IT WILL BE MY WAY

Well Monday wasn't to bad, I went to the gym, taught some lessons and had a play on the pole, but by the evening I was wheezing, I was really struggling to get my breath in and started the nebbing routine. I haven't been wheezy like this since pre transplant when I was very sick, so Its scared me quite a bit. I did salbutamol, atrovent, pulmozyme and bramitob, but none of them barely touched it. I went to sleep Monday night hoping the wheeze would go. By Tuesday morning it was still there! I nebbed away but still I was struggling, I actually felt a bit breathless sitting down. This really started to worry me. Tuesday is usually me busiest day teaching so I really didn't want to have to go to the hospital, but finally I admitted defeat and went. my lung function had gone from 94% to 68%!!! I wasn't surprised, I felt pretty bad. The wheeze started to ease up but was replaced with a cough and bundles of dark flem. My doctor came to see me and decided I wasn't even allowed home to pick up my stuff as I had deteriorated in the space of 24 hours and he didn't know if I would carry on deteriorating at the same rate, if i did by the next day my lung function would be in the 30ies, the day after that there would be barely anything left! A really scary thought. I was hooked up to an IV antibiotic, every blood sample you can think of was taken, urine samples, the whole shabang. I was wondering whether I would be taken to harefield at this point as I was in exeter my CF centre. Mysteriously by the next day though I had improved alot! No wheeze! My lung function was back up! So after consulting with harefield they were happy for me to stay in Exeter.

Wednesday I suffered with my weird stomach problem, where my bowl just 'ok, iv had enough' and switches off, very pain full indeed. I sicked up litrally everything I had eaten and that was alot due to boredom. I put this down to my sugars going slightly loopy as I was ill, my bowl does it at any slight imbalance in things like sugars, electrolytes, magnesium's and so on. So paracetamol drip hooked up as I vomited away. As soon as the pain went so did the vomiting. I also decided that I would ease up on stuffing my face at this point, all the food wasn't really helping the situation and it wasn't helping my self esteem, I felt like a heifer lump and thing I must of also suffered from fluid retention as no one can put on 5kg in 3 days and drop it in 2.

Thursday the wheeze was back and I spent the whole day being frustrated and angry, stropping at my mum who was only there to help me with my ball, which was being slightly neglected, but is now very much back on track and I urge you all to email me if you can contribute a raffle or want to buy tickets, kirstiemils@hotmail.co.uk Any way, I was so frustrated as I didn't know what was going on, my body was out of control and there wasn't any answers I felt like I was in a vortex and being hurled back to pre transplant days. I was scared, something I don't often say, but I was.

Then Friday the wheeze was still there in the morning, rasping away and irritating me. Old man in lungs syndrome is the most annoying thing ever, I tried to cough the wheeze away which is stupid as it only makes it worse, you can't cough a wheeze out, its not flem! So I took my nebs and it actually went. I decided to go to the gym with stu, I wasn't sure whether it was a good idea, I could end up a wheezy raspy mess and be even more frustrated but I had to give it a try, my feeling of umpa lumpaness was still there and I need to get ride of my frustrations. It did me the world of good! I did level 11 on the bike that's a 3 level jump and i did that for 40mins. I was wheezing on and off, but by the end it had settled, I did my weight's, stretches, core and i used the brand new vibration plates, which when used correctly kill!

So there I was not thinking I wouldn't be escaping for a while and the doc comes in Saturday and yay I was allowed home on oral antibiotics, his words were 'your not the patient are you'

So what caused wheeziness, some random bug we don't know the name of yet, but it wasn't my pseudo, this is good news, It may mean we have got rid of the dreaded pseudo, as it didn't show up in any of my cultures. The bug I do have is a different sort but easier to handle and once its gone it should be gone for good, no colonisation like pseudo, cepacia or staph. I'm hoping it ate my pseudo up and took it with it. So lets hope both are gone. I am now on a wide spectrum antibio for 5 days.

What has this admission done, well certain aspects made me think back to my whole journey and the decisions I made, would I make the same ones again a second time round? Its hard to say until your right there in the situation.

When I first thought of transplant I was no where near needing it but thought instantly I would never have one. As soon as It came round that it might be a possibility I decided yes, yes I wanted to live. I wasn't ready to die. I wonder whether I would be able to do all those things again. I'm also very much aware that the UK as a general rule don't do second transplants, I think there are obviously exceptions to this rule. So I guess the the situation I would be in would obviously dictate my decisions. One of my nurses said 'when I sent you off in that helicopter, I was worried I was sending you to someone who couldn't give you the death you deserved' By that she means a 'nice' death, as pain free as possible, no suffering, going in peace surrounded by the ones you love. It always crosses my mind that had I died it would have been the most brutal of deaths, it still was the most brutal of deaths, I lived my death for what seemed like an eternity. In my mind I died somewhere in the midst of it all. Something no one can really understand, what it is to die in your mind and then have to re learn to live. That was simply the hardest thing.

So transplant is amazing and its given this hope that I might live a long (well long to me) life. That I have years to fill with things I never dreamt of, but theres still this deep uncertainty, this never knowing when its all going to come crashing down around you. What do you do then? I guess you do the same, you face it head on, maybe my decisions won't be the same and the out come will be different. But what ever happens..........

IT WILL BE MY WAY