16hour oxygen finally

[Vicky4]

Just thought I'd update After months and months of a battle to get 16 hour oxygen yesterday my dad went see his gp about some bed sores he's got when he was there he was concerned about him and gave him a check up to and when he did said you need to go to hospital he didn't know weather he had another chest infection and wanted them to sort his oxygen out after they ruled out infection after an X-ray he was then told we had to wait for his consultant he wanted to see him while we was waiting I nipped down to the copd unit and asked could he have the test the doctor rang for they said they couldn't do that cos they was waiting for his oxygen team to asses him and ring her and she could try and squeeze him in earlier but they felt my dad didn't need the 16 hour oxygen I was abit angry really cos I know my dad and he wouldn't just keep passing out for nothing we final saw the consultant who told us his ipf is progressing a lot quick than normal ipf patients and that it's not looking good from the X-ray he had 6 weeks ago to the X-ray yesterday I asked could the nintenadib help stop it and he said it takes 8-18 month to even make a difference and the rate it's progressing at he won't have that long for it to start making an effect we mention needs the oxygen and he rang the unit I'd been to earlier and oh what a surprise they did the atrey test and he very hypoxia they said and need 16 hour oxygen I know they have rules and regulations but please yesterday we felt like giving up and going home people made us feel like we where lying about my dad needing oxygen like knowbody wanted to help when all as we want to do is make his life he has more comftable always stick to what u believe and fight for it cos it's ur body and ur life x

[newlands]

I agree but we shouldn't have to fight , what a good daughter you are

Take care

Dorothy

[Time_2_drink]

Sorry to hear you have been having such a frustrating time hope your Dad getting some relief with the oxygen take care .

[Salmo]

As you describe it this does not sound like one of the NHS finest moments but seems depressingly familiar of how many people with the IPF tag are treated.

Have you considered trying to get your dad seen at a centre that specialises in IPF ?. I do not know if there are centres near you (Manchester, Wythenshaw ?) or even if they are any good but have heard so many people with IPF mention that the treatment you can get from a specialist centre is streets ahead of what you get from a general hospital where you are being treated by a general consultant who does not know much about the disease. I have not idea how you do this in England so you may need a spearate post asking people how you go about getting referred (and cfor centres near you) but definitely worth the effort as I suspect your current consultants knowledge about IPF is not that great based on the crazy comments about how nintedanbid works and treatment so far. There is no reason why nintedanib should not start arresting fibrosis after a short period of time (days, weeks ?). It does not take 8-18 months to work. It might take 3-6 months to get any idea that its working to slow the disease (based on lung function and HRCT tests) but it is misleading and depressing to suggest it will not be any use. It is also very surprising that he seems to have left your dad to his own devices for the last 6 weeks without addressing his oxygen needs which clearly must have been quite severe if he was passing out.

[skischool]

nhs.uk/Conditions/pulmonary...

Vicky i have popped on a link to just about all of the basic info the NHS will give you on IPF,

For some reason,perhaps from a previous post i believe you live in the North west of England?I would suggest that you go to your local Gp and ask that your dad be referred to Wythenshawe UHMS lung centre as they are the centre of excellence for lung diseases in our neck of the woods.You may have to wait awhile for this to happen but i suggest you implement this with some urgency given your dads frail condition.

I do hope that the LTOT of 16 hrs a day will help your dad to be a little more comfortable at home and that you are/will initiate the care plan with your Gp as previously advised.Well done in persevering with your demands for better and more profesional care for you dad.

Best wishes to you and of course your dad for the future...........................skis and scruffy cat

[Vicky4]

Thanks everyone he is under wythenshawe aswell to be honest there abit flummoxed with him cos the progression of the fibrosis and the exabrations it's usually when u have a infection or virus and my dad shows no signs of this but has progressed rapidly from the last X-ray 6 weeks ago we have got a care plan and the nurses coming out aswell as the occupational therapist coming to the house everything is in place it's just trying to slow down this progression we see the consultant again in 2 weeks after his drip steroids and 2weeks worth of steroids and a antibiotic to stop any infection while on steroids I think there just trying to make my dad feel better by saying it takes that long cos it's not worked so far and to be honest my dad has always said Iv got nothing to lose and he'd be a Ginipig to anything he wants years not months and has a good relationship with his lung consultant we live in Wigan and they do have the ipf team in the smaller district x

[mskpjb]

Hi Vicky4 good for you in fighting for what your dad needs. I was told in hospital that I needed oxygen but it took nearly 18 months to get it. I wonder if any organs, heart in particular were damaged during that delay. I fight for myself (nobody else to do it) but I do worry about those who have no-one. Best wishes to you and your dad. Sheila xx