Thursday, 13 December 2012

One Step Forward. 10 Steps Back (FB Update)

I'm sorry I don't have the energy to write a blog, but thought I would copy my Facebook update regarding a very bad night I had two nights ago:

Hi Guys, thought I should update you all - I had an extremely bad night, I had one of my 'breathing attacks' where I just stop breathing. Think that this is all still part of my pneumonia but also my very poor lungs, my temperature was very high and my sats were low despite being on 6L of oxygen (maximum my concentrator goes to)

I'm so poorly and so scared right now I shouldn't even be here now,

 I should've died last night, I'm so thankful I had something helping me get through last night. But I know if it happens again I don't know if I can pull through it because I'm extremely weak and as a result of last night, I am so tired, extremely sore - my lungs hurt, my ribs, joints, headaches, swollen throat from extreme coughing, just pain everywhere.

I think my lips may have gone blue too which points to respiratory arrest (like a cardiac arrest - heart attack but of the lungs) I know if I'd called an ambulance they would have put a ventilator tube down my throat and as I am so unwell and weak I probably would not have been able to come off it and therefore I would have been taken off the transplant list, left in intensive care on a vent with no clue what to do other than be made comfortable and left with nothing, no transplant and no hope.
So poor Josh was in such a predicament but thankfully when my machines kicked in and saved me last night, eventually my oxygen levels came up, my temp came down and once I began to relax and calm down I settled. Although I have very little idea of what the hell exactly happened to me, poor Josh had to go through that but it was so hard for me but somehow, someway, something, pulled me through. The fact I'm here now typing this to you is a miracle in itself because I probably should be dead now - sorry to be so blunt, but I'm just being very honest!

In part of that honesty, I will admit I'm trying really hard to stay strong and keep positive, not just for me and my own peace of mind, but I am trying to stay strong for everyone around me, I never want people to worry about me and I like people to think I'm very strong and always positive but nights like last night really rock the boat and I've got to restore faith in my body and my self again, it's so difficult and scary but I will get back to the positive, happy, self-assured Kerry once last night is just a distant memory.

My lung function today was at best 8% which is so so poor, about 100mls less air than a can of coke can hold lol (hey at least I can laugh about it!!!) I wanted it to be wrong cos that's bad 8% is very, very rubbish lol!!

I Just need them lungs now, I don't care about Christmas anymore I just want to live, if it means being in Harefield for Christmas, so be it because truthfully I don't know how long my little weak body can keep going, come on Harefield!!

Just wanted you all to know what happened and if this makes you do one thing, sign up to become an organ donor. Someday, you could save the life of someone like mine.
Please be some oldies hero.
> Sign Up To Become A Donor Here <

Many people don't understand why I am at home with this, the reason is I want to pass away comfortably at home, everyone understands this - my cf team and my transplant team although there is always the option for me to go in if I want to, but for now I don't want to go in. It's the absolute last place I want to be (unless it's for transplant) so here is a comment I left on that Facebook update, here is the comment:

I'm so thrilled to hear from someone who also wants to be at home for 'the end' I've been told I might not make it to this Xmas also and I've been saying yes I will, I will not die, but then last night came and for that duration I thought maybe they were right  but now tonight I'm living to tell the tale and I'm alive, at home, comfortable, where I want to be. So many people tell me to go into hospital, or ask why do I not call an ambulance so I'm really happy to hear someone who feels the same way I do!! Being in hospital for me is not a peaceful, resting, relaxing place I have severe anxieties and panic attacks away from home, so I just hate being there unless completely necessary like at the beginning of this year, I had 3 lung collapses and needed chest drains so had no choice, but anyway I also have great difficulty sleeping and getting no sleep in hospital is awful, also hate the food lol, my hosp is 1.30 hours away from home so don't get visitors all the time, hence the anxieties etc, but yes regarding having pneumonia, the flu with 8% lung function, I should be in hospital but I have my fiancé as my full time carer doing literally everything for me, I just rest, rest and rest some more eating nice food and the same treatment as in hospital, I'm on 3 strong ivs and heaps of pain meds, better care, much more than I would in hosp, unless I have one on one nursing in itu or something... 

However I don't mind being in hospital if it's for transplant, in fact I will be jumping and running to Harefield *metaphorically speaking* I can't even walk, let alone jump haha! So thanks again to everyone for your messages but just one little thing - please, don't tell me to go into hospital lol. I know when I need intervention, Harefield know my situation and are basically on standby to be ambulanced there should I require Ecmo treatment or if I choose to wait for my lungs there I just have to call but currently this is where I want to be, on my sofa with my gorgeous, lovely amaaaaazing fiancé Josh, my puppies and my family all 2 minutes away  So as for my cf centre or going to my local hospital, it's a firm no lol I'm being taken care of, made comfortable and given the right meds etc by my local hospice outreach team (who are fab) and very closely monitored by my gp and tx team.

Thanks again for all for the loving, kind, supportive comments and messages, they honestly do bring tears to my eyes to feel so overwhelmed by love. Lots of love 


Little Harriet said...

Am thinking of you and hope so much you get new lungs for Christmas.


Anonymous said...

Can I just say how brave you are, I read your blog regularly and am thinking and praying for you. Keep fighting xx

Anonymous said...

I too am praying for you. You are a remarkable person. My husband spent last Christmas in intensive care, and now after a heart transplant has had his life transformed, but your journey, and that of everyone with CF , is so so much harder.

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