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IPF - Carers UK Forum

IPF

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IPF

Hi
My husband now has Ideopathic Pulmonary Fibrosis. This has resulted from a double heart bypass, nearly four years ago, followed only 10 days later by a significant stroke. Very unlucky. Great shock. Was hospitalised for four months unable to swallow talk feed sit up etc. Over the last 3 years he improved enormously. But gone down hill with I P F.
Apparently Amiodorone whilst good for heart can cause Fibrosis. (scarring up gradually of lungs.) Was using oxygen but now bedbound. He is 80. I have just started now to have carers twice a day... A great help. Is anyone else dealing with IPF. He gets secondary mucous secretions causing him to cough. He is mentally very alert but very weak.
For all readers ... IBF ( Idiopathic Pulmonary Fibrosis ) ... NHS web site :

https://www.nhs.uk/conditions/idiopathi ... -fibrosis/

( Not dissimilar to " Miner's lung " ... coal workers' Pneumoconiosis ( CWP ) well known on my manor and other ex mining manors. )

Overview.

Idiopathic pulmonary fibrosis (IPF) is a condition in which the lungs become scarred and breathing becomes increasingly difficult.

It's not clear what causes it, but it usually affects people who are around 70 to 75 years old, and is rare in people under 50.

Several treatments can help reduce the rate at which IPF gets worse, but there's currently no treatment that can stop or reverse the scarring of the lungs.


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British Lung Association ... more extensive than the NHS web site :

https://www.blf.org.uk/support-for-you/ ... brosis-ipf

Purely for background.

Link to support groups :

https://www.blf.org.uk/support-for-you/ ... pf/support

A forum ... not very active but ... it exists :

https://pulmonaryfibrosisnews.com/forum ... -patients/

CHC / NHS Continuing Healthcare ... certainly seems favourite here :

https://www.carersuk.org/forum/support- ... read-35998

Section : FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

Any reader able to help Eleanor directly ???
Hi Eleanor,
I don't have experience of caring for someone with IPF, but just wanted to welcome you to the forum. Chris has given you some great links, ( as always.)
I don't know of anyone on the forum caring for someone with IPF, but that doesn't mean to say there aren't. Also, lots have experience of caring for someone post-stroke/ bed bound etc. There are also carers on here with experience of caring for partners/ spouses.
I'm glad you have arranged for care visits - don't forget these can be increased to 4x a day, when needed.

Melly1
Whilst he has carers twice a day, what has been sorted out for you to have real time off?
When was his Needs Assessment last updated by Social Services, and your Carers Assessment?