Wednesday June 10th - Thursday June 11th. Started the drug ATG treatment.

OH hello

On Wednesday afternoon I received a phone call from Kings Hospital stating that a bed had become available for me in a shared room with another patient. I was told to arrive about 7pm in order to move into the room.

The room is fairly big with two beds separated by a curtain. The other bed was occupied by a lad around my age. My family stayed with me for a while and I had the dressing changed on my Hickman Line as it had got fairly bloody. I also had more blood samples taken, this time from one of the lines on my Hickman instead of another cannula. Woooo no more cannulas for a while. I also had my blood pressure and temperature taken. My temperature was 37.9 which is a bit higher than they wanted so the staff said they'd keep an eye on me.

After my family left I remained awake till 11:30ish when the night doctor arrived to ask me about the drugs that I'm already prescribed to and to inform me about the coming day.

Weird innit.

I didn't really sleep that well that night, which I put down to being in a different environment. I was woken up around 4am to be told that my blood tests had showed that my Neutrophil (I think that's spelled correctly) had dropped below 1 to 0.63. It's something to do with my white blood cells, which means that my immune system is now even weaker. The nurse told me I would be having even more regular check ups in order to monitor the situation, but it shouldn't be too serious. Unless I somehow  come into contact with someone with the flu or something.


I began Thursday morning with a shower, trying out the waterproof Hickman Line holder my mum had got me. Its basically just a pouch that goes around my neck and holds the line.

That's my heart apparently.

At about 11am I was taken by a porter down to a cardiac ward in order to have an ultrasound of my heart. I had to lay topless on my side as a nurse and her intern (I think) used one of those ultrasound jelly pens over where my heart should be. I had a couple of stickers linked to their machine placed on me in order to help their monitoring. The jelly was quite cold and every so often I would turn my head to try and look at the screen where you could see my heart beating. I could barely work out what was on the screen and yet the two staff were easily spotting and discussing different parts of my heart. I felt a bit like a pregnant woman having an ultrasound. Once it was over I was told that there didn't seem to be any problems with my heart and if I had any questions. They kindly allowed me to take a couple of photos of the screen, and even tried to put the best images on the screen for me to photograph and film.

One day I'll be photogenic. (bag is ATG)

A porter took me back to my room afterwards as King's Hospital is huge and there is no way I'd ever find my way back on my own. I had a nurse and doctor almost immediately come into my room to inform me that I would be starting my ATG treatment soon and that all I needed first was a unit of blood. While I was being given blood my mum arrived to spend some time with me, and by that I mean annoy me. As the blood was finishing the nurse began putting medicines and other liquids through my Hickman Lines to get me ready for the treatment. My clinical nurse, Nana, also arrived which was good as I hadn't seen her for a few days. She told me about the treatment outlining how it came from a horse and that ultimately it was hoped that it would suppress my immune system which was attacking my bone marrow. There are of course possible side affects but because of my youth I should hopefully be alright. As I write this I have yet to feel any negative affects. As they don't know how I will react to the treatment they began with a test, this would input just 5mm of the ATG (which is diluted with saline) into my system over the space of an hour.

At least it's really quick. OH WAIT.

The hour came and went and everything seemed fine, so it was set to its normal pace and the rest of the bag was put to go into me. It will take a total of 18 hours for this bag to go into me. The 2nd bag (when I get it) will take 14-16 hours. So really short transfusions. I will be having a total of 4 bags I think. There is currently 15 hours 17 minutes remaining of this bag.

After dinner, I had my updated drugs brought out for me. So if I work this out correctly, I'm on: the ATG bag, 3 ATG capsules (2X day I think), spoon of Noxafil (3X day), special mouthwash (4X day), Nystan (4X day straight after mouthwash), Ciprofloxacin (2X day) and Aciclovir (2X day).
I hope I've got that all correct. I imagine tomorrow will be a fairly quiet day.

There isn't really that much for me to do at the moment except hang about and try and get comfortable despite being rigged into the machine. When I was having transfusions over night on my first night at Lincoln hospital I found it difficult to sleep, I doubt tonight will be any different.

Riveting read

More drugs than a pharmacy.