Interstitial lung disease

[craftyone]

Hello all, I have been suffering from this terrible disease now for over 3 years now and my prognosis is basically my death sentence. I wondered if any fellow sufferers have blackouts. It is only since 30/12/15 that I have started with this new symptom. I start shaking then I come around, usually flat out on the floor. I have just had my 3rd episode and I am finding it difficult to cope with,so far no broken bones but lots of bruises. Please if anyone else has the same symptoms it would be helpful to hear from you 😢.

[Jessy11]

Hi Craftyone, welcome to our forum.

I'm afraid you won't find too many of us around at the moment. More will be here to help later in the morning who will have the same condition as you.

I have COPD so I do not have your symptoms or condition.

If you click on the red balloon at the top of the page you will get information about the BLF & contact numbers you can phone.

Maybe a good idea to give them a call in the morning. They will give you good advice on your condition.

It must be very frightening for you to just black out like that. It could happen anywhere at anytime so you must get immediate help.

Especially since you say your symptoms have just started.

Do you have anyone with you who can help?

Please phone your GP or consultant in the morning & get the help you need.

Keep in touch & let us know how you get on. 🌺

[Hidden in reply to Jessy11]

Great reply from Jessy11. It must be scary so don't delay and good luck.

[Hidden]

Hi carftyone...can you say what you are actually suffering from!!. Is prognosis something to do with cancer! !

You have had 3 blackouts in just one week that have left you with bruising. .

I would have shot of to a hospital or phone for a doctor a straight after the frist one.

I don't know what advice anyone can give other get yourself check out by a doctor.

I wouldn't wait any longer.

Good luck and take care.

Andy.

[craftyone in reply to Hidden]

Hi Andy I have got Interstitial lung disease which is fairly rare, they don't know the cause of it. I did have the Dr out after the first blackout and after taking my blood pressure said it was down to the strain on my body, so left it at that. After posting the query on here I then had yet another blackout. I am going to be confined to my chair as only taking 2 steps leaves me on the floor. I am desperate for help and advice, to find out if this is actually progression of the disease.

[Hidden in reply to craftyone]

Hi....really there's only one place you sould be right now and that is hospital for testing to see what has gone wrong.

I don't know what to say to you other what I said before.

Even phone for a taxi to take you to A and E and sit there in till you are seen by a doctor.

Really sorry for you.

Andy.

[pemily in reply to craftyone]

I think I m right in saying its a form of ;Fibrosis;...my friends hubby has it but he doesnt have blackouts....maybe oxygen might help

blf.org.uk/Page/interstitia...

[AmethystAngel in reply to craftyone]

Hi craftyone, is your ILD due to Sarcoidosis?

[Nanaeal]

Good Morning & welcome to our community. I don't have any advise except to reiterate what has been said please contact your doctor urgently & phone the help line, best wishes, do keep in touch. Nan

[montymillie]

hi I was diagnosed 17 months ago with ILD. I have had the disease a lot longer and its funny you saying about the blackouts, cos I started having them about 5 years ago. I am lucky I only have about 1 a year. I am on 10 litres at rest and 12 on movement , not that i'm very mobile 12 feet of walking and I got to sit down and recover. wishing you the best .

[Hidden]

Hi I agree with the advice given. You need to make an urgent appointment with your doctor and get some help. x

[Sooki]

You need to get in touch with your ILD nurse,you should have one,or get in touch with your consultant,I hope you are actually being seen by a specialist ILD hospital,if not you need to get referred to one urgently,you haven't said if you are on oxygen,it may be that needs adjusting,I am 3 years in with IPF and am keeping steady,are you on pirfenidone,there are several reasons this could be happening,act now,get in touch with your specialist.Sooki.

[craftyone in reply to Sooki]

Hello Sooki I am not under an ILD specialist or have an ILD nurse. I am on 3ltr oxygen 24/7 and am on prednisone and Myccophenalate as well as quite a few other drugs. I have contacted my surgery and a Dr is coming out . I have had this condition for over 3 years now. Thankyou for your input

[Jessy11 in reply to craftyone]

Hi Craftyone, hello again. I'm so glad to hear you have a doctor coming to see you.

I hope he has some answers for you & can give you the help you deserve.

Good luck & come back & let us know how you get on.

Thinking of you 💐

[Timberman]

I assume you have seen this site?

blf.org.uk/Page/interstitia...

[soulsaver]

If in the uk and you don't want to dial 999, the least you should do is dial 111...NOW.

It used to be NHS Direct line, their nurses will offer advice or they may call an ambulance - open 24 hours.

[BugsBunny]

It is not normal to have blackouts with ILD. Have you had your heart checked out? I have ILD which has aslo lead on to Pulmonary Hypertension which affects the right hand side of the heart. Will the GP refer you to a specialist? It may be something simple e.g. the side effects of medication but you need to have it checked out. Wishing you better. Mandy

[craftyone in reply to BugsBunny]

Hi Mandy I just wanted you to know that after your advice about getting my heart checked out after keep having these blackouts, my Dr has arranged for a 24hr heart tracing to be done. Jenny

[BugsBunny in reply to craftyone]

Hi Craftyone,

I am pleased that your GP is checking out your heart. Most heart conditions affect the left hand side of the heart and that is probably what the 24hr heart tracing will look at. You might want to suggest to the GP that the right hand side of the heart be investigated too as you have ILD. Good luck.

Regards

Mandy

[craftyone in reply to BugsBunny]

Hi Mandy I have also just had a call to see the ILD specialist for the north of England on the 4th Feb. Its a pity it has taken almost 4yrs and knocking on heavens door before they decided to send me to see him. I bet the majority of patients with this disease have to beg for help with so little being known about it. Jenny

[docmel]

Hello Craftyone.....I have U.I.P. usual interstitial pneumonia it is under the umbrella of I.L.D. with the the very top of the tree I.P.F. which is idiopathic pulmonary fibrosis. I have not had black outs as if yet, however I was a registered nurse before my diagnosis. From my experience as a nurse (I worked in a rehab/long term care facility) what you are describing cones from a rapid decrease of oxygen in the blood. Very common with I.L.D. The use of oxygen will help however depending on how far progressed your disease is it may not help as much. As this type of lung disease inhibits the lungs ability to get and utilize the oxygen needed. It may be helpful for you as well as using oxygen to attend pulmonary rehab to help you better understand and learn how to and what to do to better cope with your disease and disease process. I know it's hard as I too was given the news in December of 2010 that I have a 3 - 5 year life expectancy. At first I went through a deep dark depression and thought what is the point. I went from being a registered nurse working two jobs 72 hours per week to being disabled and unable to work. I was 44 years old at the time and now I'm 49. So don't give up hope. Be proactive and read to understand your disease, and disease process. Learn as much as you can to find ways to help you cope and adjust your life style. I was incredibly active before I was diagnosed and my symptoms started July of 2008 with extreme shortness of breath which initially I was told it was because I smoked and I had tachycardia with a sustained heart rate of 140 beats per minute at rest and 160 when walking I was tired all the time. I had to push my doctor to help me find out what was causing my issues because the change occurred very rapidly over a two week time period that July of 2008. Understanding your diagnosis will help you know what questions to ask the doctors. I would definitely ask for an evaluation for oxygen use, and to see a pulmonologist. Best of luck....I'll be including you in my prayers.

[craftyone in reply to docmel]

Thankyou for the information I am on long term oxygen and waiting for an appointment with a specialist in this field, but even though I am now starting with these new symptoms I feel like I'm banging my head on a brick wall to make people understand just how ill I'm feeling

[Hidden in reply to docmel]

I think you are very brave and positive Docmel x

[craftyone in reply to Hidden]

Hi i think everyone on this site is very brave, all suffering in silence in our homes. I am so pleased i came across this website i have had some good information and knowing there are others in the same situation, in a strange way is comforting. No one in their 50's expects to be told you may not see your next birthday . But carry on i will

[Hidden in reply to craftyone]

Good on you craftyone. Never give up. It's lovely you have found this site because from now on you will never be alone with your illness. You can come on anytime for support or for a moan or a "why me" and someone will always be here for you. It IS a comfort, you're right.

[westielady1956]

You need to get something like "Lifeline" for when you fall. I have had a few falls my worst being 2 years ago when I broke the top part of my arm and shoulder and I still can't use my arm that well. If I fall I press my button and they will come over a speaker attached to the phone, if you can reply to them then tell them what is wrong if not they will automatically send out a paramedic to make sure that you are ok. from there they will be able to decide whether you need to go to hospital or whether they can treat you in the home. Your doctor should be able to arrange this or your surgery nurse

Good luck

[craftyone in reply to westielady1956]

Thankyou so very much for the information I will get that looked into. My gp has been out and is arranging for a 24hr ECG and also some other tests like stats at rest and when moving as she seems to think my blood pressure is falling drastically