New to this & feeling lonely with IPF!

[Maisiedoes]

Hi folks I have recently been diagnosed with IPF. Second visit to the hospital later and feeling confused, they want me to have a lung biopsy to determine the type before they treat me. Is there any one else out there whom is suffering with this disease that I can talk to please? Thank you.

[Salmo]

Sorry to hear this. This is one of the worst times for anyone with IPF as you usually get so little info, the diagnosis is often uncertain and the prognosis (based on a quick internet search) is scary (and misleading - there are now some new medications that ca slow disease progression and affect life expectancy).

There are lots of folk on here with IPF you can talk to and are excellent at providing help. It might be worth your while providing some more details about your diagnosis e.g. HRCT scan results (UIP ?), lung function test (FVC and DLCO values), symptoms, duration etc as that might help folk give advice regarding the lung biopsy.

There are some useful links in this article.

healthunlocked.com/blf/post...

Top tips - get an oximeter and read as much as you can about the disease so you can make sure you are getting the best treatment, especially if you are not being seen by a centre / consultant with IPF expertise.

[Maisiedoes in reply to Salmo]

Hi Salmo,

Thank you so much, I will deffinitely look into the information and oi meter. I will also look at the letter my doc sent to my go and post the findings. The more informed the better. Feels good to know we are not alone.

Regards Mags

[mrsmummy]

Hello and welcome to the forum. I hope the hospital visit goes well.

[Sooki]

Join us on Facebook Pulmonary Fibrosis UK,we are a closed group with hundreds of us sharing our lives with IPF,We all support each other,it's an amazing site,it is only for Pulmonary fibrosis,this is a good site but predominately COPD ,regarding a biopsy I never needed it,the high resolution ct scan confirmed mine.I hope you are being seen by one of the specialist IPF Centres.Although I live in Birmingham I travel to Papworth,you can go where you prefer.Regards Sooki.PS I do not use Sooki on Facebook ,we all do use our given names.

[Maisiedoes in reply to Sooki]

Thank you Snooki, I will look into the Facebook page. Also a huge help regarding the choice of hospital, I hadn't realised I could chose where I go.

[Maisiedoes in reply to Sooki]

Me again! I shall be looking at Papworth too, we live in Suffolk somits,only a stones throw away. Can't thank you enough.

Have a good weekend! 😁

[Maisiedoes in reply to Sooki]

Hi Sooki,

I have just spoken to my GP who is happy for me to go to Papworth, is there a particular specialist you could recommend?

Kind regards Maggie

[Sooki in reply to Maisiedoes]

I first saw Dr Helen Parfrey,then Dr Nicky Simler they are both super,but in fact all the staff and ILD nurses are brilliant,everybody is so nice,I hope it stays the same when they move next year to the same site as Addenbrookes,.Good luck you will be in the best hands.Sooki.

[Maisiedoes in reply to Sooki]

Ah I did wonder if it was Dr Helen Parfrey as we have been watching her video on the BLF site. After reading your post about Papworth we thought it would be good to get a private consultation as there are so many unanswered questions and my current consultanat does not specialise in IPF. My own GP has suggested I have the biopsy as this will determine the type and then we can go armed with questions, we are hoping this is the best way forward, but she is happy for me to be referred to Papworth on the NHS thereafter.

You are a star thank you.

[Sooki in reply to Maisiedoes]

I know others who have had a biopsy done and regretted it,it's invasive and left one lady I know unable to wear a bra again.Mine was seen on a high resolution scan and X-ray,usually a biopsy is done if there is doubt,see the consultant first and be guided by them not a GP.I am the only patient at my practice who has IPF,so my doctor is learning from me.My mum also had IPF although she wasn't diagnosed until she was 80,she died after a fall with a broken hip.The main thing is to keep as fit as possible,I am struggling at the moment to stop losing weight,it's a funny old disease,but many of us are still here years after the 3 to 5 years as the average survival.I am over 4 years since diagnosis,on ambulatory oxygen.I am due for check up at Papworth on 18 th July,and expect to be stable.Keep positive.Sooki.😀

[Helen6]

Hi Maisiedoes, I was diagnosed with IPF 5 years ago. My consultant and I decided against a biopsy because of the risks involved. It did take a little longer for my consultant to be sure it was IPF but this was finally agreed by him and all his team based on scans of my lungs. I tried the 2 drugs aimed at slowing down the progression of the fibrosis (Pirfenidone and Nintedanib) I couldn't tolerate the first drug and stopped taking the second after a recent decline in my condition. I have now been approved to go on the lung transplant list - scary but my only option now. I have decided to approach this positively and assume that my life will be better in the future. Please feel free to contact me if you think I can help.

Helen

[Maisiedoes in reply to Helen6]

Thank you Helen, this is how we feel regarding the biopsy...too open to risks. But the consultant I am seeing is not an IPF specialist so I think we need to get that sorted asap. I will keep you posted & good luck.

[Hidden]

G'day Mags

Sorry to read of your health issues. My wife was diagnosed in May 2014...now 3 years on ..I nearly lost her 12 months ago but received the "gift of life" a bilateral lung Tx... now almost 1 year post op......... I have kept a journal on our travel....just in case it may help someone else...I call it "Paying it forward". We did not have anyone to help us and I dread the thought that there are others in a similar circumstances.....I cannot nor will not offer you any medical advice..as the disease affects everyone differently and as I am a layman not a Dr.

Any medical questions need to answered by a Pulmonologist...not a GP..so....If you are under a specialist then that is a good start...If not ....FIND one.... NOW!!!

.There are 2 critical things you must stick to

1. Maintain a healthy diet

2. Exercise...not the long walks..or gym work...but specialised exercises that will keep your lungs functioning to their capacity. Ask your Dr about joining a pulmonary rehab group...Do not try exercising on your own.

As mentioned in another reply...buy a finger oxymeter..cost around $20, keep a notebook and write down any questions you need to ask the Dr...Too many times we left the Dr and on the way home "I forgot to ask the Dr"....When or if you feel SOB or unwell check you sats with the oxymeter...write down what you were doing at the time and the results shown on the meter.

I am only a keyboard away..please..if you need to talk...I am here

[Maisiedoes in reply to Hidden]

Morning!

I went & saw my consultant on Tuesday & the biopsy question was raised so they can determine the sub type. We are not really happy about this as we don't have enough information. He doesn't want to see me for 4 months, which I feel is too long as we haven't a clue what is going on!

I had originally bought a x trainer, but listening to all of you I feel it was probably a bit hasty & I should stick to walking and recommended excersise......hey ho! I am able still able to get out & walk, we walked for 2 hours last week, & we shall continue to do as much as possible. I have sent for the booklet from the BLF & I am hoping to speak to the nurse from the hospital. We are altering our diet & I have given up alcohol, I was not a big drinker but I think this all helps.

I have also taken on board the fact that a specialist hospital is the best place, I don't think my consultant is a specialist in this field which may mean we are not getting the best advice?

I am keeping a diary and will get an oximeter to keep a record of results and after this first foray deffinitely a list of questions.

It's just that almost overnight our world has changed beyond all measure, i am hoping that once we get over this first hurdle we can settle back down to getting on with our lives, obviously not in the same way, but as near to our old life as possible!

All the best and thank you. Maggie

[GeorginaS]

Hi I've just been diagnosed but I'm a bit in the dark like you. No one has mentioned a lung biopsy to me. I've just had scan and blood tests. My mind is all over the place! It's very stressful as I'm sure you know x