When I was discharged on Guy Fawkes night my plan was to remain at home for three or four weeks until my neutrophils recovered from the chemo I’d had. That plan didn’t work out!
Three days later I woke up with a streaming cold and a sore throat. Just a wee cold I thought. In normal circumstances it would have been. However, as the day progressed I began to feel more and more rotten. The afternoon was spent cuddling a hot water bottle. I was cold – and not just the normal post-chemo cold that I now often feel, but bone chilling cold.
The deal is that in order to be allowed home is that I must keep a really close eye on my temperature and measure it at least 4 times a day. Temperature going over 38 degrees is the most accurate way of letting a neutropenic patient know that there is a problem and an infection is building. Suffice to say, by mid evening my temp was 38.1. A quick call to Ward 8 confirmed that I was to get myself down to the Western where I was going to be admitted into Ward 11 (no availability in the luxury penthouses in Ward 8!).
I arrived in an unfamiliar part of the hospital (which it transpires is +100 old – and it bloody looks it too!). I was directed to a bed in an enormous ward with 3 other patients and told to get settled. But I’m supposed to be isolated I told the nurse, I’m at high risk of more infection . I should be in isolation. The response was pretty much – its a bed, get in and be grateful!
By the time all the paperwork had been completed and my first IV antibiotic had been hung up it was about 1am. This from a 9pm admission. They were cutting it fine as standard protocol for AML patients with neutropenia and likely infection is that IV antibiotics must be administered within four hours max. I’m now much more informed about other elements of this protocol and know that several elements were not followed properly on this ward.
Armed with more facts from my favourite haematology nurse I will have no hesitation in future demanding to see the haematology registrar on call if I don’t think that the doc who is dealing with me is properly across my care. I’m not having the work we’ve all done so far compromised by other doctors or nurses missing something due to them not knowing enough about AML.
I’m not saying they didn’t care, however the places I was admitted to was an oncology ward and many of the nurses had no haematology experience. I had to insist on bloods being taken every morning – because I knew that my consultancy team would need them to try and work out how to treat my infection. I should have had a complete screen for infection upon admission – this didn’t happen until I was finally shifted to Ward 8 after three days.
I pushed each day I was in ward 11 to be moved to the haematology ward mainly because I didn’t feel that my health was safe where I was. This old ward had 4 shared loos between 27 patients and 3 shared showers. There were 3 other patients and all their visitors in the ward with me…….the amount of potential for bugs was huge!
Finally after 3 days Dr J told me that there was a room for me in Ward 8. Despite being made to wait till 11pm for my move I was very, very grateful to be back where I knew everyone was totally on top of my care and condition.
It took an agonising 9 more days and 3 more antibiotics to treat my infection. We don’t actually know what the infection was – and two thirds of the time the doctors never know. The test for success is to maintain a non spiking temperature range (below 38 degrees) for 48 consecutive hours. This shows that the antibiotics are working and I could go home. I managed to make it to about 40 hours three times, only to be bounced back to the beginning when I had a spike and the shivers!
We had a real giggle when the doc prescribed my final antibiotics as he directed the junior doctor to change my medication and said….”well that’s my budget blown for the year. These antibiotics are as expensive as it gets”!! I immediately took the opportunity to pull his leg and could instantly see he regretted saying anything……when I asked if I wasn’t worth it? “Of course you are, of course”……he stumbled and backed out the door!
Anyhow, I finally made it home and have spent the last two and a half weeks feeling really well and enjoying normality.
Oh – and I went to Glasgow. And I was told I’ve got a 100% stem cell match. I’m having a transplant in January!