2 Crisis - Twice in one week - a bit much.....

[CDreamer]

This week we we should have been enjoying Chelsea Flower Show - unfortunately went into AF on the train up to London and felt really ill. Sat on platform whilst Hubbie got help and ambulance was called. Did valsalva maneuver on the platform and reverted into NSR - just as paramedics arrived but then went into a mini MG crisis, couldn't move, couldn't swallow and couldn't breath. Paramedics were only concerned about heart issue and kept telling me there was nothing wrong with me and to open my eyes and talk to them - which I obviously couldn't do and couldn't tell them it was MG. I was left feeling as though I was putting it on because 'all the numbers are good'. Frustrating, concerning and very upsetting about summed up the experience.

Coping with 1 chronic condition was life changing but 2 interacting with each other is exhausting.

I have ended up in hospital twice this week already - Monday & yesterday with this.

My MG has been reasonably controlled recently but I have had Fast Atrial Fibrillation for over 12 years but I haven't had episodes after 2 procedures in 2013 & 2014 until last September, then only a couple until April and I wasn't particularly symptomatic and it didn't seem to affect the MG - until Monday.

It was very scary with breathing, swallowing & speech all affected but the Paramedics were so focused on my heart they were ignoring my MG!

By the time we got to A&E I had started to come round & immediately took my meds but I was just put into a side room and left! No monitoring, not even hooked up to monitors - for 2 hours. I was OK by then so they gave me an ECG - oh everything normal - goodbye. Fair enough went home and rested and was OK by Tuesday.

Yesterday I had GP appointment. AF kicked in just after lunch so went in for my appointment to talk about other stuff and just mentioned I was in fast AF. My GP gave me an ECG - ooh yes you need to go to A&E now - my MG was not symptomatic at all at this stage - wrote a referral, copied all my relevant notes, was concerned for me and made sure my husband knew what to do. She referred me to medical triage, not A&E as I didn't want to go to A&E again for the same thing to happen as happened on Monday.

More or less the same thing happened again, only I did get to see a junior cardiologist who works with my cardiologist 4 hours after arriving - but again I had flipped back into NSR by then. An ECG was ordered and I was told I could go home if I was in NSR. Mmmmm.....

Same thing happened when flipped into NSR - my MG became very symptomatic and I couldn't speak properly. Not as bad as Monday but significant.

Everyone around AF thinks stroke and my MG symptoms can mimic stroke symptoms so it seems the focus is totally on the AF - again I was just left with Hubbie on a bed - until they got short of beds and moved us into the waiting room - which was also full - arrived at 4 ish - now 7.45pm and hadn't seen a doctor. Thankfully I could walk and talk by then.

A nurse had told me I couldn't take any drugs and wanted me to hand over everything - well that didn't happen! She backed off as I growled and glowered at her and I took another tablet very deliberately.

I soon recovered and was eventually discharged. (Myasthenia is controlled by a medication which needs to be taken at precise timings or when symptomatic, it can get really serious if not so I self medicate up to a maximum dose)

I am now getting AF episodes every other day which I can cope with very well at home but the sudden onset of the MG symptoms after the last couple of days do scare me.

I am NOT going back to hospital, however fast my heart goes, as I feel I can cope better at home, go rest, take Mestinon when I need to and go on CPAP if I need. I felt so scared that no-one was considering the MG symptoms which could potentially be far more life threatening.

I cannot take Beta blockers or rhythm control but because my HR is fast everyone wants me in hospital - which stresses me out!

Not going to tell anyone next time, stay at home and keep calm and mind myself.

Am seeing my EP in 2 weeks.

Sorry for the long post but needed a wee bit of a vent!

PS - A&E & Acute Medical were completely overloaded and their backs were obviously to the wall and nurses didn't have have time to care for people, several in distress with AF - all they had time to do was admit or discharge which took hours.

I am not complaining about the NHS - just the lack of resources and a bit thrown at the mayhem.

It could be the warm weather but there were a lot of very elderly and frail people being seen and then sent home with no treatment and I heard one senior staff member boasting that she had managed not to admit anyone that day.

Moral - don't have more than one condition at a time.

[Hidden]

Sorry what is MG I never been to a and e with AF just sat down or lay down till I feel better.

[CaroleF in reply to Hidden]

I didn't know what MG was either, but picked up the mention of 'myasthenia' in the original post and googled it. See here:

en.wikipedia.org/wiki/Myast...

I must say that it doesn't sound like a happy combination with AF.

I've twice been sent to A&E by the GP and by a minor injuries unit nurse. Happily I received much better treatment/attention than CDreamer seems to have experienced. On both occasions I was not at home when the episode happened and matters were taken out of my hands. I think that if I experience AF again whilst at home I'll definitely try to 'ride it out' there though on the last occasion I was told to wait 2 hours and then go in if I wasn't feeling better.

[CDreamer in reply to CaroleF]

Thank you Carole - I hadn't seen that explanation but it is quite succinct.

It was SO busy I think they were triaging - people coming in with sepsis and obviously very, very ill along with heart attacks and something big in rests so I am not complaining as all the staff were very obviously more stressed than I was and completely swamped.

[Annaelizabeth in reply to CDreamer]

What a miserable experience for you.

[Denise- in reply to CaroleF]

I was advised the same, also listen to my body, if symptoms feel 'different' or I'm concerned get to hospital must say I've only ever had great treatment here in Birmingham

[CDreamer in reply to Hidden]

Yes - if I could have, I would have! The AF was the least of my concerns.

[CaroleF]

Oh my golly gosh CDreamer what a rough time you have had! I had to google to find out what MG was and it doesn't sound like a condition that is easy to have to cope with at all. I do hope your EP appointment leads to an outcome that makes life easier for you.

This is a great place when you need to vent, isn't it? I'd have felt the same in your position.

Carole

[Hidden]

Hi CD, Could you wear some sort of Medical ID to tell ambulance people what conditions you have. Your story reminds me of my mother who'd had a stroke and couldn't communicate, but afterwards she explained that she could hear and understand everything everyone said.....gggrrrr.

Hope you're feeling better.

Koll

[CDreamer in reply to Hidden]

Yep - I have a Medical Passport which was handed to paramedics along with a special card addressed to paramedics asking staff to check with specialist/web-site before treating and listing all my meds. I also have Medical Alert on my IPhone with same. Myaware (MG Charity are excellent & issue a lot of information and campaign to increase awareness but very, very few medical staff outside of the major specialist centers have ever encountered it. I was the first patient my GP had ever seen in 35 years of practice.

It is trying to get people to understand just how critical it can be as your body stops working your chest muscles fail to work well enough to clear CO2 so oxygen sats were 99% - so as far as staff were concerned I was ok but I felt so terrible I knew I wasn't but couldn't talk to say anything!

I think because it was such public place I got very stressed and that always makes things worse - the AF was he least of my concerns.

Hyoid to hear from you Koll, take care.

[Denise- in reply to CDreamer]

Very scary, my granddaughter had an episode recently when she went very quiet and her parents thought she was sulking, when they realised that she wasn't responding paramedics were called, at 5 she described it as hearing everything but her lips were zipped! Must be worrying that you carry everything to keep people informed but it's still ignored, keep safe

[CDreamer in reply to Denise-]

I am so sorry about your granddaughter - that is exactly how it feels - hear everything but cannot respond.

I do hope your granddaughter is ok?

[Denise- in reply to CDreamer]

Thankyou creamer, she has mild cerebral palsy so assumed it was a fit, taking medication but it making her very tired, really feel more tests needed, she didn't move just lay down which is not typical of epilepsy, bit frustrating, but we'll keep pushing for some more tests

[CDreamer in reply to Denise-]

Hope you can find some answers.

[JackyMac]

That sounds an awful experience and not much fun to boot. CDreamer I didn't realise that I didn't get the best care when I was in hospital, until I joined this forum. The hospital were more concerned with getting me out of the door within 4 hours so as not to 'breach' their objectives. They could have done more for me.

Hopfully now you have vented you'll be calmer and better. Take care.

[pottypete1]

I am so sorry to hear you have had such a dreadful experience. As if AF so often was not enough, having to cope with MG as well together with the issues surrounding being treated was clearly very difficult to endure.

I have had to go to A & E on numerous occasions and each visit was different often effected by what else was going on. Sometimes high level of empathy and understanding whilst on other occasions quite the opposite on such occasions I felt much as you did.

Maybe it would help if you carried a written statement of your condition with you all the time so that you can make it clear that your condition is complex and not only AF. We all know that AF is often dismissed as it is "not life threatening" but with your added MG it is not so simple is it?

Pete

[CDreamer in reply to pottypete1]

I do.

[pottypete1 in reply to CDreamer]

That makes it even more unacceptable

[Hidden]

What an absolute nightmare for you CD. I know from your previous posts how reluctant you are to go to AE at the best ... ( or worst!) of times.

I do hope things settle for you very soon. Could a further ablation be on the cards?

Best wishes

Sandra

[CDreamer in reply to Hidden]

I am seeing my EP in 2 weeks so a possibility but it would have to be a treatment plan with neurology as sedatives and anaesthetics will exacerbate MG. Thankfully my EP has had one other patient with this combination. The talk was of having a course of IVIG before as the MG developed after my last ablation and it was thought that was because of the sedation drugs along with Bisoprolol & Flecainide.

Thank you for your empathy Yatsura. I don't want to be confined to my house but I can function here.

I wouldn't mind but the AF episodes aren't really that bad or last that long.

Take care.

[Vanna-C]

Sorry to hear of your experiences CD, unfortunately this is becoming more commonplace, although I must say that the last time I was in hospital, I was dealt with very well, several hours in resus, a night in medical assessment, and then moved to Cardiac care.

I had delayed going in for many hours, because I didn't want to feel as though I was panicking, but eventually had to give in.

I know that it's only my opinion, but the biggest occupier of the medical staffs' time is form filling. The same questions asked by every person who I saw, many paged documents filled in at every ward change, multiply that by the number of patients in there, and it is amazing that they get any nursing done at all.

I do understand that it is necessary to have a paper trail, in case of later problems, bearing in mind the litigious society we live in, but once should be enough surely? This would leave other staff to do the job they have trained for, and actually care for patients!

[CDreamer in reply to Vanna-C]

Couldn't agree more. I think the difference was that my AF had stopped by the time we arrived at A&E on the first occasion and on Wednesday because I had walked in myself - although very breathless - my HR had come down to about 100-120 which wasn't considered very bad - whereas in the GP surgery I was 150-170 although I was still walking.

The second time I was very surprised when I wasn't hooked up to monitors above the bed, especially when I was in AF - but neither was the guy in the opposite bed who also had been brought in on oxygen and in AF and was obviously not all well.

We had to wait for about 2 hours to get discharged and exactly the same thought went through my mind.

I don't have any answers, I believe a lot of the clerical staff have been let go as 'non-essential' - but all still using paper with their IT a mess?!

It sounds like your AF lasted a long time, which happened to me before my 1st ablation, and I have also spent time in the same hospital in the cardiac unit.

Too many of us old buggers wanting to live a little longer and enjoy life.........

[Vanna-C in reply to CDreamer]

Yes it was a long episode, 61 hours with a heart rate of around 200+, after it had stopped I felt as though I had run a marathon!

[Finvola in reply to Vanna-C]

Totally agree - much of my time with very busy medics in A & E was spent answering the same questions for forms as I was passed up the heirarchy of doctors before admission - when more forms were needed.

[Finvola]

What a dreadful experience, CD - the unimaginable fear of being unable to communicate is a worst nightmare.

I hope your EP and neurologist can devise a plan to help you cope with the conditions - very best wishes.

[cbsrbpm]

How awful for you CD, must have been a very scary time. Bad enough coping with AF without MG as well. Unfortunately MG is so rare not much is known about it in the general medical profession, that is when it is very important for you to be listened to. When an ambulance was called to my husband following a crisis they had never heard of it, thankfully it had resolved by the time they got there. I hope there is something they can do to control the AF at least. Hope your feeling better now and vent away as much as you like that's what we are here for 😡🤣

Best wishes

Brenda🐝

[meadfoot]

So sorry to hear of your thoroughly awful time. I do hope things begin to settle for you now. It's dreadful feeling poorly all the time especially when you have a full life to lead.

I am sure you will bounce back as always. Please take care, sending you big hugs and best wishes too to your husband. X

[CDreamer in reply to meadfoot]

Thank you. Another douvet day today u fortunately.

[sarniacherie]

Good old AF, never even sends a postcard to warn you of its arrival. Having MG too seems a bit harsh but we just have to deal with things the best we can.

I have PAF and have been given such conflicting advice over the years. The GP tells me to try and cope with a PAF episode at home unless I feel really ill, the cardiologist says I don't need A&E as I am not likely to suffer a heart attack from an episode and the local chemist recommends I go to A&E every episode, however brief.

I work as a ward clerk in an NHS hospital and I had an episode at work one lunchtime. The sister in charge sent me to A&E. I didn't expect preferential treatment just because I had my uniform on but the A&E consultant was very off-hand with me and told me I needed to educate myself on my condition. When I reverted to normal sinus rhythm after about an hour he asked me if I felt silly for coming to A&E!

Needless to say the episodes I have had since then I have been dealt with at home.

Despite what Jeremy Hunt says the NHS is in crisis. The hospital where I work is knee deep in management staff, all earning sizeable salaries to the detriment of the front-line staff. My ward is often unable to cope due to too few staff on duty but nothing changes. Throwing more money at it is not the answer. It needs a complete assessment and re-structuring. I think a businessman or woman should run the NHS rather than a politician. I wonder if President Trump could give the NHS a few tips?

Good luck and take good care of yourself.

Maureen.