Idiopathic pulmonary fibrosis ?

[callyann]

Who else here has idiopathic pulmonary fibrosis?

[imelda16]

Me ! have you got a problem? There are some others who will no doubt reply so just say what you have on your mind and we can answer. Also welcome and hope you find what your looking for.

[callyann in reply to imelda16]

Thanks Imelda I just wondered who had the same

not got any problems at the moment apart from trying to come to terms with what I have ...

[rockett777]

hi callyann, welcome, you have come to the right site. My husband had l.p.f unfortunetly he died last year. But we found good support on this forum

[callyann in reply to rockett777]

Thanks rocket sorry to hear about your husband xx

[Jessy11]

I'm sorry but I don't have your condition. I wish you well though & I'm sure you'll get help from our friends here who do have the same as you.

Take care & keep well 🌻

[callyann in reply to Jessy11]

Thanks Jessy xxx

[dall05]

Hi callyann, I have pulmonary fibrosis which they think has been caused by something called jo-1 positive anti bodies and is treated by rheumatology and lung consultants.

I am on oxygen most of the day but still able to get out and about all be it at a slower pace.

I have been living with the condition for 5 years now and have found exercising regularly and a positive attitude to be beneficial.

Tony

[callyann in reply to dall05]

Thanks Tony that makes me feel better I read about only having 3 years left ☹ x

[Offcut in reply to callyann]

Some sites are so out of date and some even out of touch with how things are now. I would ignore most unless they are up to date medical sites with all their jargon ???

[callyann in reply to Offcut]

Thanks Tony x

[Northernfi]

Hi callyann. My husband was diagnosed with IPF but it's actually NSIP. However by the time we found out, we'd joined the IPF support group, and as there's nothing for NSIP, we've kept going! It really is a great help - v friendly people, useful and interesting speakers and some social events too. My husband is now on oxygen and as we'd been to a presentation on it and spoken to people using it beforehand, we found the whole process much easier. If there's a group in your area I'd recommend going. The BLF website should have info.

[freefaller]

Welcome to the site. You will find great support here.

Sian

Xoxoxo

[callyann in reply to freefaller]

Thanks Sian x

[markl66]

Hi callyann

I was diagnosed with IPF January 2013. Have you just recently been diagnosed after CT and possibly biopsy?

[callyann in reply to markl66]

Thanks mark it helps knowing I,m not on my own x

[callyann262 in reply to callyann]

Hi mark how are you ????

[Offcut]

I had a serious lung infection in 2008 with empyema which over time stripped my lungs and chest cavity of a layer or two. As a result I am now RLD with PH with fibrosis and to help things along I have AF and Tachycardia plus some other problems. But I try to keep a PMA!

Be Well

[Nanaeal]

I don't have the same condition but can remember how hard it was to come to terms with my diagnosis, much harder I imagine if your already supporting your hubby

Best wishes to you both Nan

[callyann]

Thank you nan xx

[Patjhea]

I have IPF had in now for nearly 5 years, has got worse lately, especially moving about, my only hope would be a lung transplant. But as I am 66 and type 2 diabetic chances are slim. See the big white chief on November 9th so all you prayers remember me in one.

[TwinklingStar]

Hello CallyAnn

I have Non-Specific Interstitial Pneunonitis (NSIP) causing Bronchiectasis, Septal Thickening, Widespread Groundglass, Air Trapping and something like some Parenchymal Bands??

I have a genetic condition called Ehlers-Danlos Syndrome which caused me a whole host of other conditions and health problems including Dyspraxia and Causalgia. I also have Hepatitis C which I developed from a 6 pint Blood Transfusion during 1974.

No chance for a lung transplant for me!! Not with all these other health problems!

I feel dietary changes can help and most important is to do exercises. Even if people cannot get off their bed they can at least try to do some breathing exercises and ankles and hands and arms if possible. If you can get up then exercise is going to be crucial as well. I have a Pilates machine. The worst problem is getting up and down to get on it!

I am on Oxygen always all day even when I am just sitting on my bed and moving my arms to type. I sometimes have to use Oxygen at night too. I think I was diagnosed in 2013.

This is not the same condition that you are suffering from though but I hope someone else will come along to help you. Please do not take any notice of life expectancy figures. How long you live will depend on how positive you are, avoiding stress, living a healthy lifestyle and regular exercise including breathing exercises.

Keep Smiling or in my case Keep Twinkling

Love and Hugs to you

Twinkling Star XXxxx

P.S. Don't forget to ask any questions or discuss anything that is concerning you or ask for any advice!

[callyann in reply to TwinklingStar]

Thank you Twinkling star for your advice I appreciate it this thing is so scary at times...Hugs Cally xxxx

[Tuttifruity]

Hi Callyann, I am a Idiopathic Pulmonary Fibrosis fighter. I was diagnosed in May, this year, also have emphaseama,, copd, bronchiectasis, GERD and heart problems.

I also remember feeling 'lost' when I was first told. I needed answers to all the questions in my head, but could not formulate any questions. !

After a few months of research, mostly on the internet, I now feel much more knowledgable, about my health issues.

I am again positive about my future, be it 3 or 10 years, I will take as much enjoyment from every day that I can manage.

It may not surfice other people, but at 61 it will do for me.

If you ever want to chat, you can PM me anytime.

Linda.

[callyann in reply to Tuttifruity]

Thanks Linda I will 😊 xx

[wattoo1971]

My Dad has it. We have been fighting to get him on trial medication but today we were told that it would not work, so now just increasing steroid and oxygen. He is so down at the moment.

[rockett777]

hi Callyann it's been a few week since your post and worry over I.P.F.

How are you today? It is so difficult coming to terms with this illness but on this site ,so many can have a chat and bring cheerful and sometimes sad but good support.

As others have said to be informed, eat well and try to exercise, get the right medical help, and try and join a breathe easy group. Plus enjoy what is possible now, today, is so true!

As my hubby used to say, "unsure its funny", but non the less. Wife l could go out on my mobility scooter and get run over by a kid on a bike or a bus because lm so slow on this bloody thing, so wife till this takes me lm getting on with life. I found his sense of humour mad but it got us through many a worrying time, and we had through accepting help, good support. Take carexx

[callyann]

Hi rockett I,m not feeling to bad at the moment apart from a dry cough sometimes I feel down but coping ok i do pop in the group every day and it helps knowing I'm not on my own and hubbys a big help we pop out most mornings which is nice at the moment I don't get out of breath much so making the most of going places. Thanks for thinking of me 😊 rockett take care xxxxxxx

[Gran1]

My husband was diagnosed with IP back in February but he has also got extensive emphysema. Since then he has been on 24hr oxygen. He started on 2lpm but is now on 4lpm. he needs 6lpm if he exerts himself. This time las year we were both very active donning walking boots and carrying heavy rucksacks loaded with camera equipment. We walked miles! We'd think nothing of kayaking 3 miles into sea. Back in February he took a nosedive in health and ended up on permanent oxygen. Is there anyone there coping with being a carer for a partner who has this condition? Having worked on a hospital respiratory ward for 17 years I have now had to give up my beloved job to take care of my husband and I find it a lot harder than nursing all my patients. I would be interested to know how other people deal with this situation of being a carer .

[callyann]

I looked after my mum with dementia and since then my hubby who has had cancer 3 times plus other things it was hard work tiring physical and emotional but you cope..I don't know what its like to care for someone with ipf as its me that's been diagnosed with it....xxx

[fath in reply to callyann]

Hi... I am new here... but to link to your post.. Mum has Mixed Dementia and I have been 24/7 carer for 3.5 years now, and, near 4 years ago, my father died at 86 from IPF... as above... when possible exercise is very good for improving COPD of most sorts... and the groups around the Country can offer supervised programs.. PM me with any queries or suggestions :)...

We all need help and or support at times... I am no exception...

have a good New Year callyann..

fath

[callyann in reply to fath]

Welcome to the group and thank you for replying to my message..

Happy new year to you too..

Callyann

[Lizzy1898]

I do Callyann

[Lily1894]

Yes I have it diagonised Sep 2016