My name is Sheila, i have emphysema and bronchiectasis, although the main question is low oxy level readings, any feed back would be greatly appreciated!! Just happened to come across this site for the 1st time the other day and was amazed how good it seems to be. Not very computer literate but hey ho!! Wishing you well
New here!: My name is Sheila, i have... - Lung Conditions C...
New here!
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49 Replies
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Hi Sheila, welcome to the site you will find many friendly, helpful and knowledgeable people here. I don't have the conditions you have so can't help you with those. Do you do your own oxygen readings with a pulse oxymeter and they are a bit low? By the way, if you go to the green HealthUnlocked bar at the top, click on your name, pull down menu, third item says messages. Click on that. Someone might have sent you a private message (that is a way you can communicate with members and others cannot see those messages). I wish you all the bestxxx
• in reply tojenss
Thanks Jenns, i would'nt have got as far as i have without your help!! I also see it has helped others too, keep up the good work!! Xx
Welcome to the site you will pick up a lot of helpful hints and receive a lot answers on here so keep looking in I have learnt a lot in my two years in this site and still learning so welcome aboard
• in reply tojimmyg23
Thank you so much Jimmg23 it certainly seems to be the right site for me!! Xx
Hi Kininmonth I am also new and have been made feel very comfortable and great advice
• in reply toBarbie52
Thank you Barbie52, i only wish i'd found this site years ago!! Xx
Hello Sheila,
Welcome to the site. I don't have Emphysemia, nor do I have oxygen so can't help with those I'm afraid. But I do have Bronchiectasis. I use Seretide 250, Triotopium Handi Haler, Salbutamol, sometimes have Salbutamol nebs and sometims Saline nebs. I also take Mucodyne, 2x3 times daily. I'm having a rest from Azithromycin at the moment as my consultant says my chest is stable. But will start them again for the winter. Take care, poemsgalore xx
• in reply to
Thank you poemsgalore1, did you find Azithromycin helpful,,,, I have read some good reviews and hope to try it when i see consultant. Many thanks Xx
Hi Sheila, I care for my husband who suffers with severe emphysema and is using oxygen for ambulatory when necessary. He was referred for pulmonary rehab (fantastic course if you are ever offered it) - prior to the course he was given an assessment and the nurses noted that his oxygen levels were falling below 88 on exercise. He was prescribed 2 litres of oxygen when walking around but he doesnt use it all the time, he knows automatically when his SATS are low.
We do have an oximeter at home and I use that particularly if he is ill and then I can monitor his SATS and work out the best plan of action!
Apparently for him 88 is the magic number - sats below 88 can cause damage to other organs in the body so it is essential to use the oxygen if you are prescribed it.
I hope that you are keeping well Sheila and some of this information is helpful. Take good care, TAD xx
• in reply to
Hi Tad, sorry to hear about your hubbies problems, my hubby is not quite as understanding as you are, though he does his best!! I had a bad infection last october, been in and out of hospital ever since. Respiratory nurse came this morning, sats where 84 at rest, which is pretty normal for me at mo. She does'nt seem to think i need oxygen as she thinks sats will improve when infection does, On Doxycycline until i see consultant, which is'nt til end sept, though she's going to try to get one sooner. Lets hope hubby can keep his cool til then!! Though i do appreciate it can't be easy for spouses!! Take care and thank's for your post Xx
• in reply to
I hope you get better soon - my husband uses doxycycline when he has exacerbations. Hope you can see the consultant sooner. Take good care, TAD xx
Claudine• in reply to
Can I ask what an oximeter is? Should I have one? I have Bronchiectasis and all I know is that my lung function is 57% and does not seem to have changed over a year. I have a lung function test once a year but that's it unless there is a problem.
• in reply toClaudine
Hi Claudine an oxymeter is a small device you clip on your finger to tell you the oxygen levels in your blood. By the sound of it i would'nt bother as your lung function sounds pretty good. Take care
Claudine• in reply to
Ah yes, I remember those in hospital! Today I have started my reserve prescription after a few days of strange symptoms. Waking up with a coughing fit of blood at 5.30am kinda confirmed it for me! Can't decide now if I feel awful from the infection or the antibiotic! Oh joy. Thanks for taking the trouble to reply.
Hi Sheila
A very warm welcome to you. Is it anything specific about low oxy level readings you are wanting to know. BLF are very helpful - you will find there number by clicking on the red balloon.
love cx
• in reply tocofdrop-UK
Thank you cofdrop. i will try BLF. All good wishes Xx
your oxygen level varies ...im oxygen dependent and mine should be around 88 but im usually under that because i do check it with a pulsometer although my nurse keeps telling me off for doing that......you should ask what yours should be but i usually know when mine is low because it feels like my brain is being squeezed out.....ha ha really
• in reply to
Hi Mandy, thank you for your post, i do have my own oxy meter, it reads 84 at rest, though not on oxygen yet. I know what you mean about being obsessed with readings though!! Take care Xx
• in reply to
im very surprised your not on oxygen with that reading...there is no such thing as a silly question thats what i teach my granddaughter so i have to ask if your gp, respiratory nurse, consultant etc know thats all your reaching because obviously if its that at rest then its a lot lower when your busy
• in reply to
my respiratory nurse came this morning and seemed to think levels will go up when i finally clear this infection, Must admit it is getting to me now. This started last october and never really cleared up since, been in and out of hospital with it. On Doxycycline til i see consultant at the end of sept. though she did say she would try to get me an earlier ap. we will see.
jenss• in reply to
Hi Sheila, considering that sats below about 90% are generally thought to lead to damage of other organs, it may be wise for you to check how the nurse is going with getting earlier consultant apt and also for you see your GP to discuss? Just to be safe? Take care darlxxx
• in reply tojenss
Hi Jenss, I must admit its getting pretty frustrating but what can we do? Community resp. nurse say's she's chasing consultant, and GP says it i out of his hands to do anything until i see the consultant, so hear i sit a complete couch potato, not like me at all!! waiting for the powers that be, with a very frustrated, prob. not the right word!! hubby as well. Thanks for message and take care Xx
jenss• in reply to
Hi hun sorry to hear that you are having this frustrating and worrying time- and hubby is probably worried sick as well. I do hope you will get over this infection quickly-are you feeling better on the antibiotics now? I also hope that the nurse will get the consultant to see you sooner so you can get some more advice and help.
Take care of yourselfxxx
• in reply tojenss
Thanks jenns, just a waiting game i suppose, seem to have been on antibiotics forever!! While i'm resting, which is most of the time i feel ok, but as soon as i try to do anything oxy levels plummet!! I know we are supposed to exercise with COPD but am really at a loss as to what to do. I am usually a happy person and hate complaining like this. Hope all's well with you Xx
• in reply to
as jenss said this is about your vital organs...when your on oxygen its to keep your heart and brain etc healthy because they get damaged if your oxygen levels are low it has nothing to do with your breathing it dosnt help that
if i were in your shoes i would be making an appointment with my consultant asap
• in reply to
Hi Mandy thanks for message. as i explained to Jenns not a lot i can do now. its just a waiting game, i appreciate what you say and thats what worries me. but they really don't seem to be!! Xx
welcome! - I m sooo glad someone else is computer illeterate...I am utterly dreadful Ibut then I am ancient - that's m,y excuse!) I have been on the site for a few months now, and have only just learned I can check for private messages!!! - because of you...so thank you 
• in reply toLouisiana
Ha ha Louisiana!! I Too am ancient, well just 63 with the body of a ninety year old but the mind is still 25!! This site seems really good so lets hope we get to grips with it!! Wishing you well Xx
Louisiana• in reply to
thanks Kininmonth - know what you mean about the body...yike, mine is a disaster. ...leaving trails of dust as I walk I suspect , my bones are so messed up....ah well, gives me something to talk about You take good care of yourself ....... lovely to hear from you.
Hello and welcome Sheila.
• in reply toPuffthemagicdragon
Thank you Puffthemagic dragon!! Xx
Puffthemagicdragon• in reply to
Call me Puff, everybody else does !
Hello Shiela, sorry can't help on the oxygen question but welcome to the site . Sure someone will be able to advise.
• in reply tokatieoxo60
Thank you katieoxo60!!
Welcome
If you have a oxymeter what does it show at rest? I am waiting for another PR. But if you can get on one well worth it as the PR know what you can and cannot do and tell you the best ways forward.
My last PR I had a lung function of 76% but was getting over a major lung infection I went to 80% on slight inclines and my calf's cramped. I was told to stop and recover and carry on. 5 years on my Lung function is 57% upright 44% when flat my O2 at rest is 92% going up stairs I drop to 79/88% But I do have an advantage I do recover fairly quickly.
Be Well
• in reply toOffcut
Hi offcut, my resting oxy levels around 84 much lower when i do anything!! I had bad infection last october and never really got over it. Can't do PR at mo because of low sats, though my respiratory nurse seems to think they will go up when infection gets better, you have given me hope!! Many thanks Xx
happyfeet59• in reply to
84 when just sitting is pretty low. How long have you been seeing these numbers? It is true that you can have a temporary blip when there is an infection. Last year when I had falling sats I kept notes in my diary. My GP wasn't really interested - my problem was that I looked well. Note each day, what your readings are at rest, when moving on the flat, after climbing stairs, middle of night. And show this to your consultant.
When I told my consultant about my results she decided to have me tested for oxygen. Everyone was amazed when I was found to need a huge amount of oxygen to keep my numbers up. You, of course may only need a little.
When do you see your consultant next? Is your consultant a bronchiectasis specialist? Sometimes ordinary respiratory consultants don't understand bronchiectasis.
Also, do you know what bugs you have been growing over this time? I assume you have been having samples analysed when you have a flare-up.
• in reply tohappyfeet59
Hi happyfeet, thank you for your message, my oxy levels have been 69 on climbing stairs and 70's when i move almost at all. Have the H influnza bug and not been told what else. Seeing consultant end of sept, though respiratory nurse going to try and get me seen earlier. Been in and out of hosp. with this since last october, had arterial blood done and they seemed to think it was ok. All very fustrating!! Take care Xx
• in reply to
Im at a loss after reading some of your posts.....i was admitted to hospital at Christmas by my gp because my sats were 76 and i was put on 6 liters of oxygen for 4 days and wasn't allowed out of bed....it was then reduced to 4 and about a month ago it was reduced again to 2.........yet your being told your doing ok it makes no sense
• in reply to
Hi Mandy, i know what you mean as i had much the same, was on oxygen in hospital. 5 admissions this year, can only assume my arterial blood oxy is ok, Certainly many questions to ask when i do see consultant!! Are you still on oxygen? What are your sats now? Hope you are feeling better Take care Sheila Xx
• in reply to
yeah im on it at least 16 hours a day....yesterday my sats were 66 when i was washing the dishes its reading like that when i wonder why the hell im on it because they always drop so low wherever i do anything
resting i go anywhere between 84 88 and on rare occasions i hit the low 90s...i hate being on this i wont go out and i know its not good but i cant bear it
• in reply to
Awe bless you Mandy, as you say i thought the idea of oxygen was to enable us to do more!! I can understand the not going out, do you think it's denial? I often think i'm that way, alway's hoping tomorrow will be better. Take care Xx
• in reply to
yeah i think a lot is denial i think its only been a few weeks that ive accepted im not the person i was and i will never be ...and i cant stand it when i catch someone staring at me and what i cant stand more is people saying i imagine people are staring at me...they really are !!! i also am so worried i will get one of them terrible breathless attacks where you lose control of your body for a few seconds because that just takes away the feeling of achievement and just leaves me feel stressed and upset.
Dont get me wrong i do go out when there is something to out for, like recently it was my great nieces 2nd birthday so i took my 2 yr old granddaughter to the party
its still very early days for me i think because i was only diagnosed in december and told i may need a transplant in the january then they threw me straight into pr and i dont think i took it all in..
blimey this is long my fingers are going numb ha ha
oh then there is the oxygen its flipping heavy to drag around
happyfeet59• in reply to
Those are very low numbers. Yet your arterial blood is ok. It is true that an oximeter only gives an approximate reading and the arterial blood gives the true reading, so the two are often different. Also, they are looking at other numbers when doing the arterial bloods not the saturation %. There is a reading they are particularly concerned about which, I think, measures the pressure of something. I know because this was causing my oxygen nurse a lot of problems as they couldn't get it to read high enough even on oxygen. Someone else may be able to explain better. And they need to check for co2 retention.
• in reply tohappyfeet59
Thanks happyfeet, will certainly be asking questions when i finally see consultant!! Take care Xx
Really think you would benefit from Oxygen Therapy. Mid 80's is far too low. Get a GP referral asap. Good Luck.
• in reply towarwickstag
Hi warwickstag, thank's for message. Will have to see what consultant has to say next month. Take care Xx
welcome newbies x
Thank you juliekkay Xx
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