NSIP

[MrsShimmy]

Hi, haven't posted for ages (sorry!) wondering if there was anyone out there with NSIP??? Or even ILD feeling a bit lonely as it's a rare one!

[Hidden]

Hi whats NSIP and ILD please? x

[MrsShimmy in reply to Hidden]

Non Specific interstitial pneumonitis and Interstitial Lung Disease, sorry I get used to using initials as it's rather a mouthful

[vyner in reply to Hidden]

Hello there, NSIP is Non Specific Interstial Pnuemonia, that means that the webbing part of the lung is partially blocked, which means that you can't disperse the CO2, but can still take in oxegen. ILD is Interstial Lung Disease.

[Hidden]

Thanks. I guess anyone who has them would know anyway. I obviously haven't got these but am sure there are some on here who do. You should get some more replies soon. x

[stone-UK]

Hi

Welcome back.

[sassy59]

Hi Mrs Shimmy, just wanted to say how nice it is to hear from you again. I hope that someone replies to you soon as I cannot help I'm afraid but I do remember you from some time ago. Take care and good luck to you. Wishing you well. xxxxx

[MrsShimmy in reply to sassy59]

Nice to hear from you too, sorry I disappeared, the "trolls" got me down a bit then life got in the way!!

Take care x

[sassy59 in reply to MrsShimmy]

Perfectly understandable but glad to see you back again. xxxx

[Cressie]

Hi, yes I have had NSIP for 3 years and am not so well now but am delighted that my cons has just advised 3 chemo pulses. This worked well for me when I was first diagnosed and kept me stable for about 15 months.

I find the American site Team Inspire ( Pulmonary Fibrosis Foundation) is usually much more to do with IPF (and NSIP).

Do hope you are doing well,in the circumstances. Please feel free to send me a personal e-mail if you'd like to compare notes!

All the best

Margaret x

[MrsShimmy in reply to Cressie]

Hi Margaret,

Are you based in the USA? I think you may be one of the first people I've come across with NSIP lol! My hubby always says it's typical I couldn't have something common

The chemo pulses sound interesting, I shall have to do some research!

I'm battling an infection this week but will be in touch when I'm feeling better.

Mrs S x

[BugsBunny]

Hi Mrs Shimmy

I have ILD and Pulmonary Hypertension. I have been ill for 6 years. The hospital has recently increased my oral immune suppressants, so fingers crossed. How are you getting on? Are you getting out of the house and doing some hobbies? What have the hospital said? Wishing you all the best.

Kind Regards

Mandy

[MrsShimmy in reply to BugsBunny]

Hi Mandy!

Yes I manage to get out and about a fair bit, although stuck at home with an infection this week. Most of the time I can get around with a stick but sometimes have to resort to wheelchair (which I hate!). My docs are juggling my drugs after a huge excasabation last winter and my infections are getting less often. Do you get lots of infections?

I have lots of hobbies, I used to sing and dance which I miss like mad but at least my textile design degree is still useful, I recently taught myself to crochet!!

What about you?

Mrs S x

[Sooki]

Hi,I have ILD,mine is IPF ,diagnosed over 12 months ago,there are a few of us on this site but not many,there is a large number of us ,over one thousand on the pulmonary fibrosis group on Facebook ,it is a closed group and excellent,everybody is always exchanging stories and tips,just ask to join.Also Pulmonary Fibrosis uk has a link.Sooki.

[MrsShimmy in reply to Sooki]

Yes I've found groups for IPF and there are some cross overs with my condition.

take care x

[Hidden]

Hi Mrs Shimmy, You have my sympathy! I also have a very rare condition called tracheobronchomalacia which even my GP has never heard of. It is a lonely place! So far I have not been able to find anyone else with this and have been waiting 6 months to see a specialist ( only four more weeks now). I really hope that you fare better than me and find people with whom you can share experiences and concerns.

Darthveda

[MrsShimmy in reply to Hidden]

Oh what a shame, my condition often has to be explained to random A&E docs, but I'm blessed with a GP who previously worked in respiratory and have good relationships with my 2 specialists, to the point of being able to email them and being on first name terms with their secs lol!

On the upside any hospital time is entertaining as every med student in the vicinity comes to call!!

Waiting 6 months to see a specialist seems rough, is it because of the rarity of the condition? I'm blessed to live near the North West lung Centre at Wythenshawe and living in a largely mining area means our local hospital in Wigan has a good resp team also!

Take care,

Mrs S x

[Hidden in reply to MrsShimmy]

Coincidence! I am waiting to see a Dr Niven at the NW Lung Centre. I have an appointment with the severe asthma centre at 10 am (presumably for more tests), and see Dr Niven at 4pm. I think it will be a long day as we have best part of 2hrs travel from Clitheroe. Hoping for some answers, Darthveda

[MrsShimmy in reply to Hidden]

It's a nice place, I tend to have a day there too, there's shops in the main hosp and a costa coffee in the entrance. If you have a blue badge the parking is free...go in plenty time as parking isn't the easiest, if you are alone there's valet parking, I think you have to book that in advance.

I haven't met Dr Niven, my doc is Dr Leonard. X

[Hidden in reply to MrsShimmy]

Thanks MrsShimmy. It is reassuring to hear from someone who has been. I do have a blue badge as I am also disabled by arthritis but will allow good time for parking. Best wishs, D.

[BugsBunny]

Hi MrsShimmy

I don't get lots of chest infections any more. I did when I was first diagnosed. At one stage I was on long term antibiotics ( a small dose 3 times a week) but that made my tummy upset. It might be worth asking your consultant if there is anything they can do to prevent infections. Well done teaching yourself to crochet. I hope to learn through someone in my knitting group in the autumn. As for getting out I use a rollator, a wheelchair or a mobility scooter. Whatever it takes to get me and my oxygen out and about. Is there a group in your area that does singing for breathing as you might enjoy that. Keep well.

Kind Regards

Mandy

[MrsShimmy in reply to BugsBunny]

Unfortunately the choirs round here are pretty serious ones but I go to church so get a decent workout on Sundays

I'm on long term antiBs for protection but infections still get in, but rarely very bad, my imune system is destroyed unfortunately

I've been wanting to crochet for years and as a textiles teacher it was embarrassing that I couldn't lol!! One of my students taught me just before I finished working

Mrs S x

[Weemag]

I have same as u recently diagnosed. Im on steroids and immunosuppressents and consultant says im responding stats better. Its hard to find info on this condition as the cause is unknown for me ive reached point where i go with consultants recommendations. He doesnt know how well or how long this treatment will keep workin and in future it may mean transplant but im not there yet!! I dont hav any symptoms apart from tiredness n a bit breathless at times ive had two chest inf in my life and was generally well and hopefully thats the way it stays . Keep well xx

[Weemag in reply to Weemag]

Jus also wanted to say i did ask my doc if the nsip or ild is ipf and was told its not that! X

[MrsShimmy in reply to Weemag]

That's good, I was happy when biopsy ruled that put for me x

[MrsShimmy in reply to Weemag]

Sounds like they caught it early, hoping for continued good health for you x

[maggie44 in reply to MrsShimmy]

Hi Mrs Shimmy

Nice to hear from you again. I think when I last read a post from you on the old site you were still teaching a class. Sorry you have now had to give up. I have NSIP and Pulmonary hypertension. The NSIP had been stable for a while after having a course of 6 infusions(chemo), now possibly on the move again. The Pulmonary hypertension I am being treated for by the Brompton is generally under control at the moment using Sildenafil.

However my general condition has deteriorated - needing more oxygen and struggling to move from room to room etc. However I have just got a scooter, so hope to get out more as soon as weather cools down a bit.

I do find it depressing sometimes - even the simplest task seems to take so much effort and sleeping is getting to be a challenge!

Keep in touch - there are so few of us about that it helps to compare notes.

Maggie

[MrsShimmy in reply to maggie44]

Nice to hear from you too Maggie, yes I gave up teaching, was very concerned that I wasn't giving my students 100%, wasn't an easy decision and I miss it dreadfully!

I'm sorry your condition has deteriorated but the scooter sounds fun

Hadn't heard about the chemo treatment before, nice to know there's another step to try! I've just been through my mum having chemo, rough stuff

Love,

Mrs S xx

[maggie44 in reply to MrsShimmy]

Hi Mrs S

The treatment for NSIP isn't as tough as it is for cancer. The drug used is cyclophosphamide; given by six infusions at four weekly intervals. You do not lose your hair!!!!!!! It did make me feel tired and sick for the first couple of days, but I was given quite effective medication to counteract the nausea (I am a real baby if I am sick!), so was grateful. It turned out to be an effective treatment in slowing down the scarring. I may be going to have another three infusions in the future; if so I will not worry about it this time around. I am lucky in as much as I seem to tolerate the wide range of drugs that I have to take quite well. I do wish the steroids did not blow me up though.

I had to retire from teaching (training teachers in university) in 2007 - like you I just didn't feel I was any longer able to give them the experience that I thought they deserved. It was very hard and I still miss it. I did however become a governor at a local infant school which I really enjoy. However I no longer go into the classroom - catching bugs is too easy, particularly as they are infants. Still I can be useful with my education background.

Talk to you again I hope

Maggie

[Offcut]

I have RLD and have worked with asbestos and had a lung failure With empyema, lung bleeds and was on an oscillator for 12 days causing fibrosis and now a paralysed diaphragm. To help things along I have a few heart conditions and arthritis to make me feel complete.

Onwards and upwards.

Be Well

[MrsShimmy in reply to Offcut]

Flipping eck! Asbestos is nasty stuff.

Take care

Mrs S x

[Offcut in reply to MrsShimmy]

they told me the good news is it does not appear to be eating me yet?

[MrsShimmy in reply to Offcut]

That's a lovely image lol!

[NSIP]

Hi,

Just been reading the replies after your post. Notice you are from Wigan and your Doctor is Dr Leonard. I have NSIP too and see the same Doctor.I am not very good with chat room type things but was busy trying to find something to help as usual. I was looking at breathing exercises etc to see if they might help.

[MrsShimmy in reply to NSIP]

Well, small world hey! I've been over to Wythenshawe today, been refered to physio for some help with the breathing

[JyotiSmith]

I have NSIP recently diagnosed due to have 6 infusions of cyclophosphamide and steroids tarting next week.

[vyner]

Hello there, I have NSIP, and am waiting for a course of steroids, hopefully that will help, I have lung function of 33% but sats of 92%, I am feeling so tired all the time, and have been sleeping for up to 12 a night and when I do eventually get up make a cup of tea, I start to feel tired again. I shall be seeing my GP this week and will get back to you if she can let me know anything, I have been going to Guys to see a specialist and she was the one who diagnosed me with NSIP.