What questions do I ask???

[Skatergirl1]

Hi guys, seeing s consultant for the first time on Friday and I'm not sure of what questions I should be asking? Advice will be greatly appreciated.....I'm not good at opening up about my feelings or symptoms ...have ostrich syndrome!! X

[powderpuff]

If you’re expecting any test/spiro/scan results then they’ll discuss those with you. Really, until you know those it’s probably impossible to know how to respond.

I had my first consult last March & it was pretty thorough regarding info about the disease & what my aims should be with exercise etc. Explanations were good in response to my questions with various recommendations to my GP.

I hope 🤞 it all goes well for you!

[Skatergirl1 in reply to powderpuff]

No....I have only had Spiro test in the last year and have asked for ct scan as no one can answer what is wrong with my lungs, was on record something shown on an xray...but said x ray disappeared!!! Lots of errors have been made by the doctors over the past 6/7 years and they have ignored them...now I want anseers xx

[powderpuff in reply to Skatergirl1]

Blimey! Doesn’t exactly fill you with confidence does it - hidious after so long in fact! Sounds like a CT would be preferable if an X-ray only showed ‘something’ - perhaps that’s one thing you could ask about if there’s still confusion.

[Skatergirl1 in reply to powderpuff]

Thank you...yes I would like to know what is wrong with my lungs instead of umbrella term copd, and then know what if anythingcan be done for the future. Already severe with Fev1 at 43% xx

[skischool]

Given you have a specific spirometry result you could ask if your condition is obstructive or restrictive,does it incline towards emphysema or more on the bronchial asthmatic side of the copd equation and how he/she intends to implement a care plan and what will exist within that care plan.also what procedures exist to improve your condition and would you be a candidate for any of them and of course the old chestnut will you please refer me for a PR course as we always chuck that one in.

Wishing you the best of luck with your shopping list.

Ski's and Scruff's x

[Skatergirl1 in reply to skischool]

Thanks ski's.....you have given me something to add to my list xx

[Shazrab in reply to skischool]

Great advice skis 👌

[annienell]

There isn't much time before Friday, but you could try ringing the BLF Helpline tomorrow (03000 030 555) and ask them the same question. They are very good at this kind of thing.

I would also advise you to take someone with you to your appointment, so you have another pair of ears listening to what you are being told. Perhaps they could also take notes of what's said as a reminder for you.

I hope all goes well on Friday and you get the answers you need.

[Skatergirl1 in reply to annienell]

Thank you for your reply, I have taken on board your comments, thank you again. Xx

[jennycherrie]

Hi

Your experience sounds similar to mine, although I have a different diagnosis. I would strongly suggest asking for copies of all reports/results as you go along. I have quite a large medical file now and on several occasions have had to give a consultant a copy of something because it has gone missing. Taking someone with you is also good advice because it's easy to forget or overlook something that is said. The best advice I ever had from this site was to be pro-active and not be daunted when faced with the 'experts'. It has taken six years to get my diagnosis and I have more tests ahead of me, but I feel more in control now. Good luck!

[Skatergirl1 in reply to jennycherrie]

Thank you for your reply, very valid points, thanks again xx

[pepparuby1]

A consultant! Wow I’ve been diagnosed with Copd for 9 years never been offered a consultation with a consultant? I did pay for a private consultant to confirm my diagnosis but since then only seen the nurse at the surgery ????

I did clinical trials at the London heart and lung centre for about 5 years and that was really helpful but never seen a consultant about my journey going forward?

[Skatergirl1 in reply to pepparuby1]

Thank you for your reply....I was not offered a consultant, I asked to see ome. They couldn't refuse as it turns out I should of been diagnosed years ago, but due to doctors errors lots of things were overlooked. I am now at the severe stage and want answers xx

[Carnival567]

Southmead hospital in Bristol has a page on its website called ‘ask 3 questions ‘ well worth looking at for any hospital appointment

[Skatergirl1 in reply to Carnival567]

Thank you, I will look them up xx

[les4560]

hi there wondered where you were good to hear from you-well I wanted to tell you something you mentioned a ct scan when you get one you might ask for a second opinion I had one and they thought they saw a trace of emphysema so need less to say I was a basket case saw my pumonolagist 2 months and took my disc with me (100s of miles from the town I live in) and he said it was so small of a trace that he almost missed it but he also thought it MIGHT be emp. all my other test always came out good -well I was really scared I thought my life was over and thought all kinds of scary stuff couldn't eat,sleep and was really down and thought how unfair because I never smoked well 3 days later one of his nurses called me and said that my disc was read by another pulmonolagist and i t was NOT what they though, it had to do with my asthma,so please get a second opinion!

[Skatergirl1 in reply to les4560]

Hi Les, good to hear from you and thank you for responding. I have emphysema and a catalogue of errors, just want answers and explanations now....apparently should have been diagnosed years ago, but test and ray results went missing xx

[les4560]

well I hope you get to the bottom of things soon

[Skatergirl1 in reply to les4560]

Thank you xx

[Hidden]

Just found this site Pulmonary Associats 9 Questions to ask your Pulmonologist

1 can u explain the tests you will be running

2 what's my full diagnosis

3 what is causing it worsening my symptoms

4 what is an appropriate level of fitness for me

5 how often should I be screened for changes in my condition

6 are you prescribing me anything new for symptoms

7 diet and this condition

8 are there any restrictions for my diagnosis

9 what should I do if my symptoms increase

Might not be suitable for you but hope it's of some use xx all the best Maz

[Skatergirl1 in reply to Hidden]

Thank you Maz, I will add them to my list....I think the consultant will think he's on mastermind by the time I'm finished lol xx

[Hidden in reply to Skatergirl1]

You do that. Hey mastermind for copd sounds interesting ha h lol Maz