I'm New - Hello

I’m new here. Hello everyone.

WOW! It’s 3am and as far as I’m concerned I’ve overslept. I get 2 hours a night now - I must be doing something right.

It’s now time for me to take on the roll of a cat burglar and quietly get me, and tons of stuff from the bedroom to downstairs without waking the family.

I have to admit, I’ve never excelled too much at anything in my life - but tip-toeing, muffled coughing into my elbow, the art of silent breathing - plus getting a portable oxygen cylinder, an oxygen line, with some much tubing I could let someone in Calais use it - Having a panic attack on route - all of these I have mastered quite well.

I suffer with IPF or now they tell me it could be NSIP. (I wish they'd make their minds up) Regardless, they say it’s the same-ish thing-ish.

I won’t bore you but the past 3/4years have been more than a roller coaster ride. It was just luck that a casual nurse, who thought I had everything from asthma to piles decided to send me for an X-Ray. Scarring was found and my doctor, who called on a Friday with the news that it could possibly be IPF. Thanks Doc - you have a nice weekend too!!!

I didn’t tell anyone close, as I wasn’t quite sure what IPF was. I typed it into Google, with spaces. It came up with International Personal Finance - International Powerlifting Federation and British Lung Foundation. I was hoping for the powerlifting site as lot of people have commented on my squats, bench presses & deadlifting over the years!

But ‘No’ - I opened up the BLF website and to be honest was quite shocked to read what my doctor thought I might have. It was unexpected and not easy to digest. Mind you, if she was right, I had now joined an exclusive club with only 6,000 new members a year and no subs to pay.

It’s a long story, that I’m sure you’ve heard many times, but the next years were spent visiting the experts, CT scans, test after test, referrals, a recent 12 day stay in hospital, as I’d caught pneumonia, and all that as my condition got worse and no help had been offered.

It was only after my long stay with the NHS that someone really took note of my IPF and a few things started to happen.

Two weeks ago I got an unexpected call from the transplant team at Withenshaw Hospital, they'd had a cancellation and I had the chance to step in. Interesting meet as no-one introduced themselves in the room!! - So to be honest, I don’t know who I’ve seen. The receptionist was called Erica and she said that - they (whoever they are) will be in touch.

I joke a lot - as I’m so nervous it’s my only real medicine at the moment. I’m actually having a hell of a time having to turn down work, avoid good friends (for a bit) no sleep, panic attacks, confusion the lot!! But onwards and upwards.

In a nutshell - I’m all fingers crossed they offer me to opportunity to take part in trails for a possible transplant but the waiting, as I’m sure you all know, for everything from IPF, NSIP or what ever you have is the real killer.

Now it’s time for me to bed down on the sofa in the lounge and listen to my two staffies heavy breathing whilst keeping an eye on the cat whose been clawing our curtains so much they look like designer nets.

Good to be here. X

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48 Replies

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  • Hi & welcome,

    Sorry I can't advise - just got the boring old normal COPD! Hope the sofa is comfy and the dogs/cat don't destroy the place while you sleep!

    Good luck with the tests / referrals

  • LOL Bet they will

  • Nigel what do you have whats IPF. Intersetial pulmonary function..just guessing. You're funny so many of you have good humor. I am sad..so nice to see funny posts.

  • Thank uuuuuu

  • Good morning. I'm sure that extra hour's sleep will have made all the difference! Enjoyed your post, but feel for your situation. Do let us know what happens next.

  • Will do Ergendi - cheers

  • Am loving your sense of humor made me chuckle which these days is something that rarely happens these days...... I have no idea what IPF is I have COPD bog standard but I do suffer panic attacks when struggling to breath which have only recently started to happen so I do sympathise with you.

    Keep us update to date regarding the trials sounds interesting and hopeful even .

    Take care :-)

    Lesley (cales)

  • I will thanks for responding

  • Welcome to the group nigelcartwright Sorry I can't offer you any help, I'm not even sure what it is that ails me, but they stuck a COPD label on me. The older you get the less it matters; keeping cheerful matters and you've mastered that art. ;-)

  • LOL thanks

  • My sympathies are with you. I haven't got as far as the oxygen yet, but they do keep finding new things, which gets very worrying. I started off with congenital heart disease, and had surgery for that 1961, aged 17. Went on to have two children, had a mild stroke aged 49, then years later developed atrial fibrillation, bronchiectasis, obliterative bronchiolitis, which causes pulmonary fibrosis, now they think I have pulmonary hypertension and possibly an aortic aneurysm. I try to trundle on, but it is not always easy, and, as in previous posts, I just wish that occasionally people would realise how hard it is to keep cheerful. I'm sure your staffies help, they just love you as you are. At the moment I have our adolescent spaniel bringing me his toys to throw, he doesn't care what I am like, he just wags his tail and laughs as only spaniels can! Forgot to say that even my doctors are surprised I am still alive, I hope I keep surprising them for a while yet!

  • Morning Nigel,

    l also have IPF ,had it for 10 years still kicking along the attitude is right .It happens so we make the best of it .Positive thinking .

    Malcolm

  • Good news

  • Welcome to the site, glad you found us. I am another COPD member so not so up on IPF. Best wishes with your tests ect.

  • Thanks Katie - we are an exclusive club!!

  • Welcome to the family nigel and the carlsburg site (proberbly the best COPD site in the world). I don't know where I would be without these guys. ask any questions no matter how trivial it may seem someone will always answer,love your intro though sooo funny

    Ian

  • Cheers W 22

  • A good post. Hello and welcome to the forum. :)

  • I thank uuuuuu

  • Hello nigelcartwright .

    I really enjoyed your post. Although of course not the bit where you say your doctor thinks you have IPF. So, welcome and its really good to have you on board.

    Best wishes.

    Cas xx 🌸

  • I thank you lots

  • A very warm welcome to you. I love your humour, although I can see it is covering a lot of isssues for you and I am sorry you have IPF.

    There was a doctor in our city, Kate Granger, who became ill with cancer. It was when she was in hospital (as a patient) that she noticed staff would come up to her bed and didn't introduce themselves. She startd a campaign and now everyone at our cities hospitals always start with 'Hello my name is'. Simple but a fabulous legacy and your medics sound as if they could learn something from this - it makes a difference.

    Wishing you well and let us know how you get on.

    Love cx

  • It's so easy to say 'Hello My Name Is'

  • It is but what a diference it makes. Interesting it took a doctor who became a patient to note how she never knew who anyone was and that this was a big gap in communication for the patient. Posters were all over our hospitals and it is very noticeable now if someone doesn't introduce themselves properly and you have to ask who they are.

    love cx

  • Enjoyed the humour in your post and think you have a good attitude with a rotten ptoblem. I too am another ipf, no your not, yes you are person and still waiting to find out what exactly i am.

  • Good luck to ya

  • Steroids keep me awake nearly all night then work the next day is very hard getting very sick and tired

  • H

  • Hi Nigel - welcome. "...as lot of people have commented on my squats, bench presses & deadlifting.."

    Nobody commented on your snatch, then... ? lol

  • I was gonna mention it but didn't want to upset anyone LOL

  • Hello Nigel

    Welcome to the group.

    I also have an Interstitial Lung Disease.....NSIP...Non Specific Interstitial Pneumonia. It is steroid responsive....for which I am so grateful.

    Are you also on steroids? I gathered you may be due to the sleepless nights. When first diagnosed I was on 60mg a day! I am now on 11mg. The side effects of the drugs can be dreadful but a necessary evil.

    I love your sense of humour....so important I fell it is a good coping mechanism

    I am due to see a consultant at Wythenshawe hospital in September....you never know our paths may cross.

    Keep positive, feel free to ask any questions

    Regards

    Sheila

  • May see ya there Shiela. Goooood luck

  • Welcome, this is great forum. There are several here with IPF. Love your writing. Making fun of ourselves is brilliant. Me too. Silly cartoons. But it helps because it puts it in perspective. I don't have IPF, but CTED and probably OB. Hence the Zebra, which in medical jargon is rare diseases. Trainee doctors are told when they hear the sound of hooves "think horse not Zebra." i.e. Rule out the common diseases before going to the back of the text book for rarities.

    All the best

    Kate

  • Hi Kate. thanks for the response

  • Hello Nigel good to meet you and welcome to the site. You do have a lot going on don't you but I love the way you deal with it with a great sense of humour and determination. Despite the seriousness of your situation I must admit to chuckling a lot reading your post.

    Always keep your wonderful sense of humour :) I hope you manage to get on the transplant list and that things get better for you. Take care. xxx

  • Thanks for that Lilaclil

  • Nigel.i think in your case IPF stands for Incredibly Positive Finking(did i tell you i can't spell?)welcome to the Home of rest for dodgy lungs..............skis

  • Thanks for that. appreciate it

  • Hi Nigel, I also have IPF but it did take a few years to be certain of the diagnosis. I've just been approved to go on the transplant list at the Freeman Hospital in Newcastle. Everyone there was lovely and introduced themselves well. The only downside is that I live in Nottingham (3 hours drive from Newcastle) but my consultant has great faith in the Newcastle team so I guess the journey is worth it. My task at the moment is to put on weight which is proving quite difficult but I'm trying. Anyway, I hope things go well for you now that you're in "the system".

    Take Care,

    Helen

  • Good luck and well done Helen

  • Hi Nigel ,welcome to can't breath united,your post give me a good giggle this afternoon so thanks for that.alan

  • My pleasure Alan

  • Hi Nigel, I'm not familiar with IPF I'm severe COPD but adjusting ... good days and bad days. Like the humour in you post, welcome to the site.

    You'll find we're not a bad bunch, very supportive and helpful .

    Peg xxx

  • They seem a goooooood lot here

  • G'day Nigel...sorry to see that you needed to find us,,,but glad you did..My wife had IPF..first diagnosed in May 2014 and received "new lungs" on the 15th July 2016...We reside in Australia...I have documented our journey..if there are any questions about how we coped please feel free to contact me.....I wish you well ...Snoopy

  • Thanks so much. Great news she had the op - I wish you both well.

    I am in a bit of a state - especially with the panic attacks and lack of space in my lungs to breath. I have to think everything through - the simplest move such as putting socks on, eating or sometimes getting out of breath patting the dogs (I's so stupid)

  • Thanks for your reply Nigel. I guess you are well aware that when you bend over you are putting an awful lot of pressure on your diaphragms...this is something you need to address...no bending forward where your tummy touches your legs...and the panic attacks ..these are normal...we have a slogan here 'When you can't breathe nothing else matters" so we worked out how to handle them...for us it was this.... Susan would lie down on the sofa.listening to soft music, shut her eyes and would drift away very quickly..does your o2 have both pulse and constant?? We found this to be the best thing...Susan was on 6lpm on pulse and when a sob attack occured we switched to constant and lowered the rate to 2 or 3 depending on how bad the attack was...It worked every time... Maybe get someone to put your socks on for you????

    Are you on the Tx list?? or has it been offered??...please keep in touch

  • Thanks for the advice re o2. I'm on 5lpm and I've been told to put it on 6 if I feel and attacked coming on or doing any activity. I am doing things ever so slowly and try to plan the simplest of things so as not to get breathless. If I get something wrong, like put trousers on too quick it all goes pear shaped and I get regular breathing which lead so coughing and then panic sets in. I've been referred to the transplant team. I've seen them and now waiting to hear what happens next. Thanks Tons Snoopy

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