Where to go from here?

[Melanie1989]

Hi everyone,

I finally saw my actual consultant today as opposed to one of his team. I thought this was good news, but apparently not! I have had repeated asthma attacks resulting in hospitilsation but he wasnt even aware of this... previous visits i was told if my asthma did not improve then another inhaler would be added. He has stated im to young at 29 to step up treatment!

He looked at my chest xray and thought he saw a shadow but said oh if a n e say its clear then it must be.. he honestly spoke more to me about my uni degree than my asthma and didnt even say bye to me, he just wondered off. Honestly the whole visit was bizzare! I havent got to go back for 8 months im just being left like this, and was basically told i have to live with it. I feel like such a burden right now..

Sorry for the rant i just am so fed up right now, and dont know where to go from here..

[EmmaF91 Community Ambassador]

Hi

Sorry to hear about what’s going on!

I’d ask to be transferred to a different consultant for a second opinion. I’m 27 with severe asthma (no other conditions) and I’m under a specialist centre on monthly injections for my asthma so I don’t understand him saying you’re too young to step up!

I suggest you go back to your GP and explain what’s happened!

Some consultants are a bit rubbish with asthma (most local ones seem to specialise in COPD in my experience) and you really have to kick up a stink to get anywhere.

Most people have the potential to get symptom free on the right meds so keep pushing until you get control or ask why not if they say no to something (and if you disagree say so).

See what your GP says and ask to see a different consultant for a second opinion

You’re not alone in this and it’s normal to feel fed up when the professions ignore what’s going on! Good luck and I hope you get some support from your GP (and new Cons!)

[Melanie1989 in reply to EmmaF91]

Hi Emma thanks for your reply.

I am definetly going to my g.p. I have noticed a lot of people on various meds younger than me, so his answer was baffling. I will look at getting another consultant, its just i hate kicking up a fuss!

[hypercat54 in reply to Melanie1989]

Kick up a fuss, and especially kick your lousy consultant! I have learnt with any chronic illness you have to be proactive. Much easier said then done I know but you reach a point where you aren't going to take any more s***! Can you take someone with you as we often feel braver then.

I hope you find some answers and get some proper help. x

[Melanie1989 in reply to hypercat54]

Thankyou! I think i will take someone in with me next time as my brain turns to mush when im in there. Im a lot braver afterwards 😂

[hypercat54 in reply to Melanie1989]

Aren't we all? x

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

I have a secondary condition it seems which makes me immediately babble like an idiot in front of anyone related to respiratory medicine. I think I'd rather visit the dentist for fillings, honestly.

[Js706]

I agree with Emma, age isn’t a valid reason to not stop up treatment if you need it! I’m 23 and on all the inhalers/oral treatments and a biological therapy!

I’d definitely go back to your GP and have a chat through things. It may also be worth making sure that you’re copied in to receive your clinic letters - as you never know there might be a bit more of a plan on there when it comes through (I’ve had a few appointments where I’ve left at a bit of a loss and then found quite a good plan laid out on the letter when it arrived)

[Melanie1989 in reply to Js706]

Hi js706, thanks for your reply. Luckily i can access all my medical records online for g.p, so have seen previous clinical letters forwarded to him. Normally they are pretty good, so may wait and see what this letter says before making an appointment.

[Js706 in reply to Melanie1989]

Depends how long the wait normally is for your letters! But hopefully they’ll have a bit more of a plan on it

[Lysistrata Administrator Community Ambassador]

Not sure I have much to add but entirely agree with Emma and Js706...what's he smoking?! I'm used to the more dismissive type where they tell you you don't have asthma because [insert stupid unscientific reason here], but this is hardly better given that the age thing is completely ridiculous ans they've not bothered to consider in any way that you need something doing.

I'm not good at complaining but I would almost be tempted to complain to PALS after this given the lack of action despite admisisons, not doing a proper consultation and the ridiculous age thing.

Have you ever got anything useful out of the rest of the team? I agree on trying to find a more specialist cons ans ideally a specialised asthma clinic if you can as it sounds like this one in general is getting you nowhere ans like Emma says, probably they aren't familiar with asthma. I know you're a bit of a unicorn like me with some similarities which makes it harder at a local level as they don't know how to deal with you.

Also worth chatting it through with the AUK nurses perhaps? I find it helpful to be able to talk it all through with someone who listens ans has expertise.

[Melanie1989]

Hi Lysistrata,

Yep fellow weird asthmatic! The rest of the team have been fantastic, and they have attempted to step up treatment before but he has always managed to block it. First he said wait and see, then blamed my house renovations and now its my age. I have been like this for 2 years... The weird thing is i thought he would be good as he trained at brompton hospital but 🤷‍♀️. Will give AUK a ring as they are always helpful. They have often told me i should be seen at a specialist, im just always wary about kicking up a fuss as i know there are people worse off than me. Will hopefully discuss with my g.p to.

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

Wow he's a king of the excuses! What next, the dog ate your notes/discharge summaries? Glad the others have been good but I find Brompton can be quite variable after being there and so can specialists!

I hope the letter is useful and you find a way round it. I know what you mean about feeling not bad enough as I permanently feel that way (often due to bad cons experiences), but even if you're not camped out in ITU, you're still not controlled and you deserve that to be addressed. Your situation definitely merits something doing according to various guidelines.

[Melanie1989]

Ha ha the dog ate my notes did me make me laugh😂 he sure does make a lot of excuses! Fingers crossed my g.p can help!

[robert1957]

hello Melanie please research magnesium deficiency and symptoms of magnesium deficiency also the benefits of vitamins d3 k2mk7 good luck

[lakelover]

Hi, not much to add except please don't think you're a burden. No one chooses to be ill & spend their precious time at doctors, hospitals etc. We can't help the hand we are dealt at birth or throughout life. Some things we can improve, others we can't. You're as entitled as the next person to feel well!

[Melanie1989 in reply to lakelover]

Thankyou! I think its because i just feel like im either at hospital or the g.p surgery! It is especially difficult when i dont get given a set plan or a reason as to why im like this. It makes me wonder if im the problem!