Hi, I was diagnosed with pulmonary fibrosis (ILD) in January this year, I have had one consultant meeting and one telephone appointment (at my request). I have had an MRI scan to investigate a couple of nodules on my lungs that showed up on an Xray, I am under review so i guess things will start up once the current Covid crisis is well under control. I am 59 and a lifelong asthmatic so breathlessness etc isn't as stressful as it might be to a 'newbie'
I have noticed a deterioration in my symptoms over the last 3-4 months breathlessness is increasing, my stamina is dropping and I am very tired all the time. I bought an oximeter some weeks ago and this showed an SPO2 of below 85% sometimes as low as 80% virtually always after exertion so get up shower dress go downstairs, going for a walk, little DIY jobs round the house etc so pottering around. Whilst resting I am normally 95/96-occasionally 98% but I can't sit in my chair forever.
I went to see my GP who walked me round the carpark,l after about half a circuit I had dropped from about 96% to 87%. They referred to hospital for ambulatory tests to ascertain how my sat's are going with the view to possibly going on to oxygen therapy for activities.
I bought another oximeter to 'cross refer my readings in case I was worrying needlessly; on resting they correspond perfectly but when I'm struggling my newer on is showing sats of around 74% I must admit I am feeling truly knackered, my older machine does not seem to drop below 80% although I did have a 78% last week on it.
I have received a copy of a letter asking the respiratory team to test me at their earliest convenience that was dated 7th May. I'm just wondering on whether anyone has any views or experience in this matter, how long do I go on feeling that every day is a struggle. I am concerned about visiting the hospital at this time especially as my hospital is a Covid specialist unit. I've tried a mask but it makes my breathing more difficult I don't know where to turn.
The thought of relaxing shielding is beginning to terrify me. Luckily I have a very supportive wife and family but in truth there is only so much you can discuss with them
Starting to feel woolly headed so I'll close for now but thanks to everyone wo takes the time to read my post
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Your sats on exertion and are very similar to mine,along with the associated tiredness,Even doing nothing sat on air alone they rarely go above 91%,i don't have PF or ild but i do have very severe empysema and it took quite some time for me to pursuade my respiratory team to both test me for ambulatory o2 and prescribe it,even to the extent that i self prescribd for 3 months and bought my own concentrator.i don't personaly advise you to follow my actions as you may potentially be a co2 retainer.
Your team seem to be more on the ball and hopefully you will get to see them soon,i believe many hospitals are far more efficient now in dividing their fascilities to avoid cross contanimation and i would urge you to attend as soon as they invite you as it seems very likely that you are now a candidate for supplementary oxygen and the sooner you get it the better in my opinion as it will make life so much easier for you and at the same time protect your other organs from damage.Of course this is all supplementary to the ongoing investigations into your PF and whatever treatment plan your consultant will use to address your condition in the future.
Thank you I have heard the term CO2 retainer and hadn't considered that. I have thought about getting an oxygen concentrator but thank you, I will hang back
Try not to concern yourself too much with the sats,even venturing from the sitting room into the kitchen and back again can leave me with sats in the low 70's without oxygen,but i am neither totally breathless or panicked by it and with my condition,perhaps you may be likewise, within minutes and not exerting myself they return to a safe resting level of at least 88 % but obviously putting ones body through that on a regular basis for long periods of time would inevitably do damage.
Out of interest it may be worth doing a little light exercise,testing your sats and then waiting a short while to see if they bounce back to your near normal on resting,it might also be valuable info to give to the folks concerned with your future care?
Thank you, I have been doing this and you're right sitting down and resting for 4 to 5 minutes brings me back to normality. Its just that it feels like its dropping off a cliff even for very little exertion so everything is just plain hard work, I'm sleeping a lot (night and day) I just go, then wake up feeling confused trying to work out what the time is and even what day it is
I just did that little experiment,resting watching tv,on air,sats 88%,quick 5 min trip to the kitchen,cat fed,beer poured,returned to chair,sats 74% on air,5 mins rest sats now 88% .i am glad to hear that your sats do rebound back quickly and i do hope you get sorted soon.btw i think it's still Saturday and i never nap during the day so maybe my supplementary o2 has given me the edge.
I too have PF and my SATs are very similar to yours. I am on ambulatory oxygen but as I’m not doing a lot these days (shielding) I’m not having to use it much - I tend to use it most when I get dressed/undressed.
I don’t think that being a co2 retainer is a thing for PF patients, it tends to be those with COPD that have this problem.
I don’t think you can do much more than you have done, you’ll just have to wait until you appointment comes through and take it easy till then. Respiratory departments must be so overwhelmed at the moment it may be a longer wait than usual. You will have to go in for this appointment as they may want to do a walk test and blood gas test with you. In the mean time try not to worry and be gentle with yourself. Take care. 🌸💕
I have advanced intestinal pulmonary fibrosis, and am oxygen 24/7 but I have had the blood gas tests and the walk around the park bit, but as I had my tests back in November last year, and a follow up in January I am now on two concentrators in tandem so that I can get 10 litres per min while at rest and 15 whilst moving about. Retaining Co2 is the bummer.
My advice is wait to have all the tests done, don't panic Mr mannering.
My oxymeter shows 46% after slight exertion, but comes back to 93% I was told that anything below 82% was not good, if you recover quickly, it's all good.
I do not worry about my condition, this forum has helped me through some of my darker days.
Like you I have great support from my family and friends.
Just read your post and see that you are on 10 litres per minute and upto 15 when moving.
I have just been put on 2 machines so I am on 8 litres per minute we sitting and anything upto 15 when moving.
Can I ask what you use to go out and how you manage. I have no concentrator on my portable oxygen so it only lasts 45 mins so going anywhere, even for appointments is quite frightening.
Any advice would be welcome.
I have Emphysema and pulmonary hypertension/fibrosis. I am sick en0ugh but not fit enough for a transplant as I was referred as very active until this was diagnosed in January 2020. Played golf 3 times a week and went to the gym twice a week, while also doing a physical job.
Hi Hun, I am a C02 Retainer, I have Severe COPD, Lung Capacity at 17% (only right lung) Left doesn't work. Been waiting since before Lock Down for an Oxygen Nurse, been told will have to wait as the Oxygen Nurses are not always Available. Now over 3 months Isolation & Shielding, had a message & phone call to say They have not forgotten me !!! At Present The Humidity is very High at 82% right now and has been this last week, Hence the Air being so thin which adds to our problem per Gasping.. I have used my Oxygen 24/7 more than the 16/7 which is my Prescription. Oxygen Levels start low at 82 after doing Breathing exercises it comes up to 92. I had a Blood Nurse in her PPE last week for Bloods, waiting for the results. When the sun comes out I can go in my Garden (Lucky I have one )then I use my Mobile Oxygen. Just need my Blood Gases to sort out the 02 exchange re Carbon Dioxide. on my 104 th Day, Hubby & I went out in the Car, The feeling was Superb and it really lifted my Spirits, before this 1 & half hour Outing I had had a Melt Down , Which is Not Me. But OMG , I felt my Breathing improved Immensely for the rest of the Day. I am Planning a little time out the end of this week. Good Luck to you Hun, Do what you feel safe with, keeping the safe distance, wear a Mask if you must. Staying in the Car was Great for me. Stay Well as you can. XXX C.
Hi, How time flies, I thought I had updated my post to reflect what happened but it doesn't look as though I have, so here goes; IPF Update
A month ago I finally got my Oxygen assessment, the long and short of it was that I needed ambulatory Oxygen to keep me active for as long as possible. I had bought 2 Oximeters to double check my sats, my newer (more expensive machine was coming back with sats in the low to mid 70's (on exertion), sitting on my but I was low to mid 90's and I did seem to recover fairly quickly.
BOC delivered my cylinders and an oxygen concentrator within a day, top marks there. I was advised to set the delivery rate at 2-4 litres and my target saturation level was 90%. I had to keep a diary for a review after 1 month.
In the meantime I bought a 3rd Oximeter to double check my sat levels. The new one also had bluetooth and an app to record my levels whilst being active so very useful.
I do feel very self conscious using oxygen when out and am an habitual mouth breather so had mixed results with the provided nasal cannulas. My walks have been confined to early mornings and evenings plus in the night when I'm agitated and can't sleep. My records are showing my sat levels were around the low to mid 80's. So today was my one month review:
The upshot is that I am moving on to liquid oxygen (refills last longer) and my delivery rate is being upped to 4-6 litres. I am taking auromorph at a low level to suppress the cough. I am getting a mask to use for when I struggle with the nasal cannula so more night time walks coming up (Might even take up night fishing again). I feel things are moving forward in a positive way, so looking forward to being a bit more active in the weeks to come
Thank you for the update,it is always nice when people take the time to update when we have given advice and support,some times we are wrong but more times than often we know the problem as we have a wealth of experience in the dodgy lung club.
Hope your new regime works well for you and you get at least some of your life back.
It’s confusing to read that 88% sats is the deciding number for o2. They say go to the ER when your sats get below 88. Good grief I’d be living there. So far the lowest has been 76%. 5 minute recovery to 92-94. I read a biography where this guy was constantly at 46% and he lived 9 more yrs. it’s really weird trying to figure it all out. And the Drs seem so ho hum as I think they figure...well you’re not going to get any better so let’s not do heroics...I don’t know
I read a lower figure somewhere, but the thing to bear in mind is that figure relates to the average person with no lung condition and otherwise healthy, it is an indicator that something is seriously wrong in your circulatory system.
With those of us diagnosed with lung 'disease' it's par for the course and largely we know what's causing it. That you know you will recover quickly is because you understand your condition; so I don't regard when its happening to me as unusual or an emergency. That being said if my sats dropped to below 80 and stayed there despite me resting and using Oxygen then off to ER I would go.
Essentially I would say it boils down to one size doesn't fit all, and once we have our diagnoses we need to understand and manage ourselves using the knowledge and advice we have and applying it with a great big dose of self awareness.
True, I have been told I am not suitable for treatment, but with my condition it merely prolongs the process not cure it.
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