IPF

IPF

MY NAME IS FREDDY

i have just found out i have idiopathic pulmonary fibrosis, the doctor told me 3 to 4 years , am shocked i've been fit all my life always been doing things, am 71 but a fit 71 am still playing cricket ,that's when i found out something was wrong ,when i was bowling i was breathing more than normal shortness of breath , what to do now i have only 3 to 4 years left or will i last longer.

61 Replies

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  • Morning Freddy welcome to the site ...nobody can or should determine life expectancy with any condition that's between yourself and the man upstairs. It's sad that you have actually been told this as now you will be fretting over it and that's unfair on your well being ...I wish you well Angie xxx

  • many thanks angie its nice to no there are people like yourself to care for them, i felt so alone and shocked when he said 3 to 4 years maybe ,xxx

  • Your welcome Freddy I hope it gives you some form of hope and other messages you have been sent on the site are a comfort also xx

  • many thanks Angie xx

  • Where is the picture taken looks lovley and warm is it recent x

  • in athens at the parthenon a few years back x

  • I thought it was Athens sorry was just being nosey lol xx

  • thats ok yes was warm ,did alaska 3 years ago that was great ,recommended i hired a camper van and did about 3000 miles just fantastic xx

  • Ah good going and a good trip..we did France Spain and Italy on our motorbikes 3 years just gone fantastic trip will be doing it again good luck with your treatment and hope you have good family support xxx

  • many thanks angie hope the treatment helps me my boys are great and caring ,hope you both have a great time xxx

  • I don't know if this is good news?? I was admitted to hospital in February and the Doctor said "quit smoking or you'll be dead within 5 years" and then walked away leaving me shocked, confused, all sorts of questions I had were not answered as he was doing his 'rounds'. Maybe it was 'scare mongering'???Thats when I realised that for over 10 years I had COPD but my annual breathing tests my nurse never explained what I was suffering from. Totally annoyed. I now use a oxygen concentrator for 15 hrs a day and think it has made me feel worse in some ways. I don't go out hardly as the portable tank is too heavy so I don't exercise and have put weight on!! (8.7st to nearly 9st) I am now an even more depressed hermit.

  • Don't let this condition put you down. I think what you shoud do is to Join a gym and work on the different machines at your own pace. Most Gym will understand as they have to deal with all kinds of people with disabilities and can be very helpful. Take it easy and sometimes even you were are off oxygen for a short period of time it should do you no harm. Going to the Gym will help to change your life styl and is also a sociable thing which in turn gives you a sense of well being. You don't have to be walking around in the gym just sit on the seats and use the machines as I said at your own pace. Rest in between too. When you leave the gym put the oxygen back on. But, with your doctors advise first and permission from the gym to use the oxygen while there this I think should not be a problem. I have severe Bronchiectasis and use oxygen mostly at home. I never worry about my condition, I don't smoke and my saturation oxygen levels are 87% without oxygen and drops further when attempting to walk. But,when I have the oxygen on it goes up to 92%. But, sometimes its good to get breathless at times as long as your oxygen saturation levels are not too low. In addition,when one with lung problems exercise for a period of time, this helps to build up the muscles in the lungs and chest more and does help to makes one become less breathless in their day to day living. But, if you are still smoking you are not helping yourself. I know it easier said than done to cut back or give up on smoking. But, its your choice if you want to breathe more easily and have a better quality of life. I hope this will be of some help to you at this time. All the best take care.

  • i stopped smoking 31 years ago, play cricket and i am a bowler but after my first couple of overs am breathin heavy, is that ok or should i stop playin

  • freddy 2399 ,well, I don't know what your saturation Oxygen levels are at rest but, if they are well over 90%and your GP feels it should be no harm to continue doing what you enjoy most,I don't think there should be any problem. But, from what you describe its seems you could be exerting yourself too much which leads to your heavy breathing because of your condition. And from this point of view you may have to slow down. I would ask your GP for advise on this matter. However, in reality you may know your own strength and limits better than anyone else and that's all I can say in relation to your Hobby as a bowler in the field of cricket. I apologise in regards to my comment on smoking when you haven't smoked since 31 years. I hope this helps you in some way and your quality of life will improve in the weeks, months and years ahead. All the best for now.

  • many thanks buddy i will m doing damage then i will have to stop bowling regards freddy

  • Hi Freddy,

    I was devastated when I was first diagnosed with IPF in June 2013. It is a progressive disease with an average end of life prognosis of 3/5 years.

    First and foremost ensure you attend a Hospital which is a Centre of Excellence for Lung Disease. Take advice from your GP about this.

    There are two drugs which are perscibed to slow the the progression of IPF providing you meet the criteria. These are Pirfenidone, I have been taking this since July 2013 and another called Nintedanib, both have proven positive results.

    Once you are seeing a Consultant at a C.O.E. your condition will be reviewed on a regular basis and you should enquire about attending a Pulmonary Therapy course to help maintain and increase your physical and mental fitness levels to fight the progression of this disease. In addition you should ascertain what other drugs you may need to control any problem that maybe contributing towards your IPF like Acid Reflux a condition I suffered from.

    I am now in my fifth year of having IPF and am classed as in slow progression of the condition. My life has not changed a lot, l maintain a positive attitude, go walking most days to keep as fit as possible and attend my nearest Pulmonary Support Group which is of great benefit.

    All the best

    Michael

  • thanks Michael, ive not started my treatment yet in 3 weeks i hope,so it looks like you have been on it for some years so it dose slow the progress down then, my boys were upset when i told them ive got 3 to 4 years, hopefully i will get moore

  • hi many thanks for your reply Michael, you say if i meet the criteria, what is the criteria its all new to me

  • Hi

  • Hi Freddy,

    The criteria is based on your present Lung Function Levels and your Consultant should advise you of this.

    Your FVC levels must be in the range of 50% min and 80% max before either Perfinidone or Nintedanib can be perscribed, a lot of people think this unfair but this is the condition laid down by NICE.

    Also if you go on either drug and your condition does not improve, once your FVC levels drop by 10% you are taken off the medication.

    All the best

    Michael

  • many thanks Michael what dose FVC stand for

  • Hi Freddy,

    FVC stands for Forced Vital Capacity and is the measurement of the amount of air you can exhale after you have inhaled your deepest possible breath.

    You blow into a tube which is attached to a special machine which measures the amount of air you have blown out. The measurement indicates your Lung Capacity and this is used by your Doctor to determine the state of your Lungs.

    Regards

    Michael

  • many thanks Michael , lets hope i meet the requirements for the treatment, regards freddy

  • is there any way of increasing your lung capacity to make sure you get the treatment, regards freddy

  • Hi Freddy,

    I am assuming whenever you have your first review with your Consultant at the Hospital he will ensure you will have a Lung Function Test before you see him.

    Check your appointment letter to see if this is the case ? If not get your GP to sought this out.

    Once you know when your Lung Function Test will be done, then you can ensure you are as fit as possible to carry out the Test !

    Regards

    Michael

  • i go for my 2nd breathing test on the 24 oct ,then i see the consultant on decm 11th ,

  • Welcome Freddy and what wonderful replies you have had. Stay strong and be positive. Xxxx

  • many thanks you are all great caring people glad i found the site xx

  • Hi Freddy, welcome to the forum. I know very little about pulmonary fibrosis but the following notice caught my eye. This will have resulted in a lot of information being posted on the net from there.

    "The Pulmonary Fibrosis Foundation is marking Pulmonary Fibrosis Awareness Month in September with a range of festivities across the United States."

  • think that might be a bit to far form me to go to don , but mant thanks for the info

  • Just move your computer a bit closer then Fred.

  • Welcome to the site Freddy,there are some good people on here if you need to offload things,keep the cricket up.alan

  • yes he told me to be active its just after ive bowled a few overs my breathing gets worse, so i come off then go back later

  • Freddie I know how you feel, but hold on - I was told 4/5 years and that was 12 years ago, and I am still going strong (sort of) I am still alive and kicking anyway! I too was quite healthy, married with two children, and now have four grandchildren. So don't give up hope. Do you use oxygen at home ? I do and have today been for an oxygen review, and they tell me my saturation levels have improved!!! Keep smiling Freddie, nice to speak to someone who understands.

  • that is great that you have gone 12 years lets hope you keep going,i've not been put on oxygen yet i've not started ant treatment yet i was only told i have IPF on monday ,i am waiting for a letter from them to say come for treatment

  • Welcome Freddy and wasn`t that a good repy from sylvnan ? If the support and hope that`s given from members on this site cost £1 a bottle, BLF could donate a fortune to research ! Stay positive and Good luck with your treatment. And by that I don`t mean you`re going to pop your clogs any minute, I mean of the various treatments they try, I hope you find one that suits you best. Sheila xx

  • many thanks for your reply Sheila, all advice is so much wellcome xx

  • Freddy,Wasn't the old adage for age 3 score and ten,that makes 70 with my simple arithmetic.You are a very young looking 71 with what appears to be a very bronzed and healthy complexion,are still doing well in your favourite sport of cricket and although recently diagnosed, with treatment and a healthy lifestyle i am absolutely convinced that you and your lads will be bowling them out in another twenty years time,Keep up your exercise and positive attitude and crack on to a ripe old age...............best wishes,,,,,,skis

  • many thanks for you kind words this help and feed back realy helps me to take it all in, thankyou skis

  • Freddy,i came away thinking about your diagnosis,please tell me has this diagnosis come about after extensive high imaging ct scans and the elimination of similar lung diseases which can mimic IPF,and visa versa.i am assuming that IPF has been explained as ideopathic in that it,s origin is not possible to determine as opposed to other fibrosis issues within the lungs which may have come about for various reasons.I have absolutely no qualifications to challenge your doctors diagnosis but have you yourself at least considered asking possibly for a second opinion given your relatively good health at the moment,Physicians have been known to make mistakes and normally if they are so convinced of your diagnosis they have already put in place a regime for you to follow on your initial consultation.I in no way want to implant false hopes in your mind and i am curious as my wife was diagnosed with IPF but only after many years of misdiagnosis,,,,,,,,,,,,,,,,,,,,,,,,regards skis

  • Hi skyschool,

    Is it too rude to ask what your wifes illness was ?

  • Lizzy.no it is not to rude.initially she was diagnosed with lung cancer which was cleared by a lung lobectomy with no chemo or radiation required.Tragically 6 weeks after that op she had a massive stroke with left her severely disabled and during the next 3 years her once very moderate asthma/copd was re diagnosed as IPF and she passed away in january this year.At no time did she ever receive any treatment for ipf or really any treatment for her stroke disabilitys so i would rather not go into this period in too much depth.thank you for your concern.............skis

  • Thank you for your reply, My condolences on the loss of your wife

  • hi many thanks for your message, i've got a oxygen assessment on the 24 oct, so i will see what happens from there , its only come on this year ,i noticed it playing cricket after i bowled i was breathing heavy, then i went to doctors ,he sent me for a ct scan thinking my arteries my need a stint in, but they was clear,then they noticed scaring on my lungs, and it all stems from there ,

  • oioi dude ipf i had lung tplant after 10 years so ya doc is talkin bs i you train ie walk etc you can keep ipf at bay somewhat its not a cure but it keeps you going longer they gave me 4-5 years i did 10 so it can be done

  • I have it too Freddy, have had it maybe 7 years?

    Eat well and keep fit, but don't overdo it.

    This illness goes in fits and starts meaning it plateaus after a bit of a decline sometimes for a long time then another decline and then another plateau.

    There is no reason this illness should kill you before old age does, if you look after yourself properly, have the flu and pneumonia jabs now, and live life to the full. Good luck!!!!

  • Hi Freddy -Sorry to hear your bad news.

    I was diagnosed with IPF in the form of asbestosis in early 2013 and was only given a couple of years. (personally I would rather know the facts than bury my head ). Nobody thought I would reach my 60th birthday, which I celebrated last month and my aim now is to see xmas !!!

    Like you, I was always fit and active and played rugby until I was 50 and put my lack of fitness down to me competing with 20year olds and being over the hill ?

    You will get good days and bad days but you have to try and not dwell on the issues you have and get on with life the best way you can. Worry and stress will only bring you down and doesn't actually achieve anything. It is also wasting your precious time and energy?

    I have a very positive mental attitude to life and feel thankful for things and not think negatively. A lad I used to coach has a 7 year old son who is getting treatment for nueroblastoma so in my eyes he is the unfortunate one?

    You will get down days, but please try to remain as positive as possible and enjoy your time with your family and friends -Do not dwell on your condition as it will fester in your head, and there is help out there should you feel down.

    Good luck with your journey and try to stay strong -One step at a time ?

    Plumbob

  • many thanks for you message ,i got a letter this morning from the hospital saying he wants to see me in 3 months , i thought i would get treatment before then ,i was a bit done by it ,that from the first time of seeing him till the next appointment will be 6 months without treatment

  • With a fibrotic condition scans ,x.rays etc don't reveal much if they are taken close together - so I think 6 months is the norm to monitor changes in the lungs ?

    Hope this eases your mind a bit ?

    But if you require info from the doc / consultant never be frightened to ask them - they can only treat what you tell them as your symptoms don't assume they automatically know what your feeling ?

    Take care

    Owen

  • i've had scans and they saw scaring on my lungs, and few months later had xray ,i was getting short of breath if i did anything hard going upstairs and lifting things,i saw a doctor nanda, and he told me i have got IPF, now i've got to see him in 3 months , if he knows i've got IPF why have i got to wait 3 months to see him again ,and get no treatment

  • I am assuming he is wanting to see the rate of progression of the fibrosis ? Perfinedone sometimes slows the decline down and I'm assuming you have had a full lung function test ?

    But I can't answer your questions I can only guess so if I was you I would phone him or his Secretary up and ask your questions - alternatively if you have a BLF nurse appointed to you give her a call and he/ she might ease your mind ?

    Never be afraid to ask !!!

    Owen

  • many thanks for your reply , am not going to let it get to me i will just keep going day to day and hope i will see my grand sons grow up, regards freddy

  • I'd be a bit worried about the competence of your current doctors if they actually gave you that life expectancy estimate. Anyone who really knows about the disease knows that nobody can say how long any patient will survive and that an average life expectancy number is meaningless and can cause needless worry. Are you being treated at a centre of excellence or is there any chance you can get referred to a centre of excellence ?.

    As benji08 has said, getting seen by a centre of excellence is probably the most important thing to get sorted out at this stage. The standard of IPF treatment in the UK varies hugely depending on where you live. It can border on the negligent in some areas where there are no IPF/ILD experts or that rely on locums so its key to your survival that you get the best care from the outset. Would also re-inforce importance of reflux in disease process.

    Good news that wherever you are being treated they are starting you on pirfenidone or ofev. No certain about ofev but be aware that if you are taking pirfendione it can cause reflux or make existing reflux worse so you may need to address this or risk pirfendione making your IPF worse in some rare cases.

  • dose the doctor refer you to the center of excellence

  • I think you have to ask your GP in England but not certain of precise process as I live in Scotland and we dont have that option. Hopefully, someone else with IPF can let you know and also offer suggestions as to what is the best centre near you. Benji08 may know as it sounds like he is being seen by one. May also be worth putting out a separate post to find which are best centres near where you live.

    It really is worth the effort as with the best will in the world a general consultant will not be able to give you anywhere near the best treatment. Looking at some of your replies above it looks like you are already in the slow lane that general consultants often follow i.e they just play the waiting game and hope you do not go downhill quickly while they get up to speed on IPF and how best to treat the disease. The drugs that treat the disease only slow it down and its important that you dont lose more lung function before they start you on a course of treatment.

    In meantime, make sure you get a good pulse oximeter and learn how to use it. Also keep a diary of you condition and check your oxygen levels when you get breathless just in case you need O2. Probably unlikley at this stage but worth checking anyway.

    Also read up about disease as much as you can so you can get the best from any doctors appointments and know what to ask.

    Here are some links to some patient guides and an article on the Inspire website site that has a good intro to PF and describe lots of the abbreviations.

    Make sure you check out the Inspire site (its in one of the links below). Its a US based website but has good info and provides an insight into best treatment options that are avaialble as UK seems to be lagging quite a bit behind US in treatment of IPF.

    healthunlocked.com/blf/post...

    healthunlocked.com/blf/post....

  • I think you need to keep talking to your GP.... ask him anything you don't understand... as many times as you need to!

  • Join Pulmonary Fibrosis Uk on Facebook there are hundreds of us on there it's a closed group,I don't know why they keep giving those figures out,many of us are passed the 3 to 5 years,and the new drugs are helping many,you need to be treated by specialist ILD centre.I am still going strong nearly 5 years now I am 67 ,only need O2 ambulatory,and in fact I am going to have surgery for caecum cancer in 2 weeks despite Papworth not recommending surgery,you need to keep as fit as possible and a positive attitude.Sooki

  • hi many thanks for your advice wear is the ild center , what and wear do you get a pulse oximeter

  • An ILD centre is interstial lung disease centre and you should be attending one for your IPF.a pulse oximeter can be bought off the internet,or Maplin also do them but it's more expensive from them.Sooki.

  • what drugs are you on for the treeatment

  • Poppycock IPF tells no one how long your piece of life is, Myself and many others are still going strong. l have had IPF for 10 years although l've been on oxygen since Christmas. Join a support group ,you don't ' say what area you are in . Go to Action for Pulmonary Fibrosis and click the support icon which will show where many are . This morning we launched a group in Chelmsford Essex.

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