Post SCT question

[SRH55]

I am day +35. I came home from hospital after 4 weeks, then back in again a week ago with a temperature of 38. My infection markers are normal, I’ve been on various antibiotics & had blood cultures taken for viral & bacterial infections, nothing’s been found. They are talking about sending me home, but my temperature is 38.2 this morning, it goes down with paracetamol. I don’t feel happy do go home as I think I will just end up coming back.

Have any of you been sent home with a temperature that high, to see what happens?

Shirley

[Scaredy_cat]

I'm about 220 days post transplant. I was still in isolation at the same point as you. When I was discharged I did have a few times when I had a raised temperature past 38C and went back to hospital as an out patient where they did multiple checks to find infection, eg lung xray, urine sample, blood etc. All without success. I had my picc line removed at some point just in case that was the cause but I can't remember when that was. The usual outcome was a short course of strong antibiotics to take away. I think a lot depends on your neutrophil levels. When mine was very low in June, I went into hospital overnight for IV antibiotics. Then discharged with pills plus I was given an injection into my belly to boost my neutrophils. I had to repeat this myself a few times over the following weeks. So I think they'll be guided, partly, by your neutrophils count

[SRH55 in reply to Scaredy_cat]

Thank you for your reply, they don’t know what’s causing my infection, which makes it worse I think.

[Scaredy_cat in reply to SRH55]

they never did find a cause for me either just gave me broad spectrum antibiotics and all settled down... until the next time!!

[SRH55 in reply to Scaredy_cat]

Do your ember how long it took? I’ve had various different antibiotics, but nothing seems to be working😬 I just have to keep hoping something will work or it will get better on it’s own.

[Scaredy_cat in reply to SRH55]

Normally quite quick, a couple of days.

[Dodders]

About 12 weeks post SCT I got a lung infection. When the antibiotics didn't appear to be doing anything I had more tests one of which diagnosed fungal pneumonia. I can't remember if I had a fever though. Much later on, (perhaps 18 months) I had a low grade temperature, was readmitted, had every test imaginable which gave no definitive answer, and antibiotics. After 12 days my temp returned to normal but still didn't know what was the cause. I'm sorry that's probably not terribly helpful for you. I hope it resolves for you very soon.

[SRH55 in reply to Dodders]

Hi, thanks your reply, it was really helpful, just to hear someone else had a similar issue to me, without the cause ever being found.

Sending best wishes,

Shirley