fibrosis

[dragonuk44]

is there any one here wih fibrosis I could talk to

[sassy59]

I am sure someone will be along soon. My hubby has sarcoidosis which causes scarring particularly on the lungs. You can talk as much as you need to. Take care xxxxxxxxxx

[Gailkings]

I have fibrosis & I feel like you. I don't see many people on here with fibrosis. I have so many questions!! Xxz

[Katinka46]

There are several people with PF on the site. They will make themselves known you, I'm sure. I have a condition that is fibrotic, but it not usually known as Pulmonary Fibrosis although I have read a paper that categorised it as "bronchiolar-centric pulmonary fibrosis." I should be interested in how your condition was diagnosed and what treatment you are being offered.

All the best, and let us know how things develop.

K

[Gailkings in reply to Katinka46]

I had an X-ray & then a scan. Fibrosis what seen. I have rheumatoid arthritis so was instantly taken off methotrexate. They don't know if it's the RA or the methotrexate. They apparently have to have a meeting. I met with respiratory team on Sep 15th & do go back to see her till Nov 23rd. I had PFT but don't know results. My oxygen levels when resting were 88 so I have to go back oct 13th to see if they are still low. If they are I will need oxygen to allow other organs to get there share. But I was told by home oxygen team to stay of ABS & steroids so they could get a true reading. Unfortunately if I do that I can't even do the simplist of tasks so after struggling all week I eventually gave in & I got my tabs. After I've taken those for a few days I can at least walk round my flat & even get to my car & go visiting. I seem to need these tablets every 4 wks. I'm sure they're not going to be happy but I just can't help it. I live on my own in a rural community. I just wish I had more answers. November seems so far away.

[Katinka46 in reply to Gailkings]

Yes. I'm sorry. Does sound grim. There is someone on the site whose RA triggered the same condition I have: Obliterative Bronchiolitis. This site is brilliant and although we don't actually meet the friendliness is genuine and soooooo supportive. We will do all we can to help.

Love and hugs

Kate xx

[dragonuk44 in reply to Katinka46]

Its nice just to reply to every one and to know Im not alone .Thanks to all who have replied .Hope to hear from you again

Take care

Sheila

[dragonuk44 in reply to dragonuk44]

I am on oxygen and it does really help and steroids to

[hufferpuffer]

en.m.wikipedia.org/wiki/Pul...

I think there's a lot of people here suffering from fibrosis.So sorry to hear you have fibrosis, I have some on my lungs and heart I believe.I hope you can find someone who can help you more. When I was asked by the Consultant if there was any questions I had , I just couldn't speak...practically ran home, well I walked away as fast as my lungs would let me go ! 😵

Have you spoken with your doctor about it and what to expect. There are some wonderful nurses working with the BLF I hope you talk to someone soon, take care, huff. 💐🌸

[Gailkings in reply to hufferpuffer]

Hi. I'm so sorry to hear you have it on both. I wasn't even aware that could happen. I wrote down all my questions had I was told by my doctor that what I thought was a chest infection was in actual fact fibrosis. But when I asked her questions she wouldn't be drawn till I'd seen respiratory team so google it was. I asked respiratory all the things I'd written down & they to wouldn't tell me anything till they had all results & their meeting. I have constant headache & cry a lot!! I know I'm not the only one just so confused. Wish you all the best. Xx

[Watfordgirl in reply to Gailkings]

I hope you get another appointment really soon, after their meeting, so that you can ask your questions and get answers. Uncertainty is one of the hardest things to deal with.

Keep in touch, even if it's to share that you're feeling miserable. Sue x

[dragonuk44 in reply to Watfordgirl]

Yes nights are the worst for me . I have one on the 20th Oct so maybe I will try to be braver lol

Take care

Sheila

[Tee1008]

Hello dragonuk44 and welcome. You may find it helpful to also chat to the BLF helpline....03000 030 555.... they are open office hours Mon-Fri. There are several members with your condition, let's hope they see your post.

All the best.

Tee x

[dragonuk44 in reply to Tee1008]

Thanks for this . Would rather talk to some one like me and you lol .Guess this is some thing I need to do lol

Take care .Hope to hear from you soon

Sheila

[fran58]

Hello dragonuk44, I was diagnosed with Alveolitis 7 years ago, I have been feeling pretty poorly recently, my consultant sent me for a ct scan and I was diagnosed as having nsip fibrosis, it came as a bitof a shock, I am due to see my consultant in two weeks, I have lots of questions to ask him, I did have a look on the Internet but I really need to understand how to manage the condition.

Take care

Frances

[Hidden]

G'day DragonUK

I am a carer for my wife who was diagnosed with IPF in May 2014.

We have run the race and 10 weeks ago Susan received "The gift of life" a bilateral lung transplant at the Alfred hospital in Melbourne Australia.

The main problem with the disease is that it affects some, different to others, it can slow down and then speed up again.

Symptoms are S.O.B Coughing, tiredness and can cause clubbing of the fingers and toes.

Do not be alarmed by what you read when using Dr Google to find the answers to your questions.

Most of the literature is "out of date" when compared to the new drugs and treatment now offered.

Is it terminal ....Yes...How long?....How long is a piece of string ?

Is there hope of survival...Definitely.

If I can help you with any information (Not medical, that must be done with your Dr)

please ask.

I am only a keyboard away

Will

[dragonuk44 in reply to Hidden]

Yes the cough really gets me down .I am so glad for your wife .I have Chronic Fifrosis and EAA .I get very tired but the cough some times stops me from sleeping .I seem better when doing some thing now I have the oxygen and have to admit I dont cough as much .Thank you for replying and please keep in touch would love to know how you both go on

Take care

Sheila

[Hidden in reply to dragonuk44]

Thanks Sheila

We started our 10th week post op and have 2 more weeks to go at the Alfred (Hospital) as part of the rehab program.

Then it is fortnightly, saves 3 long trips to the Alfred each week.

We wish you good luck on the journey and will keep in touch.

If you have any questions please feel free to contact us. May not have answers for you but ...you never know

Will

[dragonuk44 in reply to Hidden]

I really hope all goes well .Its got to be welcome and scary all at the same time lol.

[Hidden in reply to dragonuk44]

Thanks Sheila

[Helen6]

Hi Dragonuk44, I was diagnosed with Idiopathic Pulmonary Fibrosis 3 years ago. Feel free to ask any questions or send a private message.

Take Care,

Helen

[dragonuk44 in reply to Helen6]

do you cough a lot and does it stop you from sleeping

[Helen6 in reply to dragonuk44]

I don't cough much at all most of the time, except when I am clearing my chest. I used to have a problem but since cutting out all foodstuffs that seemed to cause coughing, I am fine. I did ask my consultant whether there could be a link between food allergies and IPF. He didn't think so but all I can say is that that has certainly been my experience.

Helen

[Lesley_ann]

Hi dragonuk 44 and Gallkings,

I have pulmonary fibrosis, this is due to rheumatoid nodules in my lungs which then started to cause scaring to the lungs and fluid. I was diagnosed with rheumatoid arthritis in 2002, began taking anti TNF embrol after all other drugs failed in 2005. After constantly complaining of breathlessness and chest pain since 2011 I was finally diagnosed in Sept last year after ct scans and lung function tests . At the moment I have numerous nodules 2m big in my upper lobes and numerous 6mm size in my lower lobes. Like you Gallkings when I asked consultant about this awful disease he doesn't want me to worry so hes been monitoring me and I'm due to see him in November when I will want some answers.Doesn't want us worrying, how you ever heard anything so ridiculous!!! .

The one thing I would say even if you are only newly diagnosed is get on a Pulmonary rehabilitation course, because most people only get diagnosed once the damage as already begun.

Even though it's rare, pulmonary fibrosis is an invisible part of rheumatoid arthritis. I didn't realise until a year ago that RA can attack any muscle or tissue in your body which includes your organs. I hope I haven't gone on to much but not sure how others feel but I think we need to be aware of these things and I need to know what I'm dealing with in order to help myself.

Take care all Linda x

[Gailkings in reply to Lesley_ann]

Sorry to hear that you like me has had to negotiate RA & now PF. I think we drew the short straw!! Lol. Please let me know how you get on in Nov. Hope we both get questions answered. Take care. Xx

[Lesley_ann in reply to Gailkings]

Hi, I sent a PM . Yes I have a list of questions building up, so I can be ready x

[dragonuk44]

yes it is very scarey