Tuesday 27 September 2016

Bone marrow

Today I saw a haematologist, to try to get to the bottom of my lack of haemoglobin and neutrophils (latest neutrophil count is 0.9, which is actually an improvement!). This consultants opinion directly contrasted the 'it's not a big deal' view of the registrar I saw a few weeks ago: I'm having a bone marrow biopsy next week, with a view to starting G-CSF injections soon after the results are back. I also had some bloods taken which were too specialist to be analysed in Nottingham and are being sent to the National Blood & Transplant labs. The suspected diagnosis is autoimmune neutropenia, which is incredibly rare in adults, but essentially means that I have normally functioning bone marrow which makes neutrophils, but my immune system has mistakenly identified them as harmful and destroys them before they can fight infection - which would explain how I got meningitis. The G-CSF injections (G-CSF stands for granuloycte colony stimulating factor; very confusing since I've used the acronym CSF to mean cerebrospinal fluid so far!) will stimulate bone marrow production of white blood cells in the hope that the rate of production will beat the rate of destruction, and I'll be left with a healthy level. I'll have to give them to myself daily, probably for life. They need to be stored in a fridge, which certainly wasn't available when I was camping in Africa, so I'm very glad I was able to enjoy that experience whilst I was able to. Now, to look forward to the biopsy...

Love Emily x

Saturday 3 September 2016

1 year qualified

I can't believe it's been a year since I qualified! I feel like I'm starting to get the hang of this 'being a midwife' rhubarb, and I'm still loving it.

Health wise there's been a few blips in the past few months. My neutrophil count (neutrophil = a type of white blood cell responsible for fighting infection) dipped to 0.6 (normal range is 2-8, <1 is the level you'd expect to see in an oncology patient undergoing chemotherapy) and as a result I've regularly been picking up colds, chest infections, ear infections, sore throats, UTIs and keratitis (cornea infections). I've been seeing haematology because of this and the working diagnosis is autoimmune neutropenia: in English, my body is making neutrophils but my immune system destroys them before they become effective. It's a condition which usually affects newborns and infants, but most outgrow it and is therefore incredibly rare in adults. Usually it's pretty benign and is more of a 'quirk' than an issue, but given that it's the probable cause of meningitis and sepsis then the possibility of G-CSF treatment (something I don't fully understand but involves encouraging my bone marrow to produce more white blood cells) has been floated.

Completely incidentally, whilst having blood tests for the neutropenia a fairly dangerously low haemoglobin (Hb) level even for a redhead vegetarian! I was offered a blood transfusion which I accepted, and was admitted to QMC for this, but then it turned out that my GP hadn't cross-matched any blood for me (checking my blood group against what the blood bank has in stock and ordering the right stuff) so it couldn't be done that day, although I was given an IV iron infusion which made me feel AMAZING! I've had a couple more since, and it seems to be keeping on top of things.

Love Emily x

P.s. It's been >1 year seizure free, so this happened:

Days 4-12/82 of isolation

Days 4-12 of isolation have been spent doing, well, fuck all really. A high was receiving my 'shielding letter' in the post, bec...