Dont get the call cause of high steriods

[skylas]

As anyone not been called in if they have lungs for you because of being on high doses of steroids all the time . I'm on 40mg a day again n got to b on 15mg or less .each time I get down my breathing is really really very bad . So back up on the steriods x

[Caspiana]

Yes, Cheryl this is standard practice for people waiting for any transplant, not just lungs. You must be on 15mg or less or they will suspend you from the list until you reduce to that number. If you are on too much steroids during the time of transplant your body will not respond as well to the steroids they give you after the operation . The best thing to do now is get over your infection and slowly decrease on your steroids (with your doctor's guidance). It will take time, but you will get there . Take care. xx 👋💕

[skylas in reply to Caspiana]

Aw I hope so as soon as I get to 15 my breathing really really terrible so they always up them again seems like I'm goin round in circles hopefully will get there the sooner the better x thanks for texin back its 10 past 1 in the mornin so I'm going bed now or try to cause as u no u cant sleep well on steriods x did u take anything to help u sleep while on them x

[katieoxo60]

I agree with you , when ever they change my inhalers I end up with a flare up of my lung condition. Seems you have a similar problem , its not easy to get a happy medium so we take the least steroids possible without flare ups. So don't be too concerned as it sounds like you do at least try new options.

[skylas in reply to katieoxo60]

Aw cant seem to get it rite every time I go lower I get flare up so go higher x goin round in circles x it's so frustrating int it xxxx thanks for messaging x

[katieoxo60 in reply to skylas]

It is frustrating, but hope my post helped.

[skylas in reply to katieoxo60]

Xxxxx

[Bkin]

I think there is also a higher risk of bleeding to death skylas if you are on high doses of steroids before an operation. So sorry you are having to go through this. Ask your consultant if a way can be found around your predicament.

Best wishes 2 U

[skylas in reply to Bkin]

Yea I will contact them on monday c what they say x thanks for messaging x

[Thomac]

Is it your GP that is increasing your steroid? Perhaps you could discuss this with your transplant centre they may have a solution. As an example my husband also takes methotrexate which reduced his reliance on steroids so there mdd as y be something else you could take.

[skylas in reply to Thomac]

Aw thanks yea will ask my transplant team about them. It's my pulmonary nurse who puts me on the steriods because she comes out to me when my breathing bad x