mike new boy on the block

long term copd diagnosis,probably stage 3 by now.been 24/7 carer for my wife who recently passed away after 4 year struggle with stroke disabilitys but who had unmanaged i.p.f which makes copd seem like a walk in the park.

Does anyone out there suffer large saturation loss on exercise down to the seventys but recover to around 90 within 10/15 mins and has preambulatory o2 helped when exercising/working.thinking of buying a small portable concentrator as i know that hacking around with a small cylinder is no fun,also i need to know if pulse breathing is suitable for copd sufferers.Reason i as is that local long term conditions team in my area(tameside)don,t really have any real interest in helping me or just don,t have a clue about respitory diseases as i experienced with my wifes lack of tratment.Sorry for the moan,just need to get it of my chest(literaly)thank you and good luck to all

15 Replies

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  • Hi Mike and welcome to the forum. Firstly, I am sorry for your loss. Losing your wife is a big thing to go through. Secondly, are you seeing your GP or have you been referred to see a consultant? If not a consultant then that is probably the way to go. Your oxygen saturations also need looking at. Most reputable companies would not sell you a portable oxygen concentrator unless you have had oxygen prescribed and for a good reason. Too much oxygen is as bad as not enough. Once the respiratory team have assessed whether you need supplemental oxygen they can also tell you at what rate you should be using it and whether this should be on demand or a constant flow. Most oxygen suppliers will now also be able to loan a portable concentrator.

  • unfortunately the 3 respitory consultants on my patch/hospital and their long terms conditions team probably know less about copd and lung fibrosis than i do.i am aware about the dangers of using too much oxygen due to the dangers of co2 retention etc.Last arterial gas analasis was within the scales of not requiring long term o2 therapy 16 hours a day etc due to rapid recovery rates as i mentioned.Walk test was not done proffessionaly and results obtained probably meaningless.Just looking to see how peole have experienced the use of ambulatory o2 as by the time i get refered to another trust i don,t want to arrive there having damaged my heart due to overworking on low sats.

    Unfortunately our trust works on a policy of one size fits all and would sit me on a conrtinuous concentrator 16 hours a day achieving nothing .i think with some technical guidance and common sense i should be able to better manage my situation untill i can connect with a more capable rspitory support team.This will probably mean self financing to get what i need when i want it as oppossed to months of inaction sponsored by the state.

    many regards

  • Are you able to get to a different hospital in a different trust, skischool? If so, you could ask for a second opinion and stipulate that you want it somewhere other than where you're presently being treated.

  • Hi Mike and welcome. Sorry I can't help but I'm sure someone on here can. Take care 😊 xxx Bernadette

  • thank you for your reply

  • Sorry to hear of your loss ❤

  • thank you,she was a very brave lady,tragically the system failed her in the last few years,that is why i believe sites such as these will be essential in the future as the nhs is silently imploding and hopefully will empower people to arrest this decline and take more control of thier own lives,x

  • Hello , I'm so sorry for the loss of your wife , my sincere Condolences .

    I've been on ambulatory oxygen for 3 years , I was getting checked every 3 months at first by the respiratory nurses and I told them I like to get away the odd weekend so they prescribed me a concentrator along with a spare battery and car and socket charger.

    I had a walk test and my oxygen upped to 3 litres a minute...that was last June ..not heard from them since. I think I need to go up again though as my sats are dropping to the mid eighties on 3 litres. I haven't seen a Consultant for 3 years....I haven't had so much as a cold in all that time though...I'm expecting an appointment for my annual assessment..not holding my breath...the nhs is stretched to say the least.

    At all times we are responsible for monitoring our own health and tell the doctor what you require. I informed my doctor of the drop in my FEV1 after I started keeping copies of my test so I could compare them and that my sats were dropping to the 70's on exertion...I soon had an appointment with a good Consultant and was found to have Alpha 1AD a genetic type of emphysema and I needed oxygen therapy for quite some time.

    Good luck on your journey, wishing you well and better times , huff 😊

  • thanks for your reply huffer,my gp wouldn,t know my fev if she stood in it,taking care of my housebound wife meant that i had to become an expert in ipf and copd whilst fighting her cause but unfortunately that meant ignoring my own cod deterioration.As i sit here now my sats are a reasonably happy 91 and given our degree of copd between 88-92 is probably about the medium best we can expect at rest and without breathlessness.All i am trying to ascertain from fellow sufferers is has ambulatory o2 been helpfull whilst out and about as that is when we all get a bit anxious and have sudden needs to stop and rest awhile,also having pished my wife in a wheelchair complete with back up o2 cylinder i know how cumbersome all the kit is which is why i am happy to spend my savings on a mini concentrator that the nhs won,t provide only they deliver o2 on a pulse setting which is dependant on detecting your own breathing rate as opposed to a cylinder on continuous flow which is like an o2 shower and much of it is wasted.also due to thier small size and power can probably deliver a max equivalent of 3lpm.Sorry this is so long winded but getting self medicating info out of the health community is like blood from a stone.they think it undermines thier authority and wisdom,many regards and good health for you in the future

  • Hello Mike , I have found the oxygen helps enormously, it really has helped me a lot. If you can go private and see a good Consultant they would probably see that you would benefit from oxygen therapy and recommend it for you.

    emphysema.net/bindex.asp

    This is a good site , plenty to read and information on self management and medications.

    Stay as well as possible , positive thoughts and all the best , huff .😊

  • I have a portable for going out it runs out pretty quickly so I tend to turn it off when just sitting and I do fine pretty exhausted when I get home but still find it easier then dragging around canisters. I want to start walking more to get my lungs stronger I drop pretty quickly after just a little excertion still trying though. My kids try to get me to walk when I go to the store instead of using scooter but I am to afraid

  • Hello Mike, sorry to hear of your recent loss of your wife. Welcome to the site. Don't fret about moaning sounds like you have a right to in my opinion. Although I have COPD I cannot help you with your oxygen dilemma, but sure someone can on the site. Have to admit when it comes to chronic long term care in the community it falls far short of how it should be in many areas. It has become necessary to acquire some treatments outside the NHS domain sadly. This is not what you really want when recently breaved and your own health down due to caring demands. Take care and hopefully the health service will come to your rescue very quickly, maybe the advice offered already on site will have helped.

  • I cant help you with your sats query .But I certainly agree that lung disease gets the short straw in care x

  • Hello and welcome Mike. So sorry for your loss. Am not on oxygen, so can't help with your query. Great advice above. The only thing I would add is that you should ask your GP/respiratory team to refer you for pulmonary rehab - I learned such a lot - great info as well as exercise for COPD. Good luck x

  • Hi. I am in similar state to you except have 24hr 02. Bought 2nd hand portable light weight American concentrator (only 1lb 7oz) half new price 3 yrs old £750. Try preloved and gumtree as well as ebay. Ask me if you want any further gen. Good luck.

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