Late night rambles

After the shocker of a bad few days last week, I finally gathered from my lungs it is infact infection. I was happy about this, why? Well because infection is something that can get better and go away, it isn't just my lungs deteriorating, it is infection that is 'fixable'. I'm on lovely big doses of antibiotics at the moment and coughing green gunk with every bit of energy I have but I am getting there. And I managed to fit in an awesome few days away on a spa break last week. It was at times hard work, ok so sitting around in a spa for a few days may not seem like it but I do have less than 15% lung function now, just the sight of a flight of stairs makes my toes curl up. But it was so worth it. It gave me much needed head space to get things into prospective. I looked out over the balcony in the spa and just felt relief, I felt lucky, I felt lucky to be me, to be where I am and to lucky I'm still here.
It amazes me in the face of so much adversity, facing so much uncertainty only then do we really appreciate who are, what we have and in my case what I'm still able to do. And it was then I thought 'if I don't make this transplant list then I was never meant to and I can accept that now'. 12 months ago I didn't even come close to accepting that.
Fact is I've learned to love my life, it may not be perfect but it is my life and it is the best I can make it. Being offered a chance at transplant would be amazing but I think I can accept it now if I don't get the opportunity to go on the list.
Tonight my thoughts turn to Jessica Wales. She's been waiting for new lungs for 4yrs, 4yrs too long.

The machine currently keeping Jessica alive...

The prospect of losing Jessica because she can't hold on any longer for a donor horrifies me, the fact she's held on for 4yrs already horrifies me even more and to think her wait could now well be in vain is just horrible. The fact that I could also be potentially facing this myself, well I think I would need tips on how to cope because I don't know how I would, my mind is yet to even get that far ahead. Nobody deserves to wait that long for an organ donor, someone to give their organs after their death when they're no longer alive and no longer need them. Not difficult really is it? The really sad thing? Jessica is one of many desperate for a transplant tonight, why would you not want some good to come out of the bad? Why would you not want to give someone (or more than one person in many cases) the chance to live after you've died? Would you not want someone to do the same for you? Nobody likes talking about dying but I believe facing upto our fears makes us more human. Think about it, talk about it, do something about it.

It takes alot to scare me now. Having been through what I've been through. Right now I'm scared. My mentality, with transplant in particular has always been 'hold on a bit longer and you'll get there, just a bit longer to the next appointment'. I'm so stubborn that that has not failed me yet. As silly as it may sound, seen as I was given just days to live in a hospice exactly 12mths ago its only recently that I've really realised that its going to take more than my stubborn mind set to keep me alive. And that as much as I desperately want to cling onto life and the chance of a transplant my body might just fail me before that's possible. Right now things are bad, I'm determined I will not fall before this (hopefully) final hurdle. I'm not religious but I talked to a family member recently that is and since then I've been praying, I don't quite know to who or what, just praying. Please keep everything crossed that my clinic appointment on the 22nd goes well.

Pics

It's times like these that make me appreciate my life and help me to realise just how special it really is.

On Monday I'm going away to spend time with my family in Wales, I'm looking forward to the break and spending time with the people I love.

News

So there's news. It was what I expected I guess, Pre Transplant clinic 22nd September. It just puzzles me where 'urgent' comes into that. I understand its holidays, everybody is away and it's a multidisciplinary meeting, involving co-ordinators, dieticians, social worker, physiotherapy, my consultant, so everyone has to be gathered together. Alot of people will say "wow 4wks to wait for an appointment is nothing". But it will be a year since I was in the hospice where I was given just days to live. I don't have the luxury of being able to wait around for 4, 5, 6wk appointments anymore. I've waited upto 8mths before for appointments and there was no way around that and I just had to wait and that was that and it looks like this is the same. I have done my fair share of waiting and I understand why you have to and I'm not an impatient about it, I just know that time isn't on my side anymore and should I get listed I could be in for a anything upto 4yrs wait for a donor so I'm conscious of that also. 4wks is the best, the earliest they can do, I accept that and I will wait, you know what they say about good things?...
I think my mum was more upset about it than I was. We had expected earlier but I had been told it would be weeks before we hear anything so I had braced myself for around the 8wk mark. I think more than anything I'm just grateful I know when it's going to be and knowing that things are happening without me having to poke the stick. Something I've always done and something I believe in the NHS that at times saves you from being just another file they brush to one side. Also the plan had been to see the surgeons after the review in clinic so I may not actually go active (provided there's no medical reason I shouldn't) until after I've seen them. If it's a yes I can go on the list that is, we don't know for sure because the results are still being collected from the assessment. And then I will have to wait for another 6wks+ to see the surgeons, to do chest measurements and final paperwork etc.
So there you have it. I could be looking at another 12 or so weeks for everything to actually be tied up and done with.

Waiting to wait...

As the title says, I spend my life waiting. Right now I'm waiting for the results of the assessment to come through which ended now well over 10 days ago. The story of my life! Then I'll have to wait to see the team in clinic for a discussion of the results and hopefully an answer.
I have a few things going on at the moment and I'm overly, stupidly tired. I haven't been able to keep up with physio not because I'm too out of breath just because I haven't got the energy. I have never felt fatigue like it but I think its just of those things that comes in the package. I am waiting (yes also) for a referral to the regional non-invasive ventilator (NIV) team to go through because the NIV I use is over 15yrs old, sounds like a helicopter and just isn't upto scratch anymore, its so old that nobody knows what to do with it or how the settings work. I have been getting the distinct morning headaches and nothing compares, I think overall my symptoms would decrease a great deal if I was getting a good nights sleep on an NIV that was doing its job affectively but I'm not... This could also be the cause of how stupidly tired I've been of late.
I've also had a case of sinusitis (we think) that's lasted weeks. It was so bad at one point I was hitting my head against the wall and clenching my teeth. I've been popping Sudafed like smarties. When I went into hospital the transplant team put me on strong antibiotics for MRSA. Rifampicin and Trimethoprim, I'd been taking Ciprofloxacin at home for a few days but it hadn't really had any affect and if it's MRSA it wouldn't have, I guess I was hoping it would be a simple infection. I've had MRSA for many years now and never been clear of it since I caught it, the sinusitis is still there a little but is alot better so I'm starting to wonder now if I have it in my sinuses. It's in my nose, throat and has been grown in my lungs before so it wouldn't be surprising if it was. I may talk to the transplant team about staying on the antibiotics a bit longer because they have definetely helped. I also have some crap going on with a previously MRSA infected finger right now as well but thats another story. So that's my life right now, in terms of how long I'm going to be waiting for the transplant assessment results I really don't know, the blood results should be back this week then I have to wait to see the team so we can have a chat and decide...