Hello

[Disneytime]

Hello, I'm new here . I have been diagnosed with non specific interstatial lung disease .The doctors have taken lots of blood tests but can't find what is causing the inflammation therefore can't stop it .The scarring is getting worse I'm really anxious about the future . I have just finished a 6 month course of cyclophosphamide and prednisolone but unfortunately it didn't make any difference . I have just started mycophenolate to give that a try . I have been told that a lung transplant could be needed as the condition progresses. I must keep myself fit now . Does anyone have advice as it has to short bursts of exercise as my heart rate shoots up when my oxygen level drops .

[Damon1864 Volunteer]

Hi Disneytime, welcome to the site, try YouTube just type in excercises for lung disease and it will give you lots of excercises. Also short walks evening it's just around your house or garden. But please remember to take think slowly don't try to do to much take it easy and remember to rest. Drink lots so you don't dehydrate. Hope this helps you. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Disneytime in reply to Damon1864]

Hi, Thank you for your reply . I will check out You Tube xx

[sassy59]

Welcome to the forum Disneytime. Hope you’re getting all the support you need and are prescribed the right meds that will help. Take care and stay safe. Xxxx

[Disneytime in reply to sassy59]

Hello, Thank you for the reply , stay safe too xx

[CDPO16]

Just saying hi and welcome and sorry that you find yourself with such a diagnosis. The BLF have information on exercises that you may find useful. I wondered if gentle exercise might help more than short burst with regard to your oxygen levels and heart rate.

[Disneytime in reply to CDPO16]

Hi , thanks for the welcome . I will take a look,at the exercises .

[Patk1]

Hello+welcome.i hope u have a gd consultant x

[Disneytime in reply to Patk1]

Hi , I do have two good consultants. Thank you x

[Alberta56]

Welcome and best wishes. I hope you don't have to wait too long for a definitive answer.

[Walkwalkwalk]

Good morning and welcome to the site. I have a similar diagnosis but although we are all different it’s good to feel heard by people who understand. Trying to help ourselves when short bursts of exercise deplete our energy can be very can be very demotivating. Giving up however can have the same outcome.

You may want to look at a the programme organised by the Pulmonary Wellness Foundation.

It is called Boot Camp but there is nothing traditional hard boot camp about it. It’s a hand holding process over 42 days. I t took me 60 days to do my first one abut that doesn’t matter. The fact that I have done more than one is just the nature of the way ILD( interstitial lung disease disease) has presented for me in the last few years and I have found that having a system like this has been so helpful in coming out of the dips.

Feel free to contact me if you want.

My very best wishes

Grace

[ProudYorky]

Aw welcome Disneytime I too have ILD I have up to now been able to reject having any medication how long my consultant will allow this I don't know ,I'm not happy to go down the steroids route as I have problems keeping my weight down as it is and I'm not sure if any advantage with them

.My lungs are heavily scared I think it's because of 50 yrs in the building trade but at my last scan 2 month ago I was informed of no change which to me is good news and no signs of cancer I have been diagnosed with Non Specific Interstitial Lung Pneumonitis/Hypersensitivity don't understand a word of it .. Hopefully your a long way away from transplants and things level out it's all doom and gloom at first but as time goes on we except it and carry on .

Its difficult to get information on this disease as you probably know they can't always tell us what's causing or caused it people are shocked when I tell them this in my family I'm sure they think I'm making it up and don't want to tell them the full story. Some of the story's are so conflicting ,but my consultant is very honest and if I ask him a question he doesn't know the answer to he very honest so no bull

There doesn't seem to be a lot on this site who have this disease so I grab what I can off them when they comment .My advice with excursion is take it slowly remembering this complaint stops us circulating oxygen around our body's and such as bending over can send us quite dizzy we are all different I go faint if I walk too fast and then I'm gasping for breath .there are some decent rehab videos but just try to do things in moderation we are never going to become marathon runners Drink plenty of fluids but try not to gulp down .

It is such a horrible disease but don't look up about it on Google as you will scare yourself stupid and some of it just isn't right .The thing is try to be positive come on this site and keep in touch with everyone .There are some lovely funny and experienced members on this site and everyone is so kind and helpful.When I was diagnosed 3 yrs ago I just fell into a deep hole didn't know where to turn I felt like my world had turned upside down I felt so sorry for myself but self pitty isn't good for anyone so I gave myself a good kick up the bum and sorted myself out. I'd never heard of this before did not know anyone who had had it .It was my local nurse who recommended this site and it's been a god send it's certainly helped me. Sorry it's such a long post keep in touch hope all goes well take care stay safe xx

[Disneytime in reply to ProudYorky]

Hello, thanks for the reply . Your situation sounds very similar to mine . I went without treatment for 6 years , just a scan each year to see how things were going . Then my consultant retired and he told me that my new consultant would probably want me to start treatment. He was right . I was referred to a Prof who said I needed to start treatment straight away . I don't know if it was the right thing or not as before I started the chemo I was just living my life and nobody even knew there was anything wrong . It could just be a coincidence that the condition has got to the point where it is really starting to make a difference to my life now but I wonder if I should have just carried on as I was without any treatment . I am scared about the future especially when they start talking about lung transplant! It is nice to hear from someone in a similar situation . Like you I am trying to stay positive as I'm lucky I have an amazing husband and children to think about . Stay in touch and take care x

[martinpatricia811]

I have pulmonary sarcoidosis and it sound ver similar to wat I have I am on oxygen too ask the docs to test for this Disease it is quite rare

[HollyBoyd]

Hi Disneytime. Welcome to the forum, good to see you have had replies form others with the same diagnosis. The best advice is keep fit as possible and take a healthy diet. As advised the BLF site has lots of information . Take care xxx

[Disneytime in reply to HollyBoyd]

Hi , thanks for the welcome xx

[Disneytime]

Hi , thanks for your reply . I have been tested for sarcoidosis .