I Don’t Want To Die

I know I only wrote a few days ago but I thought I had better update you with what happened at hospital yesterday and the thoughts going through my mind endlessly as they are still fresh. I know it must sound odd, but I never see myself as a really poorly person. I have never let Cystic Fibrosis control my life, and although in my past some people would use it as a weapon against me, I have always been Kimberley, who just happens to have CF. I may have the odd moan and rant on facebook about feeling rough, but to me it’s nothing more than one of my friends saying they have a headache and they wish it would just fuck off! It really hits home when you have your medical team using phrases such as “well we can’t do that because your body won’t be able to take it” or “we see this occasionally, especially in extremely ill people such as you Kim”.

I guess I better start with my clinic appointment yesterday, I usually dread the whole embarkle of it. All I can think of is it’s just another few of my hours of my life wasted away, where nothing is ever really said, in and out and usually a hell of a lot of waiting about as people are so busy. Yesterday however was different, it felt different and I actually was comfortable being there for those few hours. I had a lot of one to one time with my CF team, both my CF nurses and my physiotherapist, and then the conversation with my consultant. I felt at ease as they were able to spend the time with me rather than flapping about like they usually do as clinics tend to be so busy. I had a few giggles and was made lots of mugs of hot sweet tea, one of my nurses even came to the X ray with me and then got me some lunch. Seeing my consultant was productive, although it wasn’t how I had hoped it would go. We discussed all aspects of my care from how much I’m getting out of the house to what medications I feel are not really working for me. I needed to bring up the subject about my womb and the problems I had been having, I said that I would be happy for them to try again investigating as long as I had some sort of pain relief and some entinox as was originally planned at the time of my last appointment but never actually happened. His answer wasn’t what I wanted to hear, they think that I have some type of cysts in my womb and opening of my cervix, the investigation of course would tell them exactly what the problem is but the treatment if this is the case is surgery and my consultant is worried that having found out what the cause is, they won’t be able to do anything about it. Unless it is life threatening, I am not allowed to undergo any surgical procedure by general anaesthetic or even sedation of some kind. He explained that because of the severity of my condition and obviously the fact I am now on the transplant waiting list for new lungs, they would refuse point blankly against any treatment of this kind as my body just wouldn’t be able to cope under the pressure of being put to sleep. I was understandably pissed off, not that it’s his fault, of course I can understand the reasons, but due to the fact of my situation in the now, CF has once again put a stop to something else that would so easily be fixed in the norm…

I explained about the pain I had been getting and the swelling at the front of my chest, just above where my snake heart tattoo is, he had a feel and sent me for x-ray just to see if there was anything untoward. I didn’t see him again after the x ray but my CF nurse did show me the scan, I now wish I had taken a picture so I could show you what a state my lungs are in…. From what I could see, there were two fifty pence piece sized black holes on either side of my lungs, this is the good bit! The tiny part I am basically able to breathe from, the rest a cloudy white mess and right where my pain and swelling is, a solid white mass. Verdict, new lungs needed!
Just before my consultant left me to the rest of the team, he said he would try his best to get an investigation done regarding the womb, but problem being that they won’t be able to do anything about it once they have found the cause, and secondly, he would write to Dr Carby in Harefield, (as I am up there next month) just to outline the severity of my situation once again and how much I am suffering. Not that there is much you can do of course, there is no ‘top of the list’ but to hear him say those words really hit home of the seriousness and complete need of a phone call very soon.

Cystic Fibrosis can affect you in so many ways, people just wouldn’t expect. I am really missing the intimacy a man would have with his wife. God knows we try, but what I would kill to be able to give my husband a proper kiss. I long for the day I can kiss him over and over again, one of those kisses you would hear someone say “Look’s like she didn’t have anything for breakfast, she’s eating him alive!” if you were to do it in public. For the time being it’s little pecks, linger any longer and my breathe is literally taken away….
It’s the same before bed, I love cuddles, and my husband give’s me the best, but unlike any other couple that can snuggle away and fall asleep in each others arms, I literally can only have a couple of seconds of Stef’s embrace, otherwise the weight of his arms crushes my chest and makes it even harder for me to breathe, (if that’s possible). I know he wouldn’t do it as our love is unconditional, but I often think why does he put up with this when he could have a fit healthy girl without all these complications.

I had a really bad time though the night, Stef would try and comfort me but I hate making a fuss and disturbing him as I know he is up for work early. As I lay there in pain and struggling to breathe, tears tolling down my face I thought how hard it would be for me to say goodbye. I’m turning 29 a fortnight tomorrow, a milestone for a Cystic in my eyes. Especially when only a few years ago I was in intensive care and recovery for four months thinking I might not be here today. However, I know these days Cystic’s are living even longer, and especially as turning 30 when your fit and healthy is when they say your life really begins. I’m petrified if my call doesn’t come soon I won’t see my 30^th. I’m fighting my corner and being as positive as I can be, I’m not ready to go yet. I just need some more time please, time to be a loving wife. A mummy to seven snakes! A daughter, a sister, a friend… I just want more time to be me.

Thank you for reading… xxx