A few days ago I came home from hospital after being an inpatient with high temperature and lower respiratory tract infection.
I have ET and take hydroxycarbamide daily.
My oxygen levels went down to 88, but came back up with initially high oxygen supplement. I was allowed home once my level stayed at 92+ without oxygen.
Now I am home I am struggling to maintain levels above 92/3, though it does vary through the day, but also my temperature has been low, from 35.8 to max of 36.8 at one point. Currently it is 36.1.
On my information sheet (from Macmillan I believe) it says to contact health provider if temperature is above 38 or below 36.
Can anyone explain this lower threshold of 36???
I do not want to go back into hospital, but I don’t want to be stupid about my health.
I would welcome advice!
Hi @MaryT I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses just in case they can tell you anything.
But personally, if in doubt and you are worried contact your hospital ward (as it’s the weekend) and please let us know how you get on.
Look after yourself
I have sent you a message.
Please contact your GP or Haematology team to organise an urgent review. Let them know your temperature readings and O2 levels and any other new symptoms.
Yes, low temperature also indicates infection, and your oxygen levels should be improving too.
Do you have a chemo helpline/24 hour helpline? You could ring them too.
Let us know how you get on.
Good Morning @MaryT,
I can see my colleague Heidi replied to you last night but i was wondering how you are feeling this morning? Have you been able to get in touch with your team at all to let them know your oxygen and temperature readings?
Please do know that should you need to call us at any point our phoneline is open 7 days a week- Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
Hi Laura and Heidi
Thanks so much for responding to my query.
When I woke this am my temperature was 36.4 and my sats got up to 93/94.
My temp is now 36.8, my oxygen is 94. So, I haven’t yet contacted the team. Initially I thought I’d wait till the ward wasn’t as busy as first thing, but now my temp is even better I am hesitating again! Esp as the Dr said I could be discharged from the hospital once my sats reached 92+ without oxygen.
So I’m kind of watching and waiting with fingers crossed!
Hi @MaryT I find that my blood test results do fluctuate.
Therefore It might be worth checking what fluctuations it is reasonable to expect, before it is considered a trend. I don’t know the answer
Perhaps what you need is just peace of mind, instead of your emotions fluctuating with your results.
Take care of yourself
When I was in hospital so many women were much iller than me, and I don’t want to panic when maybe everything is just settling down. I am an anxious person, and they know that, so I don’t want to call for help if I don’t really need it.
Also my consultant seems to think ET and the chemo tablets are really minor issues, so I get quite confused as to how I should react to symptoms. It was only cos the Macmillan fact sheet said go to a and E if temp is over 38, that I went to hospital in 1st place. I was really surprised to be admitted!
I am pleased to read that O2 levels and temperature were improving yesterday, how have you been today? I hope you have turned a corner and are feeling better.
Please don’t ever feel you are bothering doctors or nurses (it’s their job!), they would feel terrible knowing you are at home feeling very poorly but worried to call for fear of troubling them. A quick call just to get checked out or a verbal reassurance that your numbers are okay is always the best thing to do, than not call and become more unwell.
When you have a blood cancer it is always better to ‘nip it in the bud’ and potentially start treatment early for infections, if they are brewing - staff would always rather you call them.
As @Erica has mentioned, it might be good to have more direct instructions from your team, specifically to you and your health, worth discussing at your next appointment.
Best wishes, Heidi.
Hi Heidi, Lauran and Erica
A happy update:
I got a Dr’s appt this afternoon as last night and this am my oxygen was down to 91/2.
She did a thorough exam and said my chest was now clear, temp and BP fine and she believes poor oxygen levels (at that point they had climbed to 94) are down to my asthma. So I am now on oral steroids with asthma meds increased. Whole situation to be reviewed at an appt in 2 weeks time.
She also confirmed I should contact surgery (or go to A and E if out of hours) if temp below 36 or above 38.
Thank you all for all your kind support!
I can tell @MaryT that you are feeling happier, doesn’t it help seeing your doctor face to face and feeling listened to and thoroughly examined and given a way forward.
Really good news, look after yourself
Thank you very much!
I hope you are well and fully recovered. So glad you managed to see and speak to your GP. Sounds like she was very thorough and gave great advice.
Do take care. Best wishes, Heidi.