I’m in need of some advice and in all honesty mass amounts of reassurance.
A quick brief rundown, my sister was diagnosed with Acute myeloid leukaemia (AML) just over three weeks ago. She had 10 days of chemotherapy which finished two days ago and on her last day Of chemo, her temperature spiked to 40.1 and discovered she had an infection from her pick line.
She has since been on the highest doses of antibiotics. Her oxygen levels dropped very low so she’s been on the highest oxygen as she was complaining about wheeziness and her stats for showing her oxygen was very low. She had an x-ray and they can see it may be a mild chest infection, but they’re going in for a CT scan to be 100% sure what’s going on, If I’m honest, it’s Scared the life out of everyone as we are waiting for the CT scan today.
Is this normal? This seems so extreme for her to be so unwell. I’m so concerned It’s going to turn to sepsis. I know her immune system is compromised but they’ve had to mention they have informed ICU team of her if incase.
Oh, @sophie0103 your scaredness and petrifiedness really comes from your post.
I hope others will be able to share their experiences for you.
Perhaps get your sister to ask the fears, questions and practicalities of her medical team that you have on your mind and probably hers too.
From what you say she is in the right place and getting cared for.
Unfortunately with compromised immune systems we are very prone to infections.
Perhaps just be there to support your sister and give her a listening ear.
It is so difficult being a family member, you are so powerless and you just want your loved one to be alright,
The Blood Cancer UK support line is also there for you on 0808 2080 888
You are all stars and often nobody asks how you are. We do on our forum
Really look after and be ever so kind to yourself and please do keep posting how you are doing as well
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Thank you for reaching out on the forum. I am sorry to read what you are all going through at the moment.
At this point post treatment your sister will be at her most vulnerable to infection and most people going through this will have some sort of infection at this time. I am sorry your sister has become really poorly. The CT will give a better look at what is going on in her lungs and help to match the correct treatment, this is quite common practice in this situation. Referral to the ITU is the right decision in any worsening infection as the team can come to the ward and assess your sister and make any recommendations. If your sister needs a higher level of care they may well move her to ITU to have one to one care, this is the best place to be when really unwell.
Sadly I can’t take away the scariness of this situation but what I will say is she is absolutely in the right place. Sepsis is really common in patients after intense chemotherapy as the immune system just isn’t there to do the job. We use the best antibiotics and medicines to play the part in the absence of the immune system. These situations are often very much hour by hour and the team will be very closely monitoring her for any changes at this time so do keep talking to them and asking questions.
We would be very happy to answer any questions you might have, you can reply on here or you can call us on 0808 2080 888. We are closed today but will be open again tomorrow from 10am.
Do keep us updated on how she is doing and remember to look after yourself also.
Like the others have been saying yes, unfortunately we are at higher risk of infection especially just after treatment. In my personal experience, I have found that I’m more likely to pick up infectious and for them to hit me alot harder/different to before chemo. I hope the CT scan clears things up for your sister and that her recovery is as smooth as possible. I would suggest when your sister feels under the weather for more than 3 days contact your GP and get seen as the sooner infections are caught the easier the treatment. That’s been my experience. And don’t think that seeing the Dr is a waste of an appointment and don’t be put of by them. Always remind them that your has had chemo and they will understand why it’s necessary for tests early.
Good luck to your sister and please keep yourself well and we’re here if you need anything. Your not alone