I had blood taken last Friday because I have been stupidly tired recently. Napping at the dining table and such like. I fell asleep with my laptop on my knee the other night music playing and chat windows open (and it wasn't because my friends were boring me!) Before I plan on doing anything remotely energetic like having a shower I have to sleep before hand to build up energy and afterwards so I've actually got energy left for the rest of the day. At day hospice on Tuesday I was hardly awake at all and some of the staff commented on my lack of energy. It started to get stupid last week and I asked my GP to check my iron levels as I mentioned in the previous blog. Much to my surprise my iron came back fine! She started going through the results and said "ah there is just one thing... Have you ever had low neutrophils?" I looked blank; I had heard of neutrophils in passing but had never had a problem with them, I knew basic facts like they make up 50-70% of your immune system and in a nutshell your pretty much screwed without them. She carried on "they have requested we repeat the bloods in a week or so". Super... I said "I'll have a chat to my consultant, I'm seeing him later".
Straight after that I went up to chest clinic, my consultant is so good with me, he will see me at the drop of a hat, I don't actually plan appointments with him, I just call him on his mobile when I need to see him and he gets me straight into his next available clinic. I'm not one for drama especially not at hospital clinics but as they say "you always get one ah?" and my god did I (or we) that afternoon. I went into the waiting room and sat next to a lady who seemed to be impatiently tapping her feet. I just looked and smiled. A girl opposite me got called in and this lady held up her hands and said "for god sake I was here before her! This is a joke!" I looked at her and said "oh dear, when was your appointment?"
"11.10am" she snapped. By this point it was 12pm. A couple of ladies came to the waiting room from spirometery and we're as thrilled to witness this as I was... As the consultant was calling in another patient the lady next to me jumped up out of her chair and marches over towards the consultant, I actually thought she was going to lunge for him but she shouted "oi! have you forgot about me?! I've been here almost an hour and I have to get to
When I did eventually go in my consultant said "its funny I just mentioned birds and lung disease to the previous lady and she said 'Oh yeah, there's a girl that's been in the local newspaper alot recently with bird related lung disease'. She obviously didn't know she's just been chatting to you for the past 20 minutes". We had a giggle about that then actually got down to the reason I was there to begin with...
My lungs haven't been great over the last few days so called him on Monday and I went to his clinic on Wednesday. My sats were good, my weight was down 8kg from last clinic since just before Christmas but that’s not such a bad thing. We had a chat and went through what had been happening lung wise, came to the conclusion that although viruses can kill off neutophils I didn't have an infection and wasn't in need of IVs. I have just been suffering with further lung deterioration which is probably the cause of the tiredness also and so there's nothing anybody can do about that. I asked him about the Neutropenia and he said "to be honest unless it is some sort of virus which I don't think it is I don't know how it fits with your lung disease. I will contact your teams and see where we're up to with the transplant assessment. Come and see me again same time next week, we'll keep a close eye whilst things are a bit rocky".