One (or more) steps forward- at last!

[TeachKat]

Some 17 months after being diagnosed with severe asthma, I have finally had my first hospital respiratory appointment! Up to now, despite being on many medications and continuous steroids since January, I had not even had any blood tests or chest x-ray.

So on Friday I saw an asthma nurse, physio and consultant and had bloods taken, a chest x-ray and other tests booked. The consultant was very approachable and helpful, and agreed, to my relief, that the priority is to get off or at least greatly reduce the steroids (my gp had told me not to try to reduce them and to stay on 30mg indefinitely).

I cannot tell you how much better it feels to have a plan and to see a way forward, even if it is slow and maybe difficult. The possibility of a biological was also mentioned. It was so good to be listened to - I was starting to wonder if it was all in my head and that I was imagining things or fussing about minor problems!

This may be my first non- moaning post! 🎉

[madonbrew]

Hey Rosemary,

That is so good that you had a really positive experience with this consultant and that he listened to you properly and that you’ve got a plan in place! Doesn’t it just make so much difference when someone has listened and is doing something to help!!!

Was this appointment a secondary or tertiary hospital? I’m so glad there is finally someone on your side and working to help you!!!!

Yay 🎉 🎉 🎉

[TeachKat in reply to madonbrew]

Hi Dee - it’s secondary - I was seen at Honiton Hospital which is connected to the RD&E, same staff etc, presumably because the waiting list was shorter. I think for Exeter the nearest tertiary centres are Southampton or London. I’m just happy that I’m in the system now! Rosemary xx

[watergazer]

Some positive steps forward now for you Teachkat. Glad that you finally have had those much needed tests and an empathetic ear 🤞your life at school is getting better. X🤗Anita

[TeachKat in reply to watergazer]

Dear Anita, you are always so supportive and kind! School is what it is - with today’s relaxation of restrictions it’s going to be even harder to maintain any social distancing but, thankfully, cases are extremely low here at the moment 🤞. I do feel much more positive now that I’m not relying solely on my gp. The consultant was looking in my notes for the results of previous tests and obviously couldn’t find any - he said he was, ‘somewhat perplexed ‘ by this!

Rosemary x

[madonbrew in reply to TeachKat]

Interesting when consultants try checking up on things that obviously haven’t been done properly! But at least he’s sorting you now! When do you have to see him again?

[TeachKat in reply to madonbrew]

I’m not sure exactly- but probably about a month, or when I get down to 10mg a day of prednisolone (🤞). I forgot to say, he’s also requested a dexa scan!

[twinkly29 in reply to TeachKat]

I'm really glad he was perplexed 😅 Your GP is weird! Glad you have a plan too!

[TeachKat in reply to twinkly29]

Thank you - the trouble with the gp is that he’s also very kind and nice, which makes it harder to argue forcefully with him.

[watergazer in reply to TeachKat]

Hope all goes well for you Rosemary Your consultant seems great xx

[Hidden]

Hoping you finally get some forward and positive progress from now on. My Consultant has a very tactful turn of phrase when criticising my GPs! He always sends me a copy of everything he writes to the surgery, which is really useful as I can't be fudged by the GP anymore.

[Pipsqueak77]

I am glad you have managed to get to see someone...🤞they are helpful.Just for info... the RD and E is a tertiary asthma hospital.. as is Derriford in Plymouth.

Hope all goes well!

👍😊

[TeachKat in reply to Pipsqueak77]

Thank you! I was puzzled about that - I was told by a nurse that it was secondary and that I would have to be referred to Southampton for a tertiary hospital. I thought it seemed odd - but she was very firm about it. X

[Jollygood]

Great to hear some positive news! Hope you get some answers and see some improvement soon xx

[TeachKat in reply to Jollygood]

Thank you! 🤞

[Ted201]

Very uplifting to see your post full of hope. Agree to try to greatly reduce the steroids if you can - I also have been on since January 2021 and am now down to 6mg/day. I did start a biologic (Dupilumab) which I credit with being able to reduce the prednisone, but nonetheless, will be great if you can get significantly lower than 30mg/day if your asthma stays in check.....best of luck!