Had cardiology appointment today, no real progress!

[ccwh70]

My irregular and now pretty painful heart beats are still increasing so much so I ended up in A&E this week but the result of that was nil, except being checked out for immediate danger.

However I did manage to get a cardiologist appointment for today which wasn't entirely fruitless but also didn't resolve anything as yet. He listened to what I had to say to some degree, then had a listen to my chest, said there's nothing obvious he could hear so suggested a 24hr ecg and echocardiogram which I'll have to wait for. In the mean time I'm getting lots and I mean lots of painful heart beats, irregular thumps and PVCs which is causing me a high level of discomfort and anxiety for sure. My BP is up from usual at about 123/83, usually I'm about 107/74 on my meds. HR is fine apart from the random spikes I get now and then where it shoots up from 55 to 100 after little effort.

Tonight I'm feeling pretty dire, getting frequent painful thumps, feeling tired, shaky and a bit anxious for sure. But there's nothing I can do to stop this, I can't speed up the appointments, I can't not do something that's causing them as there's so many potential triggers, even laying or sitting certain ways triggers them as does taking a deep breath! None of the meds I'm on clearly help with this so I'm going to be in the hope I might sleep and feel a bit better tomorrow. I'm not hopeful, this has been steadily getting worse over the last 7 to 10 days at leat I'd say.

I don't feel reassured by the cardiologist simply saying he can't hear anything! He didn't even now what I'd had done or why as my report was sent to a different hospital where I had been originally referred from and he has none of those records. Having already seen cardiologists miss my heart condition earlier this year I don't feel entirely confident in an assessment made simply listening with a stethoscope.

I feel sorry for my partner who has had to see me fall apart before the heart surgery, then deal with me being pretty ill before having the double bypass. She hoped as did I that after that I would have a steady if slow recovery but it's been nothing like that. I've had issue after issue and now almost 9 weeks out I'm still dealing with heart pains and rhythm issues which she has to watch me deal with. This is after already having more than 2 years of ill health due to an adverse reaction to antibiotics which she's also had to watch me deal with. I do sit here and ask Why Me?

I missed 2 sessions of cardio rehab this week because I felt too unwell to attend, something I really don't want to miss. I'm going to call them Monday and see if I can tag on some additional sessions at the end but at the moment I don't feel I'll be ok to go again Tuesday either.

Anyway, once again sorry for chewing your ears off, not many places I can come an rant with people who know what I'm going through.

[Marc68]

I'm sorry to hear that CCWH70. I can also empathise to some extent... I'm sat here now wondering if the pains in my heart will ever subside. I'm 10 months post MI and stents being fitted and feel like I'm going backwards, when I should be well on the mend. The pains start within an hour of waking up and I go to bed with it, pretty much every single day! I'm told I shouldn't be having them, yet no-one wants to do anything about it. I'm getting dragged down by it and feel I'm just waiting for another heart attack to happen, the anxiety of which will probably mean that that will be sooner rather than later! I just can't get on with life as it's taken over everything... I'm sick of it!

Hope things start to improve for you soon mate, you deserve a bit of luck.

[Sina-6491]

Hiya,

Had exactly the same issues as you, was given all the usual stuff while still on the cardiac ward, it was so bad but no one seemed to listen.

I was rushed back into A&E two weeks after going home due to HR & blood pressure still going nuts. It didn't settle until they put me back on beta blockers.

I stll get issues but not anywhere near as bad.

My breathing seems to be quite bad at the moment. Still getting palpatations, but quite light most of the time.Yawning all the time, always tired. Tinnitus & headaches' wake me up, soon after I finally fall asleep. However my sleep seems to last a bit longer & is slightly deeper in the last week.

All in all, not feeling my best, but still looking forward to Hyde Park tomorrow.

Early start, from Bristol to Victoria by coach, at 06:45. Then last coach home at 12: Am.

Time we pick the car up & get home, will probs be 03:30.

Got appointment with consultant at 09:40, Monday morning. So I doubt I'll Evan sleep.

Ha,the sad thing is, I don't think he'll be interested as I don't have anything solid to give him. But I can't help thinking it's anginer back again.

So what is the reason you can't have beta blockers? I really felt it calmed my AF down a lot 🙄

[ccwh70 in reply to Sina-6491]

Sounds like a few of us don't have a smooth ride after all this. I've been awake since 5.30am today and had a couple of dozen painful thumps along with some smaller annoying ones that don't hurt. Its impossible not to be concerned when your heart is doing weird things a couple of months after heart surgery... especially when it's getting worse not better. I wasn't on beta blockers due to having mild asthma but the cardio is talking about trying them and monitoring my breathing etc.. TBH I hate pills but right now I'd take whatever I needed to in order to stop these and have a level playing field so I can get on with my exercise/recovery.

It's not like I can avoid them it seems, they happen at all times (had a few even sat here typing). If I walk, eat, take a deep breath, lay down, lean forward etc.. all of them can trigger it but not always. My 10 second ECG the doctor does always seems to be OK and not when anything is kicking off! But now its the wait for the 24hr ecg etc.. which I know will take time (NHS isn't quick most of the time I find).

I'm looking today for private cardiologists just in case I decide to go that route and blow my savings!

One thing I've noticed, post CABG my HR was fast, 100+ so they stuck me on these 2 meds as I mentioned. After that my HR has gradually reduced and is currently 56 as I'm sat here. Yet my BP which was a fairly low 107/74 to 117/78 ish has also gone up since these beats increased. The past few days it's been 126/84, 130/82 and other similar readings yet my HR is still low in the 55 - 65 bracket. To me that sounds odd, HR is low so not working hard yet BP has risen. I know stress can play a part but it's definitely a bit odd. I'll keep watching it I think.

Anyway, todays plans were to go out this afternoon, that's canned, I just don't feel like risking walking around much with these kicking off frequently. Especially when I know A&E will do nothing.

[Sina-6491 in reply to ccwh70]

yes like our friends have said, anxiety plays a huge part in our lives now. And the trouble with anxiety is, we can cause our own symptoms.

However the thumping and feeling like your heart is coming out of your chest. Or the top half of your body is bouncing all over the place, but the bottom half feels ok could be AF issues.

That was why my consultant put me back on the beta blockers. Took a little while, but it really did calm things down.

Don't forget, a lot of the consultants in the private sector. Are the very same consultants' who work in the NHS.

So I wouldn't waste your money there. Just keep records & be a little more persistent on being heard.

Hope your feeling better than in last post.

Hugs, Jo 🙂

[Twobells]

A lot of symptoms going on. Not as bad as yours, but I was taken off all my meds and having one re-introduced at a time. Cannot take blood pressure tablts, as my BP drops vry low and I ended up fainting. Just started taking Ramipril two weeks ago, really wish I hadn't as I feel absolutely dreadful. Tired, breathless, grouchy, very sluggish and heart feels like it going to come out of my chest. I have a really good cardiologist so I am able to ring his secretary tomorrow and he will call me back. I think he wants me to try it and see what meds suit and what don't. I'd rather not take any, but he recommends taking Ace Inhibitor like Ramprilwhich protects the graft and ateries from further blockages. It may be worth paying for a private consultation just to see. If they then find out they can give the recommendations which then can be given on NHS.

[Fredders]

Sorry to hear you're having such a bad time. It's also a vicious circle because the more stressed, anxious and in pain you are raises your blood pressure and adds to the problem. I would get back on to your cardiologist and/or pester your GP and get them to do the ecg etc asap. I think sometimes they are so used to dealing with heart problems they forget that for us it's a new world and extremely worrying when you don't know what is going on and are in pain. Hope it gets sorted soon.

[Prada47]

Hi

Can't help thinking that we all over analysis what's going on with our heart at times.

Sometimes/days we all feel a little bit off, but hey try to be positive because the vast majority of us will still be here tomorrow !!!. My BP is up and down and my HR is also unstable but again I go to bed not thinking " I may not wake tomorrow " but looking forward to what tomorrow will bring. I don't mean to sound blasé, but just think what you worried about yesterday is still here today; and so are you.

Regards

Prada aka Frank W