Mild lung disease

[Raven1937]

I was diagnosed in Feb/2015 with IPF. The specialist said it was mild. Oxygen was recommended at night. No other treatment was suggested. He said it was incurable and progressive, and I would have to be on oxygen 24/7 eventually. He recommended another CT scan in one year. Suggested I might live 5 years. I have been so depressed since. Any suggestions for me?

[Katinka46]

Hi Raven, your consultant should be shot. You have been treated appallingly. Find another one. What is your GP like? You need help and support. Welcome to this site. It is enormously helpful, loving and supportive. You will find plenty of IPF patients who can advise you. I do not know much about IPF. But there are those who do.

Love and hugs

Katinka

[Raven1937 in reply to Katinka46]

Thank you so much Katinka. God Bless you.

[imelda16]

Hello raven you must feel terrible being treated that way I have IPF and was diagnosed 2011 after ct scan I had an appointment and the Doctor of the day put the oxymeter on my finger and said "look at that 94 not bad " I had been sat for 2hrs in the waiting room. He said the same no treatment and then gave me 2 sheets off paper which were copies from a thoracic journal explaining the desease and last paragraph prognosis 3 yrs.

I rang BLF and they explained that not enough was known and various drugs were being used but don't know how successful yet. It will take a while to come to terms with the oxygen and how it effects your routine but you will adjust.

This site is very helpful and full of useful information if you're worried just leave a post and it won't be long before someone gives you a tip .

Just keep reading here and you will understand more although it's mostly COPD the daily changes are similar so you don't feel alone and make sure you get the support you need from oxygen team.Good Luckx

[Raven1937 in reply to imelda16]

Thank you so much imelda16.

[hufferpuffer]

Oh my! what an unprofessional jerk. How could he stand there dishing out how much time you have to live, I'm astounded by his audacity!

I believe you need to talk to people who have IPF and get advice from them or their carers. There is not a lot of information about it as there is still so much to learn and lots of research going on.

Please don't let that so called specialist write you off in that way , focus on learning and managing your dis-ease the best you can.

I hope and pray you make him eat his words

Sending love and hugs,huff xxx

[Raven1937]

Thank you so much huffed puffer.

[accygirl]

Hi Raven1937

I've copied the link for the NICE recommendations for the diagnosis & treatment of IPF nice.org.uk/guidance/cg163/... which is a good starting point to assess the level of care you are receiving. What I will say is that there are over 100 causes of pulmonary fibrosis and most standard respiratory physicians have virtually no knowledge of the diagnosis, management and treatment of lung fibrosis and Interstitial Lung Diseases (ILD's). It's important to be sure that you do have IPF, and the diagnosis of this condition should be a process of elimination of all the other causes, along with the type of pattern shown on the CT scan.

You also have the right to be referred to a specialised centre and in the end I asked to be referred to an ILD specialist as I was deeply unhappy with the level of care and knowledge shown by my local consultant. I am now being treated by the North West Lung Centre, which is my regional specialist centre, and they are brilliant. I've copied a link from another good website which discusses the specialist centres in more detail actionpulmonaryfibrosis.org... .

We have to be our own advocates and not worry too much about 'upsetting' consultants. It's your life that's affected not theirs and you have every right to expect and seek out the best care you can.

Hope the situation improves for you.

Jackie

[Raven1937 in reply to accygirl]

Jackie,

Thanks so much for your advice. I so appreciate your response.

RAVEN

[Raven1937]

Thanks so much for responding.

Raven

[Jinty65]

I feel for you raven and I completely agree with Jackie. I asked to be referred to Wythenshawe which is a specialist centre after it Was found I had PF on a scan. I'd go back to my GP and ask for a referral to a specialist centre. f they can find a reason there may be treatment that you can have. I also belong to a Facebook group called Pulmonary fibrosis UK. It's a mine of information and well worth joining. Good luck! Jan xx

[Jinty65]

For my sanity, I often go back and reread this blog by a well respected expert in IPF David Lederer pfdoc.org/2013/10/the-inter...

It's helped me and I hope it helps you xx

[Hidden]

Hi Raven

I'm a carer for my best mate who has IPF. He's had it since 2008 and probably before that so he's out lived this 5 year prognosis malarkey and there are others who have too so don't get worried about the numbers.

As your condition is mild now you won't be offered Esbriet (perfenidone) or Ofev (nintedanib) but there's no harm in asking for it now. My friend did and managed to get it even though he was slightly outside the criteria.

Ask also about pulmonary rehab. I can't emphasise enough how much this has helped my friend. Doing some exercise is very important. Also get yourself a pulse oximeter. You can buy them on Amazon. You will be able to monitor you oxygen saturation so you don't fall below 90% when you're moving around/walking/exercising. People with IPF shouldn't fall below 90% as it can damage your other organs. If you notice readings fall below 90% ask for a referral for oxygen therapy.

Like Jackie and Jan who have posted, my friend got a referal to the North West Lung Centre at Wythenshawe. You really do need an IPF specialist. A general lung specialist just won't do.

Good luck Raven xxx

[Sooki]

All of the above comments are good advice,you would need a sleep test to see if you need oxygen at night,you should also have LFTs and 6 minute walk tests every 3 or 4 months,I believe pirfenidone is now prescribed even for mild disease,I don't know where you live but you can ask to be referred to and ILD specialist centre,I currently attend Papworth in Cambridge but live in Birmingham,you should definately join the Pulmonary Fibrosis UK on Facebook as there hundreds of us with IPF on the site,this is a good site but more suffer with COPD .regards Sooki.

[docmel]

Don't take to heart it will be 5 yrs. A doctor isn't God, they have no idea how long we have. Live! Do all you can without taxing yourself. When they prescribe medication research it! Give it a month if it's not helping discontinue use. You know your body better than anyone else if you are not felling well, or are having difficulty seek help don't wait to long. Best of luck. I was diagnosed via open lung biopsy in 2010, my symptoms stared in 2008, and I'm still here.

[Raven1937 in reply to docmel]

Thanks so much. This is very encouraging. Raven

[Annieo]

I can't believe what I have read . It is a scandal. Yes the prognosis is 2-5 or 2-8 depending on what internet site you are on and it is incurable BUTIT CAN BE CONTROLLED . So the earlier it is diagnosed the better. You are not bad if you only need 2 litres of oxygen and with control you can live a normal life I have had ILD for 12 years and that doesn't count the 2 years I spent trying to get a diagnosis . My Lung function is very bad and I am on oxygen 24/7from 4 Litres sleeping to 6-8 mobile . Twice in that time my Lung function went down and twice I have been rescued Once with prednisolone intravenously and then with Rituximab 2 years ago . I take 10mg prednisolone , 2x 500 autoimmune suppressants prophylactic antibiotics etc daily You need and must demand a referral to The Brompton Regards Anne

[Raven1937 in reply to Annieo]

Thank you Annie. Your information surely helped. God bless you and prayers.mRaven

[punkyb]

All I can say is my initial reaction is WHAT or (WTF) ..geez who is this guy anyway? I went to rehab with a lady who has been dealing with this issue for over 10 years. I would definitely dump that guy. report him if you desire.

When I first was diagnosed with COPD / Emphysema with a component of asthma. The doctor said pretty much this wont kill you you are not disabled and she did not even check my oxygen level. I didn't know a thing about this disease but I felt she is just being a doctor for the money. She didn't care about me. I fired her and got a good doctor. He tested everything he could find heart blood and more. A fine man as well as a fine doctor. He even got me into rehab. So I say find a worthy doctor!

Bless you and let us know how it goes.