Asthma

Asthma

Hi I'm new to this so sorry if not make any sense .im 43 and have severe asthma I've had it since I was 18minths old but I have a daily struggle with it I'm on constant steroids and go into the royal brompton hospital in London regularly for iv hydrocortisone treatment every two months I get very out of breath walking or doing any activities I have home nebuliser and go into bath hospital a lot as well life is hard as well asylum all well know I am married with 3 grown up children 17-22-25 I am tablets for my bones as well and have lots of pain in my joints and my back use a stick to walk with but I just get on with it and take day by day and that's me

22 Replies

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  • It is a daily battle isn't it Tracey? I am nowhere near as bad as you - but like all of us have my moments. You are doing well. I too was diagnosed at about 2.

    Love and hugs

    Sian

    xoxoxo

  • Hi yea it is I'm waiting to hear about surgery I can have in London its bronchial plasma where they burn of some of stuff of my muscles but I'm not hopeful as my blood vessels are small they said so not sure if they can do it yet I have a lot of mucus on the lungs that they can't remove and every time I get and infection makes it worse we have tried everything out there nothing left so I'm hoppin that I can have this and it helps il try anything once worth ago mine got worse in 2008 I got pumonia bad and been struggling bad since then it's nice to talk to people on here who understands what we are going through

  • Hi Tracey

    I am a rbh patient as well and had the thermoplasty a year and a half ago.. I'm not sure if you saw the video but if you did and the woman had stripy slippers on, that was me. I have to say it was bloody painful and has left me with a permenant pain in the back of my right lung and did not work on me. If you go ahead with it good luck and I really hope it helps you.

    Amanda.

  • Hi thanks for the information I'm a it nervous about it sorry it didn't work for u hope they can help u might even no u I'm in there a lot on Victoria ward x

  • Hi Tracey

    Sorry to hear about your problems with the Asthma, just hope you can work trough them and live a happy life. Hope your boys help you out with the problems.

    Take care and keep fighting it all the time.

  • Hi yea there good and my daughter were more like friends do lots together take a very day as it come ask see it there's always someone worse off than me

  • Sounds very hard. Not much I can add to the other comments. But this site is brilliant support-wise and with information and advice. From what I've heard the RBH is brilliant.

    love and gentle hugs

    K xxx

  • Hi yea the RBH is great hospital couldn't get it through I don't think if it wasn't for there help always at the end of a phone if need them x

  • Oh it's such a struggle at times isn't it.

    I've currently got a very nasty chest infection at the moment and as you can imagine my asthma is bad because of it I can't help feeling a little bit fed up with it all, your positive message has really helped me to get things back into perspective.

    Thank you.

  • Very much like you. Use to attend RBH regularly under Professor Robinson, and have been inpatient as well. Fortunately, his senior Reg, became Consultant at my local Hospital, so did not have to make 34 mile round trip to RBH. Been on preds for 30 years, anything from maintenance dose of 5mg upto 80mg, which has given me ostioporosis and type 2 diabetes. Like you, have problems walking, and as not allowed to drive, because of mild epilepsy,, thought to have been caused by oxygen shortage, caused by severe asthmatic episodes , when younger, so use mobility scooter to get around. Bus stop too far to walk. It gets me to my beloved Watford FC, where I can sit, in comfort, near pitch, and watch match, except in cold weather, and we know what cold air does to our lungs. Downsized from large house, to bungalow, as finding size, large garden, and stairs, a problem.

  • So sorry to hear what pain ur in its not nice I'm on 40mg pred mantainance everyday but back up to 40mg at the moment as not to good again I'm under prof Durham at RBH he's really nice I'm using morphine patched at the moment as well as everything els I slipped over and they think I have broken a small rib bone so in a lot of pain with it at the moment hope, it live in a 3 bedroom house I have a stair lift for the stairs only 43 but feel like 100 it's horrible but got to keep going and as for sitting I know the feeling it's hurts I have a extra cushion behind me hope u don't struggle to much got my bone scan on Friday c what that's showing now take care x

  • Yea I have a 3 hour drive up there they put transport for me as I was always bad by the time I got it the hospital I live in Wiltshire it's a long drive but it's worth it but lately ever time I go up they tend to keep me in so I always take a case with me now just in case b prepared x

  • Hi Tracey

    I am really feeling for you and next time I feel so rubbish I will remember you

    My Asthma is prone to a build up of mucus on my chest and I am adamant that this Autumn and Winter I will be looking to my GP to help me with this as last year was awful. Like you I live in Wiltshire (where are you) and like you I have three grown up kids too who are just great when I am ill and know what to do when it all goes pear-shaped. RBH sounds like a refuge for you when you are so ill and their reputation is amazing. So if you want any local support let me know!

    x

  • I'm in corsham where r u yea the hospital is brill wouldn't b with out them x

  • Near Devizes so we will have to have a coffee!!!

  • Yea that would b good will have to sorry something out b good to meet with u

  • Hi Tracey1972

    I can only think how bad this will be for you.

    I think it must be so scary and sounds like you have lots of treatment.

    Keep Brave

    B

  • Yea just a few got bag full of tablets fell over today and broke a rib in agony now doc has give me loads pain killers and mor morphine patches

  • Hi Tracey, I'm Gefrin better known as Jane. Thanks for your message. I am 65 and have had severe brittle asthma since I was 12 months old and have the same problems as you. Osteoporosis as a result of steroid use. Sore joints etc. Steroids also gave me cataracts but this was a positive experience as when they were dealt with the surgeons put prescriptions lenses into my eyes and now I do not need glasses! Have had 4 hospital admits this year. Consultant has put me on Uniphyllin to see if that helps and it does seem to be making a difference. I'm keeping my fingers crossed.

    Have got small portable Omron and Microelite nebulisers which are great as I can take the car out and go for a run without worrying too much.

    Hope this helps. Keep in touch. Jane x

  • Hi yea the steroids got a lot to answer to I have tried most of the stuff out there but not a lot left now they have said as long as I have access to hospitals and doctors I been in 3 times this year and been in London RBH a few times I have hydrocortisone IV up there every 2 months got to go in again in October for ten days .i have broke a rib yesterday after I fell over in the garden . Where abouts do u live I'm in corsham ,Wiltshire

  • I am in Sheffield. It is very hilly so difficult to do any walking. Sorry to hear about your fall, cracked ribs are so painful without adding breathing problems to the problem. I really feel for you. Take care. Jane x

  • Hi my sister lives that way so i no what u mean hills r a nightmare u go down one u got to back up the other side yea ribs hurting bad take care x

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