ILD

[Helsbells1]

Hey, folks.I am a 51 year old female recently diagnosed with ILD. I am looking for any info, advice even just contact with folks who have the illness or a family member who has it. Thanks.

[Blur]

I am ild patient and have been for about 6 years but find apart from initial consultant appointment with follow up ct scans plus lung function tests and being discharged as no change. I am again referred back with same problems with very little follow up and no respiratory care although I read that people with asthma/cod do generally have a matron/nurse with regular check ups etc. I have never received correct diagnosus going from initialling being told I had ipf then I didn't it was pf. Then upon deterioration was told it is now nsip with both empysemia and bronchietassis but lo and behold then told could be vasculitis/wergenerers disease. This is now doubtful. Still no proper diagnosis and treatment I am receiving I asked for myself which is carbocistine for mucous and antibiotics 3 days per week. As I now have sclerosis in eye I am on steroids since July and trying to reduce them, but possibly will always need to stay on the lowest dose possible. I found that ild is not really understood by hospital staff and I never understood why I had to be an ild patient as all my symptoms came under cops umbrella. I really hope you are one of the lucky ones who will receive proper care.

[Gigi71 in reply to Blur]

What a farce, I am currently being tested for this, ILD that is. I like to read the posts on here, but not much comes up about it. It's an umbrella term I understand. I have scarring on my lungs most likely from my rheumatoid disease, not due to get the results till the end of Febuary, I do have a chronic cough but this is due to my HH. Have many health issues so will see what transpires. X

[Helsbells1 in reply to Gigi71]

Hi Gigi 71,

There doesn't seem to be a whole lot of information about ILD

available and what there is doesn't make for hopeful reading! I am waiting to hear about being accepted onto a drug protocol to try to slow the lung fibrosis. I was originally told by my GP that my breathlessness was just the curse of middle age for about 6 months before I saw a different doctor who listened to !e and actually listened to my lungs. I don't know where to find up to date info. All a bit vague and wait and see how quickly things change.

[Gigi71 in reply to Helsbells1]

Hi Helsbels. Thanks for your reply. I mainly look on the NHS site for info, as so many others seem not so relevant. After all its where we will get our treatment, if any. It all seems so long and drawn out and frustrating. X-rays showed changes as far back as 3 years ago, not considered any real problem, again two years ago 3 X-rays and a CT scan didn't show much change. Those ordered by my rheumatologist. In May went to my GP as cough and breathing not too good, another X-ray and referred to a Respiratory clinic. I saw in in October and he ordered a High Resolution CT scan and lung function tests. I've had these and my appointment Jan the 7th changed to 25th February, although changed before the tests as the consultant is away. I feel in limbo. A letter sent to my GP in October, mainly about the cough caused by my HH, first time I've not been copied in, as all my other consultants do. I rang his secretary over a week ago for a copy, still not received. I do hope you get on the Drug program as its seems they aren't very proactive from what I can see and read. We are always being told to get early treatment but seems not much available. I wish you lots of luck and take care. X

[Helsbells1 in reply to Blur]

Hi Blur,

It does seem a bit of a lottery with respiratory care. I am waiting to hear if I am being added to a drug protocol. It's difficult to know what will help you or even who! All very unclear at the moment. We just have to do the best we can.x