7.03.2010

AWOL explanation

Its been a long time since I've blogged but I finally feel able to start again. I can't exactly put my finger on why it's been so long, nothing dramatic or exciting or devastating has happened. I suppose thats where the problem has been really, I haven't had anything to say. Life has gone on as usual, my uni course has finished now and I'm waiting for the results next month, I have been bored silly without the work to keep me going and without that focus I have struggled every bit as much as I thought I would.
I have also noticed a change in my breathing. As you may have gathered from my last few posts, everything has got a little bit harder, a little bit more work and more difficult to cope with. I've been back and forth to the hospital trying to find somthing to make a difference to how I'm feeling. It has been difficult as this is exactly how it was in 2006, i felt wrong in my own body had numerous clinic visits and new drugs to make a difference with no success and ended up collapsing on my way to work and life as I knew it changed forever. Thankfully there hasn't been a big dramatic ending like this time, but as you can imagine the physical feeling of not being able to breathe is bad enough without the memory of what happened last time I felt this way.
Anyway, after a lot of hospital clinics, tweaks in medication and getting upset about what to do, I spoke to my CF nurse about it all which ended in me crying on the phone and us both deciding that maybe a few days in hospital to try and figure out was was happening would be the best course of action. I myself thought that an NIV (non invasive ventilator) might make a difference and it was agreed that I could be tested to see if it would help. Basically when lungs aren't working properly (especially if on oxygen) the body can retain posionous CO2 as the lungs dont have the force to push it all out when exhaling. This is most common during sleep because even people with normal lungs find breathing harder at night. If someone retains CO2 they get headachy and very tired and lethargic (my main symptom). NIV is a form of ventilator that aids breathing helping to get rid of CO2 and in turn relieve symptoms.
So last week I stayed in hospital and had a through going over. The Dr's were pretty sure it was infection causing problems but my blood result was very low on infection markers. Next they did a CO2 test during the day (a small blade cuts the ear and arterial gas is measured for CO2), again normal levels. I had a sleep test to check CO2 levels, which again was fine meaning NIV would make no difference to my exhaustion. Finally a CT scan was done to have a detailed look at my airways. Remarkably it showed very little change on 3 years ago and virtually no sputum, which is unheard of in a CF patient let alone one who hasn't had IV antibiotics for 3 years. The doctor actually told me I was rewriting the text books.
I am of course very pleased that my luungs seem to be holding their own and clinging on so amazingly well, and I am very grateful for that fact. However, I am also a bit gutted. This sounds incredibly ungrateful I realise but let me try to explain. Everyday especially the last 6 months is so hard that it is an accomplishment just to get through a day, I am not leading a normal life in any shape or form. I gasp for breath after a 10 m walk to the bathroom, I am exhausted from morning till night and I watch my friends and family living they're lives while I can only dream of living mine. The hope I carried that this admission would somehow provide me with something to feel a bit better was huge, and to hear that there is nothing they can do to ease the suffering is gut wrenching.
The chief doctor who I met for the first time during my stay was lovely. She took me to the dr's office and showed me my CT scan and took at least 15 mins discussing it in detail for me. The vast majority of CF patients have infection as they're number 1 problem which can be treated. That is not my problem. I have severe damage to my lungs, the small airways are closing down and my larger airways are very baggy which means they dont function properly. Mostly they are just closing up and this is the reason I am so breathless. I am on the maximum amount of treatment to keep airways open and essentially there is nothing else that is going to make a difference right now. The Dr was very kind and said how amazingly hard i have worked to keep my lungs well, but that she understood I must feel as though I am in no man's land at the moment, without a way to move forward.
I came home on Wednesday with a new inhaler (has made a small difference but nothing groundbreaking), a form of NIV for making physio less tiring, and a steam inhaler to see if that helps in any way. I feel happier in the fact that I have met new members of the team who are supproting me but I do realise their hands are tied right now.
So I am home, its lovely to sleep in my own bed and be back where I belong but it is also back to the grindstone. I am feeling even worse in this heat wave and its doubly hard to realise there is nothing that can help me (except new lungs). I was supposed to be at the theatre today (a birthday present from May) but my lungs are breathless in bed without tackling, washing dressing and the heat and pollution of Londaon so I have given my tickets to family to go instead. I am gutted. Also have a family wedding next Saturday which will be tough to get to but I will be there.
I hope it doesn't sound like a moany post, I just wish there was some way for me to get my life back and be involved rather than sat on the side lines. Three years is too long to waste your life.

7 comments:

  1. There's nothing I can say really to help, is there?
    Just know that I'm so sorry for how you're feeling and I think of you all the time and wish for your new lungs! Even though we've never actually talked xx

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  2. aww tor, its heartbreaking it really is.
    I hope like anything you get your lungs soon.
    your right 3 years is too too long. but and i know its small you have done some amazing things still - youve done your courses, you won the CF award, you have made numerous TV and radio appearences, you met celebritites, you gained a huge following on here and facebook with you troopers, and you have promoted organ donation awareness hugely. I know of at least 3 people alone that signed because of you alone!

    I wish there was something we could all do

    sending massive hugs xxxxx

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  6. Stay strong, keep writing, you are an inspiration and source of strength. Maybe somebody 'up there' has different plans for you, maybe you're being made to share your gift of inspiration with others. Strength and health to you. Ben x

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  7. Hiya

    Now while I'm not a CF patient I do have a very similar condition to yourself with the smaller vessels in my lungs being damaged by my immune system after a bone marrow transplant meaning I need them replaced too.

    I empathise completely with your frustrations and hope you get some respite but in the meantime I hope you're not beating yourself up about sounding moany. You don't and even if you did you have every right to.

    All the best

    Paul

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