Up date on bad day

Yesterday I stayed in bed all day this morning go to bathroom sats drop to 59. Very concerned took blood pressure 160 over 70 sputum nasty green and getting no respite from pain under breast even with the oramorph coedine and pain killers add to that lack of appettite and stomach pain .So Husband phoned matron who said don't worry about sats and bp not to take abs until results back should be tommorow how can I not worry anyway I came downstairs 4pm sats low 60 s. Husband Telephoned BlF for advice nurse on holiday how am I going to get through this I just don't know how I am trying so hard but banging my head against a brick wall I don't want to spend my life lying in bed or sitting on chair

52 Replies

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  • Give it time. Rest and let them work on getting rid of the infection.and they need to sort out your oxygen saturation. Try not to worry so much because the more upset you get the worse your breathing will be. Take care. :)

  • It all feels to much at the moment trying to keep pain under control cope with body temp sats and appettite seems such a mountain to climb 😷

  • So why climb it? Sit back and let others do what is needed right now. Watch DVDs, listen to music, read a book, sit in the sun but don't do anything more while you are so unwell. Conserve your energy.

  • I am just sitting back but not coping well with the pain and other symptoms 😷

  • Perhaps if you were more relaxed the pain would lessen? I know any pain I have is always worse when I am uptight and worrying. I hope things improve for you soon. :)

  • Try to relax, The more you think about it and worry, the worse your breathing and pain will seem with your anxieties over the problem,

  • Try to apply your breathing techniques. Deep, in and fill from abdomen up. Take 3 times longer to empty lungs

    Keep to this and slow down the breathing gradually.

    Resultant relaxation will ease pain.

  • Please get as much rest as possible, if you are really worried please phone the bus help line. Let's us know how you are getting on. Take care Bernadette😊 xxx

  • Hi Bernadette my husband did phone the helpline but nurse on holiday it is all becoming to much xxx

  • Hi T2, sorry to hear things continue to be so difficult for you at the moment. Do you mind me asking you how long you've had problems with your lungs ? Reading your posts over the last few months, I think that all this just started after a bad pneumonia but maybe I'm misunderstanding. What is your diagnosis ? Do you have COPD ?

    I also find it hard to understand why none of your medical team seem to listen to you and seem to ignore your very low 02 sats and the ongoing pain under your breast. Have they suggested increasing your 02 or changing any of your meds ? That matron of yours sounds unhelpful, to say the least. At this stage, I can understand why you feel at the end of your tether and wonder if there is someone who could speak to your doctor on your behalf ? Obviously, you have to play your part in trying to be as positive as you can and trying to keep your stress levels down. Mrs M gave you some very good advice about doing things that you can still enjoy, like watching DVDs, listening to music or sitting outside now that the weather's improved. I do hope things improve for you soon.

  • Thank you Billiejean for your kind reply I was diagnosed copD about 6 years ago few infections but nothing major till 2016 when I got hospitalised in November then again in December and ended up on oxygen major shock another hospital stay in February .I also find it hard to understand how they can ignore my sats because of this my husband is now not to concerned about how low they go taking lead from medics .I asked Gp last week about something diffrent for my pain she just said was I expecting to be rid of pain I said if it was just dulled I would maybe able to cope better on top of this I have to cope with debilitating sweats and cold chills and feeling so weak cannot even dress myself and completley lost appetite whilst replying to your post have had fan on off on off have not moved from chair and sats are 81 I was supposed to be on 16 hours oxygen but last month or so have had to stay on it for 24/7!which has stressed me sorry to ramble 😷

  • Don't worry about rambling T2, I do a great deal of rambling myself :) I understand how hopeless you must be feeling and how overwhelmed you are by all the different aspects of your condition.

    Sometimes, keeping a written record of everything can help you to see a situation more clearly. For example, what times of day are your symptoms worse and what times do you feel better able to cope ? After you take your pain meds and inhalers, would probably be the best time to try and move around a little. Don't try when you're really exhausted because it will just make things worse. By moving around I mean, just the basics - going to the bathroom, going from one room to another etc. I can't remember if your ambulatory oxygen was sorted out or not but it would do you so much good if you could get out of the house occasionally. Even if it's just for a drive in the car, a change of scene would motivate you to want to get out and about again. You're having a very hard time and you should be very good to yourself and have any treats you can think of. Things can get better T2 so don't give up hope. Try and get support from any family member or friend available as well as physio, occupational therapy and counselling. I will be thinking of you and wishing you well.

  • Hi T2D. I'm sorry that you are having such a hard time. Reading your symptoms I am going to ask you a very daft question. Have you taken your temperature?

  • Not a daft question but husband does not know where he put thermometer 😷

  • t2d, I really feel for you. I cannot believe you have been left like this. Your symptoms are concerning, and SATs sound very low considering you say you're on 24hr O2, so I can understand why you're anxious. I'm actually quite angry on your behalf I have to say. You sound like you've been fobbed off too many times and you're having to accept less than sufficient care.

    With SATs that low, pain, insomnia, appetite loss I would be looking at seeing a respiratory nurse at the very least ASAP. You say Matron, is that a specialist respiratory nurse? I also feel concerned that your pain hasn't been addressed properly either. Do you have an ARAS team at your local hospital (Acute Respiratory. Assessment Service)? They would be able to see you and determine whether you need an admission to hospital or they could offer the support you need at home.

    You and your husband need to feel supported and it appears you're not. Please speak out, call 999 if you have to. Just don't suffer in silence.

  • Well said cosy kitty, I agree with you 100%.

  • Hi not sure about ARAS it does feel like left floundering The matron is a community matron I see her once a week I mentioned respiratory nurse to her once she said that's what she's for I do feel has though I am being left to well I won't say the word thank you for your kind response x

  • Goodness me t2d, where in the country are you? I cannot begin to understand why you're being left to fight this pretty much on your own. I am devastated to hear you feel so abandoned. Please please insist on some intervention. If you were my family member I would be screaming till someone listened.

    How dare they make you feel as though they're leaving you to succumb to this illness alone. Sadly, you will have to be very proactive if you want to get to the bottom of what's going on. Frankly, I would go to A&E or call an ambulance if this continues. At least then you can be assessed and treated accordingly. Even just for peace of mind. It's the Easter weekend and you cannot surely be left like this!

    As a family we were always told to just ring 999 if we had any concerns whatsoever over my Mum. The paramedics will come out and look at you and determine whether you're in need of hospital treatment. You're not time wasting, you're not a nuisance.

    This matron you speak of should surely be available to make a judgement based on the symptoms you are currently displaying. She should be able to identify whether you're vulnerable, and act appropriately. If that's not the case, then I would go over her head.

    Sorry if my post sounds a bit overbearing but I hate to think of anyone feeling isolated and helpless, especially with this disease. I know first hand how frightening and disabling it can be as I went through this with my beloved mother, and would rather err on the side of caution than risk leaving things to deteriorate.

    Will be thinking of you x

  • Thank you still waiting for results of sputum the matron said we should have them today it is like being in limbo best wishes

  • Let's hope they pull their fingers out, determine exactly what the bacteria is, and get on a treat you properly t2d. Infection is one thing, but your worsening overall symptoms should be a priority too.

    My best, always x

  • did the medics put you on 24/7 oxy

  • No I did it myself because sats that low I am typing this reply now on oxygen sats 79

  • oh, do be careful. Too much oxy can be just as bad as not enough and can cause negative results. what is your actual pescription for oxy.

  • 16 hours but I am dropping down to 59 sometimes moving about on Oxy so I am between a rock and a hard place

  • I assume like my Mum they told you a minimum of 16hrs t2d, is that right? So being on 24/7 is not necessarily a problem. My Mum was only on 1L at home as any more would cause her to retain co2.

    It sounds like you're not getting enough if your saturation is still very low. Again, this should be something that a respiratory team are involved in. You mustn't just adjust things yourself as it may be harmful.

  • Hi Iam also 1litre at rest 2 ambultory I had chronic respiratory failure in December and was on bipap for a while

  • Ok t2d, that's interesting as you're obviously recording low readings still. I assume on a finger pulse oximeter?

    Like you, we would keep tabs on Mum's Sats in the same way, and would flag up if Mum's Sats dropped too far. As you know target Sats are 88-92% in COPD, so being well below is concerning.

    I know Finger oximeters aren't always the most accurate and medics tell us not to rely on them, but if your reading's are significantly out of range that would obviously concern you, and result in more anxiety, which in turn doesn't help your breathing.

    It's easy for docs and nurses to say don't worry, and don't keep checking, but you're the one living with this and it's not easy.

    Only an ABS (arterial blood gas) check would be accurate, and you're only likely to have that in hospital.

    I reiterate, a dedicated respiratory team should be supporting you and clarifying all of this for you. It's wholly unfair that you are in the dark.

  • *ABG

  • I had my oxi meter collaborated with matron and oxygen nurse it eas spot on .I find it so annoying when told not To keep checking them I have just been to bathroom and dropped to 69 and yet they seem unconcerned when they come my sats are usually not so bad but they then drop I had the AbG done in hospital meanwhile until I get sputum results could be sitting on infection and I get to scared to go downstairs have to force myself take care

  • I totally agree with you Maggie. My husband was first diagnosed as having emphysema in 2003 and has had a terrible winter with his COPD. When he could barely climb the stairs one Sunday I told him I was going to ring for an ambulance to come with oxygen but he said he would rather me speak to the specialist nurse. I suggested it would be better if he spoke to her himself then she might be able to gauge his condition.

    She arrived at our house within 30 mins armed with a nebuliser and an assortment of meds. She said we were right to contact her as the nebuliser is often better than oxygen which can sometimes do more harm.

    So please T2D check this out with your own care people to be sure you are getting the right treatment.

    I wish you well and hope you soon start to pick up. My husband is a different man since that Sunday and is now over half way through a course of pulmonary rehabilitation exercise sessions which he attends twice a week and has booked us on a holiday to Greece in May...

  • So pleased your husband is well enjoy your holiday in May I'm waiting for ambulance doctor phoned for one about 2 hours ago take c are

  • Bless you darling, thank you. I just hope he really is as good as he thinks. I'm rather nervous about this holiday, but a very good friend is coming with us so will at least I will have some moral support and won't worry as much.

    I am so sorry you are suffering like this and I do hope you can get some relief soon xxxx

  • ThanksStill waitingfor ambulance I feel like just going to bed. Never mind hopefully I'll be sorted have a ball on this holidayall of you xxx

  • Time to drink... I am normally a very positive person but that only goes so far. From experience I have learned not to push things when I have a chest infection. I think the advice from Mrs Mummy and others is very good because that is what I would be doing. Resting, Relaxing and Sleeping. It's the only way your body is going to recover. I hope you feel better soon.

  • I am resting can't do anything else unfortunatly sleep would be so welcome. That is something else I am dealing with insomnia 😷

  • Just relaxe and just lissen the more you work your self up and saying this and that you will never control your breathing when i find it hard to breath i first take 2 puffs or 3puffs of blue pump and then i take 2 off the fostrat and sit and count but leave every other number out so 124578and so on and back the same it do work try it good luck

  • Thank you David don't have for tar ventolin spiriva and sere tide

  • Hi time 2 drink......I hope you managed some sleep, I know it's difficult when you are feeling so poorly.

    I can only echo what the others have written, I was only wondering if your temperature has been taken or could you do it yourself.

    If you don't hear about your sputum results, I would ring and ask what's happening especially as it's the Easter weekend .

    David's idea about counting is good, I do that myself and I find it helps...I try backwards counting sometimes, or 1 to 10 and then repeat.

    I hope things get sorted today, and if not I would ring 111 , or 999 if you need to.

    As cosykitty says you should not be suffering like this.

  • Afternoon need to get thermometer can't find one we have will try David's idea hopefully will have results today I cannot go n like this I am having a nightmare 😷

  • I couldn't read and not post, although I have no words of wisdom, I just wanted to say that I hope you got some sleep. I often find sleep just makes me think clearer even in the worst of times. Thinking of you. Take care.

  • Sleep is very hard would really like to sleep until something was resolved in pain sweats and sats but find difficult to sleep Best wishes

  • Decent restorative sleep is one of the hardest things to achieve with COPD. It's a complex thing as Respiratory patients cannot have too much of any meds with a sedative effect as it can cause more complications.

    It is truly awful to struggle with sleep. Finding a balance of meds for sleep and pain that don't cause heavy sedation, whereby you can rest enough and not be too groggy is a fine balancing act. One that few doctors seem to be able to get right.

    My poor Mum suffered terribly, and it was heartbreaking to watch. She just wanted to rest. She was either wide awake or so groggy from being over medicated. A lot more time, money and research needs to be dedicated to this area of medicine.

    I wanted my Mum to have a sleep study done to determine exactly what was happening at night, but sadly it never happened.

  • I agree totally with everything you are saying it is heartbreaking and I can only despair for my future best wishes

  • do you have ambulatory oxygen?

  • Yes and home 😷

  • Lets lock Matron in an air tight room and stabilise her sats at around 60 or less and see how much she screams. You have good reason to worry with sats that low. The damage being done to your organs is lots. And all your major organs are screaming for air. That Matron should be sacked. Get off to A&E now and let them help you. A BP of 160 is something to worry about too. Idiot Matron.

  • I agree with you totally I think they just want to,finish me off I am like I said before bashing my head against a brick wall Best wishes

  • You really should ask your husband to get yourself off to hospital. And complain about 'Matron'. Your sats are at a dangerously low level and are a cause for serious concern. Please let us know how you got on but do not sit there with sats that low. They should be at least above 88. Anything from 86 and below and not rising is hospital time. Maybe caused by an infection, exacerbation, which the hospital will be able to sort out for you.

  • I gave a sputum sample last week was first told it was lost when matron phoned for results doctor came out last Friday gave me some abs but told me not to take unless absolutely necessary on Monday the matron came and took another sample my husband phoned her yesterday and she said she should have the results today and would phone us when they are through so still in limbo 😷

  • marionware-hypnotherapy.co.... this may help you understand about blood pressure

  • Use Mentholatum, aka Vicks VapoRub..., and

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  • For some reason I cannot read any of the 50 replies it says you have had, but I am sure you have already been told by now by someone, that SATS of 59 IS something to worry about. Call 111 at least and get a doctor out to see you. If not call an ambulance

    I do hope you get the medical help you need

    Love Sohara

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