Anyone out there know anything helpful ? Will it go to 2nd lung. I'm 58 and just been diagnosed my husband has dismissed it as just another menopausal problem. What can I say bury your head dear this is real. I'm a bit upset but I'll cope I have no one to confide in talk to about it without heart break. I want to be sure of my facts I'm also a cystic fibrosis carrier anyone know for sure if they are related
Hi Lesley
My husband had IPF but sadly passed away in February this year. I am in touch with his first consultant who is doing research into IPF and she is researching rapeseed ,unfortuneately too late for my husband, as being bad for people with your condition. Unfortunately this oil is in nearly everything unless you cook from scratch. I hope this is of help
I have had pulmonary fibrosis for four years. It is a Very serious condition, I'm afraid. The most important thing is to get the drug Esbriet as soon as possible. Demand to see a pulmonary specialist. I am afraid that your husband is irresponsible. Don't listen to him. Go to a pulmonary specialist as soon as you can. Esbriet will give you a longer life and a tolerable one. If you get the drug quickly you will have a long life.
best wishes and good luck.
neville
Hi Lesley,
My name is Linda, not sure how helpful my experience will be but maybe it will help you to ask questions when you next visit consultant.
I had been short of breath,chest pain and coughing so much for several year's. Every time I told gp,s or my rheumatologist ( I was diagnosed with rheumatoid arthritis in 2002 ) I was told it was down to rheumatoid problems. Last year I was lucky to see a locum doctor who knew about respiratory problems and she referred me to a lung consultant. After ct scans and lung function tests I was diagnosed with pulmonary fibrosis causes by rheumatoid nodules and scaring in both upper and lower lobes of both sides of my lungs. He explained that I had probably had this problem for a few years. This was in September last year and I have been monitored for the last year so that they can see if or how my lungs are deteriorating. Everyone is different in how quickly PF effects them, and as you may have realised there's such a lot they need to find out more about this awful disease.
I have just started a pulmonary rehabilitation course and that has been really useful in explaining more about this and they teach you excersises to help with your breathing
I hope this helps Lesley, I personally think its no good burying your head in the sand, if you are like me you need to know what you are dealing with. Ps I am 58 next june, do you know what as caused your PF? Most people don't.
Take care Linda x
Hi Neville,
Just seen your post when I replied to Lesley. I don't now if you are in the uk but having seen my consultant 3 times since being diagnosed last September he as never mentioned meds. I have rheumatoid nodules in both upper and lower lobes on both sides of my lungs, these are 2mm big in upper lobes and 6mm size in lower lobes. They have already caused extensive scarring and he believes that this started about 4/5 years ago. I'm seeing him next month so will ask about meds.Linda
I have been treated very promptly. I saw a specialist and had X-rays and scans in less than a month after seeing my go. But I live inFrance, where health services are extremely good. Keep demanding specialist treatment. Saving a month or two may make a difference of years in your life.
DEMAND Esbriet or ninetab medication. It if EXTREMELY important to get treated as soon as possible.
Best wishes,
Neville
Thanks for the information Neville, I will try and get as much info as possible on the meds you mentioned and talk it through with my consultant. I'm not very good at demanding but as my 2nd scan showed more nodules and scaring than my first scan 6months earlier I'm going to be assertive. Thanks again Linda
Hi Linda
Thank you for your input, I feel very alone Gp just dropped it on me and Ive come home to investigate. She hasn't offered medication, advice or a consultant appointment, In fact I was told its old age lung !!! I am a Cystic fibrosis carrier I have blood pressure, but I have a carry attitude perhaps this is my downfall !!.
I have read Neville's post and I am going back to GP to see where we go from here, Keep in touch we are a minority I think do you know to any groups
Thank you Neville how very informative your reply is as my reply to Linda states I'm very much in the dark here. France seem to be on the ball. I need to be and know what I'm talking about as no one at my Gp seems to have much idea. Thank you Neville
Lesley, there are groups around but seem thin on the ground. Do you mind saying where you live? I'm in Loughborough Leicestershire.
And yes we are thin on the ground so we should keep in touch and great that we are same age so can help each other. Linda xx
Hi Lesley, yes we are in the minority and yes we will keep in touch.
There are quite a few groups you can go to depending on where you are from. I'm from Loughborough Leicestershire do you mind me asking where you are from?
One thing I would say is go and ask your gp to refer you to a pulmonary rehabilitation course. I've just started one two weeks ago and getting a lot out of it. I felt a bit of a fraud to begin with as the other 6 all had COPD caused by smoking and more advanced than me but PF is different to COPD but still as serious and I was told quicker we get help teaching us to breath properly and learn breathing techniques the better. Take care Linda xx
Linda that would be lovely. I've just relocated to Merseyside yep you read correct from Scotland. I'm from Walsall Westmids originally. I hate it here but prices were out of our reach so yet another annoying episode. The good thing is that in Scotland it would be 100'ds of miles to a hospital or group so at least that's a bonus, plus they never found anything. Should have stayed there living in oblivion wud have been easier. I'm on facebook if you do it if not wud be good to stay in touch few and far between elite group lol on the lighter side
Ok your a bit of a distance from me Lesley but no problem keeping touch on here. If you want we can exchange phone numbers?
I'm on Facebook but privately as its a lot to do with the fact that I have experienced PTSD. But I can let you have my details and if you ask me to be a friend I can except.all the best Linda xx
Your doctor could look at www.nhschoice/treatment/pulmonary fibrosis
i hope that is the correct url
neville
Good morning Lesley. I'm in Canada but Pulmonary Fibrosis knows no borders. I was dianosed with Idiopathic Pulmonary Fibrosis four and a half years ago but I must be luckier than most as I do not seem to exhibit most of the symptoms I have read about. I have read the input you have received from Linda and Neville and appaud them for their efforts to assist you. you should cetainly insist that your GP refer you to a lung specialist as IPF is a very rare condition and GPs are certainly not knowledgeable enough to treat you. I also encourage you to learn as much as you can about IPF. Here is a link to the Canadian Pulmonary Fibrosis Foundation. It is full of good information and I hope it helps. My best to you going forward. http://cpff.ca/
Thank you Bob for taking the time to respond, I have spoken to the British lung foundation and they say the same. It's difficult to take on the GP services here as I feel out of my depth stupid I Know as I used to nurse so perhaps I don't want to be branded as a problem patient especially as I'm new to the surgery having relocated from Scotland with no symptoms, to suddenly have a cough that drives me mad followed by x-rays and a diagnosis within weeks of registering with them. I wish you well and will chase a consultant appointment this week . You never know I might have one this time next year. God bless Thank you
Lesley,
First of all I am very sorry about the diagnosis. My husband was diagnosed 2 1/2 years ago. He has IPF but he is on the generic version of Perifidone/Esbriet. I want to give you hope because the disease has slowed and he is doing much better than he was 2 years ago at this time. Research on it and get a doctor who will give you information on the medication that is out there for this disease. If I can help in any way please let me know. Your husband is indeed sticking his head in the sand. You on the other hand can not afford to do the same. I can also give you other sites to go to who can offer you suggestions and support. The best of luck to you.
Hi any information would be great I need to go to full of information when I go for my request to see a consultant so web sites etc would be great. I feel I have been fobbed off a bit reading all the replies I have had I can't believe that a person in charge of your well being would do this. Thank you
Lesley, I am on the road right now and will get you all the information and I have as soon as I get to my home.