Pulmonary Fibrosis?????

[GeorginaS]

Help!

I'm recently diagnosed with 'fibrosis', although two consultants don't agree with each other!!

I've coughed for 18 months but, I don't cough when I'm in bed, on the treadmill (3.5 mph on an elevation) when walking (6-10 miles a day)or when I'm playing league badminton (for two hours).

I wake up, sit up and cough. it's always a productive cough. I eat and then I cough! I can cough intermittently during the day but only a little bit.

It's all very strange! Does anyone have any advice/ideas? Thank you in advance x

[Tinkz]

Sorry I don't have much help but wish you well, the fact that you don't seem to suffer breathlessness and can walk 10 miles a day and play badminton with out a struggle is excellent and a positive 😀 did the consultant give you any info about the condition, did he say it is actual pulmonary fibrosis? Or slight fibrosis as in a little scarring, sorry I don't really know to much but think there is a significant difference (please anyone correct me if I'm wrong) take care and hope you get further info soon.

[GeorginaS in reply to Tinkz]

Thank you for replying. Really appreciate it. He said fibrosis and then wrote about an uncertain future! He said he thought the next step is prednisolone. It's two weeks since I saw him and I've a huge number of questions. Is fibrosis and Pulmonary Fibrosis different? Maybe someone else in here can advise us? x

[mrsmummy in reply to GeorginaS]

If you live in the UK, why not call the BLF helpline on 03000 030 555 during office hours, Mon - Fri.

[GeorginaS in reply to mrsmummy]

Thank you. I'll do that x

[Helen6]

Hi Georgina, I'm wondering how your fibrosis was diagnosed. Was it via a CT scan? Pulmonary fibrosis can be difficult to diagnose and sometimes a biopsy is done to confirm the diagnosis. PF does develop over time and it's not until something serious happens e.g. Repeated chest infections or shortness of breath that most people are referred to a consultant. I was referred due to a serious chest infection. At that time, I had a cough similar to what you describe but otherwise felt fine. Like you, I could still do reasonable physical exercise without a problem. Over the next 4 years, my lung function gradually deteriorated. It may be that you do have pulmonary fibrosis but I am sure that there must be other conditions with similar initial symptoms. A biopsy would confirm whether or not you have PF but it contains risks and for that reason, I decided not to take this option. Because of this it took my consultant 2 years to be certain that I had IPF. This condition is not easy to diagnose with certainty (without a biopsy) in its early stages so I can understand why 2 consultants might not agree on a diagnosis at this stage. My best guess is that you will be monitored for a while to see how things are going.

Best Wishes,

Helen

[GeorginaS in reply to Helen6]

Hi Helen

Thanks for your reply. I had three lung infections last year and that started the cough. Each time the steroids helped. From what I've read I don't fancy a biopsy and my lung function gas exchange is slightly lower but other results seemed ok.

Did your consultant put you on a course of steroids whilst making up his/her mind about what you had? When I asked about whether my infections could have caused the scarring my consultant said no. I thought infections could cause damage?

The strange thing is that I feel if I do have pulmonary fibrosis I've had it for some years as since being young (I'm now 64) I don't think I've breathed deeply. My cough is also productive and they say I should have a dry hacking cough. I'm going to be put in high dose of prednisone.

So how are you doing now? Are you on any treatment and have you still got your cough? x

[Helen6 in reply to GeorginaS]

Hi Georgina, I have only had steroids and antibiotics when I have had a chest infection but not ongoing. I was on prednisolone but could not tolerate it due to nausea. I was then put on Nintedanib which I did tolerate much better but I stopped taking this when my condition deteriorated. Like you, I have a productive cough. This is normal for IPF as your lungs produce mucus to deal with the scarring. In my experience, this has become worse as my condition has worsened. After a 4 day assessment, I have recently been given the OK to go on the lung transplant list. I hope that prednisolone works for you in slowing down the scarring process and that you can carry on with your activities for as long as possible.

Best Wishes,

Helen

[GeorginaS in reply to Helen6]

Thanks Helen. When I had three infections last year I was on steroids and antibiotics. One time was for a month. The consultant is talking long term. Not sure if that's moths or years!

My cough isn't there when I sleep or during the day, except for when I eat. Really odd. My throat feels itchy with food and I cough.

Good you've been approved for a lung transplant. I'm 64 and have no idea if there's any age limit on getting a lung transplant?

When I said to the consultant I thought this was brought on with my really bad infections he said that's not it. He didn't go on to say why or how he thought it started.

From reading other posts there seems to be that many people are experiencing very different responses from their consultants.

Thank you so much for taking time to respond to me. Once again I'm really pleased you are approved for a transplant x

[winfar]

I am in same position as over last 5 yearsbeen told consultant almost sure it was ipf then priortomy lung function test i was given steroids by my doctor for suspected fibromyalgia and when i went for tests it showed improvement in both breathing and lung function, so now consultant does not think it us ipf but possible old-scarring. I am now more confused than i was before.

[GeorginaS in reply to winfar]

Wow! That's interesting! I was told a number of years ago I had fibromyalgia. When I had three chest infections/ viruses (January, March & May 2016) I was given steroids and antibiotics. My aches went away. So now we have to wonder why they can't tell the difference. Did you have a CT scan? My 2nd consultant said chest clear in writing! My 3rd consultant Pulmonary Fibrosis. So what do you do now? How long were you on steroids for? x

[winfar]

Hi i have had, over the last few years, numerous scans and lung function tests and have suffered quite severe breathlessness, my last tests in december 2016 showed deterioration and i had lost 25% in my breathing and 20% in lung function, could have bee either way round. Whilst talking to respiratory nurse she mentioned silent reflux and arranged for doctor to prescribe esomeprazole 40mg twicea day and they really helped me with the chest pains i had been having and then i saw consultant in february this year who said the team had been having discussion and agreed they thought it was ipf but still unabe to give a firm diagnosis. So really still non the wiser. I have just moved house and all my prior tests etc from ild clinic are being passed over to the new clinic i will be going to so I am hoping with new consultant, new doctor etc, i may get some answers. I was only on steroids for 8 days 3 per day as i never slept whilst on them and couldnt handle the full course. Hope you fare better than me. Take care.

[GeorginaS in reply to winfar]

Hi winfar

It goes to show that there isn't a clear regime for treatment! I was immediately put on acid reflux medication and post nasal drip medication. You had to wait for a nurse to tell you years later! My GP put me on it before the hospital investigations started.

Sorry to hear the news about your lungs but why they can't be clear about the diagnosis is madness. Hopefully the new clinic will be better for you.

So am I right in thinking you had the steroids years after it was suspected or was it immediately after it was suspected?

I'm walking around feeling miserable and frightened. I'm sick of myself and I'm sure others are too. It sounds as though even when diagnosed it's still questionable.

How you are coping and moving house too is amazing!

Please let me know how things are going x

[winfar in reply to GeorginaS]

I didnt rceive anty treatment of any description from ild clinic as all the said they would was the would watch and wait and didnt really want me to go on steroids as they said it would interfere with their diagnosis. It was my doctor who could see i wasnt well who put me on an antibiotic and steroids and it makes me think if i hadnt taken them and waited another couple of weeks for my apppointment i would have deteriorated further and then told it was ipf. I really felt let down by that consultant and couldnt understand why they hadnt given me steroids as it would have given them a diagnosis if that is what has happened now. Big job moving to a new home but i had a lot of support from all my family and although still not straight i am getting there. Now waiting for appointment as i said so will let you know the result if and when i get it. Take care.

[GeorginaS in reply to winfar]

Good grief! Thankfully your doctor helped you. I think you are amazing moving too. You've done well to even start getting straight. It's a huge task.

I'm hoping your new consultant will be much better than your previous one and you'll get the answers you need.

Thanks again for chatting to me x