Well I’ve had an interesting day. I had to have a PET CT scan. This meant driving through rush hour London to get to the hospital for 9.30am. Once I’d checked it I was quickly taken round to a tiny curtained room with a reclining chair in it. I was given some medicine through my Hickman Line. They tell you there’s nothing to worry about but I did look twice at the metal box with the nuclear sign on it. Lol! After they injected the radio active ingredient I was told to rest quietly for an hour. I was not allowed to read or listen to music. This is because it will make the radio active stuff stick to the tissues I am using and stimulating and they want an image of how the tissues are when not stressed. So I dozed for a while.
I was soon on the scanner room. The scanner is a cross between a MRI tunnel and the CT doughnut. My head was held still by a contoured pillow and a band was placed across my forehead to stop me moving. I also had a wide belt strap my body down. They gave me a blanket because the room was cold but your arms have to be resting above your head. It was really hard not to shiver. It was also hard not to scratch.
The scan lasted about 25mins. After they asked me to wait while they checked the images. After 15 mins I went and reminded them I was still sitting there and they said I could go. I should get the results in a few weeks when I see the rheumatologist, earlier if there’s a problem.
Yesterday I saw the haematologist. That was a mixed bag. Regular readers will know I had a blood transfusion last week. That pushed my count up and I was able to continue with my ECP. Sadly I discovered yesterday that my counts have fallen again. They don’t know why this keeps happening. My EPO injections have been increased in strength in a bid to boost the number of red cells I have. At present the epo I produce remains low. He also told me my immune system is low too and I will need some infusions for that if it carries on. They will continue to keep a close eye and may do another bone marrow biopsy in 3 months.
The good news is that my liver and kidneys are slightly better and everything else remains much the same.
As he has increased my epo injections, the doctor also increased my blood pressure meds. I told him the thyroxine hadn’t improved my sleeping sickness and he doubled the dose of that too.
I nearly managed to sneak out without seeing the dietician. Lol. She was ok as I only lost 1/2 kilo this week. She is insisting on me trying a new supplement though. I’ll give it a go but no promises.
It’s all been a bit of a struggle lately. I really hope I start to feel better soon. Despite this I had a lovely weekend and enjoyed meeting up with my extended family and sitting outside in the warmth and fresh air.
I look forward to seeing many of you this week. Xx
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