - 2013-05-14 01:05:03

Hi AngrySparrow
Thank you for your reply. I have to say I just got so exhausted with it all yesterday.....but today, after a good night's sleep, I feel SO much better about yesterday's news.

The positive is that I haven't actually got IST yet, my EP is just keeping that in mind due to my particular arrythmia history & location of my 2 atrial arrythmias I had in the past. So, while I could develop it, equally I might not. He is an excellent EP & I trust him 100%, so if I do develop any further problems I know I'll be in his excellent hands.

I e-mailed the Head of Pacing last night to update her, as she has been looking after me & my PM since last year & my EP wants me to let her know directly if I do get any further symptoms etc. I had such a lovely e-mail back from her today. She said she totally agrees with my EP that things need to be monitored & left to stabalise over the next 6 months & I am to let her know straight away if I get any more symptoms.

She also reassured me a lot about any forthcoming gynae surgery, being PM dependent. So now I've had really positive responses from her & my EP about any surgery. I feel now that whatever the gynae Dr says I need doing to treat my prolapse, I will be able to go ahead & feel safe with my PM. I'm still waiting for a clinic appt to see the gynae Dr.

Even more great news today too! The job I applied for at my local hospital a few weeks ago, originally they wanted full time staff only. I've heard from them today that they are still really keen to employ me, as I have 32 years NHS experience, & will be flexible about the hours! They have sent me some online tests to complete by Monday & if I pass them (I hope so!!) they will give me an interview next Thursday!! Wow, I did not expect that great news today!!

Isn't it amazing how things can look SO much better just overnight!

I have such a fantastic cardiac team & I know that everything they do is the best thing for me. I am really lucky to have such a great team.

On that happy & positive note.....thanks again for your reply.

Best wishes
Janey

Same here...

by golden_snitch - 2013-05-14 02:05:14

Hi Janey!

Funny, but I got about the same news yesterday. I saw my EP professor, and he was not at all happy to see some spontaeneous rhythms showing up on my pacemaker heart rate histograms. We had slowed down the rate response a bit, and this triggered some other rhythm or even rhythms to kick in. They did not cause any inappropriate tachycardia, though. But still my EP said with my whole history of arrhythmias it's not a good sign to see other rhythms than the pacemaker kicking in. Given my history the risk is very high that these rhythms will cause trouble again. He has seen the mess inside my right atrium last year, with a four times ablated sinus node reacting again and all that, so I guess he knows what he's talking about. So, we'll monitor that closely. The rate response is back to its faster settings, so that it overdrives the other rhythms.

Just read your most recent post: Congrats! And I also like your attitude regarding the possible IST onset. You're right, you might as well never get this!

Best wishes
Inga

Hi Inga

by Janey L - 2013-05-14 02:05:18

Hi Inga....it's great to hear from you.

That is amazing that we both had the same sort of news yesterday! I do value your input in this because I know you have a lot of experience with arrythmias & SA node function.

I am very interested in your news too because we have both had the AV node ablation too. I am so sorry to hear you are having more rhythm problems. Goodness, you've been through more than your fair share with arrythmias over the years already....so sorry to hear you are having more problems.

Can I ask why they turned your rate response down? When I went for my PM check last week I thought they might change mine as my SA node seemed to be working (this was before I saw my EP) but they showed me the histograms & explained the graphs showing sensing & pacing. I still need the rate response a lot so they left it as it was.

I guess I always assumed I'd always be 100% atrial & 100% ventricle paced, with a damaged SA node & no AV node. So I was really surpised a month ago when they found my SA node went up to 130 on that treadmill test. I assumed the SA node was working again. So I was taken aback by my EP yesterday when he was not as excited as I'd been about it. My overall impression was (& my hubby's too who was with me) that my EP was actually quite concerned....which surprised me.

But he too said because I've had one arrythmia after another & 4 altogether now....he wants to wait & see how this goes. I feel very happy now with his decision & know that if I run into problems the Head of Pacing will be straight onto things. She is very good at getting tests organised quickly & contacting my EP.

I can't remember.....when your SA node kept on recovering after each SA node ablation, did it function normally?

I will be very surprised if I get IST but one thing I've learnt with arrythmias, anything can happen!

Please do keep me posted on you, I'll be very interested to hear how things progress with you & this new problem. I really hope things settle down for you.
You have an excellent cardiac team too so you are in great hands. That's how I feel about mine. It is reassuring to be so well looked after.

Really pleased to hear from you....I'll keep you posted too.

Best wishes
Janey

Rate response

by golden_snitch - 2013-05-14 03:05:45

Hey!

They didn't turn the rate response down, they just slowed the reaction down a bit, because I have been running around with a very fast rate response. When I ran slowly I was always at 160bpm and more, and when I just walked to the subway or the supermarket, it was around 140 and faster. So, they changed the "level of activity", so that the rate response will act more like one in a very well trained person. But by changing this level from "high" to "very high" the rate response was suddenly very, very slow, and because it reacted so slowly, it triggered other rhythms to jump in. So, now it's back at the faster setting.

We never let my SA node recover fully - not sure, if it would. When it kept recovering, it never functioned normally, but was already on its way back into IST, so it was ablated again. The last SA node ablation was back in 2000, and until now we see no more IST. But when you go in and stimulate a bit, you get a sinus rhythm - at least for a short episode. Due to the complications I have had from the SA node ablations - vena cava superior syndrome -, EPs will never ablate that area again. So, we just hope it'll never fully recover and cause trouble again.

We'll see. I'm not too worried now about those rhythm or rhythms that have showed up in the latest interrogations. We'll just keep an eye on that.

Best wishes
Inga

Hi Janey

by Jax - 2013-05-16 12:05:06

It's me!!

I'm reading all of the texts and trying to learn.

What's 1st....I have never heard of it.

I'm cheering for you Janey. It seems that you're in very good hands. I have to change cardio's and maybe even EP's. It's tough to change.

You know you're wired when...

You have a little piece of high-tech in your chest.

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