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Pulmonary Fibrosis

pechinawa profile image
13 Replies

Hi folks I have been suffering the above for almost two years now. Things are deteriorating slowly. I am suffering from depression trying to come to terms with what I am going through as I am not very old.

I have been watching all the emails and can feel for each and everyone of you as I know what you are going through,

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pechinawa profile image
pechinawa
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13 Replies
Mocarey profile image
Mocarey

dear pechinawa, I am sorry you are depressed and hope you are getting the proper treatment for it. It is many years since I was diagnosed with p fibrosis as a result of sarcoid. But I am still here aged 65.

I am reasonably new here myself but there is a lot of support from a wide range of people.

Perhaps you should phone the BLF helpline and they will reassure you, I hope you find the strength to accept your illness and enjoy a good quality of life.

buddygirl profile image
buddygirl

Hi pechinawana l have IPF to and have joined the BLF about two months ago as l felt alone and stumbled on this site and it's been lovely to get advice,talk to people. I am also depressed and know how you feel this year has been hard. emotionally hard for me as l have got worse needing a scooter and a stair lift all very expensive too, and as Morcarey says it 's trying to accept the loss of ones own life. I have just had to come off a antidepressant as I had a bad reaction to it, now l am back to square one. l am 66 this week and have had it now 10 years next year l was told my life span was 10 to 14 as l have the slow one, l have just had a chest virus which has made me feel so ill, and the coughing drives me mad, l seem to have what is called a wet cough and not the dry which is usual with IPF, l am just taking steroids as l have tried all the usual medication but have had such bad reaction after taking them for months so there's not much they can do for me. Do you cough all the time? Mine is a barking cough which makes my chest so sore. I hope l haven't said to much but nice to know some one who is struggling like me. Please feel free to chat if you want I think you can also reply as a private message if you want.

tanyamarie profile image
tanyamarie in reply tobuddygirl

Happy 66th for this week!

jacksea profile image
jacksea in reply tobuddygirl

Hi Buddygirl... Happy Birthday. I am 68 and have had IPF for two years and been given a 3 year life span as I have the fast developing IPF. Up to the present moment I have not had a chest infection (fingers x) I also suffer from depression and anxiety attacks which are really dreadful. Having seen my consultant this week I was given no new information on trials etc. and was advised not to go on any. I felt the appointment was a waste of time and energy. I have another appointment for three month's time but for what??? I too have a deep chest cough but by the time I have managed to get the mucus up I am completely out of breath even though I am on oxygen 24/7 it is very frightening and I feel my time is 'up' and this starts an anxiety attack. Like you I use a scooter and a stairlift. It has been a lot to take in and come to terms with (if you ever do) Anyway trying to make the most of things. Keep your chin up. Wishing all a merry christmas.

Welcome Pechinawa. I have COPD not PF but can empathise with the depression. It hits at times and can be truly awful to battle. Others on here have PF and I am sure they will also welcome you. Calling the BLF is a good suggestion. 03000 030 555 is the number of the helpline. They are open Mon-Fri from 10am to 6pm.

PollyP profile image
PollyP

Hi, thinking of you today, and hoping that you will find something in the day which will help you to lift your mood.

You are in my thoughts.

All good wishes,

Alan46ipf profile image
Alan46ipf

Hi pechinawa I also have ipf and Ive only just turned 47 last week I can understand what your feeling more than most on here.i have a very young family my wife is only 36 and I have 3 kids aged 14 12 & 11. I only joined this site 3months ago and am also the blf site. But I find the most understanding one for me is the Facebook site pulmonary fibrosis uk. This site has nothing but sufferers and careers of ipf /pf . All other sites have other illnesses on who don't really understand what we're going through. Hope this helps

buddygirl profile image
buddygirl in reply toAlan46ipf

Hi Alan

Have you had your biopsy yet.

from Buddygirl

thatcham1939 profile image
thatcham1939

Hi Pechinawana.

i havent got P.F but i do know how alone you can,be please contact the B.L.F. they are very inderstanding and im sure will give you good advice.

I will be thinking of you and so will many others on this site, do not suffer alone.

love jan x

tanyamarie profile image
tanyamarie

Hello,

Do you have a family support network? I do believe that having a support network is half the battle in fighting any illness and also having an excellent rapport with both your GP and specialist. There are many treatments available, both medically and herbally for depression and it may also be that as you are still coming to terms with everything, talking to a counsellor will help. The BLF helpline can help with any advice and point you in the right direction.

Have you tried Pulmonary Rehabilitation yet? If not, ask about that at your surgery and get enrolled asap. Not only will you learn alot, it is great for socialising and being in touch with the 'outside' world is paramount I think so you don't feel shut away from the world. I could go on forever about what I think could help you hun because I hate to see anyone suffer but one step at a time.

Please do take care and know that we are all here if you need us xxxxxxxxxxxxx

GinaLaliq profile image
GinaLaliq

I think that you do need help. We all need help at different points in our lives for different reasons. Only you can say what help you need and I think that is part of the process of improving the quality of one’s life – To be able to be your own friend.

Find the help you need.

Alan46ipf profile image
Alan46ipf

Hi buddygirl yes had a biopsy in sept still waiting for results not that it's going to change the fact that I've got ipf but could shed some light as to why I have it.

libbygood profile image
libbygood

I have COPD but I do get depression, I assume you have medical help with the depression, I did and it was a life saver, Take care.

Lib x

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