confused

I was at Manchester cough clinic this week and it was mentioned that i had NSIP, seems i have had it for sometime. I was told to go home look on the internet and not to worry.

Well i did look and i am worried.

I have fibrosis, i dont know what to expect, I must have had it a good 4 years as that was the last time i was at clinic, i go to work, still doing all the things i have been doing for a long time.?????????????

Sorry if i sound a bit daft, but if i have had this NSIP for so long shouldn't i be having problems of some kind know.

Any comments would be welcome.

Thank you liver1959

24 Replies

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  • I really don't know. Looking on the Internet is something I have stopped doing. Scared myself silly.

    Hope someone here can answer your questions.

    Try not to worry.

    Suzyxxx

  • Hi liver

    Sounds like Manchester Cough Clinic needs a kick up its **** !!

    Look it up on the internet...what a BL**dy cheek.

    I am in Rant mode over your off hand treatment, they need a letter of complaint.

    Velvet xx

  • Thank you for your reply's, Doctor could not tell me much as my file is missing. So going to do all tests again, i must admit they did say 4 years ago that they thought i had lung disease. I just laughed if off never smoked in my life. (so i am partly at fault)

    I also have Cough Hypersensitivity Syndrome so maybe that has hidden some of the symptoms. Questions questions questions. Its driving me nuts.

    Thanks all (just talking about it is a help)

  • When you say cough clinic do you mean respiratory clinic because if so I would put in a letter of complaint. I am told not to look on the Internet at any clinic I go to. And if I do look at NHS choice web site or BLF sorry that you have had such bad treatment. Take care

  • Hi what's NSIP please? x

  • Non-specific interstitial pneumonia, cal. A type of pulmonary fibrosis. Comes under the heading of Interstitial Lung Disease.

  • Ok thanks Hanne. Actually I did think to look it up in our abbreviations list but couldn't be bothered to delete my reply :)

    I hope you are ok love. xx

  • This is one of the most outrageous things I've ever heard. Whoever told you that shouldn't be in the health profession. I don't have it but I know it's one of the Interstitial Lung Diseases. As you'll have found from the internet, it is a serious lung condition which nevertheless can remain stable for many years. From what you say, it seems your condition is very stable, but you need to know all about it to stay that way.

    I'd suggest you phone BLF helpline straightaway 03000 030 555 (Mon-Fri, 9-5) to chat it through with someone. Also, phone or email your consultant's secretary & say you need to see him urgently. If you can't do that, get an urgent appointment with your GP and ask for a double appointment so you have plenty of time.

    Some reputable websites are actionpulmonaryfibrosis.org/ and

    patient.info/health/idiopat...

  • A very helpful letter.

  • Thank you Hanne62 I have a call coming in the morning from BLF, and made an appointment with one of the GPs. ( i have to wait 2 weeks as i am working) I dont want to start having time off i want to keep everything as normal as possible. Thank you for the information about this condition being stable for a long time. I think you are right about mine. You have put my mind to rest for a bit.

    Thanks for the webb addresses. Liver 1959

  • Shocking treatment! I think if you have the energy you should take this further. Did they not explain to you at previous visits to the Clinic? Can you make another appointment - it seems overdue.

    You are not daft - just concerned and puzzled as to what is happening. I'd be wanting to have a look at my records of four years ago. Wondering why they haven't sent for you in between then and now?

    Jennifer

  • H,i A1J1S

    Cannot look at the records they have all been lost, or so i am told.

    Thanks liver1959

  • Frustrating for you. I really understand. I had believed I was 'just' asthmatic for 20 years till after moving home new gp explains I'm copd. I'm still shocked and it just explains everything Ive been through. Vile mucous cough that chokes me and is quite terrifying. Dreading catching colds because I know what Im in for. Exhausting weeks and weeks coughing my heart out. Etc etc etc. Im improving on steroids, spirometry soon as Im able. All the best to you. Read up, but dont let it drag you down. Take one day at a time.

  • Perhaps they said 'don't look on the Internet' ? Could you possibly have misheard them ? Because as you report it, this whole situation is an absolute disgrace. Usually doctors go mad when you tell them you've been looking up stuff on the Internet, never mind actually telling someone to google their condition. I'm not saying I don't believe you but I just can't understand how somebody could be left uninformed for four years that they had a serious disease and then told to look it up on the Internet. It really does beggar belief.

  • Hi Billiejean_2

    You could be right, it also could have been if you look on the internet, i am just so confused at the moment, if that is the case i am very sorry. But nothing was explained.

    Thank you

  • It's not your fault you're confused. Clearly, nothing has been explained to you properly and there's no excusing the fact that you weren't aware of your diagnosis. I hope you get answers and explanations and really, heads should roll.

  • ncbi.nlm.nih.gov/pmc/articl...

    Link above gives it in a medical way but it does state that NSIP has a better prognosis?

    I have PH RLD and my Gp admitted the Fibrosis this year. even though my consultant in 2008 stated I had it then due to the damage to my lungs from infection and treatment. 10 days on an Oscillator with bleeding lungs?

    But I have a philosophy that if you feel okay go with it.

    Be Well

  • Yes i have been told i have the fibrosis, (what ever its all about) and at the moment i am not broken so i dont need fixing.

    Thank you for the link

  • My mouth fell open reading this its outrageous that you were told to go home and google it !!

    I agree with some other members .. A letter of complaint is needed here someone hasnt done their job right and someone else ((the person who said google it)) needs a good telling off !!

  • As i have said i may have it wrong. It could have been if, when, it was all so confusing,

    When i go back i will have a chat with the person and see how it goes, thank you

  • How are you feeling about it all today? Did you manage to speak to the helpline?

  • Hello HANNE62

    feeling a lot better today. Nurse was helpful, i have decided to try yoga when i get back off holiday, (i am going away for 2 weeks on my own) cannot wait, so i also decided to put all this (HSIP etc) on hold till i get back. Thank you for asking how i am.

    Thanks liver 1959

  • Hi all, i have just had the booking office on on Manchester, i have an appointment for a week on Monday, All going a bit quick for me, but i think thats a good thing.

    So just wait and see now.

    Thanks liver1959

  • ps. 10 mins after i got off the phone i get a letter for lung function tests.

    Hay ho thick and fast know.

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