I am really fed up been trying so hard consultant yesterday just could not be bothered more or less just said your severe CopD. Told him about my low sats he said oxygen nurse deals with that nurse took my sats 85 he said it was ok .Today The oxygen nurse came to check how I was Doing after she put it up last month she has put it up again but I'm still dropping and now of course my liquid won't last as long I spoke to her about trying a weekend away with our caravan and she said she will get me a portable concentrator to use in van and for ambultary she said I will get 2 cylinders because will not be able to use liquid in some places .However how am I going to use concentrator when I'm in a wheelchair and to top it all sats are still dropping and I have been given a card to say I am retaining co2 so yes I am Definitley fed up x
Oxygen. Nurse : I am really fed up been... - Lung Conditions C...
Oxygen. Nurse
That's all so hard. No wonder you are fed up. And that's putting it mildly.
Can't really, just sending love and hugs
K xxx
Thanks for Hugs xxx
I do hope you manage to get a short break away. I do so feel for you. Love and hugs xxxx
Thank you sassy I need to do it for Frank xxxx
While most of the medics are lovely and do all they can to help you there is always the odd one or two that should have chosen a different career. When one is vulnerable it's so easy to be knocked back. As I am not on oxygen I can't offer any advice but I am sure a few people will be able to help with how to manage. Do go to your caravan and have a change. It will do you both good. You might as well be fed up somewhere nice and it may just cheer you up. Love Rosabeth
Hi RosaBeth I why can't something go right for once believe it or not we been invited to go on a day trip next Thursday to South Shields through a friendship group that ageing better support and I actually agreed to go but because my oxygen has been put up again will not have enough to go also Doctor prescribed me accupella Frank went to chemist to be told they have been recalled and will not be available till 24 August I really don't want to go back over I've been trying so hard but can feel panic returning Love Margaret
You are right about cut backs I am on Oramorph and the doctor has cut the amount I can take I wish I knew the pain had gone take care
its all cutbacks ive had a game getting my neb capsules...had too get my consultant secretary to email my doctors...they just donot want to give you what you most need...its getting a nightmare..my lungspecialists nurses are always too busy aswell...nhs very poor ...but im lucky my consultant gets onto them...but everythink is a fight today...
Hi dawniee, I have just spent a couple of hours with a friend who is struggling, she was sent home from hospital this week. When she was in A and E she said there were eight patients waiting for beds . Its a terrible worry .
Hello Time_2_drink, once again its all happening to you at once. Have no magical words to make it better. Take one day at a time and try to live it to the fullest you can. The cut backs seem to be effecting all, hope you can get away for a short break it might make you feel more human rather than just a patient or illness so to speak. They say a change is as good as a rest, its hard to think positive when everything seems negative, you can only do what ever is best for you and try to cherish the good bits when all else fails. Scream if you need to, but hugs really work wonders bye for now xx
Thank you Katie you couldn't make it up could you xx
Real stories are hard to beleive but they happen sadly. Hope you have a good weekend the suns out here right now.xx
Glad someone's got some sun would you believe it's pouring Down here we haven't had much sun this year so we won't have any problems with water shortage hope it calms down a bit have to leave shortly got eye test in next town still not ventured to local town I'm a wuss xx
Hi Time_2_drink, hope your eye test went well. Its been raining here all night now but the gardens need it anyway. Thought this might give you a laugh, the electric company sent me a email to submit readings but a smart meter was installed last week. When questioned they said press nine on the key pad, it doesn't have a keypad, it seems speedy smart meters take longer than a mere phone call. No wonder older people don't want these things I thought it automatically sent daily readings to the company via SIM like a mobile phone or have I got it all wrong.Enjoy your day what ever you are doing I am off to afreinds house for a meeting later. xx
Hi Katie I was under the impression that the readings went automatically you couldn't make it up could you the ineptness honestly .I Don't know if you remember But a few months ago we agreed to get a smart meter with the proviso electric would not be of for to long because of the oxygen to cut a long story short they didn't turn up .We were told we would be given 40 pound compensation because they broke there contract needless to say we are still waiting .I Had my last PR today was advised to join a breathercise group to help keep excercise going there is one about 10 mile away so I am considering it .Hope your meeting went well xxx
hi Time_2_drink meeting went well but some typing to do tomorrow had a nice lunch. Sounds like a good idea to go to the exercise group for breathing. We have something similar here to follow on after PR. Rang about smart meter reading she told me sometimes it can take 28 days for last reading from old meter to come through but not to worry it will be sorted out by them.xx
Keep a record of last reading if possible glad meeting went well walk test went quite well better than I expected xx
Doing well both of us today, keep smiling tomorrow is another day xxx
Have to admit T2D I can certainly empathise as I too am working at getting those unsupported SATs up and in fairness very similar readings. Fortunately over time mine have improved but since it is COPD we have there is no guarantee either way.
I wonder, is it worth asking whoever prescribes your oxygen requirements if your prescription can be returned to cylinders after your holiday break?
My wife and I have found if not going terribly far she is able to push the Portable Concentrator [PC] as we walk. It just happens I am in a wheelchair/scooter too. There is a possibility that we could perhaps "hang" the PC on the chair using bungees and such like things to save her pushing it along. I can assure you it is fairly light compared to what my wife seems to fit into her shopping trolley.
We attended a conference, fitting in an evening before and a full day of conference using the PC. I have to use it a lot more than just ambulatory as well.
All we did then, whilst on the move my wife pushed the wee PC along, in fact I believe she pulled it by choice, and just set it down where we chose to sit. The clever bit, compared to the cylinders of Oxygen, we just plugged the PC in and used their electricity to keep the sats up both through the evening, then the day of the conference. We were stopping at a Campsite over the 2 days and plugged the PC directly into my Campervan and used the campsite's electric and we just paid for the hookup that we would do normally.
We ended up being away for 3 days in the end as it was mid week and quiet [a lovely site with great immobility support in loos + showers]. Now I had been on Oxygen normally for 15+ hours per day and did not once use the Oxygen Cylinders as whilst we were driving I could just plug my PC into what we all rather foolishly refer to as the cigarette lighter socket.
I am looking forward to our annual visit to a music festival in August over 5 days, a tribal gathering too involving children and grandchildren. I haven't worked out entirely a way around this as we have no direct electrical supply. An extra battery, using the organisers generator in part, our solar panels on the roof of the camper as well I reckon there's a way around it.
Naturally as with everything else I am bouncing these ideas off my Pulmonary Nurse and regularly checking SATs. Breaking new ground with the Pulmonary Nurse but it is good fun and we are both enjoying it. I am sure you will find ways too T2D. If I can think of additional ideas as I work up to the 5 day event but it may be worth asking if possible could you have a trial weekend with the PC to see if you can get it too work for you.
Whatever you do have fun anyway!
So too all you fellow souls out there with your partners and family
Hello Wullie2009 and I've read your reply to T2D with total admiration. You certainly put a great deal of thought and planning into the COPD illness. Not much seems to stop you doing all the things you enjoy etc! I have a PC on wheels too and it does give you unlimited time out of home as long as you can plug into the National Grid,lol !! Its great that you are continuing to go to Festivals in your Camper Van and maybe you will take a photo or two so we can see just what is still possible with a bit of planning!
Have a wonderful time with your family. Kind regards.
Thanks wullie falling sats are worrying just psyched myself up for 30 second bath lol used to wallow in it for an hour with drink a no book those where the days on my new setting of 4 was 2 ambultary still dropped to 63 . We would have to try to get concentrator attached to chair husband will be pushing me .I am sure the oxygen nurse said it would be a pulse operated but I am a mouth Breather and I've read on this site that they are not suitable for sleeping what was yours please .There always seems to be a obstacle I am now virtually 24 /7 Thanks WUllie. Ps how did you get your sats up .
HiT2d. You won`t use the concentrator when you`re in the wheelchair. As the nurse said you`ll use the concentrator in the van, where you`ll have an electricity supply and the cylinders when you go out. I`m sure you`ll be able to carry them in your wheelchair somehow so that Frank has his hands free to push you. I f necessary just take a couple of folding chairs with you and just sit outside the van ! It will give both of you a break. I wish I had my dear husband still I`d be off like a shot oxygen and all. Sheila x
Thanks Sheila looks like that's what we will have to do still trying to find out about concentrator nurse said it was pulse and I'm a mouth breather so it would be no good I'm hoping to hear from a mouth breather who has similar problem solved .Off in rain to get eyes tested now x
Querying Loss of Oxygen Flow In Tubing.
visit from nurse
New to inogen five oxygen concentrator
