Ild diagnosis

[Buckle]

I had a telephone consultation with the hospital today confirming my ILD diagnosis .As Yet I,m not on Steroids just Pregabalin,Sertraline and Codiene Linctus .I have also got Sobutamol coming is this usual practice.

I will be checked again in 6 months but I have had it confirmed the life expectancy prognosis is approximately 5 years is that once you are put on steroids it is so upsetting not to see a human face and just receiving a letter and a phone call . Can anybody give me their experience for comparison x

[peege]

I'm sorry Buckle, it must be so difficult to get a diagnosis without human contact. Hopefully members with ILD will see your post and support you better than I.

The prognosis you read about aren't always right, in fact with exercise, healthy weight, healthy diet you can prove them wrong. Thinking of you xxx P

[Buckle in reply to peege]

Thank you for your kind words it means a lot that I,m not alone

[Dedalus]

Must be so difficult for you, getting the diagnosis this way. I don't have experience of ILD but, like peege, I believe exercise, diet, positivity and healthy lifestyle can help greatly. All best wishes.

[Buckle in reply to Dedalus]

Thank you so much for taking the time to reply it's good to know there are good people out there who even though they have problems of their own x

[The-perfect-storm]

Hi, I've been diagnosed as having ILD in January this year. I was supposed to have had follow up appointments but these have been cancelled due to Covid I have had one telephone consultation after requesting it.

I have been told I am not suitable for any of the drugs used to control the condition so it is a case of managing it for the foreseeable future. My consultant also told me that there are no inhalers or treatments that would help. However my gp has put me on Fostair (I have been asthmatic all my life) as well as my ventolin and the old Codeine linctus and I have stopped the Becotide I used to take. I will say it has seemed to make a difference the codeine more than anything suppresses the cough, I find I need to concentrate on my breathing. it is better when I can relax but any exercise leaves me breathless very quickly, it makes me feel lazy but luckily my wife is very supportive.

Additionally my wife has bought me a small portable nebuliser (can run off of USB adapter too) my consultant doesn't think it will help much but if my cough becomes troublesome I use that and it does seem to loosen stuff making me cough easier.

Anyway shielding, I appreciate this is something I need to do but walking however slowly seems to be the only exercise I can cope with. I choose my time so I go out when the streets are empty,

Regards prognosis, my consultant apart from saying the condition was progressive and in my case untreatable (seems it had been missed for 3 years when I was getting repeated chest infections) I was told everyone is different. I have not been encouraged to read around the subject, one thing I have picked up is that the condition can be very individual so what works for one may not work for someone else.

There is a treatment/technique called something like respiratory rehabilitation. I have asked to be put forward for this but because of Covid everything seems to have stalled. I have read very positive feedback for this if you can get on it. I think its 2 or so sessions a week over about an 8 week period.

I agree with the other contributors that a positive mind set is an asset, get to know your GP and use them to help manage your condition. If something seems to work then stick with it, if something doesn't work persevere for a while but then go back and discuss with a view to getting a different suggestion. I find this group a real help when I need it, and if I go away for a while then fine, you come back and just pick up where you left off. I'm sure it will be the same for you

Good luck in your journey with this, but do try and control it rather than it control you

Kindest Regards Simon

[Buckle in reply to The-perfect-storm]

Bless you thank you for your reply ,I agree with you about staying positive I have too much living to do as do you xxx

[aunttomany]

i was in a somewhat similar position to you i was told i had pf when i asked what it was i was told not his area he would ask papworth to take over.i had no idea what it was and i live nowhere near papworth. I found out about the condition on the internet on my own so i know how you feel. please do not read anything on the internet it is to grim. the hospital do not give me a time frame just management of the condition everyone is different. I wish you the best on your journey. Any questions or a chat even a rant if you feel like it people are great on this site.

[Meg52]

Hi Buckle

I am sorry to hear about your diagnosis and the way you received it. You must be feeling very stressed, but please don't read about it on the internet, my consultant warned me not to do that as I would frighten myself. You will find people on this forum are very understanding and helpful. Many have a lot of experience of your condition and know how you feel.

I realise this is a new diagnosis but have they given you a reason for your ILD? Have you had lung function tests and if so what were your dlco results?

I have ILD, pulmonary fibrosis, bronchiectatis and Lupus. My ILD is caused by the lupus. I take Mycophenolate an immune suppressant, Fostair, Ventolin, Gabapentin to help suppress my cough. I'm currently waiting for oxygen tests, but like many others, due to the covid shielding everything is on hold.

I really wouldn't take any notice of the five year prognosis, I feel upset for you if a consultant has said that to you, everybody is different, no two people are the same. My consultant told me that they can't repair the damage already done, but hopefully can slow it down.

When you have your six month check they will probably do another scan and will have more idea how stable it is. They might then decide that you would benefit from some form of treatment. Others have mentioned respiratory rehabilitation, I have not had this but have seen others on here say very positive things about it.

When you have got over the shock of your diagnosis hopefully you will see that you can continue to have a good life. Even if you can't manage to do the same things as you have always done, there are always new things to learn or enjoy. Try and eat a good diet, stay as active as you can and get plenty of rest.

Don't forget to ask questions or discuss your worries on here.

Good luck, Meg 💕

[Oshgosh]

Hi,I also have a diagnosis of ILD ,along with lupus,RSjogrens.

I was told on my first appointment at Wythenshawe hospital,that I wouldn’t get better,but they hoped to be able to manage my symptoms.

I appreciated their honesty.

I’m having a bit of a rough patch,but looking forward to the gyms opening,then I can get some exercise.

When I was first diagnosed a friend suggested that I get Cognitive Behaviour therapy.

Basically it helps sort stuff out in your head.

The GP thought it was a good idea.she gave me a leaflet and I self referred online.

I was accepted and did it online.

The therapist is online,it’s just like any online chat really.

I don’t know what’s available in your area,but it’s worth looking.

I felt it helped me sort my head out,the transcripts are available online,so I can look at them if I want.

It does nothing for your physical health,but it did improve my state of mind a bit.

It’s a difficult condition to have as there is little information available.

I’d.never heard of ILD before I was diagnosed.its. Have been on a steep learning curve.

I have tried to answer your post before,but my posts kept disappearing ,hence the delay.

Am going for a short walk before the rain returns.

Look after yourself.

[Buckle in reply to Oshgosh]

Bless you stay strong xxxx 💋

[Buckle]

Thank you so much you wonderful people for letting me have a rant and lick my wounds and give me the courage to get back in there and try to live my life to its fullest ,Love and Hugs to you all for giving me hope when you all have your own problems. Buckle xxxx

[Oshgosh]

Rant away. When you’re having a good day do something you enjoy.

When you’re having a bad day,be very kind to yourself.

This forum is really useful ,some one will support you.

Stay safe

[Oshgosh]

Sorry for multiple posts.

Do you have access to a ILD telephone help line.

If you haven’t been given a number,try ringing the consultants secretary to see if she knows about it.

Be prepared to have to leave an answerphone message !

[Buckle in reply to Oshgosh]

Thank you so much for the advice you,re so kind

[Oshgosh in reply to Buckle]

It’s not a problem ,if there’s anything else,just ask.

I know how I felt at diagnosis,my head was everywhere.

Whilst this was all going off,thasthma nurse,whi I sawatGP surgery said to me “ sometimes it’s like build your own health service”

I appreciated the truth of what she said.

I bought a small page a day diary. Write everything down,especially relevant phone numbers..

This forum has been helpful to me,

I have managed to get some sort of support network going,Pharmacy hospital have been great,but still have to chase stuff sometimes.

.

Look after yourself

[Buckle]

Wise words you have to fight for everything advice help just a chat with someone who understands my husband loves me but doesn't like to talk about ild. Its like being cast a drift in a boat and trying to plot a course.I,m finding this group and the help and support it provides .

[GingerCatJayne]

Hi Buckle,

Who told you ILD has a 5 year life expectancy? I thought as long as you keep taking your meds, you could lead a relatively ok life?

[Buckle]

The consultant confirmed the prognosis is five years but they are alway