My Dad is really bad at the moment he is breathing so hard even at rest ,and coughing so much .He has been on antibiotics and steroids

for 2 weeks but they dont seem to be helping .He has been on oxygen for 4 days now set at 2 ,having half hour about 6-8 times a day .He can only manage to get to the bathroom once a day .He is also on some sort of valium half 3 times a day.,Just wondered if anyone else has seen people that are really struggling to breath but oxygen levels are not really bad ?my dad has always had really good oxygen levels .They are slightly lower now .It has always been about 97 ever since he was diagnosed 4 years ago.It is now 93/94 at rest with the oxygen its 97.He got up to use the toilet yesterday and i checked it when he got back as he really struggled and it went right down to 88 but as he relaxed back in bed it went back to 94.His copd nurse has always said to my dad that she doubts he will ever need oxygen as it is normally so good.Obviously he is on it now and helping slightly .Just wondered in someone so bad as my dad have you seen them not need oxygen alot ?He has had an xray 3 weeks ago and his lungs shown no signs of infection but he is spitting up yellow/green coloured stuff,thats why hes on the ab's.The doctor said he doubts he will be able to go out again now.Also he wouldnt do a sprirometry test again as my dad couldnt manage it now .His copd nurse has just retired and they are waiting to get another one!could me and my mum get any support from anyone else to try and help him get up again etc? sorry for such a long post from Sam

11 Replies

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  • Hi Sam

    Not sure if you are the same Sam I previously answered on the other BLF board so please forgive if I repeat myself.

    The situation needs improving for your Dad, try and access the Community Matron for COPD through your GP or through NHS Direct.

    Is your Dad removing his oxygen when he goes to the toilet? I believe he should be keeping it on if his sats are dropping to 88.

    It's good he's on the anti biotics as his sputum color is that of someone with a lung infection. Do keep on top of that if it does not clear by the end of the course of ab and steroids.

    Many people with COPD do have difficulty breathing on exertion even with good blood oxygen levels.

    Its very difficult for your Dad if his blood oxygen levels are dropping every time he is active as this is going to affect the amount of activity he is able to do to try and improve his breathelessness tolerance levels. Its sort of a catch 22. You need proper help and guidance on this so that you and your Dad know what is safe for him with regard to his blood sats and activity.

    Please do phone the BLF helpline on Monday Sam for further advice and support.

    I hope you can get an improvement quality of care specifically for your Dad's needs at this time. Remember to access the Community Matron also the OT team through your GP.

    Please keep in touch. Let us know how things are going.

    Take good care

    Tru

  • Thanks so much ,yes it is the same Sam.He removes the oxygen when he goes to toilet and has a bath but ive told him thats the most important time to have it ,so he said he will from now on .My mum will make sure he does now. He got up earlier today to have a bath i told my mum to check his oxygen then as thats when he finds it difficult.She rang me and said it took a long time to get a rwading but when it did it was 58% ? he found it hard to get back out the bath as he had a terrible pain in his groin?(lack of oxygen i thought) it quickly went back up but only to 86% then he had his oxygen in bed which took him back up to 97%.Ive never heard of anyones dipping to 58% before! He has been on antibiotics and steroids (6 a day)for 2 weeks now .He has such a chesty hacking cough which leaves him breathless .Im ringing the doctor tmw .Do you think he will be prescribed more? Im going to ring the copd nurses office tmw they will have to find someone else to send round .Ill also speak to doctor about an OT.I feel like they dropped the oxygen off, said have upto 8 times a day and thats it ! Im so worried about him ,i hate seeing him like this :(

  • Sam if the battery on the pulse oximeter is low it may be giving false readings. It would be good if you check any oximeter you have against the respiratory nurses for accuracy.

    Please do call NHS Direct if you are unsure about your Dad's wellbeing and treatment. They can advise you based on your Dad's symptoms, there is also a symptom checker on their site. You can call them 24/7 365 days a year for advice. You may want to take a look around their site and make a note of their telephone number:

    nhsdirect.nhs.uk/

    Hope things become easier for your Dad real soon.

  • Thankyou .The batterys have only been in 2 days but ill change them anyway .Im going to have a look on the nhs site now .Sometimes i find it hard to know if he needs more meds ,pain relief etc .He has a very high pain thresh hold wont complain about anything ,thats why i worry so much about him.Im hoping the doctor will tell us when its time for pallative care .I suppose i thought 2 loads of abs and steroids and he would be slightly better by now .

  • Hope you get some real answers from the professionals Sam. Sometimes lung infections can take a while to clear, it is important to catch them early, the sooner they are treated, the better. Identify infection, by discolouration in phlegm, worsening of symptoms, etc.

    Keep in touch.

    Wishing you a good week achieving positive outcomes for all your efforts.

    Tru

  • Hi Sam29

    Don`t know if you have got any answers yet but if I were you I would ring 999 because I think your dads problem needs further investigation.

    keep in touch

    Regards Linda

  • Hi just letting you Know the doctor came round and said his chest is still really bad . He has put him on different antibiotics than he has been on the past two weeks , he has to take them for a month . He's also referring him to an occupational therapist to come to his home . His oxygen levels were really good today 95% resting . He still has no energy though . We have a nurse phoning in the morning as well . He was abit down today , can't blame him :(

  • A copd nurse is going round to my dad this afternoon to see how he is ,which is good .I cant get over to him today as ive just done a 14 hour night shift ,is there any questions or anything i should make sure my mum asks the nurse whilst she is there or anything we should get her to do ?

  • Hi Sam, I am very sorry to hear your dad is so unwell at the moment.

    This must be really hard for you and your mum.

    You asked 'could me and my mum get any support from anyone else to try and help him get up again etc? '

    In these situations, both the person experiencing ill health and their friends and family may be eligible for more help. The government recognise any friend, family or relative providing unpaid support to someone living with a long term health condition as a 'carer'. 'Carers' are entitled to practical and financial help and support too.

    Ask the OT if they can arrange a Needs Assessment of both your dad and either you or your mum. They may assess your dad as needing extra home-help, or they may assess you or your mum as needing help to help your dad. You can also discuss with them as a family how you can mak best use of the support allocated to your dad.

    Carers UK and Carers Direct websites and helplines are really useful. They can clearly explain how you can get more help for your dad. I have called both Carers Direct a few times and they are really friendly.

    Carers UK

    carersuk.org/help-and-advic...

    0808 808 7777

    Carers Direct

    nhs.uk/CarersDirect

    0808 802 0202

  • Thanks very much Katy i will have a look on there .

  • keep looking to the medical team because they may make a break through and help . but it is really hard to see someone in that much pain. things can only get better :)

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