My week has been sort of messed up... (Nothing new there then). On Thursday one of my best friends came round for a catch up. I love spending time with friends it makes me feel strangely 'normal' for a while. Anyway she came round and we sat having a gossip when the phone rang. It was the psychiatrist saying I had missed an appointment with him earlier that morning, he had cancelled my appointment for next week and sent me one for that day I said "I'm sorry I never received it". He said he had a free slot and asked if he could come upto the house now and see me? A little taken a back I said "err its not a great time butttt okay". Within half an hour there was a consultant psychiatrist sat in my front room... Hmmm. A little unexpected, my poor friend was thrown into the kitchen for 2 hours.
I'm not going to go into detail about the actual session itself, he had spoken to my local transplant doctor about what the 'issues' were and lets just say I got a few 'things' and feelings off my chest and also cleared things up a little. I had been told psychiatric assessment was standard procedure when someone is facing a big operation like transplant but I have to be honest it didn't seem that way. We talked about things completely off the topic, I don't know whether he was trying to build up a picture or digging at things that weren't there to dig at but I made sure I got my point across and really told him what I thought of some of his comments. Needless to say I don't need to see him again and he's given me a clean bill of mental health for transplant!

On Sunday I went to see 'Seven Pounds'. I had a rough idea of the story line and was looking forwards to it. I managed to cry from start to finish... The story was mainly about organ donation, something I'm obviously passionate about. Will Smith manages to crash his car into a bus whilst on his mobile phone; he kills 7 people including the passenger, his wife. He then sets out to save and improve the lives of 7 people, 5 directly through organ donation, 1 young life through bone marrow donation and another family he gives his home to as he plans on not needing it anyway. The lady he signs his house over to has two young children and is in a very abusive relationship. Though the story mainly follows a woman (who he later falls in love with) who has congenital heart failure and needs a heart transplant, she falls desperately ill and Will confronts her doctor on what her chances are of finding a donor. When he discovers she only has a 3-5% chance of finding a donor in time due to the rarity of her blood group he decides to take things into his own hands and ultimately commits suicide to save her life. He also restores the gift of sight at the sametime to a very worthy cornea recipitant. I think box offices estimated over 70% of a cinema audience will be in tears by the end of the film, it really is that touching. It shows how important the gift of life really is and shows how much organ donation changes lives. That can only happen though if you talk about your wishes with your loved ones (hopefully this film will get people talking!) and sign up to the organ donor register so go do it here!
Health wise for me in the past week or so things haven't been great. I've been seeing my primary consultant weekly now for the past two weeks and he admitted today he is concerned about the way things have become. To hear that from a consultant is worrying, I broke down on Tuesday at day hospice when I spoke to one of the staff about a letter I had received, a brief run down of last weeks appointment where he gets the message across about how worried he actually is. He said today he doesn't know why but there has been a clear deterioration in my lungs. Something is affecting my neutorphils (see previous post) and he doesn't know what, looking back at previous bloods my neutorphils have never been low before. Neutorphils make up 50-70% of your immune system. It doesn't take a rocket scientist to work out that could cause alot trouble for me. It means I'm prone to infection and unable to fight off infection. With what little lung function I have infections hit me hard as it is what I don't need is hardly any immune system to fight them off with. He concluded by saying he would call my London team this afternoon and see if they can speed up the transplant assessment given the deterioration, he doesn't want to have to admit me to hospital because of the fact nothing can be done anyway to improve my current health and due to how compromised my immune system now is. He also said now there is a change in bloods they should see me sooner and hopefully work out a plan. He patted me on the back on the way out and said "I'm sorry; I wish I could do more but the orders come from above and I think we need to bang some heads together!"
Oh one last thing, I want to wish one of my friends and another hospice patient well with her operation next week, if you’re reading this best of luck and we will miss you at day hospice! xxx

Pic

New hair!

ramblings, neutropenia and other things...

Thank god another week is nearly over. This week, everyday call it fate bad luck or whatever I have either been at appointments or had 'visitors' (health related one's I mean)...
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 Accrington ya know?!" Looking completely baffled the consultant replied "no, let me see where your notes are". I sunk deeper into my seat and hid my giggles behind my hand. The receptionist went into the doctor's room and came out and said to her "your next, your being seen in appointment order, you were here before them but your appointment is after theirs". She tutted and carried on tapping her feet. When she did finally get called in I had a giggle with the two ladies opposite me as one of them said "thank god for that!" We got talking and had a good chat until they were called in, they never asked me about my lungs or health or anything like that.
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".

I haven't posted recently mainly because there isn't much to post about! We had a quiet new year, enjoyed everyone else's fireworks and was in bed for just after midnight. Not exactly a thrilling night, caught dad snoring in the chair at one point...
On a health side of things my lungs have been a bit up and down. Over the past few days I've become more aware I'm out of breath. I don't think I am more out of breath than usual but I'm just more aware of it, I have been taking my maximum dose of Diazapam. Maybe I shouldn't be doing but I didn't get to talk to anyone yesterday at day hospice, my advanced nurse practitioner (community nurse) is off on leave and my consultant won't have the foggiest so I thought I'd see to myself. I'm quite used to being left to my own devices, up until summer last year I was very unsupported in the community, I didn't have any sort of community nurse, my consultant got me an appointment when I needed to see him and I wasn't attending the hospice. I'll possibly run it by my GP after the weekend if things are still the same but I doubt she'll be able to help out much either.
Otherwise recently I have been more tired than usual and my eyes have gone very dark. I have bloods on Friday to check my iron levels and haemoglobin I suspect as my appetite isn't so good at the moment they're the cause. My iron stores have been low for as long as I can remember, when I was 17 my B12 levels were found to be low too, I thought nothing of the pins and needles in my hands and fingers and when I was diagnosed with Pernicious Anaemia and discovered I'd be on B12 injections every 3mths for the rest of my life I was quite shocked. Low B12 levels and Pernicious Anaemia can cause spinal and brain damage if left untreated, the injections are stupidly painful, the solution is thick like tar, I hate having them but they're just every 3mths now. At the start I was on a build up course, something stupid like one every other day and I actually cried at the thought of having them so often and I don't cry at needles... Usually!
There isn't much news on the transplant front either. I've received an appointment to go for a psychological assessment, something I'm told is procedure when someone is to under go such a big operation then once I've been given the all clear then hopefully one of the hospitals (I'm puzzled as to which) will hopefully crack on with the actual transplant assessment...