Lockdown has done you No Favours.

[Beachballs]

Had my first face to face with the Respirotory Nurse yesterday as previous chats had been over the telephone. She needed to check my oxygen levels but we had difficulty getting readings from her probe and mine. She ask me to walk with my oxygen on then when I got breathless to come in and put the probe on and she would take a reading, It registered 66. She then said that she needed to change my prescription, I am currently on 5 and use it for stairs and ‘ The Walk ‘ which I do for 30mins every day as per her instructions. She said I needed to be on 7-9 16 hours a day.

She suggested using it during the evening and all night . As I was sitting down yesterday evening, reality hit, I thought I don’t need it for this , I need it more for housework , after getting out of the shower , clearing wardrobes and blow drying hair....,.....

So my question is : is there nothing in between where I can get 7-9 of Oxygen to do the above activities ? My current liquid oxygen only goes up to 6. Also what do I do when I have to do the above activities which will fall out of that window of 16hours? Am I missing something here , just feel a little confused. She was also a little concerned that I had been left to my own self care during the lockdown, but said we have got you now. I know some of you on here are on 16hours of oxygen- how does it all work???

[Suzie42]

I hope you can get all the answers soon on here. How awful for you to be left with so many questions. Alas I'm no good as not on oxygen yet. Take care xx

[Beachballs in reply to Suzie42]

Thanks Suzy, Just trying to get to grips with it all. Hope you are ok ? Take care x

[Suzie42 in reply to Beachballs]

Yes I'm ok plodding on. .. xx

[MELNEL]

Good morning 💕 I totally understand that you shocked by her diagnosis and more so that it hit you later this day.

I would definitely give her another call to speak over it , to let her know that you have some questions and concerns about the new way with the oxygen.

I believe that she was very worried about you being alone during the time, but see this in a positive way, that she is worried about you and there to help you that you are not alone. 🌹🍀🌹🍀🌹😘

I hope you can get this sorted, till then take care and stay safe and warm 🍀☀️🍀☀️🍀

[Beachballs in reply to MELNEL]

Thanks , she is coming back next week, the oxygen is arriving on Monday , so yes will give her a call.Thanks for replying. x 🌷

[MELNEL in reply to Beachballs]

That's great, so just write down your questions what is important for you to get an answer. I do this often to write down the important question I want to talk about, same when I go to my GP, in the past I really never got my question answered because the visit was so fast over and Doctors and nurses have their way, talking and talking but not to give you answers LOL 😋 Best wishes 🌺🌺🌺

[Beachballs in reply to MELNEL]

Good idea , thanks .Not great at thinking on my feet, was not expecting to get my oxygen changed this quick , as only been using it for 4 months. x

[MELNEL in reply to Beachballs]

You very much welcome 😊😘 no worries. Just take you time LOL

[sassy59]

Hope you get some answers soon Beachballs. Thinking of you. Xxx🥰💜

[Beachballs in reply to sassy59]

Thanks .x 🌷

[teenieleek]

I don’t use oxygen but your questions sound sensible to me.

[Beachballs in reply to teenieleek]

Thanks , hoping to hear back from the nurse. x🌷

[Biofreak]

Hi. There are oxygen concentrators that have higher settings so they will probably give you a concentrator with the higher settings. My husband is on 16 hours of oxygen a day. 0.5 at rest and 4 when moving about. His advice was to use the higher setting when doing any activity but overnight the lowest setting whilst sleeping. He can switch it off when at rest during the day outside the 16 hours. It is confusing I agree. Your problem it seems to me is that you have to do everything yourself so are not at rest most the time eg making tea, cleaning cooking. I cook for my husband and make tea and clean and drive. So he is either at rest most of the time with the concentrator on 0.5 or off or having a shower, going to the loo or his daily exercise when his concentrator is on the 4 setting. You should discuss your daily routine with the oxygen nurse so she can give you better advice. Good luck xx

[Beachballs]

Oh thank you so much ! This makes sense to me now , the nurse did not go into any detail , just said I need 16 hours of oxygen, and most people put it on of an evening while watching TV and then through the night. It was only that evening I thought about the rest of the day and activities undertaken. I want to get this right , because there has been some misunderstandings between myself and the Nurse , with the present oxygen and the result has been my deterioration. The oxygen arrives on Monday and the nurse visits on Wednesday, she was supposed to call yesterday, but I will call her again today , now that I am clearer on how this works . Thank you again , and I hope you and your husband are ok. X🌷🌷

[Biofreak in reply to Beachballs]

Thanks Beachballs. We are plodding along. In your situation you are on the move a lot and I actually think you walk enough around the house looking after yourself and the house that you probably could leave the 30 minutes formal exercise. Don't really think the oxygen nurse has got a clear picture of what you have to do in a day being on your own. Best wishes x

[Beachballs in reply to Biofreak]

Thanks , I was a lot more active then I currently am , I do have my husband at home and we share the load !! He is waiting for a hip replacement operations for both hips and is in a lot of pain and struggles to walk , they are planning to operate on one hip in the next 4 weeks and for him it can’t come soon enough! So we are on standby for that. Hopefully we he can go out for days , when he is over the op and my oxygen is sorted!! We are a right pair at the moment !!!!😀 Thanks again. x 🌷

[Alberta56]

Good luck with getting this made clear.🤞🤞🤞It all sounds very confusing.

[Beachballs in reply to Alberta56]

Thanks , yes still sorting this , expecting a call back today. x🌷

[garshe]

I have been fortunate as my Respiratory team have visited my house many times this past year and also phoned often. In December I had a chest infection my oxygen dropped to 77 when walking. Within an hour I had oxygen delivered to my home. One concentrator which works off the electricity supply. A large cylinder for emergencies and 2 smaller cylinders to take outside with me. I was told to have oxygen 16hrs a day. Would leave it on all night and a few hours in the day when walking around. Did this from December to February .

My condition improved and I then saw the oxygen nurse at hospital. The appointment lasted over 2hrs.

I was then told didnt need the oxygen for 16hrs a day but when required and if on long walks.

I only use it whilst bathing and if I go upstairs too fast have a few puffs to get me breathing slower

I used to suffer terrible panic attacks but seem to control these now. I feel more secure with the oxygen in my home as a back up. Somedays I dont need it st all as my oxygen is back up now to around 94.

We are all different hopefully your Respiratory team will explain it all to you .

Good luck

xx Sheila 🙌💕🤞

[Beachballs in reply to garshe]

Thanks Sheila , that’s very interesting and helpful and has given me clarity, glad you are much better now and your oxygen levels are really good ! Look after yourself and thank you for responding to me. xx🌷🌷

[garshe in reply to Beachballs]

Yes I had my blood taken from my wrist for accurate reading. She said I was borderline for oxygen 16hrs but ok for now to use when required. xxSheila

[maggiewhiteley]

Did she give you a blood test, that is the way oxygen levels are tested, from the ear lobe or the wrist. I would ask to be referred to the oxygen clinic

[Beachballs in reply to maggiewhiteley]

Hi Maggie

That was the plan , but as I had just completed a course of antibiotics, she said we would need to wait 6weeks to do this now, so she will be back to do that. Thanks 🌷

[maggiewhiteley in reply to Beachballs]

Make sure they do the blood test asap. It can be just as bad to have too much oxygen .

[Beachballs in reply to maggiewhiteley]

Thanks will mention that . 🌷

[vwtopaz in reply to maggiewhiteley]

I would have thought an arterial blood test particularly when oxygen levels are low, possibly monitoring in hospital...... covid times Nurses are not keen for hospital admission, they do have short stay wards/ go home on the same day.