Fed up ?

I've just been discharged after a 5 week spell in Hosp with my asthma , on hydrocortisone , then 50 mg Steriods ( gradually weaning ) , nebs , iv AMINPHYLLINE , MAGNISUM etc etc , iv antibiotics and optiflow oxygen therapy . I was allows HIME on 6 hrly 5 mg sal nebs and 500 mcg atronrvt as it was thought I'd be better at home as al, I was having in Hosp,was nebs and 5 weeks was getting me down , but I've started coughing again abd am still waking during the night . No energy and totally weak ,

What do I do ?????

I'm coping but scared and tired and just stressed out with my asthma . I have been given oramorph to help with the breathing and that does help but leaves me feel very "foggy"

13 Replies

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  • Sorry that you are having such a horrible time.

    I do hope you start to feel better soon.

    Take very great care.

  • Thank you x

  • I hope you soon are on the mend, it sounds like you've had an awful time. Try not to get stressed - easier said than done I know 😉 It will take time for you to recover, so be kind to yourself, gIve yourself time to heal. I think we all expect just to bounce back, but it takes time for your body to recover. If you feel that you are not improving, then make sure you go to your doctor.

    BiG HUGS for you xxx❤️

  • Thank you , you care and kind words mean a lot xxx

  • I hope you're under the care of a consultant and not just a gp? If you haven't seen a respiratory specialist, you need to. Have you had MRI, contrast CT, allergy tests, etc etc?

  • Yes had all the test possible , used to be followed up by Royal Brompton , I have severe brittle asthma and had all the test s and scans under the sun ,, thank you for your concern xx

  • Sorry to hear you're having such a bad time. I've had bad asthma all my life and my 18yr old son is a brittle asthmatic, so we know how rotten it is. It takes a while for the body to recover from such a bad bout of asthma. Hope you are able to rest and just take things really gently. All the best and I hope things improve for you. xx

  • I so know how u feel I go through the same just home after a 4 week admission it's just a night mare until I came on here I thought I was an alien alone. My asthma is starting to stress me out to I have had great comfort reading others posts and get more people have asthma just like mine and know what it's like. Hope your doing ok xx

  • Oh poor you , yes I'm doing ok now ,just s slow road , reading posts in here really hopes as it makes you realise you are not alone ,

    Thank you for your care and hope you are doing ok ??!

  • what a terrible time you are having. my heart goes out to you as I watch my daughter struggle dreadfully to get back on her feet after long admissions and heavy treatment. You are not alone, though I know it feels like it. Missing out on life, feeling breathless, wheezy and tired all the time is incredibly challenging. I hope you have some lovely people in your life to take care of you while you recover. Maybe after a spell at home you might need to seek help again if still struggling.

  • I am so lucky that I have a wonderful mum who looks after me and great family and friends for support , and also thanks for your support , I've found the words of understanding and support on this site so encouraging and supportive ,

    I really hope your daughter is doing ok at the moment xx thank you

  • My daughter is 15 and has had around 20 admissions in about 18months due to severe asthma and problems with small airways closing up. She was the same, on magnesium infusions and Aminophillyn. In fact still on Aminophillyn and CPAP at every admission. Her lung function never maintains for more than about 3 weeks before it all starts slowly heading downhill. she just had her first Xolair injections last week and we are desperately hoping this will help. I can totally relate, it's a very, very long path to get better and no guarantee that she will stay better as we seem to be in this awful cycle. We are learning to make the most of the good days where possible. Totally tears your life apart in every sense. We had a very low day yesterday which is why I sought out this forum! I keep trying to keep in mind that there are some very small things that have improved over time. For example for years docs didn't understand what was going on with her respiratory system, now we know more and more about it after great care from a wonderful team, I try and remember that we are further forward than we were. Not much but it helps!

  • My heart goes out to you , 15 is so young, I'm 47 ! I don't qualify for xolair but I really hope it works for your daughter although it quite invasive , have they ever tried s/c bricanyl ?? I had that when I was younger and it did make a big difference , the one hope you have and I pray for you that it happens that it could be a 7 year bad patch - I know not much consultation as she is 15 so could be the first year out of 7 but they do say asthma runs in 7 year cycles and I did find that when I was younger . You need to press with your hospital to perhaps refer you to specialist centres - either the Brompton or Birmingham heartlands , I was at the age of 25 refereed to the Brompton who made strides in my care but circumstances changed and my registrar fro pm then became my local consultant so my care was transferred , but then I moved so lost that connection but it has been discussed that I will be referred back there l I don't have Cpap as our local hospital has optiflow which is pressured oxygen which is humidified and given via nasal canulation but at high concentrations and also offers support like cpap , far better as you can drink and take nebs and is less traumatic . Sending you and your daughter lots of love and prayers , it's hard , and a lonely place . Wherecabouts do you live ?

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