Prognosis of Pulmonary Fibrosis?...

[Nadine_xox]

Hi everyone, i'm just looking for some advice and support as feeling a bit lost at the moment. My dear Dad whos is 59 this year, has been diagnosed with Pulmonary Fibrosis. It started after he had severe Oedema in his ankles, a racing heart and increasing breathlessness. It's believed he now has this devastating condition, from repeated and chronic chest infections and pleurisy throughout his life.

He is having regular checkup's at the hospital, so far they have tried him on steroids etc but, that doesn't seem to be working so they have taken him off them. He's only been diagnosed 2 months ago, and there's basically nothing we can do now it seems, other than sit and watch how it progresses. What is the life expectancy of this? I know it can vary hugely, but i'm so scared of him just suffering for the next year or few years. He's a big strong guy so he hides it well, but he's struggling a lot with walking now and he's going from being so active to soon immobile. Any words of advice or knowledge on this would be great. Thankyou so much, and a big hug to all sufferers xx

[dall05]

Hi Nadine, I was hit out of the blue with PF at the age of 51 and having lived with it now for 3 1/2 years I've found that keeping your chest clear of the gunk that builds up on it is key to holding back any deterioration. I exercise hard most days for roughly 1/2 an hour to a hour and it hurts but this seems to be working for me so I'm not going to stop.

A little pain every day for keeping the disease from progressing seems worth it to me so try to encourage him to stay as active as is possible, forget what was once possible and find his new level, then work hard at maintaining it.

I have managed to improve in this last year so never give up and keep positive at all times.

Tony x I live at a slower pace these days but life is good

[Nadine_xox in reply to dall05]

Hi, and thanks so much for your message. I'm glad to see after a good few years, you're still going strong and able to exercise Unfortunately my Dad seems so unable to be as active as he once was. He suffers incredibly bad with the swelling in his legs now, and that issue was long before the diagnosis of PF. So it's a catch 22 situation really, if it wasn't for that he'd definitely still be active. He has also gained a lot of weight and I don't know if that will make things any worse, as this condition is unpredictable we'll just have to see how it goes. I'm just hoping it will be a long time away until he starts needing any oxygen etc.

I'm glad life is good for you, and I wish all the best health and happiness for more years to come x

[Patriciapotts in reply to Nadine_xox]

Please speak to your Dr for referral to the Lymphodema service where they will measure and make elastic daily wear stockings for your dad. This will help clear the excess water from his legs & will enable him to be active. Without my stocking my mobility would be curtailed. IPF for 4 yrs, now on liq O2 & using backpack concentrator& home concentrator at night. There will be a pulmonary rehab team in your area. See Dr. Sometimes it he who shouts loudest. I am an retired registered nurse. Good luck x

[dall05]

Hi Nadine, I used to have very bad swelling of my right leg after a DVT but exercise has helped clear that. Its so important not to give in to being ill and even though it hurts and is uncomfortable to not stop exercising. There is no doubt that carrying any extra weight doesn't help, I was asked to lose 2 stone by my consultant and after achieving this my breathing was considerably improved.

Don't worry to much if he has to go on oxygen as I've been on it since diagnosis and it doesn't hold me back, infact I thank my lucky stars this is available to us for free.

Try not to fuss around your dad and wrap him in cotton wool even though you may want to, keep him active if you can.

Tony x Thanks for your kind comments

[mattcass]

Hi Nadine,I was diagnosed with P/F in may 2006 without any problems whatsoever other than putting on weight with Steroids which i lost eventually, but all the tests i had during my P/F were better than the tests before, so if your Dad can keep away from other chest issues he will cope, Good Luck Matt

[maggie44]

Hi Nadine

So sorry to hear about your dad, he will find it difficult to come to terms with the diagnosis. It must be hard for you to deal with as well. Like the others have said, keeping as active as possible is really helpful in maintaining quality of life and staving off the development of the disease. There are exercise classes in most areas called Pulmonary Rehabilitation which help people with breathing difficulties find the right level and type of exercise (in a safe environment)for them as an individual. they also include an education element which helps you understand what is happening to your body and provides coping strategies. I assume your dad has diuretics to try to help with the swollen legs. I have these as I have pulmonary hypertension (as do many with PF) which includes some degree of heart failure and more breathlessness.

Although there is no cure for PF there are different treatments available to slow down the disease. Which treatment avenue is recommended, depends on the cause of the PF. There are specialist hospitals such as the Royal Brompton, London and Papworth, Cambridge who are world leaders in the field. A number of us on here have been sent to these and other specialist hospitals by our local consultants.

Do not let your dad give up hope- nor must you. Do everything you can to get the best of treatment available.

Best wishes

Maggie

[maggie44]

PS

Has your father had a definitive diagnosis with PF? if not, maybe you need to ask for a second opinion or a referral to a specialist hospital so they can decided on whether he has PF and if so what type and have a treatment plan drawn up.

Maggie

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Like ever one says exercise is good plus he will in joy it get him on a rehab course Keep him away from fresh paint do not leave him do any digging in the garden and a big no no to sprays in the home