Idiopathic pulmonary fibrosis

[Baggle]

I've just been diagnosed with idiopathic pulmonary fibrosis. Does anyone know of any groups I could attend in the sussex area?

[Hidden]

Hi Baggle

I can't help with information about the group but I'm sure someone will be able to tell you. The BLF are a great source of information, just click on the red balloon. I just wanted to say hello and welcome.

[SMasefield]

You can also try contacting Pulmonary Fibrosis Action UK actionpulmonaryfibrosis.org/. They should be able to put you in touch with any IPF groups in your area. I hope you find a group.

[mattcass]

Hi Baggie, Welcome there are a lot of people here with IPF some new and some have had it for years the longest I think is around 12 years so anything you need to know you have come to the right forum page, One off the first things is don't read to much into it as it can be a bit scary but it's not, As Roz said click on the BLF red ballon,Mattcass

[imelda16]

Hello Baggie

I was just the same when diagnosed with IPF looking for a group in my area but this is the best place to talk or find out about it. The group I had nearby was Pulmonary. Rehab which is a start to get contact with others who suffer lung conditions which will help with excercise s for your breathing. But the class I attended was more for COPD and any discussion was only on that and no talks on IPF .The Patients Like Me web is very helpful they have a forum that's only IPF just type in the name and follow . Good Luck

[sandy126]

my husband has the same condition, I wish you the best of luck and hope that a treatment is found that works for you. We bought a portable oxygen concentrator for £3K with battery in 2011 and he didn't get to use it too much as he became worse quite quickly. I am looking to sell it for a reasonable sum. If you are interested at all please contact me on [e-mail] and we can sort out postage or delivery for you. I do wish you the best of luck and hope that you find a suitable support group in your area. I live in Thamesmead, close enough to Woolwich/Charlton for the groups in this region, although he only used the pulmonary rehab. Sadly he lost his fight in October but I am glad that he is now at peace and I feel he is whole now on the 'other side of life'.

[Joolsh in reply to sandy126]

Can I. Ask Sandy I have pulmry phybrosis of lungs my oxygen levels are poor need seven litres at rest poor mobility, this is personal and u don't have to answer me, but cdid he know when it was close to end, I'm talkin months could he feel as if he was dying. My heart is retaining fluid now three times more since Jan, palletise nurse and doctor visited last week out in community lung specialist says it will be hospice that deals with me, but I feel as if I'm dying I know within myself cos of my limitations on activity and pain x sorry for being personal if you don't reply it's ok I understand but I talk to know one, I've even paid and planned my funeral to make life easier on family but sometimes I think is everyone putting head in sand and not listening x

[sandy126 in reply to Joolsh]

John was ready to go about 6 months before he went - he planned his funeral and we went to bank etc to sort out finances for when he was no longer with me. He was very practical and knew that he only had shortish time. He had the heart fluid thing about a year before he went. But saying that, every one is different so do not think that it will be the same for you. All the family thought he would get well, apart from those very close to us. They were shocked but to be honest, I was relieved for him to be out of the suffering and for me to regain some kind of life. It will never be as good as when I had him, well or sick, but I feel he is at peace now and watching over me with guidance when I have to make decisions. John attended the hospice for about 18 months before he became bed-bound (the last 3 months) and found it a good place to go. he had counselling as well as meeting up with others allowing me a bit of 'me' time at the same time. Go for it, with the hospice they are a great support for you and your family.

[Joolsh]

Thanks sandy making my grand kids memory boxes writing loved one letters things people never get round to doing, I'm blessed and believe everything happens for a reason no matter how hard they are an unfair I'm only 41 x but I keep going and that's what u need to do x I know my limitations and as they come I accept, need a disabled buggy to go to shopping centre nut I still go with friends and do franki an bennies for dinner x where if u said 6 maths ago to go in one I would have refused x John seemed strong and you had a lot of love an respect with each other so I hope you start to get yr life back cos I know we are a strain and hard work at times x thanks for replying to me x words of comfort x sometimes I feel so alone x

[simeon]

puffin

Hallo Baggie. This is a bit late but might help. I was diagnosed 5 years ago now in end stage of IPF. I never met anyone else because it's a rare disease. Maybe you should consider making links on email or Skype so you have visuals as well. There are a few simple things other than drugs that can be done to make life bearable.