Pulmonary fibrosis

[Wendywiffle80]

Is anyone in the same position as me with pulmonary fibrosis and on oxygen 24-7.

[Katinka46]

Hello Wendy

I see this is your first post. This is a very friendly helpful group and many members have PF. You do seem to have had something of a double whammy. Getting Covid and finding that it has exacerbated your PF. I think the RBH teams are excellent and I am sure they will give you a lot of support. The problem with Covid, of course, is that an understanding of the effects of it are very much a work in progress. In some ways it is another situation where the patients are as knowledgeable the doctors.

All the best

K x

[Wendywiffle80 in reply to Katinka46]

Thankyou so much Katinka for getting in touch its good to get others views and I know its going to be helpful.

[Burghy in reply to Wendywiffle80]

I also have what you have my specialist has put me on medication to slow down the fibrosis no oxygen that’s his aim to keep me off oxygen I feel a lot better I to am 73

[Wendywiffle80 in reply to Burghy]

hello Burghy thankyou for your reply I am desperately hoping I will be able to come off oxygen, I have to go into hospital for a valve replacement in my aorta and maybe once that is done it will help with my breathing as I am told I have 60% lung capacity and Im sure I should be able to breath without oxygen if thats the case I wonder if anyone has had the same.

[Burghy in reply to Wendywiffle80]

my specialist is so good I hope that it gives me more time at $3370 dollars a month I pray. I had my case taken to four doctors forums luckily the government in Aust pays for them I wish you all the luck

[Wendywiffle80 in reply to Burghy]

thankyou and I wish you luck too.

[Biofreak]

Hi Wendy. I think there are quite a few people on oxygen 24/7 on the site and many on ambulatory oxygen. My husband had Idiopathic pulmonary fibrosis and was on oxygen 24/7. That was before his transplant in June 2021. Unfortunately he is now having to use ambulatory oxygen because his lungs are in chronic rejection. I am his carer and he does need quite a lot of support. I hope you have supportive people around you. I have learned a lot from members on this site. From your bio I see you also have osteoporosis and other inflammatory conditions. I have rheumatoid arthritis so it's clear to me that you have much to deal with. Welcome xx

[Wendywiffle80 in reply to Biofreak]

Thankyou so much, Im so very sorry to hear about your husband it must be very challenging for you both. xx

[Biofreak in reply to Wendywiffle80]

It's certainly challenging Wendy but we take one day at a time and life is very different to what we hoped for in retirement. So one day at a time has become the motto. How are you coping with the Perfenidone? My husband was ok with it but unfortunately his fibrosis was diagnosed very late on by which time the fibrosis had progressed too far for it to make a big difference. As katinka said I think the NHS is still only just discovering what the longer term effects of covid are. One of our biggest fears was what would happen if either of us got it.

[Wendywiffle80 in reply to Biofreak]

Ive been on pirfenedone for a year now but it still makes me feel sick and I get a few side affects but Ive persevered and its possible that its helped me as I had a CT scan and lung function test and there has been no deterioration in almost a year.I struggle very much with my breathing but try and be as active as I can. I have a good supportive family so Im very lucky in that area. you sound as though you have a really positive attitude which I believe is so important. stay safe.

[Biofreak]

That's good news and shows the perfenidone is doing it's job. I'm positive by nature but it's hard to maintain sometimes I admit. Look after yourself too Wendy.xx

[111Addie]

I’ve got PF, and my oxygen needs vary. I’m in Ontario which is humid in summer, and that plays the devil with me. So oxygen hoses everywhere, 24/7. Now suddenly, I can breathe! When in the UK I’m ok. I started prednisone recently, which coincided with my oxygen levels going up, so the doctors think that’s what has helped. It’s still Ideopathic, as they are stumped as to the cause, thinking an auto immune disease but I have no signs of anything being wrong with me. They can’t figure out how I can be so healthy, flexible, active, pain free, youthful (I’m 79) but have PF.

Welcome to the forum, I belong to a couple of American ones too, and they all provide so much more information and support than seems to be available from the doctors.

[craftyone]

Hello Wendy, I have ILD and I have been on oxygen 24 7 for years as well as steroids and multiple other meds. Just keep positive and accept what the dr's prescribe. I know it will be hard for you to accept your situation, I would imagine everyone finds a prognosis difficult to accept. Just remember there is always someone on here to chat with. I hope you find answers here and I wish you all the best.

[Wendywiffle80 in reply to craftyone]

Thankyou

[watergazer]

Sorry I can’t help you but welcome to the site. X

[Wendywiffle80 in reply to watergazer]

thank you

[Injecter1]

hello I also have IPF and use oxygen 24/7.., I’m on perfenidone and steroids, I’m 67 and have had this for 5 years.

[Wendywiffle80]

Hello Injector1 nice to be intouch, do you find you have side effects with the pirfenidone

[Injecter1 in reply to Wendywiffle80]

hello Wendy…. Yes I do get side effects and it has taken me several months to get to the maximum dose, but I’m there now. Unfortunately my recent lung function test showed a 6% drop so not sure at the moment whether they are doing much. I’ve completed a PR course and definitely see an improvement in my stamina. The PR team say I’ve made a significant improvement so fingers crossed.

[Wendywiffle80]

I have my fingers crossed for you in the hope that you continue to improve with PR

[Wendywiffle80]

hello Verbena67 thankyou for replying I havent tried Laser as Ive never heard of it before can you help with more info please. thankyou

[Wendywiffle80]

Gosh thankyou Ill look into it. best wishes