British Lung Foundation
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Taking A Deep Breath

Taking A Deep Breath

Hello everyone,

Having taken the plunge and finally signed up to the community at the beginning of the month I thought it was high time that I introduce myself.

My name's Andy, I'm 33, and 4 years ago I was diagnosed with a degenerative lung condition called IPPFE (similar to IPF) which doctors believe was linked to my stem cell transplant and treatment for leukaemia many years ago.

Steroids and a cocktail of other drugs are keeping the condition at bay for the moment but the future remains uncertain and the prospect of another drop off (I've lost 40% of my lung capacity so far) is a scary one.

As many of you I'm sure can relate to I've found the psychological aspects of living with a lung condition as hard if not harder than the symptoms themselves and the adjustment to my lifestyle has been a tricky one.

Two years prior to my diagnosis I ran all the way from John O'Groats to Land's End. Now I struggle to run 5k while activities like swimming under water or involve sprinting have become really difficult to the point where I actively avoid them and have become self-conscious around others in a way I wasn't at all before.

In truth I feel a bit lost at times and isolated from my friends. Sport has always been a big part of my life and it hurts that I can't take part the way I used to. Like many of you I'm also very susceptible to colds and chest infections which I have to treat with antibiotics immediately and can knock me for six and make going out and drinking out of the question.

This certainly isn't how I envisaged my life turning out at the age of 33 but I'm slowly waking up to the reality of my situation and joining the BLF community is a good first step. I've also signed up for a local Breathe Easy Group and start my NHS pulmonary rehabilitation in January.

I'd be lying if I said I wasn't scared about the future but I can't sit around feeling sorry for myself. That won't reverse the damage that's already been done and it certainly won't help the lungs that are still functioning.

Really looking forward to e-meeting some of you all and would appreciate any tips or advice any of you might have that have helped you living with your various lung conditions.

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tip toes in. Welcome to the BLF part of Health Unlocked. There will be others along shortly that are experiencing similar situations to your own.

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Moogle thank you so much for reading my post and for taking the time to get back to me which means a lot. Been a bit overwhelmed by the level of response which has been amazing and certainly given me a lift to know that I'm not completely alone!

Do you also have a lung condition? I've got a CT scan and lung function on Friday which I've got mixed feelings about. In many ways it will be good to know exactly where I'm at 4 years after my original diagnosis but at the same time I'm dreading the fact that it might not be such positive news. Bracing myself for every eventuality but determined to keep going in the meantime and do my bit by raising money, supporting others, and, most recently working for the British Lung Foundation.

Hope you're well and had a good Christmas and thanks again for leaving a message.

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Hi Andy. Really feel for you. I’ve got emphysema and bronchiectasis, but I’m 56 years old and have smoked since I was 16 (I’ve stopped now!), so it kinda feels like I’ve bought my problems on myself. Being your age and obviously extremely fit and having to cope with your issues just seems unfair! By the way, according to a senior nurse friend of mine, there are only two anti bios that you really shouldn’t drink with. Don’t remember which ones but would be detailed in the info leaflet. All the best mate. Hope you have an ok Christmas.

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Pete I'm sorry to hear about your emphysema and bronchiectasis. How long is it since you were diagnosed?

I can understand why you feel you may have brought it on yourself with the smoking however I don't think that anyone deserves to get any of the conditions that we do. It has definitely been tough for me and I'd be lying if I said that there aren't times where I feel a bit angry with my lot - I had leukaemia, too, when I was younger and my wife and I are having to go through IVF at the moment on account of my chemo induced low sperm count - however I try not to let it consume me.

Great to hear that there is the possibility of drinking with the antibios though I'm strictly off the liquor at the moment sadly in an effort to give our next round of IVF the best possible chance of working out.

Really hope that you're doing ok and thanks so much for taking the time to read my post and write such a lovely reply - it's great to know that I'm not alone!

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Hello Andy and welcome. Nice to have you here. xx 🌿

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Thanks Caspiana! It's great to have finally found a forum where I can talk to others who are in a similar position and understand some of the frustrations, fears and issues that I have to wrestle with.

Hope you had a great Christmas and wish you all the best for 2018!

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Welcome Andy. I have Bronchiectasis. I hope you find lots of support on here, I know I did. :-) Love your name.

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Thanks so much for taking the time to read my post and taking the time to leave a comment.

I'm a bit overwhelmed by the level of response to my post to be honest but have certainly drawn a lot of comfort from it which is good as I have a CT scan and lung function on Friday which I've been getting increasingly worries about the closer it gets. Fingers crossed the steroids have kept things under control for now however I'm trying to brace myself for the possible news that things have progressed.

Really hope all is going well for you at the moment and that you had a good Christmas? How long have you had your bronchiectasis if you don't mind me asking?

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About 10 years.

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A very warm welcome to you Andy, although I am very sorry to hear of the struggles which led to you being part of our family.

I have had a different condition to you all my life (bronchiectasis) and later asthma. We do have members on here with IPF and I hope they will be along soon.

There are many differences with lung conditons but lots of similarities too. I believe everyone who has a chronic condition is affected at some time or other struggling with the psychological aspects that go along with the 'loss' and management and adjustments we all have to make. We also find with respirtory stuff we often have to be our own advocates.

I hope you find this site informative and supportive and I am sure you will have a lot of advice to offer us.

Wishing you a Happy Christmas and bette health in the coming year.

cx

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Thank you so, so much for reading my post and taking the time to reply! I was shocked by the level of response to be honest but feel very comforted to know that I'm not alone and that others feel similarly to me.

Completely agree about everything you say about people with chronic conditions and the psychological aspects that go with it which make groups like this so important.

Really hope all is going well with you and that you had a good Christmas. Looking forward to helping others going forwards both on here as a patient and in my new role in the corporate team at the BLF.

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Hi Andy, it sounds like you have a good attitude to your health. It's normal for it to get you down sometimes. I'm at the beginning of my bronch and COPD journey so don't have too much advice for you, but there are loads of people on here who are both friendly and full of good advice. Welcome!

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Breatheasy1 thanks so much for taking the time to leave a reply and read my post. I've always been a positive person in terms of my approach to things but the uncertainty aspect definitely gets to me at times as it sounds like it does us all.

Very pleased to have found such a supportive environment and want you to know that I'm here for you, too, as you begin your own journey.

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Welcome to the forum. :)

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Thank you! Hope you had a great Christmas and have everything crossed that 2018 is a good year for you. Lung disease is such a horrible and scary thing but it's great to know that I'm not alone and people are out there to help me when I'm down.

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Hi Andy - welcome to our friendly site. I joined just before Christmas a few years ago and have learned so much from members and received lots of support. Keep in touch and ask anything - someone will always be along to help. Enjoy your Christmas!

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Thanks so much. I can't believe it took me applying for a job with the BLF (which I duly got) to discover that this community even existed!! I've learnt so much already and just knowing that a peer support base of people who understand what I'm going through is there for me is hugely encouraging.

Hope you had a great Christmas and New Year and wish you all the very best going forwards. Keep up the good work!

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Welcome Andy but so sorry you have to be here 😞 You have the most beautiful eyes!

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Thank you Bronagh! So glad to have found this group and touched by the level of support I've already received. I hope all's going well with you and that over time I'll be able to repay the favours for others.

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Hi Andy , and welcome. It is not fair, is it...I understand and can relate to a lot of what you have written. I am 41 now and diagnosed emphysema around 38. I went through periods of anger, frustration and dis-belief.

I found my whole life/social situation changed almost over night as if i plan to go out with friends...will there be a hill where we go, what if I get out of breath: will I embarrass myself, what if one of them is ill. To the point where I don't really go out much and lost a lot of the friends I made and even found it hard to meet members of the opposite sex because that involves dating, which means going out etc. maybe having a breathing attack which means explaining my condition.

You're right, the psychological aspects can be harder than the symptoms for me . Like you I have go to the point of saying, well I can't change this and I am trying to make the most of life now...I am not planning for a mortgage or pension :) . I have no wise words but we are all in a similar situation some further a long than others, but we are here to help and support where we can. Take it easy buddy.

PS. If you are running 5k now you are putting me to shame. I started swimming again last year after 20 years and am planning to move to the proper gym in 2018 :)

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Justdoit2015 thanks so much for taking the time to read my post and writing such a lovely reply. It sounds like you've been through the emotional ringer too since your diagnosis and are suffering from some very similar issues to me not least in the dramatic changes to social life.

As you say it's hard really to make any real plans for the future which is depressing but I'm getting to the point now where I've stopped fighting what's happened and I'm instead just looking to do what I can to make the most out of what I've got whatever that may be.

Do stay in touch and good luck with the gym in 2018 - let's show those lungs who's boss!

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Hi Andy, sorry to hear of your troubles but glad you are here.

There are a lot of good people here who know stuff: like really know it well about all of this and you may even get some clarity about medication, treatment, symptoms etc etc from people who have been there. Because in my experience it’s a bit hit and miss with some of the doctors.

I am the carer of my Mum who has COPD. I am not living with it myself but have learnt a lot about it and knowledge is so important in staying as healthy as possible: you can do all the right things to look after yourself. My Mum was the complete opposite; avoided any knowledge of what was happening to her and it really doesn’t help!

If you’re running 5k fair play, I used to run a lot but stopped and am pretty unfit at the moment. Couldn’t run a bath at the moment.

Take care

Phil

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Hi Phil, thanks so much for taking the time to read my post and leave a reply.

I am sorry to hear about your mum's COPD. It must be tough being the carer and having a very different approach to dealing with the condition to your mum. I'm certainly in your camp but I can see why your mum might take the approach of not wanting to know anything.

I used to work for a blood cancer charity where a lot of people responded in a very similar way and for many of them it was a kind of defence mechanism as by not reading anything or showing an interest you don't have to process what is happening and can shut it out.

The fact that you are clued up is a good thing and I'm sure that's helping your mum stay as healthy as possible even if she's not doing it herself. It must be very tough being the carer and seeing the effect of lung disease on someone you love. Do you get any support?

Don't blame you on not running a lot - it's VERY easy to get out of the habit and find excuses not to go. I've dug in again despite the diminishing returns as I know that it's good for my lungs.

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Hi Andy. I'm writing from across the pond, and with all the "resources" like this here in the U.S., this forum is by far the most incredible I have found. I have COPD/Severe Emphysema Stage 3 and PTSD, so a mess I am. However, and it's a big "however," the people you will "meet" here are the kindest, most knowledgeable, and uplifting you will ever find.

I am so sorry to hear about your health condition at such a young age (I could adopt you and then we could go and have that pint whilst holding each other up!) but, in all seriousness, please do know that you've absolutely come to the right place for encouragement, support, and to be able to ask any question you may have. (I'm 61 and asked a dating question about when to tell, oxygen and embarrassment, etc.! See, I'd be a fun adoptive "mum" as you say there!)

Hoping you have a wonderful holiday. And keep us posted!

Until later then...

K

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I'm from the US as well

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MoxiMe, I'm so glad that I found this forum too - it's been amazing so far and my only regret is that I didn't find it sooner!

Very sorry to hear that you're suffering from COPD and severe Emphysema and PTSD. I can only imagine how tough that must be for you. Lung disease is such a pain in the proverbial isn't it and really does play havoc with your social life.

For me it's still quite invisible as I don't need oxygen or anything yet and a lot of the time my friends forget that I'm even ill. In many ways I guess that's a good thing as they treat me as normal but sometimes you do want them to ask how you are etc. Really not their fault at all as they probably don't know what to say either but it's one I find difficult.

Wishing you all the best going forwards and if you're ever in the UK then let's definitely go for that beer!

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Hello and welcome Andy

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Thanks Dedalus! I certainly feel welcome with all the replies and I'm so glad that I've found this support base even if I am 4 years now down the line. Hope all is well with you and that you had a lovely Christmas and New Year?

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Hi dodgylungrunner and welcome to the club ! Try not to dwell on what you can't do any more but concentrate on what you can. Life isn't fair is it but there are lots of things still to enjoy. Have a lovely Christmas, Sheila x

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Sheila thank you so much for taking the time to read my post and your advice which is absolutely spot on! The key is definitely to focus on what you can do rather than what you can't and I'm doing my best to do that and make the most of things like running while I can still do them in any capacity.

Hope you had a lovely Christmas yourself and wish you all the very best going forwards. Do you also have a lung condition?

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Yes Andy, I've got severe emphysema and on oxygen day and night - thank God for it or I wouldn't be here. I did have a lovely Christmas with family visiting. I hope you and your lady wife have a great 2018 and I'm looking forward to the day you post that the IVF worked and there's a littley on the way. My stepdaughter produced twins that way so be prepared ! Sheila xx

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Hi Andy, nice to meet you. It's such a shame that you have a serious lung condition at your age. I'm sure you will get all the support you need on this site plus the feeling of not being alone which I know has done me good. We all have our good and not so good days one way or another, but by sharing our feers and problems makes everything not so bad and it builds your confidence enormously. Stay positive and be kind to yourself ✋️😊

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Great to meet you, too, Stumpy although obviously it would have been nice if it was under different circumstances. The response to my post is a bit overwhelming to be honest but it's fantastic to know that I'm not alone and that people are there to help support me when I'm having a bit of a wobble/down day. I've got a CT and lung function coming up on Friday which I'm obviously apprehensive about revealing further deterioration but you live in hope!

Really hope all is well with you and that you had a good Christmas/New Year?

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Nice to meet you too dodgy, yes we all have our problems, but meeting people on here has made me realise that I'm not alone. What scares me the most is when I can't breath properly and sometimes I go into panic mode, but since I've been on here I'm coping a lot better. I wish you well and hope the outcome of your C.T scan is not too bad. Let us know how you get on ? My Christmas and New Year was really good and I wish you a happy New Year too dodgy. ✋️😊

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Hi Andy, welcome to the forum. Sorry it isn’t under better circumstances!

IPPFE sounds like a pain in the proverbial. I’ve also got a kind of Pulmonary Fibrosis that isn’t IPF but is essentially the same in terms of treatment and prognosis. I’m not quite as young as you, but I’m only 45 which is still at the younger end of the spectrum for this sort of thing.

As I think others have said, if you’re running 5Ks you are in a fairly good place. I need oxygen to walk more than 50 yards! It sounds grim, but it’s extraordinary what you get used to. You also find out how good your friends are (mostly amazing) and how incredible your family can be.

Next step for me is a transplant consultation in January. It’s a long road and full of uncertainties, but it’s a bit of hope and that all you can ask for.

Is that a future option for you? I know it’s more complicated if you have had cancer, but if you have been in remission for long enough then maybe it’s a possibility for the - hopefully still fairly distant - future?

If you want to ask any questions about treatments, doctors, drugs, transplants etc - or just have a rant - message me anytime, I’ve been round the houses for the last few years (like many people here).

All the best

Stay in touch

Tim

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Tim thank you so, so much for getting in touch. As you well know IPF and its variations isn't a young persons game and you're the first person that I've met in a similar boat to me. I'm so sorry that yours has progressed to the point where lung transplant is being considered. I know that this is something, potentially, that I might have to consider in the future but it's not something that's been discussed with my treatment team yet.

I've certainly thought about it though and I know that it's a huge and risky procedure rather like my stem cell transplant. I've got everything crossed for you that the consultation goes well later this month and that you get your transplant and it is a complete success. They've come a long way in the procedure and hopefully it will give you a significant chunk of quality life where you will be able to walk oxygen free for considerably more than 50 yards.

I would definitely like to stay in touch and will follow you with interest :)

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Hi there Andy and welcome to the group, it seems you have been through a lot in your short life, but you have much more life to enjoy I am sure once this health matter is under control . Enjoy Christmas and when you start rehab ect next year I am sure you will start to feel better. The Breathe easy groups often help you past the first hurdle of shock once you meet others with ongoing lung conditions. Look forward to more chats in the future

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Thanks so much for your lovely message of support Katie. It's certainly been an eventful life so far and I intend to plenty more in what I've got left despite the on-going health barriers that keep getting put in front of me.

The rehab, I know, will be a good thing and I'm going to my first Breath Easy Group meeting later this month as well so I'm taking steps in the right direction after struggling to really know what to do or where to turn when I was first diagnosed.

Really hope all is going well with you and that you had a great Christmas and New Year. It's such a source of comfort to know that I now have a group of people that understand what I'm going through available to share my hopes, fears and frustrations with.

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Good to hear from you Andy, hope all goes well in the new year. One step at a time as the saying goes. There will be ups and downs, more ups than downs I hope. Good luck with the Breath Easy Group and I am sure the rehab will help to. I have been referred back to physio for my arthritis but they say people are waiting around six months for first appointment. Keep well and I would love to know haw you get on at your new groups, speak again soon.

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Hi Andy - Welcome to a great forum.

I don't have the same as you, COPD including Bronchial Asthma and Angina - I did smoke but stopped 17 years ago, best move I ever made..

I live day by day and to be honest I try and shut what I have , out of my mind.. That's all I can say as I know little about your condition.

Have a great Christmas Andy.

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Em thanks so much for reading my post and for taking the time to leave a comment. I try and take things day by day too and think that living in the moment is something we should all do more of anyway as we're constantly thinking about what's happening next meaning we don't appreciate what we have in front of us. Easier said than done at times though when you have things like check-ups coming up but good to keep in mind and try and stick to.

Sorry to hear about your own lung related issues. Can't be easy having bronchial asthma and angina. Here for you in whatever way I can and proud to be doing my bit to help raise funds for the BLF through fundraising and, more recently, joining the charity's corporate parnerships team.

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You are so young Andy and it's unfair. I was diagnosed with COPD aged 50 and had a well paid job as a grower. Doctors told me to stop but we had a child later in life, and she had to be brought up. besides that I loved my job. I did myself no favours as the hours are long, plants can't tell the time.. I eventually had to stop when I began picking purple tomatoes, I tried again with the same result. No regrets i did what I thought was right. Now I walk when I can, but never in the damp or very cold..I think that helps asit helps keep weight down.

Again at 33 and you have had 'leukaemia 'and now your lung conditions, you are one unlucky guy. ..I think your attitude is brilliant and if you ever feeel down, we are all here to talk to you...

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Hi Andy welcome ,what a lot for you to put up with at 33,it's not fair . I have asthma bronchiectasis and emphysema as well as kidney problems but only last year for that diagnosis and 4 years lungs.the breathe easy groups are a revelation to keep you in the know and keeping fit healthy lifestyle and away from infections are paramount to get on with life ,good luck for your future remember you are not alone x

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Thanks so much for your lovely message Boxermad! Lung disease really does suck doesn't it and isn't fair on any of us but I'm so glad that I've found this incredible support base and all the services and support offered by the BLF.

I know that self-management is really important going forwards and I'm really looking forward to attending my first Breathe Easy Group later this month. Really hope everything is going ok for you at the moment and that in-spite of all the challenges that you have to face on a daily basis you, too, had a good Christmas and New Year.

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Happy New year x coughing a lot but but so is everyone else at the moment. Keep positive Andy

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Hello Andy, I was diagnosed with Lupus (Mixed Connective Tissue Disorder) in 2006 which has damaged my lungs and I have been using ambulatory oxygen since 2013 after asking the doctors for it.

I am limited to the things I can do but I go out as much as possible. I go on cruises with my family and I take my oxygen with me.

Please don't let the diagnosis scare you, know your limits and enjoy your life. We are just in a different season of our lives.

Praying for hope and a miracle.

God bless.

Maureen

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Maureen I'm so sorry to hear about the damage caused to your lungs by the Lupus that really is terrible luck. However I'm encouraged by the fact that you haven't let the limitations stop you from doing amazing things like going on cruises. You sound an incredibly strong person and I will do my best to follow your example and not let the disease dictate me and my approach to life.

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Hi Andy. Although i have had more twice the lifespan that you have i believe that i can empathise with what you are feeling. I had been a very strong mountain,hill, and long distance walker for more than 50 years before getting ipf and often what hurts more than most is perhaps driving through somewhere like snowdonia on a nice day, looking up at the summits and knowing that i will never ever be able to walk over those again. This gives me physical stomach pain and feelings that i cannot begin to describe. I try to console myself by saying iv'e been over that one, and that one as i see them appear, but it dosnt really work very well and i often shed a tear, telling my wife that it is the coughing and choking that is causing the tears. Enough of the dismal things. I was diagnosed with upf 6 years ago and the consultant told me that i should prepare to be totally incapacitated within about 3 years, but here we are 6 years on and i am still out and about, going for albeit very gentle walks through the woods over levelish ground for up to 5 miles with the aid of oxygen and frequent stops, sitting in the sun watching the birds and wildlife. Keep taking them up on everything that they offer you in way of re-abilitation courses and exercise sessions etc and try to keep your mind on rhe best scenarios rather than the worst. All the very best wishes.

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Tyrone you have my every sympathy. Knowing you can't do what you used to and that the range of things that you can do will get ever smaller is a scary and depressing thing and I, too, get upset on occasions. I don't think either of us would be human if we didn't!

It sounds like you're giving the IPF a pretty good run for it's money though and have already stuck two fingers up in terms of how you're doing 6 years on. Good for you and here's to you continuing to do that for plenty of time to come yet.

I will definitely be doing everything I can to fight this and won't give up on the prospect of a cure being found until it's too late for me. I recently joined the BLF in the corporate fundraising team and I am determined to do all I can to raise funds for this incredible charity which provides hope, help and a voice to patients through it's services, research and campaigning on our behalf.

Wishing you all the very best going forwards and thank you so much for taking the time to leave a comment in reply to my post.

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Welcome Andy, I agree with everything everyone else has said before, but disappointed that no one else with IPF or your condition has been in to reply to you, as I do know that these are quite serious conditions, that do require specialist treatment . Perhaps if you put IPF or IPPFE in the title of your next post more sufferers of these conditions will come in to chat to you. I find that it is very beneficial to get to know people on here with a similar condition to mine ( Brochiectasis) and click to 'follow' there posts when they make them, as that way you keep up to date with the newest treatment and suggestions.

I was interested in the poster who suggested a lung transplant, I don't know if this is an option for you, but the good thing is that you are definitely young enough to be a top priority patient if you are suitable for one.

Keep running as much as you can Andy, exercise is so very good for you and helps to keep you and especially your lungs healthy

Lots of love Sohara

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Sohara thanks so much for your lovely message and for the tip off about the post titles which I will consider in future. I'd have to put IPF for sure as hardly anyone has even heard of IPPFE and there isn't even any printed information on it.

I'll definitely look to follow people's posts as well as I want to support others and know that I can learn a lot from you all on here too. Lung transplant is, potentially, an option in the future but isn't something that we've had to discuss just yet. I have a CT scan and lung function test on Friday which will give me an indication of where I'm at. Obviously I'm scared about the results of these tests but haven't given up hope and will never give up running until I physically can't do it anymore!

Thanks again for your comment and all the best for 2018!

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Hi Andy

Happy New Year to you. I am sorry that you have been diagnosed with such condition at such an early age. I was diagnosed with IPF 5 years ago. I understand how you feel, for a couple of years I felt angry and upset as I was very healthy and looked after myself, never smoked and only drink on social occasions.

I had to accept the condition and continued exercising and keeping a good diet with the hope I would live longer than the 5 years I was given. Well I am still here, now on oxygen but still exercising, can't walk fast or for long periods of time without oxygen.

My advice to you would be to continue with your fitness program. As regards to your friends, tell them about your condition, if they are true friends they will support you. I didn't tell anybody as I didn't want anybody to feel sorry for me until I accepted it and told people about this rare condition. With my supportive other half we have put our house in order and now we have been going to as many places as we can afford and my condition allows me to. I found that talking to friends about how I feel helps me.

I find people in this forum very friendly and have learned a lot about all sorts of things.

Best wishes to everyone for a better and healthier 2018.

Margot

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Margot thank you so, so much for taking the time to read my post and leave such a lovely comment of support.

Your advice is spot on and I will definitely look to continue my fitness programme for as long as I possibly can. I think for me the uncertainty is the worst thing. If I knew that my condition was definitely going to deteriorate at a certain rate then I would plan accordingly but at the moment we just don't know. I have a CT scan and further lung tests on Friday which will reveal more. I've got everything crossed that my particular strand of ILD remains stable but I'm mindful of the fact that the reality is that I am on the decline.

I'm glad that you've got a supportive other half and are making the most of life and hope that you've got many more adventures left in you yet. I'm also glad that you were able to tell your friends in the end.

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Hi Andy,

I'm keeping my fingers crossed for you. I sincerely hope you have not got IPF, you are too young, but if you have got it or something similar, you should be able to work towards a lung transplant. I am under the care of the Royal Brompton, wonderful people but I'm too old for any repairs! 70 and counting.

Uncertainty is my middle name so I understand how you feel, but you must be positive. Your life and your world has been turned upside down, but little by little you will adjust, it will be hard for your wife too but you must fight it on. Let us know how you get on and good luck.

Best wishes,

Margot

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Hello and welcome Andy.

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Hi Andy,I'm so sorry to think a young man like you suffering like this,I understand how you feel you have come to best place for support people on here so caring friendly I was like you I only have astma acid reflux constant chest infections mines nothing but you are such a lovely man don't feel alone were all here for you I'm never asleep if you need chat but take care your not alone on here xxx

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Hi Andy welcome to the forum. You’ll find lots of help and support from fellow suffers. It’s just nice to that there are some many people suffering unfortunately with lung problems. Hope you’re find this will help you.

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dodgylungrunner

Hi Andy, WOW, Never seen such a huge response to your initial Enquiry. I can see everyone is being so helpful which will give you so much encouragement and Boost your Moral. I joined about 6 months ago, everyday I read & Learn something new on this Great Forum. I'm also Emphysema stage 4, On the Transplant List, been waiting 18 months for The call. Exercise is the Best thing, I have just finished a Rehab session, I hope to start another soon, but I also go to Breathe easy Exercise Classes and The Gym, all on Oxygen, couldn't live without my little Oxy bag, throw it over My shoulder and off I go. It is a Roller Coaster, One day your on a High, next a low hits you..I have also had an episode of total "Melt Down", Got over it. With 2018 here now, I have planned for the year ahead even though the old Lungs are Deteriorating, I will be Positive and I wish for you to have a very positive outlook, Your Young and Physically & Mentally, with your Lovely Wife you will achieve everything you are Planning. I wish every luck in the World...Positive, metal strength...Good Luck Andy. Love Carolina xxxx

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Hi Andy, I’m 40 and have lived with lung problems all my life. I have emphysema and bronchiectasis (the COPD caused by Alpha 1 Antitrypsin deficiency) Currently I’m feeling a bit flat having hit the 40 mark and realising that this is my lot and feeling sorry for myself that I have never known what it’s like to be “normal”. However read your story with interest as you have clearly had to overcome a lot of illnesses and understand you are going through IVF - I too had fertility treatment and have 2 children now, so hoping you and your partner will be blessed. I’ve also felt a bit short changed by the consultants recently at the Brompton but have also been reintroduced to my local hospital after a chest infection admission last summer and they are giving me a full lung MOT again and actually acting on the results, I too start pulmonary rehab next week and had my assessment today. CT Scan scheduled next month too, having not had one since 2014 and lung function deteriorated last year more than was hoped!

Anyway, hope you are currently feeling ok. Good luck and keep in touch about the rehab experience.

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