ILD and pirfenedone

[Wendywiffle80]

I was diagnosed with ILD two years ago after i was taken into hospital with covid, when I was given the news it knocked me sideways and I seemed to become a different person over night as i couldnt believe Id just been told it was terminal. I am on oxygen (6ltr on movement) I read so many things on the internet that my anxiety levels went through the roof as I believed I would die within a few months or a year (the doctors were very vague but of course they dont know how long people will live with this but I was wondering if anyone on here has the same as me and can tell me their story and how long they have had it. I have not let it stop me doing lots of things and Im always out and about with friends although sometimes I struggle but I wont give in. You all seem so happy to support each other which is vital in our situations.

[Alberta56]

Hi Wendy and welcome. I'm sure some people will be along soon to tell you how long they've been living with ILD- certainly longer than a year. You are doing the right thing living life to the full; try to forget what you've read on Google- it seems designed to frighten people. xxx

[Wendywiffle80 in reply to Alberta56]

Thankyou so much you are right Its wrong to read all his gump on google

[CarolMcl]

Hi. I agree with Alberta56 . I've had ILD, namely pneumonitis and lung fibrosis for a few years now. When I was first diagnosed I hit Dr Google, a big mistake. There's been ups and downs but I don't let it stop me.

[Wendywiffle80 in reply to CarolMcl]

thankyou for that, I am making the most of life I get out and about alot and generally try to carry on as best I can like most of the people on this site and its so uplifting to hear from you.

[CarolMcl]

You're very welcome, it's good to share experiences 🌹

[AngieB72]

Hi I was first diagnosed with my ILD (pulmonary fibrosis) in 2008 - still here!!!!

[Wendywiffle80 in reply to AngieB72]

thats reassuring thankyou Im so glad I joinded this site as its far more reassuring from people in the same boat than google and its doom and gloom.

[Currygirl in reply to AngieB72]

Wow that's so encouraging Angie, I'm going I n hospital next Wed for knee replacement I'm worried because of my pulmonary fibrosis x

[Wheezes in reply to Currygirl]

good luck with your knee op! Take lots of books with you xxx

[Kiki3233 in reply to Currygirl]

Was reading your post and wondering how your stay in hospital went?

[Currygirl in reply to Kiki3233]

hi Kiki came home yesterday and the op went well but I didn't think it would be as painful after x

[Kiki3233 in reply to Currygirl]

Sorry to hear that! Hope you get better soon.

[craftyone]

Hello Wendy, I have ILD when I was diagnosed I was told by the doctor to go home and put my affairs in order as I probably will not live for more than a few months, I was 56. I to felt like I had been knocked sideways with many different thoughts running through my head. I will be celebrating my 65th birthday this year. In the last few months I have felt worse which the Dr's confirmed. I'm a firm believer in staying positive and fight all the way.

[Wendywiffle80 in reply to craftyone]

Thank you that is very reassuring and you sound such a positive person that wont give in so Im hoping you have many more years ahead good luck and god bless

[Injecter1]

Hello Wendy… I was diagnosed aged 62 years with ILD/ pneumonitis following surgery and intensive radiotherapy for abdominal cancer which they cured. I was treated with steroids/immuno suppressants as there wasn’t much else at the time. Like you I trawled the internet and just couldn’t believe it was happening to me especially as I had just been through the worse 9 months of my life. My symptoms were dry hacking cough and increasing breathlessness, slowly my lung function started to decline and my breathlessness became worse. My scans then revealed that I now had pulmonary fibrosis, the worse possible diagnosis. I was prescribed Nintedinib which made me very ill with dreadful side effects so they switched it to perfenidone which I am able to tolerate, my lung function continues to decline and so I have had to learn to accept my limitations. I

still even now find it hard to understand that we can cure cancers but this devastating illness is not curable. I have had to retire from my job as a nurse which I loved as I now require oxygen 24/7 and I recently had a chair lift fitted at home which has helped enormously. I’m in the later stages of this illness so my advice is to do as much as you can now, if your still able to travel internationally. Like everyone on this forum I try to live my best life and do as much as I can but as we all know it’s hard and at times I feel very sad for what I have lost as my world becomes smaller. I’m so lucky to have an amazing family who support me and 3 beautiful little grandchildren. We are all off to the Yorkshire Dales for Easter which I’m so excited about! Stay Well x

[Wendywiffle80 in reply to Injecter1]

you sound an amazing person and as I was reading your reply I had tears in my eyes as I can relate to everything you have writen especially about our world getting smaller as I was such an outward go get it sort of person like you, I am staying positive and going out and about with friends and family but each time I get pain in my chest I wonder if its getting worse but I wont give in,Im off to Wales for easter to stay with friends so looking forward to that.please take care and keep intouch with how you are.

[Izb1]

Nobody can say how long we will live Wendy and google will just scare the pants of you. I cant advise but will say to keep positive and look after yourself, live life to the full x

[Wendywiffle80 in reply to Izb1]

thankyou and I know your right and will not be consulting google again. best wishes x

[cazza34]

Hi wendy ooh stay away from Dr Google it just messes with your head. I also have fibrosis and hypersensitivity pneumonitis I was diagnosed 8 years ago. I'm on oxygen 24/7 which I dont like but it is what it is. I'm 62. I had to give up my wedding floristry business 2019, which was hard, but have somehow managed to fill the time with going to the cinema ( get a CEA card, and blue badge) having 4 grandchildren under 5 and I currently have my son home as he has finished university. My best advice is if ur busy one day make sure u rest the next day. Any questions feel free to ask.

[Wendywiffle80 in reply to cazza34]

thankyou so much It sounds as if you keep really busy you were so young when you were diagnosed. I wish there was more money put into research for this awful disease.

[cazza34 in reply to Wendywiffle80]

Yes I wish there was more to fund a cure. I'm also on Nintedanib which slows down the scarring of the fibrosis. I've been taking that for 8 months. Ask to be put on this. I think if you look after yourself good diet, do a little excercise, fill ur days with lots of good thing to do. I know others in a different group that have had fibrosis for over 15 years. I'm now off to watch a film on Netflix and scoff a cuppa and hot cross bun.

[Wendywiffle80 in reply to cazza34]

Brilliant enjoy your hot cross bun and coffee, Ive just got in from having lunch with my friends at the lung foundation breath easy group it was really nice. Ive been so very lucky that so many of you have taken the time to offer support and share your stories with me its been very uplifting. Thankyou

[1carus]

Hi Wendy I have had it 2 years too and am 74. am between 4 and 6 on the ambulatory oxygen and ma told the ILD has now overtaken the emphysema. Decided I was going to do the best I possibly can with whats left so did a trip to Rwanda to see the gorillas - truly life affirming and ma now starting on a book - never done one before but thought as I get more immobile I need something other than repeats of Midsummer Murders to take my mind off the inevitable.

I am lucky to have 2 dogs which means I have to exercise whether I like it or not but as it is apparently the very best thing I can do they get walked to the best of my ability . Staying positive is a must although there are time when it is ok not to

Hope you manage forward ok - all the very best

Peter

[Wendywiffle80 in reply to 1carus]

Hello Peter wow I admire you, a trip to Rwanda how wonderful I am desperate to get away again before its too late but How did you manage the oxygen situation and the health insurence as I keep coming up against a brick wall with the oxygen and Id need to rob a bank to pay for health insurence.I have had to holiday in this country which is great but oh to see the sun and be able to visit more countries as that has always been my passion.I wish you well and maybe you will get another stab at getting away.

[1carus in reply to Wendywiffle80]

been trying to do the trip for 20 years but found a company who managed to get me portered up the mountain. The insurance was an arm and a leg but I went for an annual as I thought I might have 12 months left for travel - wheelchairs at every airport and clever breathing exercises got me though a fit to fly test . I also have an oxygen concentrator for when all else failed. The trip damn near killed me and I broke all the rules but would do it again in a heartbeat.

[Wendywiffle80 in reply to 1carus]

wonderful I bet you were so chuffed with yourself,I take my hat off to you. best of luck with your book and your future

[cazza34 in reply to 1carus]

Hello sorry to hijack your reply, I was just replying to wendy ( see above) can I just ask how did you organise oxygen canisters in Rwanda? Was it expensive

[1carus in reply to cazza34]

I didnt I got a concentrator with me

[cazza34 in reply to 1carus]

Can you use that when you are out and about?

[1carus in reply to cazza34]

philips respironics simmly go mini - get your oxygen service to prescribe it and yes

[cazza34 in reply to 1carus]

I need constant flow is it? Or is it pulse?

[1carus]

If you go for insurance leave USA out which whacks it up. On the principal that I cant take it with me and I cant beat this wretched disease but I can give it a good fight but I need treats large and small to keep me motivated for the fight.

I wish you the slowest progress and no flare ups and at least some enjoyment on your path - all the very best

Peter

[Wendywiffle80 in reply to 1carus]

Thankyou so very much.

[1carus in reply to Wendywiffle80]

Wendy you are so welcome whilst I would not wish this on anyone it is good to find someone in a similar place to me - I plan to be on here for a while - had scans today and seeing specialist next month to get an update. How are you doing on meds and relationships - both matter

[Wendywiffle80 in reply to 1carus]

hi 1carus I just take Pirfenedone for my lungs but get really bad stomach cramps after food but I try to put up with that the best I can,I also take prednisolone for my PMR and GCA but Ive taken that for over 10 years and I have been trying to get off of them but with no luck as the side affects are hideious and life changing. Ive just been diagnosed with high blood pressure so on Ramipril Ive had a TAVI in the last month so now on asprin once a day, through this they have put me on lansoprazole, believe me I hate taking tablets but now all of a sudden Ive got a tube full like smarties. I hope all goes well with your visit to the specialist. I live alone but have the most wonderful network around me of family and friends. no chance of a relationship now as he would have to be a saint but it wold be nice. good luck 1carus for the future.

[1carus in reply to Wendywiffle80]

family and friends are best - like you on a cocktails of tabs ad inhalers and inhaled antibiotics to avoid infections. I was put o Nintedanib 6 months ago so am wondering if the scan will show any slow down. It also causes stomach upset but if it works worth putting up to .

Do keep in touch - great to write to you - take care

[MMaud]

I have knowingly lived with IPF for about 18 months now. I say knowingly because I had no symptoms when diagnosed and right now, its still the same.

I started on Nintedanib almost immediately on the basis I was well and wanted to remain so.

I am currently in the last 2 weeks of a 3 month trip to SE Asia. I have loved every minute. I have walked an average of 10km each morning, in temperatures rising through the morning to the 40s. I am well.

None of us get to choose the ends of our lives, but we do get to choose how we live the bulk of it. To me, that means fully and where necessary blowing a great big raspberry at statistics I don’t care to embrace.

We all reach an end one day, but I’m doing all I can to make sure that isn’t any day soon. Life is for having adventures and making memories. I have no intention of sitting at home waiting for bad stuff to happen, because if it is in my fate, it’ll happen anyway.

Good luck for many, many good days.

[Wendywiffle80 in reply to MMaud]

here here my friend keep it up such positive thoughts. like you I cram everything possible in every day and will not give up or give in I just needed to know I was not alone in my diagnosis as so many people say oh dear I know how you feel (when they see me with my oxygen) but havent got a clue as they are as fit as fiddles and I can never understand why people feel they have to say they understand(.Im sure they are trying to be nice ) its good that so many of you who honestly know how it feels have responded to me,Thankyou

[cazza34 in reply to MMaud]

So well said, enjoy the rest of your amazing trip.

[MMaud in reply to cazza34]

I'm just off out for my walk,.......................... (It's 09:30 here, so Ihaven't completely lost my marbles. 😂 Yet.)