at a loss what to think

ok the resp nurse said to turn up ambulatory oxygen to 3 which we've done, strapped the case on him and walked about 20 mtrs down hill, his nails and lips were blue. got the bus to town, walked to 3 shops and back to bus and he struggled, he was really sob and blue, kept stopping for a sit down and walked so slow it took us ages, its a 10 min bus ride to town, 10 mins back, his oxygen tank was empty when we got home, that was only 3 shops and not for a long time, it was the walking and resting between shops took the time up. We have a wheelchair but he's so stubborn, I have said I am willing to push him, but he says it's admitting defeat. I say it's accepting help. He was more than grateful for the chair last saturday on out day to scarborough, so why won't he use it at home. I am guessing its a pride thing, but what's worse, sitting reasonably relaxed in a wheelchair, or being so sob you can't talk and look like a smurf. I know I aren't the one in the position and it's easy to think I would accept the help, it just leaves me at aloss what to say to him next. I have tried nagging, he didnt notice any difference unfortunately, he's so used to that. I've tried being extra nice and wheedling, he is so suspicious of that he looks at me gone out. HEEEEEEELLLLLLLPPPPPP

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  • Hi amagran

    I was just wondering if you take a pulse oxymeter with you? I use mine to adjust the oxygen flow to what I need for a particular activity rather than having a pre-set number to stick with. I aim to keep my 02 levels reading around 94 'ish'. I feel best if I can get them to 96% but that's not likely once I am 'walking with purpose' as opposed to just strolling. So, for example, walking around outside I usually need at least the 4 or 5 litre setting - though if it's nice flat pavements or around a shop 4 litres demand setting will do. Then when I am sat on a bus, once I have got my breath back I will either switch it off or have it really low at say, 2 on demand. This way, adjusting it higher or lower as needed, it lasts long enough so that I can knock it up to 5 or 6 litres when I am struggling - like on uneven pavements, slopes or carrying a bit of shopping.

    I know it all sounds a bit of a palaver, but after a couple of times out you will know pretty much what you need. So for example, you may set out for the bus with it at 5, then once standing around waiting for the bus turn it down to say 4 pulsed or 2 constant flow. Once on the bus, when Richard has his breath back, check if he is ok with it either switched off or on a low setting like 2 pulsed. Then just before getting off the bus, up it again to 4 or 5. Just keep checking to see that he is at 92 or above - I find even at 92% things are hard going outdoors so for comfort I go for 94 - 96%.

    It could be a good idea to go for daily strolls together down the road and back or something similar. That way you can try out walking with the 5 or 6 setting (can be a bit of a nose freezer lol) and see if it helps. You can take all the time in the world then as you haven't got to worry about how long it will last on such a short jaunt :) Also, doing a little bit out and about on a daily basis will gradually build a bit of strength and confidence. For many months when I first had my 02, I only went as far as the local shop and back - but I did it seven days a week. It was a struggle at first but gradually got easier. That was back before I moved into town - it was just a couple of hundred yards from my door to the shop.

    Hope you 'get it sussed' soon amagran, best wishes to you and yours, P.

  • What about using a rollator if he is not so keen on the wheelchair? I put my oxygen cylinder in the basket of my rollator which takes the weight off my back hence less sob..also it has a seat when i need to get my breath back.

  • Suggest to him he's conserving his energy using the wheelchair, there is no shame in it. He will feel better not having to struggle with his breathing I know what I would be doing in fact been to the Metro Centre today with my daughter and I used the wheelchair found out long ago it was easier Val x

  • It is a man thing staying out of a wheelchair as long as you can keeps the fight going on when you are still able, the oxygen nurse was aiming for keeping as little of the smurf while keeping mobile. There will be times when there is no other choice because the distance is greater than spirit alone can get and it is a matter of knowing what that distance is, taking the wheelchair in case you run out of oxygen or the exercise is out weighed by the strain on the body it is there as a safety measure. thinking of you with which ever solution you choose.

  • thanks for all the comments, may I ask also, if we actually can turn up the oxygen highrer than 3 withouit the nurses authorisation? may sound stupid for you all in the know but all this is so new to us,

    A year ago he was having monthly infections but a moderately normal life in between, gardening, shopping etc. Winter saw him having 3 fairly quick bouts of pneumonia and hospital admissions. He was really poorly over christmas. I arent convinced he actually got rid of the pneumonia but rather it was damped down by the doxycycline and reared up again after a month. In the last 18 months he has had18 lots of antibiotics, In may he got the ambulatoryoxygen and this month got the condenser. It all seems to be happening very fast. Though of course it may be the norm. He was first diagnosed with copd 3 years ago, and ipf was diagnosed last November. Oh dear sorry to be a whinge, but its so comforting to be able to talk on here openly knowing you all understand.

  • If I feel I need more 02 I turn it up even on 6L when I did the walk test it went down to 77! The nurse did comment but I said I would not be walking as fast or as far.

    I also have maintenance antibiotics these are suppose to lessen the infections Val

  • Read that blood gas were taken when the concentrator was added to medication, take it the RT is using those numbers in setting out the new prescribed level. Keep the RT nurse in the loop with how it is, then make the adjustments to live at his own pace.

    Pretty steep learning curve but you are doing great with guys that have done this and walk the walk along with you.

  • I can't really comment on this as I don't need oxygen, but my thoughts are with you. It is so hard for you to do the right thing.

    Lynne x

  • Hi Amagran so sorry to hear of this, I don't wan't to worry you but going blue can be a sign of of low oxygen levels in the blood, and blood circulations is not reaching the extremities. I think you need proper medical guidance on this.

    I feel your husbands 02 levels need monitoring more closely when you are out so an oximeter is a good thing to carry with you, that way your husband can monitor himself and rest and bring oxygen levels back up to 94+ before he continues walking on after his colour has returned to normal.

    I am not a medical profesional but I do feel it could cause your husband serious problems if he tries to continue walking around when he is turning blue + extreme shortness of breath. Neglected this could lead to emergency hospitalisation. Please seek professional medical advice on this mater and get some proper guidance on what to do in these circumstances.

    I don't know if your husband realises but if he pushes himself too hard when his oxygen levels are low he could cause himself serious damage, organ failure, heart attack. It would be awful if he was then forced into submission by his own will not to give in. Going blue is an indication the body is in difficulty supplying blood to the extremities, it is in effect a warning sign that shouldn't be ignored.

    If he continues to have difficulty over the weekend do phone NHS direct or if things become really bad don't hesitate to dial 999.

  • thanks zoeee am gonna read all the replies to him and maybe then he'll see it isnt just me being a nag.

  • Hi amagran, i'll send you a message and give you an update on dad and hopefully I can shed some light for you.

    IPF is totally different to Emphysema and other COPD illnesses and you should not increase the O2 without prior confirmation from his specialist etc. There are many different factors to consider including his smoking history if he has one. I have just learned so much more these past few days from dad being in hospital so I shall tell you all about it xxxxxxxx

  • It is good to share it leaves a legacy as the Olympics advert said, when people see what can be done it makes them want to do great things.

  • Using a pulse ox and measuring how fast your husband recovers to a safe level (generally set at 92 oxy sats) recovery within 2 mins was given as safe by my oxygen nurse who was not interested in breathing rates only the readings she had taken and logged for use in the future if my needs change. An early sign that sats are dropping is the finger nails going a purple colour, a little hint to take a pulse ox reading when stopped for a catch up break.

  • I have not heard of "adjusting flow to suit demand" before. My understanding is that you should stay within your prescription for safety as too much oxygen can interfere with respiratory drive, and CO2 levels can increase.

    The advice only to use oximeter to measure when you are at rest is sound. After 3 years of oxygen use, I do not refer to the oximeter at all now, as I know my sats within a percentage point. As it is only a guide, overuse of an oximeter can confuse and paint a contradictory picture, which is why many healthcare professionals are not too keen on patients having them.

  • I hope this link can explain smart dosing oxygen

    having been tested for ambulatory and long term oxygen there is no danger of interfering with the respiratory drive when following the advice of the respiratory nurse. I will be involved in the management of my health and if using an oximeter is something healthcare professionals are not keen on so be it, because it is my life we are talking about and I will live with the consequences of any mistakes. To be treat as a hypochondriac that should not know their own oxygen levels is as insulting as telling patients they do not know when to start anti biotic treatment.

  • Yes, this is one of the major factors - whether you are on SBOT or LTOT. On SBOT you should be wary of 'arbitary' O2 prescription changes. I should clarify my statement re: healthcare professionals attitude to patient owned oximeters. No one is suggesting that their reluctance is anything to do with 'hypochondria' but a genuine concern that the ownership of such a device can be counter productive in that untrained analysis can induce a lot of stress as evidenced by some of the questions asked on this forum.

    I must also stress that after 3 years of use and my own regular monitoring, I am now able to judge my condition and needs without resorting to the device, unless I suspect I am suffering (or about to suffer) an exacerbation.

    One exercise using an oximeter is quite illuminating. If you place it on your finger and attempt to exhale keeping your mouth and nose shut preventing any exhalation and push as hard as you can (obviously well within your safety limits) you will register zero pulse and zero O2%, which well illustrates what happens when you measure yourself whilst mobile and under respiratory stress, which is why people can get very low readings.

    It is however, a useful 'guide' to learn about yourself.

  • Hypocrisy when you have used an oximeter so much that you know precisely the readings you will find but can not recommend the use of these for others in the same situation.

    ps zero pulse is also called flat lining and it is not possible whilst you are still alive.

  • Please keep it civil. I am certainly not against use of oximeter. In other posts I suggest it's a 'must have' to assist in managing your own care. I merely point out that it can be a point of uncessary stress if over/wrongly used.

  • Keeping it civil I agree to disagree on oximeter use

  • Hergernt and Baron..................you should both be grateful you have enough oxygen and energy to type on here and argue your points believing you are both right. My dad is fighting for his life right now and you make me angry.

    Dad was watching his stats constantly when he got rushed to hosp and every beep that went off alarmed him and us and I know this caused him stress and panick. And probably didn't help at all. Today they took the monitor away and are trusting dad to know when he needs help. He is much more relaxed now. So I would just like to say, each to their own and if it works for you great and if not don't use it but I do agree with Baron that sometimes it can cause unneccessary worry.

    Save your oxygen for more worthwhile causes please xx

  • I am a firm advocate of an oximeter as I feel it is important to know when your sats are so low they are putting strain on your heart and organs. I had the same problem on a walk with oxygen in that I was getting hopelessly out of breath. So much I returned home and used my mobility scooter. To me a lot of the problem is the weight of the pack. It takes more oxygen to carry this extra weight. Counter productive I think.So took a trip to Argos and brought a shopping trolley. Much less taxing and of course anything else can go in the trolley. I don't turn mine above the prescribed 4ltres but do turn it down to 2ltres if sitting when out. I am also new to ambulatory oxygen but going blue is a sign to accept help. I myself will never be too proud to do that:-)

  • Titrated oxygen supply keeps more patients alive ems1.com/ems-products/aeds/...

  • Using a wheelchair isn't just a "man thing". I've been fighting against it for a while now and prefer to try to walk... until a friend pointed out that I'd be able to conserve my oxygen to do things I wanted to do, if I let someone else do the hard work to get to where we were going. It's an uphill struggle (no pun intended) for me to sit down and let someone shove me around, but I'm going to persevere!! I've discovered how helpful it can be. Please tell your man that it's not "giving in" or "giving up": it's being sensible!!

    Cheers!

    Catnip

  • I use a small mobility scooter that goes into five pieces and fits in the car. It really is a lifesaver and gives me more independence. Conserves oxygen and saves my wife having to push me. I brought mine second hand. You really do not have to have a new one.

  • Hi Amagran.

    I'm a 68 year old man with deteriorating COPD.

    I was too stubborn to follow my wife's suggestions to use a wheelchair (pride in there somewhere too, and fear of losing my independence) - & I was also afraid it would be too much for her.

    I found that over quite a short period of time I deteriorated to the extent that, one day, I couldn't walk round a garden centre, so I sat in their wheelchair. What a relief to admit that I couldn't do it any more - and it wasn't my fault.

    I am very lucky that we could afford from pension savings to buy a smallish (4mph, 10 mile range) electric scooter, (£850 from a mobility shop, £400 or so from the net) though I couldn't load it in the car and it was very heavy for my wife. Nevertheless it was a godsend.

    I have a Motability car (God bless Motability) and, if I had known when I got it in October that I would need it I could have had a hoist fitted at a heavily subsidised price. Again we could luckily afford the £1250 to modify the scoooter, buy & fit the hoist, but it was a fairly major decision.

    I can barely walk without oxygen though with my Helios Marathon portable I can get around slowly, but I'm fine driving the car or the scooter. Getting the scooter out of the car & back in needs to be taken slowly over about 4 minutes, with about 5 to recover, but I have my freedom again to go out on my own, to travel "on foot", to climb steep streets, to go out with my wife, to shop in a minor way, to go to an association which meets in the evenings.

    Compared to that the loss of pride was surely worth it - definitely false pride.

    Maybe yer man might feel the same way if he reads this.

    You both have my very best wishes.

    Frank

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