12 Years with IPF - How much longer? - Lung Conditions C...

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12 Years with IPF - How much longer?

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11 years ago•13 Replies

It has been 12 years now, I do not use oxygen, Sats at rest 93%, moderate walking etc around 82%, heavy lift and walking low 70's........what can I expect? I am not on any treatment.

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13 Replies

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11 years ago

Hi there Scribe,

I don't think anyone knows! Everyone seems to read and quote the average or the worst scenario so I reckon just carrying on best you can as long as you are coping well. Sounds as if you are doing brilliantly up to now. If it sets your mind at rest maybe have a word with your GP to see if you should be getting regular/annual check up or have a word with BLF Helpline nurses. Otherwise, eat well, exercise when you can and look forward to better weather.

• in reply to11 years ago

I do have regular checks with a Consultant at Leighton hospital. It was annual up to this year when it has switched to 6th months.

mattcass11 years ago

Hi Scribe. Your post will give a lot of heart to others who have this horrid disease others like myself read into the worse scenario and it was not good reading although evryone is diferrent you always looked at the black picture till you see or hear others like yourself, I have both IPF and RA Rheumatoid Arthritis.and suffer more from the latter but i would be delighted to know if the RA stays away from my lungs i might have as long as youreslf and many years after that, In fact I meet my Chest Consultant this Monday where i'm hoping the transplant will be put on the back burner again,Good Luck. Mattcass

Chris311 years ago

Thank you for sharing this with us. It's lifted my spirits.

AnneGodolphin11 years ago

Hi scribe, you ask how much longer ?

It is only a personal opinion, but you could well be o.k. for another 12 years

However I would suggest that your consultant has you walking a tightrope blindfold or being negligent in his duties toward the lack of treatment supplied to you.

There is no question S.A.T.S. at 80s & low 70s at any time when active requires ambulatory oxygen to protect the vital organs, any activity with such low sats is putting you at great risk daily. I would hope that you would get proper treatment in this respect from a consultant who recognises the effects of such low oxygen levels on the body during mobility

best of luck for the future 12 years scribe

xxx

• in reply toAnneGodolphin11 years ago

It is only 2 weeks since I had an Oxygen Assessment with the local NHS Team...their verdict - my recovery time did not warrant any intervention!

happyfeet59• in reply to11 years ago

Recovery time is an important measurement. Everyone's sats drop on exertion, it is the time it takes for them to recover that is important. If your normal sats are over 92 when sitting and they recover to that in the required time then I'd say your oxygen is fine.

My consultant said I needed to have at least 16hrs a day when my levels were above 92 to protect my vital organs. Research has shown that this is the minimum necessary. My sats are only 88 at rest and drop further when I move, returning to 88 so I need oxygen for at least 16hrs. This includes sleeping time.

It also depends on how much walking and heavy lifting you do whether ambulatory oxygen be needed. I am assuming your oxygen assessor asked about your lifestyle and maybe did a walking test?

AnneGodolphin• in reply tohappyfeet5911 years ago

did this assessment involve a six minute walk test ? as my assessor saw fit to abort continuation once my level dropped below 85 explaining that cell necrosis (death of cell tissues) is triggered at below 92. ambulatory oxygen is vital.

I vizualise the situation as jumping out of plane with or without parachute you can only bounce back onto your feet so often no matter how quick the recovery from the process cell necrosis is averted one cannot recover from that, that has been destroyed during deprivation or oxygen deficiency during activity

Mavary11 years ago

Hi Scribe. That's fantastic. The average according to our Specialist is four point five years. My Husband has had it for a definite four years. Could be six as they didn't recognise it. There is no actual treatment as of yet. There is Perfenidone which can help to slow it down.. You sats on sitting is pretty good. My Husband is on oxygen nearly all the time. He has only been on it a few months. The way you are going you will make a very old man. X

11 years ago

The Oxygen Assessment was the 6 minute walk test and it was my recovery from that that prompted the no oxygen requirement.....it was a brisk walk! I am due another assessment in June. I have been retired from work since diagnosed (June 2001) and basically do light housework etc, had to give up cutting the lawn in September as I could no longer manage it, Used to do it with a couple of rests, but found I was resting more than cutting.....lifestyle suits, still driving, cinema, meals out......see my Consultant on Tuesday so may have more info.....but......definite deterioration in past 12 months.

11 years ago

Just a small gripe - about 18 months ago I was sent on a Pulmonary Rehab Course. At the start there were 10 of us, 9 COPD and me. Within the first 2 weeks we were down to six. Twice a week, one a two hour session with one hour exercises followed by one hour lecture, and a one hour exercise session. I found the exercise good, I was up to max weights etc within a fortnight, but, the lectures were frankly a waste of my time, everything was aimed at COPD with medication types, inhaler types, body position to relieve obstruction etc. On the course feedback I stressed that I found the course not suitable for IPF and there should be 2 different courses for COPD and IPF....but....I suppose as COPD outnumber us by a considerable amount it will never happen!

imelda16• in reply to11 years ago

Hi scribe, you found the Pulmonary Rehab the same as I did 1 IPF to 9 COPD when I asked why this was they said well we don't know enough to talk about on your condition so we just slipped you into the course. I must admit my consultant had already told me it wouldn't help but it was the physio that arranged my Ambulatory oxygen that put me in. But now I have finished the course the PARS excercise that is run suits me fine because they run classes for any Respitary problems . I can attend any excercise class I want and am enjoying the company. This forum and Patient s like me has answered most of queries . I have just had a follow up 6 min walk and other tests which have shown it has worsened so I am being considered for the drug Pirfenidone so I continue to live with hope.

11 years ago

Had my six monthly visit to Consultant today and raised the question about Sats going down to 72 and should I be on portable oxygen. She said that contrary to what you may read on the Web, going down to 72% in itself is not life threatening, it is the recovery time back to 92% that is the critical factor. She said the results from the Oxy Assessment Team, blood gases from earlobe and recovery time from 6 minute walking test indicated that extra oxy was not required. When asked how long I could walk at my own pace on level ground, I told her a couple of miles with no problem.......

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