Action for Pulmonary Fibrosis is UK charity focused on improving the quality of life for PF patients and funding research. Pulmonary fibrosis is a fatal lung disease with no cure affecting 70,000 people in the UK. Most survive fewer than 5 years from diagnosis.
Our vision: A world in which everyone living with pulmonary fibrosis has a better future.
First they tell me I have PF it's taken 2 years nothing really has changed lung function test the same now they want me to go through it all over again because now they are not sure . They think I may just have scarring . Got to have another HD scan . Now I am worried again have I got it or not ! Amazed at the lack of help groups there are for this condition.
It’s really heartbreaking when your lung function drops to below 50% and the doctors take you off the antifibrotics. Please could this particular issue be addressed in future, as well as the various stages of IPF. Thanks for an informative session
Pulmonary hypertension and pulmonary fibrosis diagnosed with sarcoidosis at age 26 diagnosed with pneumoconiosis at age 48 retired at age 50 for obvious reasons resting oxygen of 93/94 drops to 88 when mobilising I'm 60 now and struggling but apparently according to my consultant I'm just fine 😅
My dear friend i can identify with you. This will be my fifth yr.It has been a struggle but i am a fighter, won't give up. There is no cure but with exercise and diet we can have a better quality of life.I pray for your health and well being. I send love, light and Divine Blessings to all.❤🙏
My dad just got diagnosed today. He only has cough for now. He is 82. I tried to be super positive about it to reassure him and he is ok , but I am freaking out right now. He doesn't deserve this. Jesus please heal him.
But why do most doctors LIE to us and refuse to give the diagnosis but will settle for COPD when there clearly is no onbstruction? Why do the doctors AVOID the IPF or PF diagnosis for as long as possible? WHY ARE THEY DOING THIS TO US
Thank you so much that was extremely helpful. I am not long diagnosed with Interstitial Pulmonary Fibrosis and on oxygen. I can't do very much without getting breathless. I also have Osteoporosis and degenerative disc disease and the doctor said my spinal bones are so thin that they could break at any moment. Osteoarthritis is another diagnosis. I also have Aortic Stenosis and have already had a previous anterior Myocardial Infarction which showed up on an ECG and High blood Pressure. I fell and broke my hip in May 2022 or 2023 can't remember... and am still on a rollator. So, all of this means that I have been in bed a lot and I am worried about losing muscle function. Both my husband and I were hospitalised with covid and our family were told not to expect us live or we would be in hospital for 6 months. So, it's been really hard recently.
That's amazing! If it was available here I would prefer it rather than having someone shouting at me and making me feel bad for apparently not doing it right! It is hard to actually get a deep enough breath at the best of times! Thank you everybody!
Hello im jason from new zealand, i have pku, but doing fine, im now, 58, im on my dief, i dont eat out i do my own cooking at home mostly vegetables potatoes and some fruit
Is all bad lung scaring ipf , I was told 4 nearly five years ago , I had bad scaring on one of my lungs , after just surviving pneumonia nearly died a few times collapsed in ane throwing blood up, but I had sepsis too and they wanted to remove the lung but medication started to work just after I’d signed to remove it. I was told I’ll be fine unless I get pneumonia again because it will be fatal. I was told to go to scans every six months but never happened.I seem healthy, it hurts in the cold but that’s it.
I would like to fine a group for support but in Brisbane there just is not one, do I am trying to live with the depression that comes with this awful disease. We need to get more research & find a cure, not for me but future generations.
I have a hard time breathing when I bend over to put on my boots, shave, doing stairs, walking, lift. I thought it had to do with my hiatal hernea and gerd. Noe I realize it’s a lung issue. I can’t bend over to put furniture together. I need to sit on a chair or take breaks to breath. I go for a breathing test in a couple days. I also have 3 kids. I’m losing my mobility. I also have tendinitis. Arthritis in my knee, and it’s hard to do any excercises without hurting myself or being out of breath, I didn’t last 3 min on a treadmill, I gave it away, so frustrated.
The section about oxygen use was so helpful, thank you! I have pulmonary alveola proteinosis and have the 6 min walking test tomorrow to get ambulatory oxygen. All the information out there about getting oxygen have been targeted towards the eldery and made me feel like oxygen isn't for me - even though my spo2 drops to 87% walking down the road. I've seen on RU-vid, of people's experiences and they're saying stuff like, "Now i can play with my grandkids!" But I'm wondering how i can go clubbing and travelling with oxygen lol
Pirfenidone is the only drug out there that supposed to slow the disease down. It is ungodly expensive unless you get in a trial. I did not qualify but found that the VA system in the US has the drug for a fraction of the retail cost. It's a nasty drug with lots of side effects and I'm not sure it's worth it. I'm 77 years old and trying to get used to feeling like a zombie everyday. It may not be doing anything but there is no other options.
Hi. I'm in the US. My cough tears my big hernia worse but I put out tons of thick mucous. I have to spit in the little garbage can next to me. I only just now found out I have pf because it was on my discharge papers from getting an upper endoscopy. Nobody told me anything. I don't know when they made the diagnosis either.
Longevity stats after transplant are not good, but TTTT it still looks substantially better than without transplant. And if that were not the case, there would not be good reason to go through the grueling process.
Rip so sorry for your loss.. This disease is horrible.. My mum suffered from ipf until she lost her battle with the disease on 5th April this year.. We are raising fund to help ipf for other people who are suffering or know someone with ipf. It kills more than cancer but it's not mentioned as much for donations 😞
I had blood test came back normal , had x-ray was told had some scarring . Then had a CT scan nothing heard . then had a lung function test nothing heard should I worry ? funny thing is months later my breathing is getting better chest has stopped hurting . I'm starting to think I had long covid. The other answer is they could have just forgotten about me . I still worry I have PF . But the vid is very interesting .
the weird thing is if I do loads of lugging about I seem to get better . But just waiting to hear . Had blood test , x-ray just got to have lung function test . so bit scared at the moment waiting to hear if I've got it or not another weird thing if I burp I'm ok but just don't know think that's the worst thing the unknown.
I am waiting to hear . they said it was not cancer why o why are all the comments turned off on all the sights on you tube . none of us will say bad things we all want answers that's all . I'm hoping it is something else . Does it come and go or just get worst so many questions and no answers . The worry is the hardest thing have I got it or not. the weird thing is if I do a load of hard work I feel great perhaps it's lack of exercise .
It is such a shame that this disease is not treated like as a severe problem I wish more is done in the treatment and I feel more can be done for more awareness.
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