Pulmonary fibrosis. Don't know what type, diagnosed in 2015 by CT scan. Oxygen at night only. A CT scan in 2016 showed stable.

[Raven1937]

2 weeks later went to GP with fatigue, SOB No cough at all. GP put me on 3ltrs oxygen 24/7. Oxygen drops on exertion-between 95 and 98 on rest. I don't know what to do. I have no treatment plan. Is this what I can expect for the rest of my life? Oxygen drops to 80 while walking around. My GP said it was chronic respiratory failure. Any thoughts would be greatly appreciated. I am very depressed. Raven1937

[diesel12]

Hi Raven, I'm sorry things are so bad for you at the moment. I'm afraid this is all new to me too but someone will be along soon who will know more. Just wanted to say that you're not alone and the folks on here will help support you. Have you mentioned feeling depressed to your doctor? Maybe you could make a list of the questions you have and your thoughts and feelings and then contact your doctor and make an extended appointment so you can go through it all with them?

Big hugs for you xxx

Shelagh

[Hidden]

Hi I am very sorry  to that you are suffering like this.   I think you need to go back to your doctor asap coz sats of 80 are much too low.   If they regularly drop below 88 and especially  under 84 then you could get organ damage.  You might now need a higher level of oxygen so your sats don't go so low in the future. 

Depression is very common in long term chronic health problems so don't be afraid to seek help for this from your doctor.   Take care  x

[Dons-2]

Hi Raven

Are you also seeing a respiratory specialist at a hospital or just your GP? 

I also have pulmonary fibrosis - diagnosed 23 years ago - but I've led a very happy and normal life so please don't get down, just find out as much as you can (from doctors not Google) and look after yourself. 

Take care  

[Mendy in reply to Dons-2]

Dons-2, reading stories like yours gives me hope and strenth.I m really glad  your fibrosis doesnt progress.

[Raven1937 in reply to Dons-2]

Don, did you ever experience chronic resperitory failure? 🌻 Your post is very inspiring to me. Have been very depressed today and your post lightened my load some. 🌻Raven

[Tatters]

As others have suggested I think you should see your GP or preferably a Respiratory Nurse, GP's are just that, a General Practitioner whereas the Nurses specialise and are very good. I am on 24/77 oxygen and my sats often drop to the 60s but recover quickly when I sit down and relax. I'm sure you will get a lot from this site, read up some of the Topics on the right they are very informative. One other thing, take somebody with you when you go to see Doctors or Nurses, if like me I don't always take everything in and do forget, so another person can be a help when going over the appointment afterwards. Best wishes.

[Raven1937 in reply to Tatters]

Thanks so much Tatters. You give sound advice and I am going to take you up on it. Raven🌻

[Hidden]

G'day Raven

First thing you need to do immediately!!

(Assuming that you have not seen a lung Dr ::: nor advised where the Cat scan was performed)

Obtain a referral from your Gp to see a pulmonologist (Preferably at a hospital which specialises in Lung disease). If unable to do this, find the hospital yourself and take yourself there!!       Take your cat scan results with you.

The Pulmonologist should conduct a a spirometry test,this will indicate at what stage your lungs are at. (you blow thru a tube for this test)

Your sats can drop depending on your age (i.e mine are at 97 (o2 ) and 68 (Pulse) (Aged 74) and I do not have a lung disease,however my wife is suffering from IPF, her lung function is at 28%. Her sats during a coughing attack can drop to  65 (o2) and 120(Pulse)

Please do not muck around with this, too many Gp's just do not know how to handle this disease, our own one had never had a patient with IPF before Susan, smart lady though, she referred us to a lung Dr, who wasted 3 months treating my wife before sending us to a lung Dr who knew about, and was treating patients with lung disease.

The "No cough" is normal at the outset of the disease,Susan's started 6 months after diagnosis, the first symptoms can be S.O.B and, or fatigue.

You may also have anxiety, denial, and fear.

IPF (Idiopathic pulmonary Fibrosis) is a "beast" of a disease. If you are unsure whether you have PF or IPF   Idiopathic means No known cause. The other can occur from a number of sources.

DO NOT USE GOOGLE FOR INFORMATION. This can lead to unnecessary concerns.

You need answers, please, when you go to a lung specialist take notes before and during your visit. Write down any symptoms you feel and make sure ALL your questions are answered. Do not leave the surgery until you get this information. Some Dr's are loathe to pass on info to patients, especially where it relates to IPF.

Buy an oxymeter, they are cheap, and can be purchased thru ebay or a pharmacy.This is placed on your finger and will tell you how your o2 and pulse are functioning.

If coughing starts you can try Fisherman's Friend. Place one under your tongue.

Keep a notebook and use it when things are not normal, record this info for your next visit with the lung Dr.

If you need any further info please advise.

Will (Australia)

[Raven1937 in reply to Hidden]

Thanks Will.

[Hidden in reply to Raven1937]

You are most welcome Raven

Good luck and may GOD keep you in the hollow of HIS hand on this journey

Will

[xoaxon]

Hi Raven, I was always an active person-went SCUBA diving 3 to 4 times a week pretty much year round-did a lot of walking-helped friends move-did yard work-and like that...then in the winter of 2000 I dropped something behind my desk & had to crawl under to retrieve the item and had my first Congestive Heart situation. I COULDN'T GET MY NEXT BREATH!!! I ended up in hospital & nearly died. was then diagnosed with Congestive Heart Disease and additionally with severe COPD. I had been short of breath for some time but always bull nosed my way through it. But after that first severe episode I was forced to slow down almost overnight it seemed. I had to give up diving & really, most of the other stuff. About six months later I had another episode-ended up in hospital & my doctor told me I had technically died & had to be brought back. I will admit that scarred the crap out of me. Till then I had been holding on to a few cigs a day, but I got serious in my approach overnight. No more telling myself lies about what I could get away with. Since then I have been hospitalized 5 more times and nearly died each time. now when I catch cold I get Pneumonia immediately.  have been on oxygen 24/7 since my first hospitalization and now in a wheelchair for the last five years. I have been in a nursing home for the last 3 & half years and I finally have learned how to be happy. Yes, HAPPY. I discovered two things that allow me to be that way--Acceptance & Gratitude. I force myself to ACCEPT things AS THEY ARE not as I wish they were. No more, 'Why Can't I'? NO MORE SELF PITY!!  Additionally, I force myself to make a list of all the things large and small that I have to be grateful for-sort of a Could Be Worse list. I'm telling you the truth as I have experienced it. Life is not fair; it never is BUT as long as we are alive Things Could Be Worse. You won't become Grateful or Accepting instantly-You will have to work at it. But if you are willing to do the work, the benefits WILL come. It works for me. It'll work for you!! God bless you.

Yours: David

[Raven1937 in reply to xoaxon]

Thank you David. I am grateful for your good advice.🙂

[Offcut]

My O2 at rest are 92/95 and can drop below 80 going up stairs etc. but I do doctors say recover quickly?  They will not put me on Oxygen at all.  I am seeing a specialist again in April so hopefully they can sort me out or maybe go down the it may be the heart conditions route and lay blame elsewhere which the heart specialist will also do.  But here's hoping?

Try not to get your self down, I know it is not as easy as it is said but look for something to take your mind away from your conditions.

Be Well

[Raven1937 in reply to Offcut]

I appreciate your response. Thank you so much.🙂

[Sooki]

You must ask to be referred to a specialist ILD centre,there are now several around the country,I don't know where you live.There are NICE Guidelines for the treatment of patients with IPF,I live in Birmingham but chose to be treated at Papworth,sounds like you should be on at least ambulatory oxygen,I'm ok sat down steady at about 94 per cent,the minute I move it can drop to low 80's so I use oxygen .No GP can possibly treat you for IPF,you must insist on a referral.Sooki

[Raven1937 in reply to Sooki]

Thank you Sooki.  I agree, I need a pulmonary Specialist. 🌺

[Raven1937]

Dear Sir, thank you so much for your advice. I will be seeing a pulmonary Dr soon, and I shall follow your advice. Raven ❤️

[Champ294]

L suffer from lpf and are on 24/7 oxygen 3litres when resting and 5/6when walking but have a really good respiratory nurse who l can phone any time and she visits about every three weeks unless l am worried about anything also attend my local hospices one a week and get lots of advice from them l should approach your gp and ask for these things put in place it is a bad enough disease without not having help and advice  hope you get the help you need good luck

[Raven1937 in reply to Champ294]

Thanks so much Champ. I appreciate your advice.🌟 God Bless you.