Questions to ask Consultant?

[mary1956]

I have a Consultant appointment on the 28th January regarding my diagnosis of IPF. I have a lung function test before seeing him. I also had a lung function test in September. I'm not sure what questions I should be asking him?. Can he give me a prognosis this early? Can he say how badly affected I am based on the tests and CT scan. I'm at a loss as to what information they can give me and don't want to come away from there and then thinking of things I should have asked? Would welcome advise.

[Mavary]

Hi Mary1956. I can only go by what happened with my Husband. They will call you in say six monthly to check how your breathing is doing with the lung function tests. I t may be yearly if it is progressing slowly. I would be asking questions like are they anywhere near a cure also could you take Perfenidone which they think can slow the illness. You could ask how badly you are effected and maybe ask if you could see the scan and if he would explain it to you. You may want to ask how the illness progresses and what to expect. I can't think of anything else at the moment. X

[mary1956 in reply to Mavary]

Thank you, that's a huge help

[Hidden]

Hi Mary,I think Mavary covered it all well.The only thing I could add,is every time you think of something to ask,do write it down,in a little notebook,& take it with you! That way you won't kick yourself after,for forgetting something! Good luck,

Love Wendells xxx

[mary1956 in reply to Hidden]

Just bought my little black book!. Thank you.

[mattcass]

Hi Mary Dont let the word IPF worry you to much we all know it's a more aggresive lung disease but again we all have diffferent lungs even when they have all your results in they will be in a position to tell you you what you need to know. There are people out there who have been told they have IPF and a bit down the road they are told you might not have it.They can only compare you with other IPF sufferers and as I said we are all different.Good Luck with your tests.Matt

[mary1956 in reply to mattcass]

Thanks for replying. Have been in limbo for weeks, so will be glad to get some answers; busy making a list of questions.

[Hidden]

You might want to check BLFs page on this Mary, several titles from the link below:

blf.org.uk/Search?query=get...

Page titles such as "Getting the best from your doctor" (there are two pdf downloads from the above page link also).

Your consultant may want to send you for further tests sometimes cardiac tests are included. The CT scan does show the lung damage, you could ask about the extent of that damage and ask how best it can be managed, with the right medicines etc. ask about referral to a pulmonary rehabilitation course, if its not mentioned.

Make a list of some of the main things that concern you. If you can, take someone with you on 28th.

Also check with the BLF helpline for further advice about what may be useful for you to ask the consultant. Click the red balloon top right for contact details, helpline is manned normal working week days 10am to 5pm.

Best wishes to you and for the test results when you see the consultant on 28th.

BC

[mary1956 in reply to Hidden]

Excellent links, thank you.

[dacour]

do not take steroids, specially prednisone. destroyed my late wife,s liver,. pancreas. passed away in 3 years of deterioing weight loss. take low dose antibiotis 250 mg. daily instead 4 better results. good luck , dacour

[Suzy6]

Take someone with you if possible, plus your little notebook. I take my son two heads are better than one. Hope all goes smoothly for you..

[Hidden in reply to Suzy6]

I was diagnosed with IPF in 2001 so do not worry too much about the forecasts you see of most dead within a few years. I may be getting slowly worse with Sats down to mid/low 80's with moderate exercise, but it soon recovers and I am not yet on supplementary oxygen....

[PingAnnieL]

Hello Mary.

Think you and I are living parallel lives.

I was diagnosed before Christmas as having IPF and I have my first Lung Function test on Monday (someone forgot to ask for one - I had to kick up dust).

I have a third appointment with the consultant on 31st January.

Unfortunately I live in an area which is only just going to start proper IPF support...... so no information re excercise, home support or anything has been offered.

I have my list of questions ready!!!!

Would be good to stay in touch and watch each other's progress.

Very best wishes

Annie.

[mary1956 in reply to PingAnnieL]

Hi Annie, Yes it would be great to stay in touch. This will be my first Consultant appointment since diagnosis, which I received by letter!. I was taken ill in India 2012 when trekking and was treated for pulmonary oedema and pneumonia. I'm sure I did not have pulmonary oedema, as I have done a lot of high altitude trekking and know I did not go high enough and we also acclimatised. Now I think I had IPF as the CT scans shows the same 'ground glass'' appearance as the one I had in September last year. Do keep in touch. How long do you think you have had it? Take Care. Mary.

[PingAnnieL in reply to mary1956]

So hard to say..... but remember lagging behind a group of friends and puffing hard on a weekend away in summer 2012. However I smoked then and put it down to that.

I have a really dodgy immune system with a variety of auto-immune conditions anyway and have tended to stagger from one 'interesting' scenario to another over the last 15 years.....

Not surprised at having IPF but am angry at the lack of patient centred care I've experienced since November......

Its been lackadaisical..... but it won't continue that way..... I'm on the warpath...... lolol.

So its 28th for you & 31st for me...... we'll be able to compare notes.

Have you been on the BLF site?

And have you seen these breathing exercises? I found links on this site this morning.

youtube.com/watch?v=bRhZz-q...(Not working as expected?)

Good luck...

Annie

[mary1956]

Thanks Annie. I too on the warpath and have written a formal complaint against the Consultant I saw in September. Nobody had ever mentioned fibrosis as a possible diagnosis. I was even miss- diagnosed as having TB and started all the TB medication. Only when I went for a lung biopsy at a different hospital was fibrosis mentioned., as in ''this should hopefully tell us the type of fibrosis you have''. I'll be interested to read the 1st Consultants referral letter. Seeing a different Consultant on the 28th. Will keep you posted. x

[PingAnnieL]

Wow - at least I haven't been fed a wrong diagnosis (I hope!). Doctors aren't always God or the most tactful of people...

Good luck on 28th. x

[PingAnnieL]

Hi Mary. How did your consultation go?

I have had a better week. Busy right now but will explain later. xx

[mary1956]

Consultation very confusing. CT scan from September abnormal but not typical of IPF. Lung biopsy in November confirmed IPF. New Consultant doesn't agree 100% that it is IPF so waiting to see an ''expert''. All up in the air. Lung function 10% worse than 4 months ago. 6 minute walk plummeted SAT's to 78% so they are talking oxygen. Even more confused as once again no definite diagnosis.

[PingAnnieL in reply to mary1956]

Just managed some time to get back in here. I have met a fellow traveller who's life is so much better now that she's on oxygen.

I had an oxygen assessment yesterday. 6 minute walk without oxygen, then 6 minutes with oxygen at 2ltres/min.(?)

The difference was immediate and enormous. This may not hold true for everyone but I'm so looking forward to getting the oxygen equipment. Try to push for it asap.

The consultant is still only giving me minimal information by the 'I'll get it out of her by force if necessary' method but the respiratory nurses in the department are great and hopefully I'll have the system by the weekend..... if the consultant gets her finger out and signs the form

Good luck with your 'expert'.

Annie x.

[akky]

hi i had a chest xray on tuesday im a bit scared of results would i have known if anything was wrong before hand