Ecmo 2016 ...ventilated every 6 months from then.even tho on.biologics and 40mg pred daily...Now 2023 on benra and 17.5mg pred with pheno over 200 ...
Not.been.in.itu.since 2019 ...but crap day by day ...all energy in mornings then no energy etc from.approx 3pm.
Life shit
But.my.concern.is my severe asthma team are crap ...no.help no.advice ..
What do I do
I.am.actually looking at solicitors as pals ...useless
See if you can get moved to a different asthma centre with new ideas
I hope you get better … it’s very hard to get a good team to work with you if they can’t manage your asthma ….. my daughters team is hiding her uncontrolled asthma as they have made mistakes in her case… I don’t know but my experience so far isn’t good therefore I can’t trust once something wrong has been said in your record all the doctors do the same … I would suggest though complaints team at your hospital has strict guidelines than pals … pals are basically same people who work with them and have to liaise on your behalf …make a formal complaint that’s different procedure…..you will have to research your own options and also if your asthma isn’t controllable and preds daily is probably giving you side effects try and look for alternative therapies aswell like herbal and homeopath along with these so you could be on less medications and improve health.. never rely on the team only do your own research.. hope it helps
Hi My_fairy, I appreciate where you're coming from, as someone who also has had a lot of frustrations with my severe asthma team.
But please be cautious about advising people to use herbal or homeopathic remedies, even if they seem to help/be ok for you and your daughter. Especially in the context of suggesting they could help someone be on less medication - even if that's medication for side effects.
I completely understand that doctors are not always very helpful and can leave us completely at sea, and you're trying to help. However, herbal remedies are often not well regulated. And even if they are, they can interact with prescription medication, and can trigger asthma for some people. So please do be cautious about suggesting them, or about mentioning that you use them in a way that's likely to encourage people to do the same.
Hi I agree with you. I am a nurse and unfortunately covid has caused me to have asthma. I have been told by my gp and various consultants not to take over the counter medication for asthma as it can make it worse.As a result I always ask first if it is okay to take a particular medication
If you know of somewhere what has better treatment ask to change. If you know of an individual consultant maybe worth paying for an appointment to see them. Research your area or even a bit further. You have nothing to lose if you feeling so unwell. Sorry you're having an awful time. xx
Advice PLEASE
Feeling Rubbish on Steroids
