Posts tagged 'Glandular Fever'

Ups and downs

Posted by on August 23rd 2019 in Health, or lack thereof

T+114 today and I was back at LRI for a haematology consultation and a fourth and final dose of IV Rituximab. During Wednesday's cardiology consultation at Glenfield Hospital I was told that my lack of get-up-and-go was due to me being anaemic, but today the LRI doc told me that I'm not. Today's Hb level was 109 g/L, and normal is 130-180 g/L, so go figure.

Platelets and WCC are both the highest they've been since 2015, and neutrophils are holding steady in the middle of the normal range, so that's all good. Serum ferritin, however, is at an all-time high, so high that I've had to extend the y-axis on the charts. The most recent test has the level at a whopping 4201 × 10-6 g/L (normal is 15–350 × 10-6 g/L, preferred is 50–200 × 10-6 g/L) but they say that I can't start venesections to reduce the level until next year which means living with the effects for a while yet.

The Glandular Fever has resolved, so they've decided that I won't need those incredibly-expensive Epstein-Barr Virus (EBV) Specific Cytotoxic T-Cells after all.

You'll have to excuse me now - I need to get back to the feeding regime... I need to take in at least 2000 calories a day just to maintain my reduced body-weight, and they'd like me to up that to at least 2200 a day to help me to regain 15kg of the 30kg that I've lost since the start of the year. I seem to spend most of my waking hours scoffing or crapping. I'm not short of suitable food and drink but having an appetite and functional taste-buds would help.

Beyond 100 Days

Posted by on August 13th 2019 in Health, or lack thereof

Started to get bad nausea and for a few days I was unable to swallow and/or keep down all of my pills, so we called it in on T+99 and they admitted me to Ward 41. After a bit of TLC they moved me to BMTU on T+102 so that they could give me another bag of Rituximab (my EBV markers count had gone up to new heights ~ 40 million). Because the Rituximab's not working as soon or as well as expected, they are considering plying me with a different drug - Epstein-Barr Virus (EBV) Specific Cytotoxic T-Cells (made in Australasia, stored in Scotland) - to give my new T-Cells a kick up the ass.

It's been a boring few days - I'm not confined to the building but I had a fair few things planned for the weekend and for this week, and it's all gone to shit.

Man or mouse?

Posted by on August 6th 2019 in Health, or lack thereof

Most people get the EBV when they are young and have few, if any, effects. It doesn't go away, it just sits there doing nothing bad. I've no doubt that I am one of those people.

The problem is that having a stem-cell transplant can leave you open to reactivation of the virus at a time when resistance is low.

So it's no surprise that, after a couple of weeks of having mildly-raised EBV markers (less than 1000, then 2239), on Monday (T+96 days) the marker count was through the roof at >45000 and I was diagnosed with Glandular Fever. With my returning facial hair and swollen neck-glands I look like a rather strange hamster.

Rituximab is the weapon of choice so I had my first of at least three weekly infusions of the stuff yesterday. It's not the most pleasant of cures.

Nearly made it to the T+100 days milestone without a major infection. I would "chin up" if it didn't hurt so much to do so. Ah well. As Matthias said, "Could be worse".