Newly diagnosed with IPF: Hi All. Have... - Lung Conditions C...

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Newly diagnosed with IPF

neil66•

10 years ago•21 Replies

Hi All. Have recently been diagnosed with IPF. Very unsettling. Don't know who to tell and what to say.

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neil66

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10 years ago

Hello and welcome - I would first advise you ring the BLF helpline (click on the red balloon) they will be able to help you with advise and have some very good leaflets. I care for my husband who has severe Copd so cannot be very helpful with your condition but I am sure others will help. You have come to the right place lots of helpful people supporting each other. TAD xx

Keep_Calm10 years ago

Hi, I also am very unsettled. About two weeks ago I went to the ER with a bad cough and shortness of breath. (59, female, never smoked) I had a chest x- ray that was clear but they gave me a CT scan. They kept me in the hospital for a week with atypical pneumonia. I'm still not exactly sure what the CT scan revealed but it was something bad. In the ER when I saw the doctor after the CT scan I asked him if it revealed cancer. He said "No there is no indication of cancer" in a very guarded and solemn tone of voice. I heard something about scarring, but I have no definite diagnoses. I go to see my family doc next week and he said he will refer me to a specialist in the city.

I'm only coughing a little bit now and not short of breath the way I was, but I am very very scared.

creakykneed10 years ago

Hi Neil66

I don't know much about IPF but I do understand the quandry about what to say to who. The way I see it there are 3 groups of people you need to consider.

1) Employers. They need to know that you have a chronic lung disease so that they can fulfil their duty of care. Depending on how symptomatic you are you may need it on file for sickness records etc. If you have an occupational nurse at work get an appointment with them to record facts about your condition and capabilities. I did not tell work for over a year because I thought I would be judged as less competent but I needed their support for hospital visits etc, and now I am signed off that open communication with occ health is 'protecting' my future.

2) Friends and family. You will need them for the bad days and to help you enjoy the good days. Explain what you can, and pick the ones you can be truly honest with about your fears, worries, how bad you really feel. You can't put on a brave face for everyone.

3) The odd acquaintances, colleagues, and the rest of world. None of their business! You don't have the plague, you have nothing to explain. So what if you cough horribly and walk slow, they don't need to know why. (Caveat to that is if you feel really bad in a shop and need water, sit down, etc - a brief explanation to the shop assistance between gasps of breath can prevent an unnecessary ambulance call )

But above all, before you talk to anyone square it in your own head first. You have probably been waiting a while for diagnosis, there is no need to rush into anything. The helpline will help you get the info you need for this.

I wish you the very best and hope you put this forum into category 2 - thats what its here for. Xxx

SMasefield10 years ago

You can also get in touch with the Pulmonary Fibrosis Trust. They are a patient organisation for people with IPF and other lung fibrosis conditions. actionpulmonaryfibrosis.org/

Jolyn10 years ago

To Creakykneed...that was a wonderful and sensible reply.

Jolyn10 years ago

Neil66...just stay calm and think things through, chat to your nearest and dearest. This is such a lovely forum....lots of good people here and so very supportive. Hugs

Keep_Calm10 years ago

I haven't told anyone at work about my recent hospital stay, and my probable diagnosis of PF (I CANT BELIEVE I JUST TYPED THAT). I am a lecturer and fortunately it happened just after the term ended, when many people go away for awhile. I have been back for a few days and see no need to tell anyone. I'm afraid if they learn i am sickly they would put me on disability and not let me teach my fall classes. I also have't told my grown children because i don't want to upset them. My husband knows more or less but he hasn't been googling the way I have. I think he is in denial.

I have a lot of worries about falling ill again in the middle of a semester, or in the middle of activities planned with the family for the summer. I worry that every time I catch a cold I will end up with pneumonia. That is how all this started about 10 weeks ago...with a cold.

jenss in reply to Keep_Calm10 years ago

Hi there keep-calm, please remember i) there are many different reasons for lung scarring, ii)and you don't have a diagnosis yet right? Try not to worry too much right now, stop the googling and live healthy and enjoy life. KEEP CALM! I agree with you no need to tell right now. Let us know how you get on? My best wishes to youxxxx

Keep_Calm in reply to jenss10 years ago

Thanks so much for this cheerful and sensible reply, jenss!

bellamac10 years ago

I have also recently been diagnosed with IPF. The only people I told were, first of all, family, then close friends and my minister. I think there is no need to tell anyone else unless you are working, in which case you should tell your employer. It is a very scary time and I have not yet seen the pulmonologist and I was told it could be months before I do, so I manage as best I can. Try not to dwell on your condition, just get on with your life and do as much as you can and try to stay positive.

D_avid195410 years ago

I was diagnosed with suspected IPF last July and this was then confirmed in October, I have completed all the lung functions tests and have been approved for Pifenidone - just waiting to see the specialist to sign this off. Just turned 60. Don't believe what you see on the internet re life expectancy as there are many people out there who have lived with this condition for many years - I have since been told I have had for 4 years and still compete in race walking - ironically getting some of my best times ever. I know of others who have had for 8 years plus and live a full life. Stay fit, eat well and if not affecting you don't change your lifestyle too much. Join the Pulmoary Fibrosis Trust Facebook site - you get some good info there

Keep_Calm in reply to D_avid195410 years ago

Thank you for this encouraging advice, David1954.

neil6610 years ago

Thanks for all your encouragements. I have also found this film, useful for family and friends.

everybreathcountsfilm.com/

10 years ago

I was diagnosed in 2001 with IPF, I am now 73 and although I have just had a bad spell and require oxygen I have outlived the timespan that you will find on the net! Keep your chin up

blake03 in reply to 10 years ago

thats brilliant . feel a lot better knowing that ,i was diagnosed july 2012 and after first few weeks had myself dead and buried, during my month in hospital i actually planned my funeral after reading the literature on IPF , just got a letter from my specialist which i requested for holiday insurance stating i had [mixed cellular and fibrotic non specificinterstitial pneumonitis ] felt so alone and scared ., it helps to correspond with others in same boat but i dont know anyone here

Keep_Calm in reply to 10 years ago

You are a beacon of hope, Scribe!

in reply to 10 years ago

I was sent a message asking for more details, I thought others might be interested in my reply :-

In Jan 2001 I had a heart attack, I decided to retire on my 60th which was the following June. Towards the end of May 2001 I started to become breathless when doing moderate exercise, by the end of May I could not climb a single flight of stairs without having to rest 10 minutes at the top. My GP sent me to hospital immediately. There I was put onto 24 hr oxygen but condition worsened and they did not have a clue as to why, X-ray showed lung capacity was less than half! They tried to arrange a biopsy but surgeon said I probably would not live through it. Consultant was desperate and so did a lot of searching on the net, came across "fibrosing alveolitis£ as it was called then. Not much known about it at the time except that steroids, prednisolone, sometimes worked. They put me on a very high dose of 40 mg per day and after about a week there seemed to be a slight improvement and my O2 Sats started to rise, yipee! I was discharged when my 'resting' Sats were 92% but my lung functions continued to improve but reached their max of 65% of normal and plateaued after about 18 months. The steroid dose was then reduced until I came off it, no other medication has ever been prescribed. This lasted until around December 2013 when I started to note my condition seemed to be getting worse. Prior to this I was able to lead a normal life, shopping, driving, gardening etc., I just had to rest more frequently.

I have NOT been seen by my Consultant since January, but am have another lung function test in July and will see him then. I am now unable to do anything strenuous, I can still get about using portable oxygen and I can get my resting sats to around 87/88% if I try hard.

jenss in reply to 10 years ago

Thanks for sharing. I wish you all the bestxx

in reply to 10 years ago

As a result of being asked another question by message I am going to try and clarify the 65% of normal in the lung function tests. Having been tested for 13 years for lung functions all I can say is that the tests have changed massively. When I took my first tests they were measured as a percentage of 'normal' . By what methods I have no idea. My first measurement was 25% of normal so it was a massive improvement to 65%. Since that time (around 2004) I have seen the equipment used for the tests change at least 3 times at the hospital so I cannot compare it with the current methods, all I know is the last time I had my FEV1 (2013), I was outside the range set by NICE for Perfinadone so I will have to wait for my next test next month.

RFPM10 years ago

Hi Neil, Ruth here, IPF project manager at the British Lung Foundation. We have information on IPF available on our website at blf.org.uk/ipf which you can dip in and out of. You will also see that you can order leaflets and booklets about IPF for free from here are well. As TAD mentions, if you would like to talk to someone our helpline is the cost of a local call and can be reached Mon-Fri 9am-5pm on 03000 030 555

simeon10 years ago

Hi neil66. I have Idiopathic Pulmonary Fibrosis which I guess is your diagnosis. Please step back from it and take the proverbial deep breath-I imagine you may begin to find yourself a bit short on the real thing. This is a relatively rare disease and it is not common to know any one else who has it. Many doctors have never seen it and many of them don't know how to deal with it as a consequence because they worry it may distress their patients if they admit to not knowing what to do. I was diagnosed in 2009 and I am still here, as the grey man said, but only just. If you don't tell anyone they probably won't notice beyond your getting 'puffed' . If you are fortunate enough either to have family or close friends it might be a good idea to put them in the picture right away as there will come a time when you will need them to understand your needs. I suggest you use the internet to search for and read what medical professionals have to say and then you can pick and choose what you want to tell them. I would recommend logging on to 'The Mayo Clinic'.

I have tried a lot of drugs given to me by my Consultant and pretty much stopped taking nearly all of them. There is no cure for IPF which is why doctors struggle and perhaps feel they are not doing they job if they don't give their patients a prescription for something. There is a drug which can slow the symptoms but only in the early stages of the disease. There are other drugs to help with secondary problems as with most illnesses.

Most important really is your attitude to life! For the first two years after diagnosis I was engaged in some research that required me to walk at least 2 miles every day. I went on with it and nothing in my life showed there was anything wrong with me-no spots, no pimples, just me doing what I always had done. So there was no need to say anything to anyone and it was like that for about 3 years. The only person who knew was my wife. None of my kids (rather big kids now with their own little kids) knew. There was no point in worrying them when there was nothing they could do anyway.

So right now I suggest you allow the IPF to slip quietly into the background and get on with your life as you were doing. The diagnosis won't have changed things from how they were a week before. There will come a time when people will notice you are a bit short of breath and can't quite do all the things you used to do. By then you will have learned a lot more about IPF and, with a little bit of help and support, you will be more settled. The BLF and us bloggers (is that the right word?) will always give you as much support as we can.

I have quite deliberately said nothing about my own condition but I will if you want. I've had IPF for 6 years now so I have some first hand experience of what it is, what it does and how to best deal with it

And I am still here. Regards

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