New to this!!! IPF

Advice needed please

Husband diagnosed with IPF end of April following private appointment with consultant (initial NHS appointment not until September!!!)

Now have follow up appointment next week (NHS) having had CT scan. Also have appointment for pulmonary rehab just before. Think its likely that Pirfenidone will be discussed / started

What sort of questions should we be asking and what support (if any) can we expect.? Not convinced that husband fully understands the implications of this disease

Also any advice on travel insurance also appreciated. Love cruising

Thanks in advance

15 Replies

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  • Good afternoon Puppet,

    Sorry you have had this dx for your husband. It is shameful that you had to go privately to get proper help. But you have come to the right place for advice. There are many people here with IPF, who will be happy to give advice, help and support.

    It is an amazing site. An outstanding bunch of people with shed-loads of info, comfort, humour who specialise in realistic positive attitude.

    All the best

    K xxxx

  • Thanks

    Yes. NHS is so good for emergency care but not so for what is considered routine appointments. The importance of having a diagnosis cannot be underestimated but at least we've got an nhs appointment now and had scans etc done so hopefully this appointment at the multi disciplinary clinic should be constructive

  • So, so agree with about dx. For years my grumpy GP kept telling me it didn't matter what I had, that it was of "intellectual interest only", that I would never know what it was. I felt like strangling him with his own stethoscope. I persevered and finally I have my dx six years later. Not good news but it is essential to know. Once you know what it is you can cope, but not knowing was a nightmare.

    K xx

  • Puppet, I had to do the same thing (go privately) to get an appointment with the consultant I wanted. Then for 18 months, I saw him at his public clinic in the hospital. I now see him privately if I need help and go to the clinic a few times a year.

    His initial fee was € 200 and I was horrified but it was money very well spent, as it got me a treatment regime and on to his patient list at the hospital. Follow up visits are €100 and again, if very sick, I think well worth the money.

    It was very sensible of you to pay the extra money rather then keeping your husband waiting months and maybe getting sicker.

    The fact that you have the follow up appointment and already have an appointment for Pulmonary Rehabilitation, is very encouraging.

    I don't have IPF so don't know what questions you should ask. But obviously, your husband's condition, how it affects him and the meds that are prescribed, should be discussed.

    Write your questions down before you go and keep the list with you so uou remember them all. Best of luck to both of you.

  • There is an IPF pack you can get from the British Lung Foundation, so you could ring the helpline and check to see if that's available. We got our info pack from the local IPF support group. These are listed in the BLF website and were v quick in providing us with info and support when my husband was diagnosed.

  • Thanks. Will certainly contact them but possibly wait until after appointment and see what we're given there

  • Excellent advice from Northernfi - I was also going to suggest calling the helpline for expert help (03000 030 555).

    For Travel Insurance, have a look at the pinned post, top right of the page, where you'll find lots of useful information.

    Best of luck, Annie

  • Thanks Annie.

    Just starting to navigate my way round this site. Will certainly look re travel insurance. Think we both need a break as I fell and fractured my hip last year which resulted in 2 lots of surgery and 9 months of work and then this with my husband. All advice appreciated

  • Hi Puppet, I have IPF . If your husband meets the criteria for Pirfenidone, it would be worth asking about Nintedanib (Ofev) as well. I tried Pirfenidone but could not tolerate the constant nausea. I started Nintedanib a few months ago once it got Nice approval and this has been much better for me. According to my specialist respiratory nurse, everyone who started on Nintedanib when I did is tolerating it well. I know there was a big drop out rate with Pirfenidone. It does vary from person to person but certainly worth asking the consultant about drop out rates for each before opting for one (if you are given the choice).

    Take Care,

    Helen

  • Thanks Helen. Will certainly ask about nintendabib. Tolerance hadnt crossed my mind

  • Hello,. For holiday insurance we use : All Clear :. They are very good for travellers with Copd .....Although a different diagnosis perhaps the may be able to sort you out.

    We have found them to be very reasonable ...good searching.

    Jo.

  • Thanks Jo. Will give them a go

  • Hello, I have IPF+, was refered to The Bromptom hospital, the main centre 18 mths ago, they are very thorough, excellent care, complete diagnosis and selective treatment. Many more drugs than pirfidrone, that might be more effective. Home concentrator+ O2 can be ordered for use in The Uk free of charge. Many European main cities you can order your O2 requirements delivered to your hotel at your own cost, not expensive to loan

    Personal concentrators are accepted by most airlines, you need to ask them for clearance

    Holidays & cruising

    I have bought a 'Inogen' portable concentrator for use on aircraft and on board ship. This depends on how many litres of O2 yr husband will require, the local pulmonary nurses or the Brompton will help ordering for your need.

    Insurance depends on your age, up to 70 yrs easy after that it is a little expensive.

    Hope this helps,

  • Thanks Patricia. Interesting about alternative drugs.

  • Thanks all. Certainly given me some things to think about and questions to ask next week

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