Pulmonary fibrosis

[Godgrace]

I would just like to hear from people that are dealing with this diagnosis, and any tips and titbits they might have.

Thanks

[Katinka46]

There are several members with this condition on this forum. And someone will respond soon. But whatever your condition this is a brilliant place to be, very helpful, friendly, funny and supportive.

All the best

[mary65]

Hi,I have also been told by rheumatologist that I have pulmonary fibrosis but have not yet seen Thoracic consultant (next week). I hope you get replies to your post with helpful answers. I feel so dispondent at present as I had CT scan in Jan. and have just been left to worry, feel so unwell. The NHS seems to be unable to cope nowadays which is very frightening.Wishing you better treatment.

[Lesley_ann]

Welcome godgrace, as both Katinka and Mary said this is a really good place to find support, help and advice when needed , also people to"listen" who understand what you are going through.

I was diagnosed with pulmonary fibrosis in September 2015 , I think at first it took several month's for my diagnosis to register with me and my family especially as we had never even heard of this disease, this is quite common with people diagnosed with chronic illnesses I have since found.

One thing I will say is as soon as possible see your gp about going on a Pulmonary rehabilitation course. This is an educational program that also teaches you breathing techniques and an exercise routine which does help. If anyone had told me before my diagnosis that I would need to learn how to breath properly I would have laughed but believe me you do, you will also see and meet other people with similar problems. Also see if you can find a local PF support group, I found a group that was for people with lung problems but no one had PF so not quite the same for me. By the way I'm in the East Midlands.

Hopefully you have a good lung consultant but plan in advance what you want to ask them and question things that you don't understand, this is something I didn't do for the first year as I was overwhelmed with all the tests and had not quite come to terms with everything.

Pace yourself and don't feel guilty if you cannot keep up as you used to. I used to feel guilty if I needed to have a sleep during the day but soon realised if I didn't then I would be in bed at 7pm so wouldn't have time with my family anyway.

There will be others here that can pass on their experiences, and hopefully between us all we can be supportive.

Please make sure you carry on talking especially to family and friends, don't be alone with this. If you need a chat on the forum or privately then please let me know. Take care Linda x

[Godgrace]

Thank you very much for your kind informative words.

[Hidden]

G'day GODgrace..We have been thru the washing machine with IPF...thanks to GOD and a donor's caring family my wife now has "new " lungs...many questions to ask you... how long since diagnosis..are you on o2....are you on the "wait " list...I could go on..but probably better for you to advise where you are on your journey.....Best wishes

[sibkev]

i got new lungs last year but i had ipf for 10 years one thing i have to say keep walking i will get you throu it that is the best advice i can give seems simple i know but it streaches lungs keeps em working longer

[Salmo]

Get a pulse oximeter. 95% O2 in the surgery means nothing !!

Find out if you have silent GERD, night time desaturation, exercise induced desaturation etc.

Do not assume consultants have time to give you with the best treatment. They have phenomenal workloads. Hundreds of patients with complex diseases and just a short time (10-20 min max) to deal with you. You need to help them help you. There are a lot of things you can do to help e.g.

Learn consultants language. Research condition so that you know as much about your condition and diagnosis as possible (including issues like pulmonary function tests, disease names, available drugs etc).

Monitor your condition and keep detailed records (daily diary) of your condition in terms of things that apply to you such as distances you can walk, coughing frequency, headaches in morning, mucous amounts etc. Spend time preparing for appointments by collating information so you can give an accurate update of any important changes.

[AngieB72]

I have PF, diagnosed about 2010. Feel free to ask any questions. It effects everyone differently and to different degrees.

Angela