New hear and need a little bit of guidence

Hello everyone.

I found this forum after loking for somewhere i could get some advice from others who are in similar situations or suffer from asthma rather than advice from medical professionals.

I had bettre give a little bit of background. I myslef have asthma but it is reletivily well controlled and doesn not bother me too often. However my 21 year old daughter has severe asthma and it is causing us all concern. She has three different consultants in differen places as she is at univeristy but she is spending more and more time in hospital and her chest does not seem to be getting any better despite the consultants chnaging her medication and tweaking things here and there. The most worrying part is that myself and my wife think she is in denial slightly about the severity of her asthma as she has the attitude that she is not going to let it get in the way of leading her life which is all very well but there is a medium with this as with the state her chest is it will probably interfere more and more the more she pushes to live a life which she considers she would live without the asthma. The problem is that neither my wife nor i know how to aproach her over this. The consultants have spoken to her about slowing down but they fall out over it. We have spoken to her consultants to try and understnad better how she feels but we are at a loss.

The other thing that as with any parent is that the number of different medications she is taking ranign from tablets to inhalers and nebulisers and nose sprays and all sorts. She has been on long term steriods aswell which is really concerning us. Is any one else taking steriods like this.

Any advice would be much appreciated. I ahve little knowledge about severe asthma as mine is very well controlled but would apprciate a little guidence.

Sorry for the length of the message

Thank you

Rob

4 Replies

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  • hi you need to speak to disco dolly who posts on here sometimes as she is at uni and has several consultants and has spent several periods in hospital both at home and while at uni. if you find one of her posts on the camping thread you can pm her. sounds like your daughter cud do with chatting to someone in a similar situation.

  • Hi,

    Thank you for your reply. I got a message from disco dolly and will message her. thank you for pointing me in the right direction.

    Rob

  • hi rob,

    I have posted on your daughter's thread too. I am the same age as her and at uni too and have consultants in diff places. Disco dolly is a good person to PM too.

    I can totally engage with the denial as i def was last year.

  • Hi there rob, it must be hard to be the parent watching something like this. I am now working, but while at uni had bad asthma, and struggled to balance living a student life and dealing with the asthma. Something I would say is that it is normal to want to do everything she would have done, and that this time of growning up and finding your independance is recognised to be more difficult in people with long term health issues. I have gradually come to the realisation that I can't necessarily do everything that I might want to, but also that I can do a lot of the things that people think I shouldn't, I just need longer or more thought put in before hand to make sure it is safe. So I still go camping wiht my guides, but accept that I might need to come home, so make sure I am not needed in the numbers of leaders there, etc. It is completely normal at this age to not fully accept the limitations illness puts on you, and to test the boundaries, as young people do in every situation.

    As for the medication, while ideally she wouldn't need all these drugs, if she does then it is better to take them than to try to cope without. While longterm steroids do have side effects, if they are necessary now then all you can do is make sure she is on appropriate drugs to limit those long term effects - bone protection etc.

    Hope you find some useful support here.

    Sarah

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