Hi all, I just wanted to ask about lung function. My mum has emphysema, prof at chest clinic says she has 20-25% capacity. she is on 7.5 predisolone a day with usual inhalers. her oxygen level is usually around 92-95 so oxygen is not needed, so why is she so bad. Most of the time she cant even stand up in kitchen and struggles to go to loo. She has a community matron, so although doc told me about a year ago she was end stage is this how it will be now. I did read somewhere that she may never need oxygen but doesnt mean she is better off than someone that does. I feel helpless as i dont know what else to ask them to do to help her. Thanks.
Lung function 20-25%, how bad is that... - British Lung Foun...
Supplementary oxygen doesn't help with the the breathing. It makes sure there is enough in the blood to keep the organs healthy. My sats are 88 to 92 ish but they put me on a very low flow of 1/2L/min for 15 hours/day. I'm at 27% lung function. I have to use a child's machine, Does your mum move about a lot ?
I wonder if your mum takes any exercise? I ask because my lung function varies between 22 and 19% and I can do some things, though slowly. One of the first things to go when there are difficulties is usually the exercise, but this then becomes a vicious circle: not enough exercise = loss of muscle tone = more effort required to do anything = shorter of breath. If she has not been offered help with this ask about a referral to a pulmonary rehab group or a physiotherapist who can work with her to get a routine in place. It needn't be anything too strenuous as long as it is done regularly. Try to encourage her to do what is suggested and you will be doing her a big favour. Good luck. Auntymary xx
Your mum is very lucky she has you to care about her and want to help her.
My lung capacity is around 22% and, like your mum, my sats are always good. In fact, I'm sure I'll be lying in my coffin one days and I'll hear a heavenly "well, her sats are good" !!
I have had many bouts like your mum is having, does she have any better periods? I don't have extra oxygen as I retain it and pumping more in would be very dangerous, Maybe your mum does too and needs to try and get rid of some of that extra oxygen by breathing in less and breathing out more, Before she stands up to go into the kitchen or to the bathroom, get her to drop her shoulders down, breath in slowly to the county of 2, then out slowly to the count of 4 and to do this for a while until she actually moves. Then, as she is moving, try to keep that same rhythm going and move slowly. Having been a person who rushed around all my life it has been very difficult to get me to slow down, but it's imperative that she does. It's very easy to start gulping air in, especially when you get anxious, but is the worse thing you can do. I, too, am classed as end stage but can so far manage better than your mum seems to be. End stage can last a number of years though and I don't know how long your mum has been end stage. I am only an expert in my own symptoms alrighttreacle, and the above is what works for me. Even though we might have the same illness, doesn't necessarily mean it affects us the same.
The best thing you could do is phone one of the British Lung Foundation nurses on 03000 030 555 and ask their advice. Having a list of your mum's medication to hand when you speak to them might be hepful too,
Best wishes, Libby
Excellent advice here! Good luck, hope mum appreciates your concern!
Love Wendells xx
hi m8 just to let you no my capacity was only 8% that was 6 month ago so i dont no what it is now but i no what you mean ive had to get a plastic toilet bottle as sometime i cant even do the 5 yards to the toilit i make it most of the time
in no some say Exercise but some of us can only just move about like ive been stuck upstairs in my bedroom now for about 4 month as its got were i cant get up and down the stairs anymore
oxygen level is usually around 90-91 but the doc said oxygen work for me take care all the best tony
My husband is similar to you as he uses a urinal, he keeps it in the dining room as he can't make the stairs. We are going to get a stair-lift fitted so he can at least get back to some sort of normal life and also getting a walk in shower fitted as at the moment he is struggling to lift his leg over to climb into the bath/shower. We have to pay for it all ourselves because we had the sense to curb our spending when we were younger so we had a bit of extra money for our retirement.
My husband says the same as you, how can I blo#### well exercise when I can't blo####### walk, but I tell him that he can't walk because he is sat on his backside all day doing nothing. I am 70 years old and do everything for him, he has been told by so many medical people to walk across the room to build his wasted legs back up again but all he says is 'I can't'. I now tell him that it is his life he is throwing away and if he doesn't help himself no-one else will.
We bought a vibration plate machine and stuck it in the corner of the dining room, I told him to use it for 10 mins. each day and if he didn't he is on his own and I will do nothing for him. He has now used it for a week and says he feels better as the plate vibrates through all his muscles toning them up, but there again, as I said before, we bought it ourselves.
I sat him down a couple of weeks ago and told him to keep quiet whilst I had a talk with him. I told him to think of his lungs as his arms and they are thin and wasted, I said that when you go to a gym and start lifting weights and exercising, your arms start to get firm and muscular, that, I told him is what happens to your lungs, they will get stronger and you will be able to breathe better.
So it is down to you, I don't want you to feel as if I am getting at you, but after living with a husband who moans and groans all day and does sod all, it makes you bitter, because at the end of the day it is your life and you owe it to yourself to do the best you can for yourself. If you cannot walk very far, ask your doctor for a zimmer frame to hold you up when walking, you will improve if you try. You owe it to yourself.
I can't manage the stairs either. But i do try and do what I can. I had a physio come and work with me for a few weeks, working out what I could do and I try to do it at least 5 days a week. Don't get me wrong, it is probably not what others would call exercise, but it does keep me going. x
Brother I can surely relate to your not being able to even getting up and walking the 5 yards or so to the bathroom. I have problems with my bladdder and I get these urges that I have to pee like right now and when I use to jump up and walk that 5 yards to get to the bathroom B4 urnating on myself, buyt I would have to brace myself on the walk as I stand in bathroom and nearly passout and grasping for breath. I'm afraid to try and excercise because of fear of having a copd exasperation and end upn at hospital. I was diagnoseed 3 years ago with stage 3 and 30% lung function and again tested 2 years ago with same 30%. I thgen read the chart and saw that 30% is the last number bbeing in stage 3 and 29% to 0% is stage 4 and i don't want to see my score again. I am on oxgen only when I walk but not sitting down.
Good luck man and hang in there. We all have a difficult time with this disease and hopefully they will come up with a cure. I wish I had the financial means to get the stem cell transplant.
thanks for sharing your story
(Things don't change for you then sweetthing?)
Agree with everyone else, however difficult it is to exercise, it really is the best thing you can do, in PR they taught me that it is OK to PUSH yourself, not to collapsing point, but just to your limit. And make sure it IS your limit, not just kidding yourself you can't do any more.
My lung capacity improved a lot after PR, so even if you can't walk to the shops, any exercise is good.
ow sweetthing i do no were you are coming from and only use the urinal as a emergency
i dont think ive usedit throw the day yet its mainly throw the night if it cold or on a morning ive just got it to be on the save side ive got tree beutifful grandchildren and want to be with them as long as i can its not a case of giving in as i will never do that but you have to understand as thing get worce you are unable to do as much as befor some time its not just your lags from standing at the sick for a shave ive gone to electric razor and now its takes 4 or 5 goes with that as even just moving your arms about will make you breathless what i did do to try and keep my lags going is i got a little exercise bike you dont set on it its just a little one that sets on the flour if i can i go on it but it not offten in the last 4 month cheers tony
Hi Tony. Several years ago my husband with COPD spent five months in bed because he said he was too breathless to move. He got to the point where he could no longer walk and would collapse when he tried to get out of bed.
The thing is even if you are in bed almost all the time try moving your legs and arms a bit and tensing your muscles. It will help you stay as mobile as possible for as long as possible.
With difference between who needs oxygen and who does not it is following doctors advice when they can see all the things that we cannot and make changes as they are needed.
Talk of end stage is a thing from America and not something that has anything to do with condition or how long it will last for and my advice would be ignore such talk it is another stage where each one can do what they canto remain unique.
Hi Bethco, thank you for replying and thank you to everyone else as well.
I understand what everyone is saying about exercise and usually my mum can make it to loo etc and breathing calms after a little while. Over the last few days she is really struggling to breath, sometimes just sitting and going to the loo which is only about 5 steps away leaves her in a terrible state. Doctor been and upped her steroids for a week to see or said she can go into hospital, but if it worsens call an ambulance. She has had a man come to house and had the course of pulmonary rehab and does her breathing exercises. She has had a couple of blackouts as well over last week. She has regular flare ups but it seems they are getting more and more and things worsening, its very scary and feel helpless as to what to do. Thanks for all your help and i wish you all well. xxx