My question is can anyone advise of the progression of the disease. I'm also interested in the likely survival time from diagnosis . Kath

[bridport]

Hi I'm 57, female and I was diagnosed with IPF with an underlying diagnosis of usual interstitial lung disease almost a year ago.

[Hidden]

Hello Kath,

Have you checked BLFs pages on this ? I don't have IPF myself but hopefully some one with IPF will be along shortly.

BLF has two pages which may be of interest to you:

lunguk.org/you-and-your-lun...

and

lunguk.org/research/researc...

There are a couple of pages on Interstitial Lung Disease also.

[bridport in reply to Hidden]

Hi Zoe

I have seen those pages thanks. I'm getting really useful information just reading the questions and replies.

[tanyamarie]

Hello Kath,

My dad has it and after much research I can tell you the details in a nutshell but I am so so sorry that it will not make for easy reading. I have cried loads in the last 2 weeks as this is a very nasty disease.

Prognosis is 3-5 years. There is no treatment that will cure only a lung transplant which you should have had discussed with you upon diagnosis. The only treatment is steroids and immunosuppressants but it is not highly successful and alot of the time, the side effects outway the benefits. If they do help it will be to keep the PF stable. Once a decline starts it is often rapid and very little that can be done.

There are Pulmonary Rehabilitation courses that your GP can get you on. My dad is in the middle of his course and he is finding it fantastic. It helps with excercise/breathing techniques/relaxation etc. You will meet other people with same/similar illnessess and you will find comfort there. The staff are excellent and help so much. Within 1 week of being on the course my dad had oxygen in the home and a disabled badge.

We go to a breathe easy meeting once a month, run by the BLF and he likes that too.

Having an excellent network of family and friends around is a must, get all the support you can. There are ways of adapting your lifestyle so you can manage your illness instead it it managing you. And talking on here I find helps me. It's bittersweet knowing that you are suffering but nice because we can share so much.

Hope this helps,

Tanya

[bridport in reply to tanyamarie]

Hi Tanya

Thanks for your reply I am learning alot! I do have a great family but until now I have felt very isolated and alone, feeling better now

cheers Kath

[breathless]

Hello Kath, Yes what a disease, Ideopathic Pulmonary Fibrosis. Yes I have just read a prognosis of 3-5 years. This as to be one of the worse things going. Yes I have shed so many tears over the past two years because of IPF. Yes I have some of the Fibrosis so my Clinicians have told me. One of my 4 lung diseases. Why I say a stage is so bad. How many family members and yes friends do we hear they sent him/her home. They have only been given 2 years and we have lost them in less than 6 months. Yes our mind tends to give in. i.e. Why bother I am going to die anyway. NO we are not. I was involved with someone that had been given 6 months the last I heard our friend is still here with us yes their time was up about 18 months ago. The Midland Office will verify that for me. We was talking about it at our Midland Network meeting In February if my memory serves me right. I lost a good friend May 2011 he was a great and valued member of our Breathe Easy Group. John used to say that he would go when he was ready because he still had a life to live and Yes Kath it was well after 3-5 years. All I can say my love is find a purpose in your life and go out and live your life. The information about seeking info from the BLF is great info. I was invited to an Inaugral speach of a Professor yes researching IPF for the BLF. Yes there are top people being funded By the BLF. No I am far from promoting the BLF because anyone that knows me will say I have had more disagreements than most, Because my only interest is people living with a disease But I can honestly say even though I have been invited, I will always be along side ourLE IN THE BLF because they are working their butts off for us. I have been involved in their campaigns and I found myself eating my words. I am only involved with many of our Lung diseases yes I mentor people with Cystic Fibrosis I call it being friends not Mentor. I am friends with many people with IPF and Others waiting or travelled their transplant people. However Kath I am far from being a specialist, What I teach and Speak about is how to live with a long term condition Or the Correct term How to Self Manage our lives round our Condition. Yes I promise to be on and off here because like I said I have lots of people from all over talk with me on my chat line so I am not about to ever desert them But I promise there are people on the Admin of this Know where and how to contact me to contact me. Bless you Kath and everyone else go out and live your life to the full Breathless

[bridport in reply to breathless]

Hi Breathless.

I don't know what to say! thanks for your reply. I was diagnosed last year and haven't really done much living my life to the full...just resting!.

I seem to be ready to do more living life....must be the sun shine, i don't really know why.

Thanks alot and bless you Kath

[Hidden]

Hi

There are a whole group of "Interstitial Lung Diseases" - IPF is one of them.

As with all conditions progression is different from person to person - an early diagnosis also helps - at 57 I would say you are at the younger end of the scale for diagnosis. Have you asked about any research trials you can be involved with? And also has your diagnosis either been done at, or reviewed by a specialist centre?

Kath - please call us at the Helpline - 03000 030 555 - have a chat with one of the team.

The important thing to consider is not the "label" of the disease (yes that is important) but more important is how the condition affects you today and how you live with it.

Thanks

Mark

[bridport]

Hi Mark

thanks for that. I will ring the helpline for further discussion. I have had this condition for a year now and have just retired early on medical grounds. I understand the one day at a time thing but at present I would like to talk to someone who understands my disease. Tthe title is important to me as no one seems to know very much about it. I have major decisions to make one is moving house so the progression of this disease is important in that respect. Medical trails have been discussed but at present its not something i want to do. My diagnosis was confirmed at the Royal Brompton by Mr Lim.

[maureenv]

Hello Kath

I have IPF and was diagnosed over 6 yrs ago. I wasn't told anything from Drs about the disease they sent me away with only one bit of advice, never touch your eyes because thats how most infections enter our bodies from grubby hands. That was it! SO i did as much research on my own and like you probably did i asked Mr Google and got the 3/5 yrs prognosis but my expiry date has come and gone :-). The only thing about this disease is there are no 2 cases the same. So some patients seem to do well on steroids and immunosppressants and others dont do well at all. One thing i can recommend though is to take NAC which is an anti oxidant and helps to thin the mucous and makes it easier to get up.When I was first diagnosed i carried on working and thought they must have made a mistake and got my diagnosis wrong because apart from a nagging dry cough and the occassional SOB i felt fine. I worked in the NHS and the thing i found is hospitals arent the best place for people with IPF because of all the bugs going around and mostly from other members of staff. We didn't like to be off on sick leave with just a cold or cough and always went in and spread it around. My first winter i got pneumonia and then pleurisy and numerous chest infections. I had to retire eventually because after having a lung biopsy i couldnt manage without O2. I was discharged from hospital on O2 and I have been on it ever since :-(. Try to pace yourself Kath and make life easier for yourself, a few of the people on the forum i use have a 15 minute rule. They work for 15 minutes then rest for 15 minutes which works for them, you have to learn to let your body adapt to what its capable of doing. You might find even taking your bath/shower tires you out. It really takes it out of me, I find it easier to wrap myself in my towelling dressing gown rather than trying to dry myself works better. Let me know if you would like to join our forum where we are mostly people with IPF/PF but some carers also and we give each other help and support on a daily basis.

Maureen

[bridport in reply to maureenv]

Hi Maureen

I would like very much to join your forum thanks. Until this week I have been feeling very isolated but I'm so glad I found this site. I finished work last July after my biospy. My job was very demanding and lots of other things happening..like a university course for work etc. I felt wrecked when i came out of hospital (i was in the Brompton for a week). My levels of activity reduced to just above zero. Self caring, but very little housework a no trips out without my husband and there were few. So its hard to work out whether i'm worse (cos sometimes i look back and think i feel better than i did.) My aim now is to get out and become more active/fitter.I have started rehab but thats another story.

Thanks for listening

Kath

[maureenv]

Hi kath

please join us, at this web address and you'll find like minded people. Most of us have IPF/PF but there are also carers who like to share their experiences and ask advice about the progression. Here is the web address, you have to ask to join but May who owns the forum replies very quickly. See you on there

Maureen

health.groups.yahoo.com/gro...