Idiopathic Pulmonary Fibrosis - problems with 24 hour oxygen

Hi all - this is my first post here (or anywhere!!! - new to this!!) I look after my wife who has Pulmonary Fibrosis diagnosed about 3 years ago after having been ill for quite a while. Doctors thought for a long time that her problems with breathlessnesss were due to heart issues and being overweight, although she was never what you might call obese!!

After deterioration of her health and pneumonia earlier this year she has now reached the end of available treatments, and because of her age and other health issues she is not "suitable" for a lung transplant. Currently she is on oxygen therapy at home, 15 lpm for 24 hours. The issue I have with her care at the moment and what I would like to ask opinions on is that the oxygen masks supplied by the company contracted by the NHS to provide home oxygen in Scotland are uncomfortable for use for 24 hours. The edges cut into her face and the masks are just a bad fit - for instance too long for her face.

I have talked to her Specialists, to Respiratory Nurses, and to GPs none of whom have any solution to offer. I get the impression from some that because there are so few people on home oxygen at 15 lpm for 24 hours that it is not "cost effective" to spend time on such a small issue.

Thanks for letting me rant on for so long - and if anyone can help with suggestions I would be very grateful

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  • Hi Davy - you have my sympathy! My husband (also IPF & 24 hour) is only on 2lpm at the moment, and can use a cannula, but I know that if he needs to use a mask we will have problems too as he hates wearing them. My only suggestion would be to look around on the internet, there are various companies selling masks etc. and maybe you could find one which is more suitable. Sorry I can't help more!

    All the best

    Gill

  • Hi Gill - I've had a good look around on the internet and found a mask which although not a great improvement does look a bit better than what is available - I'll let u know how it goes when my wife has tried it

    Davy

  • my husband, also ipf and 24/7 oxygen but 4l pm, he finds the cannulas make his nose very sore and the straps cutround his ears, especially when the pipe gets trapped or pulled, he has asked for a mask to wear in bed thinking it might be more comfortable, he humidifier works on the downstairs oxygen but not upstairs at night. the nurse did bring him some little sponge pipe covers for his ears, but I cant find any in any of the chemists, if you ask your nurse there might be something of the kind for masks. sory not to be much help. x

  • Hi - the sponge pipes are called Earmates nasal cannula protective pads - I bought some on the internet from a company called Intermedical, but I paid through the nose for them I think (ha ha- no pun intended!) as they were £2.50 a pair and postage was £4.95. I use cotton buds & KY Jelly to moisturise the inside of my husbands nostrils each day(no, he's not keen, but he will be unbearable if he gets sore!) and around what our son used to call his nose holes (I know, too much information....).

    However, I found a copy of the Service Agreement & National Framework for supplying home oxygen on the internet and this bit may be relevant:

    Accessories/Consumables

    1.29 The following accessories shall be provided by the Supplier, including but not limited to:-

    1.29.1 an appropriate length of crush resistant tubing to meet the Patient’s requirements, (including latex-free tubing if required);

    1.29.2 an appropriate constant or variable performance face mask, suitable for use with the installation, and able to deliver the concentration of oxygen specified on the HOOF, (including latex-free masks, if required);

    Home Oxygen Services Contract 77

    1.29.3 nasal cannulae, (latex-free if required);

    1.29.4 foam covers to protect ears;

    1.29.5 a humidifier to be positioned as close as possible to the nasal cannulae or face mask; and

    1.29.6 specialist products, for example, tracheotomy mask or collar.

    1.30 Under normal circumstances, a Patient will require one mask/cannula per month unless otherwise directed. The Supplier shall ensure that the initial supply shall be sufficient to meet the Patient’s needs until the next planned visit.

    So it looks like you may be able to get them form your oxygen supplier. this Agreement mentioned Dolby and hampshire, so may not apply all over the country but could be worth a try.

    TTFN

    Gill

  • the dr suggested olive oil for richards nose, supposed to be gentle and healing. At least if it doesnt work i can put it on salad.

  • Hi amagran my wife uses a cream called naseptin and a nasal spray called beconase both available on prescription to treat her nose - they seem to work very well

  • Hi again Gill - the little sponge pipe ear protectors you mention I didn't find very useful to protect the ears with the cannula as they move around too easily, but as anniediv replied I have tried fitting them around the edges of the mask we are supplied with. The problem is getting them to stay on the edges. The only answer I found is to glue them on, but the warm and moist air from my wifes' breath melts all the glues I have tried except superglue, which goes hard and brittle after a day or so.

  • Just a thought, have you tried a paediatrics Mask? I have several friend who prefer children's masks as they too have small length faces. Good luck in your search and best of luck to you in general.

  • Thanks rattles - I'll look into this

  • Your oxygen provider should send you the sponge tube things for behind the ears, and not charge you. Also ask them if they have a longer length of the sponge to fit onto the rim/edge of the face mask. Although cannula are sometimes better, they shouldn't really be used for more than 4lpm. Best wishes to you both, and all on here x

  • Thanks anniediv - check out my reply to gidge about the edges of the mask

  • Dear Davym

    My name is Susan McIntyre and I am a Clinician working with Dolby Vivisol. Please call 0800 833531 and ask for me if your wife is having problems with her masks.

    Look forward to hearing from you.

  • Hello Davym,

    Sorry to hear that your wife is experiencing discomfort from her mask. I know that people often modify their masks to make them more comfortable. You can get custom-made masks as well. Perhaps this is an option through your NHS trust?

    Have you already made contact with one of the IPF support groups around the UK? The IPF Action UK group has just been set up. Mike and Elizabeth Bray run it and they may be able to offer you some guidance, or there may be a local support group to you that could share their experiences with you for you to try out.

    I work for a charity called the European Lung Foundation (www.europeanlung.org) and we are working on two different projects that you might be interested in:

    - IPF - we are developing new European guidelines for healthcare professionals on diagnosis and management of IPF. We have held focus groups with groups of people with IPF and their relatives across Europe and will be using their feedback on their experiences to improve treatment and support via the new guidelines.

    - Home Mechanical Ventilation - Within the next month or so I will be sending out a survey to people using ventilators at home to get feedback on what your biggest issues are and what you would like more information on, doctors to consider etc. This will be a pan-European survey that will inform new guidelines on home ventilation and telemonitoring, and will be the definitive guidance document for healthcare professionals across Europe. I would be delighted if you and your wife would consider completing the online survey, once it is available.

    I hope to hear from you, and I hope that you find some satisfactory solutions to make using oxygen easier for your wife.

    Sarah

  • hi davym. I'm on oxygen 24/7. your wife would be better off with a canula not a mask they fit snugly in the nostril and if she keeps using k.y. jelly, just a tiny drop in her nose she will be far better off. the jelly keeps her nose moist, I use it and have no problem with a canula, far better than a mask, and I would say there cheaper than a mask, give it a try I'd like to know how she gets on.

  • Hi - afraid I've not been on for quite a while - my wife passed away in 2013 so quite surprised to get a message after all this time but many thanks for your suggestions - unfortunately my wife was on 15 lpm all the time - 24 hrs - and this was too much to handle through a cannula even with various creams - good to hear from you though and all the best for the future

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