[risa80]

I was just coming back to see how you both were and cj82! Wow!! How are you feeling now? Will you be able to cut back the beta blockers slowly? I really hope it works for you!

Nothing happening here. Still don't have a cardio, and I now have a trick which involves getting extremely breathless just while talking or eating and blacking out. No idea what that is about.

[cj82]

You need to be taken seriously risa, that is horrible to be blacking out. They tried to tell me I was hyperventilating at one stage, but then saw my ECG....

I don't feel much different. I can have another ablation but sort of wondering what the point is. I think the beta blockers are working better, but other than that no real change.

Next time you black out can you present to a big public hospital? They have a duty if care to investigate. A fresh set of eyes can often help.

Good luck! I'm having another holster monitor next week so I'll find out how fast I'm going in a daily basis then.

[risa80]

How are you going cj?

My aunt just had ablation for atrial fibrillation and it went badly. Blood pressure totally messed up - thinking she has POTS and she hasn't ever had all the tests.

The bloody public hospitals around here are useless. Actually every doctor I have met is useless in regards to my conditions as they don't know enough about them. I have to explain it all so many times.

Blacked out while sitting the other day ironing - almost took out a very hot iron and ironing board with it.

Saw another cardio a couple of weeks ago and she can't help either. That would be the 7th.

The psych said to me today, please don't give up.

But, I'm ready to. Seriously when I have to teach them whats going on, they really know less than I thought!

Oh and the blacking out while eating/talking is very concerning and something I have to keep an eye on. hah.

[cj82]

Hey Guys, just checking how you are going? Are you still getting the blackouts Risa?

I flew to Sydney last week to see my electrophysiologist and hes come up with a rather interesting plan which invoves open heart surgery. Crikey Moses, I still have not really processed it. As soon as I start thinking about it I get panicky.

I have a Left Bundle Branch Block which is getting worse, so they want to do it relatively soon, he just needs to get a team together, as this actual operation has only been done once before that he knows of. Hes not going to remove the sinus node, but cut off the blood supply to the whole area, so the pathways cant grow back.

Its effectively giving m a massive heart attack under controlled conditions, then putting in a pacemaker.

Anyway, just needed to let someone who understands what we go through with these weird conditions know! Ill keep you posted!

[Dani]

Hi Guys,

Here's a thread I never wanted to belong in. Bugger! Yes I've been absent from here and in a world of bother with heart problems.....I'm freaking over it and I'm nowhere near as far down the track as you girls.

The cardiologist I'm under is Tom Gavahanm, just love him. His books are absolutely closed but I have a chum that's a surgeon and he's seen me with all this trouble kicking off and as Tom is a good mate of his got in to see him at 8.30am within 2 days of second 'cardiac episode'. Have since had another 3 that have required being raced to hospital including quite a spectacular epic fail on my stress echo, the poor diagnostic cardio's face was a picture, she shat herself! LOL My heartbeat at peak was 168 and then I semi-fainted thinking I was going to face plant the treadmill so thank God jumped off in time....she screamed at me to lie down immeditely and her gorgeous nurse just shoved me on the bed...within 7 seconds my heart was beating at 55. She's at a loss. Linford Christie I ain't but she couldn't believe monster drop in <10 sec. Still haven't sighted the report but on the back of that boy have I been fastracked to see all my ologists. LOL

She seems to think that I'm having "conduction" problems but she feels my rheamatologist has got to jump right in the frame here and weigh in with her thoughts. Fortunately my rheumy (Professor March from RNS) is back in the country on Thursday and seeing me Friday. Result. Endocrinologist he wanted her feedback from as my Hashimoto's & Menopause/HRT & Type 2 diabetes she looks and any other autoimmune stuff so I'm seeing her this Wednesday. Clearly it pays to fail at stress echo's because all of a sudden you get service. Respiratory physician been pulled in as cardiologist flapping that perhaps my pulminory sarcoidosis has perhaps become cardiac sarcoidosis. Joy. I see him tomoz. So yeah I'm still so new to this and already freaking over it. My issues are mainly being a chronic autoimmune disease chick and my cardio believes that as the severity of my rheumatoid arthririts is so bad (commenced biologics and bloods not even shifting, $hit!) that it's given up attacking my joints etc and now just starting on my organs. Woot. Other one I need is my haematoloist and cardio shot off urgent referral to her today so hopefully will get to see her ASAP. I had dodgy findings on my bone marrow back in 2009 and pretty crappy feedback from PET scan. I sat on my hands as busy with my youngest and look where it's got me. Hmmmmmm.

So that's where I'm at. Nice to be able to read what you guys are saying and keep abreast of what you're talking about. I see my cardio again next Monday as by then I would have seen the endo, rheumy, respiratory & hopefully haem by then....should be a cheap week really. ZOMG this crap is exxy! Anyhoo I'm realllllllly pinning my hopes on my rheumy being able to rustle something up. I know when I see cardio I'm in for a CT angio & tilt test & holter & ????? (3 other things I've forgotten the names of) so all of that sounds like a blast. Other than that I'm just so seriiously over feeling so absolutely crap all the time. In knots thinking about school holidays starting next weel, UGH!


Enough whingeing but I'll wait to hear from you girls again, I seriously hope you've both had some good news since you both last posted.


Dan xxxxxx

[risa80]

Hi guys,

Just doing a quick check in to see how your going?

Nothing much has changed here other than repeated doctors telling me they cannot help but I cant continue to have a high heart rate without it eventually killing me. Helpful hey.

Had a bit of an incident driving last week too. lack of oxygen or something from blood being pumped too fast.

Now trying to get tested for malignant hyperthermia too.

Hope you are both ok x

[risa80]

Oh and was going to double check if you guys are managing to do any low impact exercise? I tried yoga last week and got my heart rate to 175bpm lol and thought that was meant to be low impact!

[risa80]

Ah Dan was just rereading over your reply and wondered if they had any more ideas on the monster drop in beats? My tilt table test saw my heart at 205bpm and drop to 40bpm and scare the crap out of everyone. Blood pressure went with it to 50/30.

Generally though my heart doesnt drop too low. At rest it is usually 120-130 and any activity will see it to 200.

[Guest_Tealight_*]

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This post has been edited by Tealight: 28/09/2012, 05:31 PM