I started 2022 planning to write one blog post per month. I posted one in January, but then I got side-tracked by another EDS project, some building work done in my flat, turning 50 years old 😳😥, the World Cup, Christmas, and here we are 14 months later and I’m finally writing my blog again. For those who enquired or wondered, I’m okay, I’ve just been busy. I am sorry for the big gap, but it’s great I’m well enough to be busy!
So, where were we? …Since 2010 I’ve been unable to eat normal food, so instead I receive artificial nutrition through tubes into my body. Consequently, I have blood tests every 3-4 months to check on the levels of nutrients, chemicals and cells in my blood. Getting blood out of my veins is a challenge. I’ve had so many intravenous drips put into my arms that over the years my veins have become damaged. For a period the veins in my arms were so bad we had to use my feet instead. But the nurse who visits me is lovely and patient, and we usually find a friendly vein and get some blood.
Attachment One
The results arrive a few days later and are always …interesting. During the last 12 years I can’t remember the results of a blood test ever being normal, but over the last few years the results have been getting progressively more abnormal.
The results in attachment one (click to enlarge) are from a blood test in November 2021. There are usually a few results shown in red ink, meaning the result is abnormal, but in that month there were eight different results in red ink. My GP was concerned about the liver function results. An enzyme called alanine tranaminase (ALT) and an iron storing protein called ferretin were both raised, which is a sign of liver disease. It was the first time I’d had this problem, however the consultant who prescribes my TPN was reassuring as abnormal liver results are common in people fed by parenteral nutrition. My blood count (red and white blood cells), has been low since about 2008. Similarly, my platelets are also always low (thrombocytopenia).
Attachment Two
The results in attachment two are from a follow up blood test 3 months later. Thankfully there’s less red ink. The consultant who prescribes my TPN describes the ferretin result as ‘odd …ferretin can indicate inflammation somewhere but it is not at all clear where it could be’. I experience pain from numerous places every day so there’s clearly inflammation in my body.
My latest blood test, attachment three from February 2023, shows similar liver results, low blood count and thrombocytopenia. Five blood tests in a row have shown mildly abnormal liver function results, so perhaps that is normal for me now. Ten years ago I used to regularly have vitamin deficiencies, which I don’t get anymore, so there has been progress.
Attachment Three
I’ve asked doctors many times why my results are always abnormal, but no one can really answer that. The contributing factors are obvious: I have a chronic illness, I’m very inactive due to joint pain, and I’ve been fed artificial food through tubes for over ten years. The results could easily be worse.
I wanted to show these results as it’s something people fed with artificial nutrition deal with every few months. I used to worry about blood tests, but these days not so much. I lost the ability to eat food over 12 years ago. It’s extraordinary I’m still alive and functioning. I’m grateful to all the doctors and chemists involved, and to have been born in a country with free medical care.
Thanks for reading, Ceri.