Vigilance – temperature and feeling unwell

This topic contains 21 replies, has 12 voices, and was last updated by  andyg 8 years, 3 months ago.

Viewing 15 posts - 1 through 15 (of 22 total)
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  • #123848

    andyg
    Participant

    Hi all.

    Just a cautionary tale. I know some of us keep banging on about the importance of monitoring your temperature all the time especially if feeling a little more unwell than normal. I was always told over 37.4 for a couple of hours ring in ASAP. I know some are reluctant to do this because it’s a hassle or they don’t want to go to the hospital/ doctors etc.

    Anyway last week I was feeling a little “off” and checked my temperature 37.2 so I thought I was going down with something I monitored my temperature and it went up to 37.8 Thursday night so I rang in and was admitted to hospital straight away. Good job really as I had pneumonia, and still have, pneumonia. MMers worst nightmare. I’m now told I’m through the worst and on the rocky road to recovery for which I’m thankful.

    I just wish I’d gone with my instincts earlier  and got checked out before it got a hold of me.

    Crucialy it has stopped our usual September trip to Greece so no sun or Mythos to revive me after our damp summer. Still there’s always next year as long as I stay vigilant.

    Every day is a gift.

    Andy xxx

    #123850

    dusk
    Participant

    Andy, sorry to hear you have what we with MM fear. I had it last year and I had a long hospital stay, thank to medical ‘failures’.

    Did you have the pneumonia vaccine?

    At my treating hospital we are told to report / go to A&E if temperature rises above 38. So it seems one needs to monitor at frequent intervals if suddenly feeling unwell / feverish. Now the colder weather is approaching we are more at risk of chest infections. Knowing ones normal body temperature range is useful. So we do need to take responsibility to ensure we get timely treatment.

    Every good wish for your speedy recovery.

    Dusk

     

     

     

     

    #123869

    Dizzyliz
    Participant

    Morning Andy,

    Sorry to hear you’ve been unwell and hospitalised, as for keeping vigilant on temperatures I was doing the same thing last Thursday with kev prior to his clinic appt: that afternoon he suddenly felt unwell with temp: rising by the min, we got to clinic and was seen straight away! And kev was admitted with infection in his pic line, kev is prone to saying lets just wait and see how temp: is in an hour but I now insist I’m taking that decision,I ring asap 38! No arguments, catching any infections early is the important thing, kev has recovered well but still in hospital, i will update on treatment under DTPACE.
    Andy I hope you continue to recover quickly! And has you say everyday is a gift!

    Take care Liz & kev xx

    #123965

    janw
    Participant

    Hi Andy

    It’s good news to hear you are on the recovery after your pneumonia, which appears to take hold of us myeloma patients so quickly, especially when our immune systems are weak during treatment and sometimes after treatment. The UK weather in September is supposed to improve towards the end of this week. Hopefully you will be able to sit in the garden, relax and plan your holiday for next year.

    Jan

    #123982

    HelenR
    Participant

    Hi Andy,

    Thanks so much for taking the time to share this, it’s so important. I hope you get out very soon. Pneumonia and unexpected hospital stays can be miserable, and missing a holiday is just gutting. I am crossing my fingers that somehow you are able to do something else instead this year – Canary Islands?? Or a nice UK weekend away to make up for it.

    You’ve made me sit up a bit – I had pneumonia right after I was first diagnosed, and as it was so extreme I ended up in intensive care for one night (and it delayed my leg op which delayed starting treatment so it was all quite hairy as the myeloma was really eating me up at the time). I remember it being so extreme, and with a specific crackly noise in my chest, that I tend to think ‘Oh this definitely isn’t pneumonia’ if I feel a bit rubbish with a 37.5/ 38 temp, but you’re making me realise it’s much better to err on the side of caution.

    Just to share an example of how NOT to be, I started CRD 10 days again, felt rubbish for 4 days, finally felt better on the Sunday…. but then shivery etc going to bed, really really tired, and found I had a 37.8 and 38 temp. Somehow I got confused and just followed the advice I had last time in remission, so I took paracetemol, kept checking temp, it didn’t go over 38 and dropped after a couple of hours. I had a slightly dodgy cramping stomach the next couple of days but not proper diarrhoea. Temp tayed down for 6 hours, came up. Took parceteoml. Finally phoned the on call haemoatology (this was bank holiday monday) and they told me not to take the paracetemol as it masks the temp, but to wait for it to wear off and go to A&E if it got to 38 again… and then she said ‘technically 38.5’ which confused me. I now realise she should have just told me to go in anyway. Long story short, it was fine all day but 38 again at 10pm, but I couldn’t face going in so I went the next day, they gave me IV antibiotics, did lots of tests, no probs, and the temp was also fine the whole time I was there. They discharged me to get oral antibiotics and then come back if it was 38.5, probably a virus. By the time I’d got the drugs and was waiting for a taxi I suddenly felt all hot and crap, and temp was 38.1. So I just walked straight back round and ended up staying not just Tuesday night but all the way till Friday 6pm. Bit crap as I was stuck out on a side room on another ward, and my main team really busy so I spent the whole time thinking I was just about to go home, only to have someone very junior eventually turn up and tell me i was staying another night, and another night. Still, much better to err on the side of caution, I realise. My neutrophils dropped and a couple of slightly weird blood tests so they just wanted to keep an eye on me. But I’m back on the chemo again as of today, for Week 2.

    Things I’ve learnt (might be useful for people in similar situations to me – I live by myself and, er, other than the myeloma am generally in good health so always feels a bit weird going to A&E as they tell me how well I look!)

    – don’t question it, don’t think about it too much or ignore it, go straight to A&E and do not pass go. On chemo you don’t have to wait, they take you in immediately so it’s really no major thing (and Uber is very effective for me in this situation, much as I hate the company)
    – have a bag already packed for hospital with clothes, snacks, phone charger, books, overnight stuff etc, so that I don’t put it off because I feel too tired to get organised and just hope it’ll go away! My temp always seems to rise at night and I always think it’d be better for me to stay in my own bed, but at the end of the day these things can get serious quickly so you just have to be sensible and go
    – I’ve set up a Whatsapp group with a few of my nearby/supportive/flexible friends, so that I can just send one message and someone will be free to come and hang out. This time I didn’t think I needed visitors because I thought I was about to leave the whole time… But I’ve realised you just never know, and company is always nice.

    Bit of a long message…. good old Dex day today… hope it’s useful for someone out there!

    Helen

    #124007

    cygnet
    Participant

    Hi Andy

    Thank you for posting this. Please get well soon!

    Love & hugs,

    Cxx

    #124158

    dickb
    Participant

    Hi Andy,

    everything OK? Not heard anymore for 6 days.

    #124163

    Philipandfiona
    Participant

    Hi
    I think he’s in intensive care, but slowly improving. He’s on Facebook and a member of hte UK myeloma FB suport group, so some information there if you search for him.

    lost of people have posted lovely support to him and his partner.

    #124173

    cygnet
    Participant

    Hi

    Thank you for this info – I’m not on Facebook but have been concerned about his silence.

    Andy –  please get well soon; I’m sure I’m not the only person missing your welcome input on here!

    Sending love & hugs,

    C x

    #124174

    susie
    Participant

    Dear Andy.

    Do get well soon. You have been such a help and support to a lot of us. You deserve the best.

    Lots of Love

    susie

    #124175

    annlynn
    Participant

    get well soon andy we need your positivity on this forum best wishes to you and steph Ann xx

    #124182

    Philipandfiona
    Participant

    i’ve been stalking facebook for posts on him – i believe he’s improving.

    #124185

    Dizzyliz
    Participant

    Wonder how many of us are doing the exact same thing? Made me chuckle! I’m on Twitter don’t do FB and found Andy on there! Tom too! The news is the same so fingers crossed Andy you’re feeling better real soon!

    Love Liz & kev xxxx☺️

    #124543

    andyg
    Participant

    Just a little update I ended up in intensive care as I wasn’t over it and they had to sedate me and put me on a ventilator. It was touch and go for a while but hopefully I am really over it now I just have to learn how to walk again.

    Every day is a great gift.

    Andy x

    #124545

    jane-wrench
    Participant

    Welcome back Andy – thank goodness you are ok – we’ve all been worried about you xx

    jane xx

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