I had an attack over a week ago. I ended up in HDU they where talking about ventilating me. All very scary. I was discharged on Thursday evening. I wasn't feeling great on discharge my pf before neb was 50% of best going up to 70% after neb. They are about the same now.
I'm under the Royal Brompton and have contact them but they can't see me for another 9days. I don't know what to do. I'm so breathless. I'm not worse than on discharge but I'm no better. My lungs ache. My back hurts. I'm exhausted.
I'm on pred I've been on high dose for around a month. My GP wants to increase it to 50mg but the problem is it effects my mental health. I become a reck. It also affects my diabetes. My maintenance dose of pred is 10mg. I don't know what to do until I'm seen at Rbh. I feel like crap. I'm regularly nebbing. I don't know what else to do. Any one have any ideas? I just feel awful.
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Das_roots
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Sorry to hear you've been having such a hard time.
Are you still in high dose steroids or are you back down to 10mg at the moment? (If you're back down to 10mg Id go with increasing up again)
Id worry that you're getting tired. Could you be seen at your local hospital A&E & maybe the doctors there could liaise with the Brompton, or could your GP speak to docs at the Brompton for advice while you're waiting to see them?
Or does the Brompton give you a number for a specialist nurse in their clinic to ring for advice?
When was the last time you were seen by the endo/diabetes clinic? The steroids, long-term, are something worth discussing with them. Short-term, I'd say book an appointment with your GP. Also remember that it takes time to get better; I had a life-threatening attack in summer and was in hospital for a week and they wouldn't let me out until I was at 75% personal best, and I didn't go back to normal for a couple of weeks. I had to go back-to-back with Pred, and this was additional to the course I had been on for a fortnight already so yeah it takes a while, and I wasn't in HDU (narrowly missed it, ended up in Resus instead) so it probably takes longer.
Feeling really overwhelmed. My chest is feeling slightly better still symptomatic though. Tight chest, sob and cough. I feel really down with it all. Being seen at Rbh on Thursday. Just want to feel better.
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