I know AF is a pesky, disabling and horrible condition and I don’t want to be in least dismissive of how it affects us- but we rarely hear about people from the forum dying -
I have heard of 2 people in the last week I ‘know’ from my Myasthenia forum who died because of breathing problems because of muscle weakness exacerbated by heat, both in the Midlands and failed by their hospitals through lack of knowledge that when someone presents with slurred speech, and indicates they can’t breath, staggers and falls over they AREN’T always drunk, drugged or having a panic attack - they need, immediate life saving intubation! Sorry I guess I am a bit angry too!
Please people do not assume and avoid if you see someone behave like this - they may need urgent help and I ask because I could very well be that person one day.
Thankful for every beautiful day and very, very sad.
Written by
CDreamer
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So sorry to hear that CD. WE are relatively lucky here are we not? And yes. Every day is fantastic but it really does need a life threatening event before most people realise that!
Yes CD this is very sad and I understand the anger felt at the failing of the hospitals involved. Will certainly take notice of the points you have made.
I wear a bracelet when out and about and have an emergency dialogue on my phone so if someone picks it up they see a message - ‘ if I am unable to speak la la la ‘ and emergency information accessible through the iPhone emergency Medical ID with details and cards in my purse and a Medical Passport which the charity Myaware send out to every registered person which gives professionals information and numbers to contact for further information because there is a lot of meds that would cause a crisis. They also give postcard size cards to carry which we give to the medics which has the most important information for immediate emergencies, I’ve not met a paramedic who has ever heard of it yet so I have given more than one away and had to explain further what it is.
The trouble is the first thing that 1st responders do is to measure O2 sats but the problem for Myasthenics is our sats will mostly be 100% but because it is muscle failure, we can’t breath out so CO2 & CO1 build up in our bodies and poisons - and there are absolutely no signs this is happening.
So I think I have done everything I could do but it is still a bit scary when you hear of people you know have this happen and die.
Thankfully I’ve only had a near crisis happen to me once, it can literally happen in moments, and my husband was there to advocate for me and once he eventually got through to them - they moved VERY quickly and had a crash team and senior consultant waiting at the door and I didn’t need intubation, just bi-pap for a few hours and extra meds.
You are amazing. You have prearranged dealing with potential errors costing your life. Do they know they need you to teach a class in their training programs? Perhaps write a book? As an American, we treat Doctors like God's. I don't....worked with them. My Grandmother who was a "healer" in Canada, would "not let any Damn doctor kill my granddaughter" stuck with me.
Oh, CD, how upsetting for all of the Myasthenia forum. Can some sort of alert be incorporated on a medical bracelet or pendant? Some have a paper insert, although quite a lot of info can be printed onto the metal as well.
Rosy - we tried to get it on This Morning for their rare disease spot - we all (I think it was about 1,000+) emailed the programme, all at the same time - not one of us even received an acknowledgement and that was just after another person died in hospital because she was given Magnesium IV ‘by mistake’ instead of saline??! And that was with her son advocating telling them not to give it to her - but he had left the ward to get some food and on return he found the drip up - she was intubated and in a coma - and the verdict was accidental death! He is still traumatised by it all.
I’m not even sure it is the NHS - just people who don’t listen or think they know more than we do - and believe me you need to be your own expert with Myasthenia or pay attention, or make judgements based on assumptions and general ignorance. Same thing happens in every country, unfortunately.
That's awful - it's all awful, so sorry to hear this. I hope her son sues the hospital. Sometimes they need extreme action just to be made to look at the way they do things...
So sorry to read your post it is so sad but as you point out in many cases avoidable if time is taken to listen or find out about the patient’s other conditions. It is a real uphill struggle to convey this information to first responders and/or medical staff once in hospital. In many cases the patient is not in a position to manage their own treatment.
My personal experience is that I am allergic to heart monitor stickers and pressure on my skin. On one occasion after handover staff explaining to staff in the CCU unit that I must not have heart monitor attached I had a nurse walk by and say “I must just get you wired up can’t understand why this has been forgotten”. I virtually had to have an argument to avoid being wired up.
I appreciate this is not life threatening but the resulting Urticaria is a living hell for weeks.
Oh it’s so frustrating isn’t it? I guess we all assume to a certain extent but I do wish there was an assumption that the first thing medics learn is to listen to the patient and ask open questions. How much easier would it have been if a question had been asked there instead?
Gosh, no wonder you're feeling sad and angry. I understand about both ocular myasthenia and myasthenia as someone very close to me is in danger of progressing from the first to the second. We definitely need more awareness of this condition ... so few people have even heard of it.
Thanks Hilly - it’s only when you know someone with this it really hits home. I am sorry someone close to you has this - the only thing harder to deal with is watching someone you are close to go through this stuff. I know it stresses my husband and he can get quite scared - but I need him to advocate for me. This is the best way you can help someone with Myasthenia. A lot of people think you are lazy, stupid, mentally impaired or a plain old fraud because of the extreme variability - looking great and being able to run, jump swim etc one minute and the next needing a wheelchair because you can’t stand. I can’t tell you the amount of abuse we get! I need someone to stand up for me at times...
I'm so sad to hear how it is for you CD. I get so angry when people make assumptions and say cruel things, but even worse also put lives at risk by making assumptions. I remember years ago when I was first put on an ace inhibitor, I was in a restaurant with friends, felt terribly ill and passed out. The restaurant owners took me outside and put me on a chair on the opposite side of the street assuming I was drunk (I'd only taken two sips). I sat there thinking I was going to die while crowds of people walked around me. If I knew then what I know now, that when starting those tablets you should maybe spend the day in bed I wouldn't have gone out at all. I was so angry that I returned to that restaurant a few days later to give them a piece of my mind, told them that my blood pressure had dipped dangerously low and I could have died, that they should instead have called an ambulance. Since then I've always made a point of checking on anyone who seems unwell, even if they appear drunk.
Re the person close to me, at the moment it's a case of medication and watchful waiting. Every time they choke on food or miss their step I'm hoping it's not that. If it is I shall try to be as helpful and supportive as your husband is.
Thinking of you and wishing you all the best with all you have to contend with re your health. Puts AF and all our little issues into perspective, it really does x
How very sad for you CD. Mostly, we don’t dwell on the worst that can happen and when we hear it happening it pulls us up with a jolt. I must admit because my husband is doing very well with his MG I just tend to forget he has it, thanks for reminding me of the dangers, I will be more aware.
Thanks - I am now also much more stable - last year was a very bad year but we never know how it will go. I had pneumonia in April & it took me a long time to recover and it’s when those sorts of things happen that it can exacerbate symptoms. Pleased your husband is doing so well. I hear my cleaner coughing - I’m out of here.....
Yes, unnecessary death is careless. Heartbreaking too. Our world is blessed to have you in it. I lost my Mom to cold, careless care in a rehab. We paid privately. Caring should be a mandatory assessment by professionals before anyone is hired to work with our human family.
I am healing emotionally since I shared my needs assessment on this site. The responses were like a mother's hugs. It feels like we are soldiers with PTSD, heard and cared about. Stereotyping is lazy, careless and quite unprofessional.
I am so sorry for your loss and that you had to experience that. It is traumatic and I would also guess that there maybe a sense of guilt - ‘I should have.....’. And of course everything is clear with hindsight and at the time, I am sure you thought you were doing what was best for your Mom.
I am so pleased you are finding that ‘talking’ about it helps and that you feel supported here. So many people knock the internet and forums like this because they only hear bad things - but I think this forum in particular is amazingly supportive and such lovely people that it helps restore your faith in others.
Thank you. Yes.....I cared for and planned for hundreds of patients did the same for my Mother years earlier when she stayed with me and my MD and home health aides assisted while I worked. When she needed rehabilitation, in hindsight, I wish I rejected inpatient for more intensive therapy to have more oversight. She's at peace now.
Big warm hugs being transported to your Heart n Mind.
So sorry to read this CD I too am in the Midlands and I have been petrified as the heat has been unrelenting and never in my 55 years have I experienced such a high and prolonged onslaught temperature wise. I only said to my husband a week ago as I lay on the bed with the curtains closed the fan on and a hot water bottle full of frozen water "if I make it through this summer I can make it through anything". Despite a couple of cooler days I haven't got back to my normal self and apparently the temperature is set to rise as the week goes on next week.
My concern too has been what will happen if I have to present myself at A and E because they seem pretty clueless all round with this condition. It does nothing for the confidence reading of incidences like this x
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feeling very depressed and fear of going to die 
A very unwelcome visitor
Feeling very downhearted :(
Very positive meeting with Rhythmologist
