Spoke to specialist on Monday results .... Pulmonary fibrosis. I asked what my lung function test results were and he said 54%in each lung?
Got 6 weeks to come off steroids, mentioned a drug that I fit the criteria for a drug thats all I remember, every question I had went straight out my head if that makes sense !!!
My head is all over the place now that I know again if that makes sense?
Got no support offered so I spoke to BLF nurse to explain
I'm sorry if this post doesn't make sense my memory is terrible on the steroids and to be really honest I give up
Feeling low like having to wait 17 months and now its real?
I'm terrified my biggest fear is not being able to breath since I was little.
Again sorry if this post doesn't make sense, anyway I'll sign-off need to digest everything. Thank you for taking time to read my post. Take ❤ Michael.
Thank you for your reassuring messages 🙏
This is the most welcoming and friendly people
A big thank you 😊 .
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Mickie67
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Mickie,your lung function tests at 54% with pulmonary fibrosis are still in my unqualified mind pretty much a good sign that you are not leaving this planet any time soon.in fact do me a favour and do a swap as with less than 20% i am still chugging along.Your consultant and his team are to hand for further info with regards your current meds and should talk you through it all in good course.
Keep positive you have every chance of leading a long and productive life,
I don't have any advice or knowledge to pass on but want to wish you well. Horrible being worried so hopefully others on here can put your mind at ease. Best wishes to you.
Your confusion is understandable, Mickie67, but you are still the same person you were before the results were given. If the steroids are helping to cause additional confusion on top of the stress of waiting so long, at least your consultant doesn't think you need them any more. It sounds good that he thinks a specific medication will help you. All the best for your ongoing treatment now you and your GP know precisely what is happening in your lungs.
Hi Michael, these things do come as a shock. I think Pete’s lung function was 48% last time he had a test but he’s doing pretty well all things considered.
Pete is on 10mg of steroids per day and will stay on that. I hope whatever drugs you’re prescribed will help you to carry on living life to the full.
Give yourself time to let it all sink in. Get your questions on paper for when you have a chance to ask them but I would cautiously suggest that 54% is not too bad. Cautiously because I know almost nothing about fibrosis but for other lung diseases people manage very well at that level.
Hi Michael, can understand how you are feeling, but at least you have the diagnosis now and have been offered treatment. I would say focus on the things that you can do , rather than the ones you can’t , and make the most of your time even though we are restricted by Covid. This forum is very helpful for tips and support. Take care and good luck !
Hi Mickie, I don’t know about your condition but just want to wish you well. You can ask your GP and consultant questions. I ask loads! It’s worth writing things down so that you can remember things afterwards because sometimes there’s lots to take in!
I’m doing ok. Have had some issues but they’re in the process of getting sorted. Take care and keep talking to people. Anxiety is horrible but when shared it helps keep things in perspective a bit more.
Hi Mickie, just wanted to say I'm thinking of you. I don't have your lung disease but, when I was an outpatient, even though I had usually taken a written list of questions with me, I often came out of the appointment with my head a whizz and remembering little of what had been said. It is early days for you and your diagnosis so be gentle with yourself. You have the prospect of a new medication once you have weaned off the steroids and time to formulate a list to ask your doctor/specialist for you next appointment.
Hi Mickie. I'm not surprised you're feeling confused after that long wait and then a lot of stuff to take in. Take it easy, be gentle with yourself. I trust things will start to look clearer soon and the new medication regime will help . It will be good to get rid of the steroids.
It's a lot to get your head around, I'm sure, but now that you have a proper diagnosis, you should get the appropriate treatment which must be a good thing.Go easy on yourself for a while - nothing's going to change overnight - and once you have got over the shock, start asking the questions that went out of your head this time. Writing them down can be the best thing. (But then you have to remember where you put the list!🤣
Hi Mickie you have had a lot of good answers here. Don't forget you are part of our big HU family and we all support and help each other. Between us we have a lot of lived knowledge of lung disease and will always help and support you as much as possible. x
It is all such a lot to take in. I hope that your consultant sends you a copy of the letter to your GP. If not perhaps ask for one ? I find it useful in checking out my understanding of the appointment discussion. Grace
Hi, I am 70 yo and actually living with one lung since 2018, lung function 50% FEV 48% and I can run almost a normal life with obvious ups and downs.My suggestion is this : try not to intoxicate yourself with various preventers, your body will become addicted and you will need more and more .
REACT , go on rehab and exercise, exercise, exercise...clear your lungs with saline solution and nebuliser (add two drops of good quality eucalyptus oil) 3 times a day,and let your lungs to react instead of relying on chemicals.
Don`t forget , long term steroids are no beneficial in your condition , but ask a professional and he will tell the same , a nurse is non a specialist.
Steroids will kill your immune system.
No smoking, limit drinking, avoid joints, more sleep , good healthy diet, less stress
Second : if you can, try to bypass NHS delays ,use your savings(if you have some) and go private, a visit with a private pulmonologist here in London costs 150 pounds , but this will mean peace of mind and less anxiety ...in my case I needed an echosound and on NHS I was booked in July!
I`ve done it privately (100 pounds )in 3 days...I had my results commented by a private doctor IN PERSON after 5 days (150 pounds 30 minutes visit); in the meantime I received a letter from NHS for an appointment with the NHS cardiologist ONLINE end of June .(how a cardiologist can visit a patient online remains a mistery)
Third , be positive I`ve been through that, and you will succeed....
Hi Mickie, I’m so sorry to hear of your diagnosis and I know it comes as a shock but it’s not the end of the world.I waited over a year for a diagnosis and again no information just a follow up appointment in six months. This was with my local hospital.
I don’t know who your consultant is but hope he is experienced in PF. I managed to change to The Royal Brompton in London, but of course it depends on where you live.
If it hasn’t been suggested ask to go on a pulmonary rehab course. You learn an awful lot and get into gentle exercising which is so important.
Well done for speaking to a BLF nurse and not going to google.
I was diagnosed with IPF in 2013 and am still here 😃.
Join Action for Pulmonary Fibrosis, there is lots of helpful information there. They can also put you in touch with a local meet up group. Mine is every two months and is on zoom at the moment.
There’s a lot to digest at the start, and folks on here are good listeners and always there to help.
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