ipf

[kristiem]

hi my dad is seriously ill with idiopathic pulmonary fibrosis, its heart breaking to watch him deteriorating daily, I would like to raise awareness if this wretched disease. my dad has never smoked he is 70 years old and has always been in good health, he was diagnosed 10 years ago. I was wondering if there was a link between this disease and where he worked. my dad worked for over 30 years in a sugar cane refinery,could breathing in the sugar cane dust have been a risk factor relating to this disease, has anyone else come across this before or know of someone who has ?

thank you for reading this, any information would be appreciated, im not looking to blame just raise awareness for others.

[Mocarey]

Sorry your dad is suffering so badly. I am afraid i can't help you though. I do have pulmonary fibrosis but as a result sarcoidosis. I do think a lot of lung problems are caused by breathing in dust in work places. I myself worked in a bookbinders and swallowed huge amounts of paper dust. In those days there was no such thing as health and safety. I am glad your dad has you to support him. M x

[Mavary]

Hi Kristiem. They just don't know what causes IPF. They associate certain things but are not really sure. My Husband has worked with asbestos, wood and cement dust which they think may cause it but cannot say for definite that it is that. I guess we will never know. X

[Chris3]

Hi Kristiem. Sorry to hear about your dad. I know sugar cane dust can cause hypersensitivity Pneumonitis which can lead to PF. I suppose they would have checked him for that though. You'll get plenty of support on here.

[cofdrop-UK]

So sorry to hear your Dad is struggling so much. You could 'phone BLF about the condition and about raising awareness. For details click red balloon top right.

Good luck to you both.

love cx

[longlungs]

Hi Kristiem so sorry to hear about your dad it must be rotten for you aswell as dad.Wishing you a very warm welcome amongst us lungies.I personally dont have any answers for you except to say it would make perfect sense to think the sugar cane dust would have some kind of an effect on ones lungs,Ithink the researchers are still learning about different dusts and fumes and their detrimental effects they have on us humans .Sorry not much help its all very frustrating at times! You sound like a great daughter and i wish you well in your investigation hopefully somebody will know more and be able to help you. Janexx

[Hidden]

Hi Kristie & welcome!

I'm not much help I'm afraid,not knowing a lot about it,a friend of mine has just been diagnosed with it also,she is 64 & never smoked & been very healthy,till a few months ago.

I'm sorry your Dad is poorly,but he is very lucky in having a caring daughter!

The sugar cane refinerys are terribly dusty,I wonder if you can speak to anyone from health & safety there? Just a thought.

Good luck & keep in touch,love Wendells xxx

[sassy59]

Hi kristiem, as has been said already, you will get lots of support on here. It must be so very hard for you to watch your dad struggle like he is and not really know why. IPF could well be caused by the work environment as can other lung problems. Pete worked for years in Cargo at Heathrow in the days when no masks were worn in the belly of aircraft, loading and unloading goodness knows what. He now has sarcoidosis and COPD but he could have PF like Mocarey because of the scarring. Who knows?

Thinking of you and your dad and wishing you both all the best. xxxxx

[syble]

Kristien. So sad to hear how worried you are about your dad. My darling husband had this awful disease for just over 5 years,sadly died in September. Do speak to the oygen nurses,the district nurses and of course BHF.There are lots of tips they can give you to make Dad more comfortable. My heart goes out to you both.Bulpit

[Hidden]

Hi Kristiem,

I also have Idiopathic Pulmonary Fibrosis (IPF) and I'm sure your Dad will be very glad to have such loving support from you. This is the trouble with IPF, nobody knows the cause, hence the term "Idiopathic". It may be useful to read the updated British Lung Foundation leaflet at blf.org.uk/Conditions/Detai.... Another 2 organisations that are trying to spread awareness of IPF can be accessed at actionpulmonaryfibrosis.org/ and at pulmonaryfibrosistrust.org/ . I can assure you that anything you can do to raise awareness so that we can get more research and possible treatments will be very much appreciated. Good luck to you and your Dad. X

[poppyval]

Hi kristiem and welcome. I have Pulmonary Fibrosis, and apparently it was caused by my Rheumatoid Arthritis which attacks the bodies organs as well the joints. I think other illnesses can cause it too, but I am afraid I cant remember which ones sorry. Take care both of you, your dad is very lucky to have you looking after him.Cheryl

[syble]

Kristiam. I have never replied to any messages before,I have read this site for the last five years and have often found it useful. My heart goes out to you and your dad,my darling husband died in September from this terrible disease, please don't give up hope,your Dad has done wonderfully over the last 10 years. Do speak to the oxygen nurses, the hospice nurses and the district nurses,they will be of great comfort to you both,lots of tips to make your Dad more comfortable,treasure him every day,he must be so very proud of you.My thoughts are with you. Bulpitt

[RFPM]

Dear Kristiem, I am the IPF Project Manager at the British Lung Foundation. I'm really sorry to hear about your father. As someone else has mentioned there is information on our website about IPF. You can also order booklets and leaflets for free to find out more and to hand out to friends and family. We are in the early stages of a programme of work on IPF at the moment. If you would like to help with awareness raising then please get in touch. You can email [e-mail] or click the red balloon at the top of this page. All the best, Ruth

[naturelover]

Hi there Kristiem,

I have the same thing, and my daughter and son are breaking their hearts. I am trying to figure out when I was first diagnosed with this, it could be 5 years, I am wanting a copy of my medical records to find out. It is interesting your dad was diagnosed 10 years ago, it has given me some hope. I got told in the hospital last January I had between 6month to a year to live. I am usually a very positive person but it is hard just now. My grand daughter is two years of age, and I had hoped to at least seen her going into school. I am 66 by the way and have a very young outlook. The usual prognosis for this horrible disease is 5 years from when diagnosed. I say my prayers every day and night, and live in hope.

[missjojo96]

hi my hubby is 43 and was diagnosed 3 years ago we have 2 young children he is really poorly at the min its really hard to watch him get worse everyday

[wattoo1971]

I am so sorry to hear about your dad. The specialist thinks my dads has been caused by working in glass industry and at a factory producing rubber.