Thursday, 29 August 2013

Burying my head in the sand

Well I have a date for my 3 day tx assessment through... they did offer me one for just a couple of weeks time which I turned down (too soon + Glen's birthday) so it's now the tail end of September. I'm kind of sticking my head in the sand for the time being though... in a way pretending that nothing different is going on, so I don't have to think about what it means. If I do start thinking about it all, I get upset and scared!

Before then though, I have my flight test to see if the Docs will give me the OK to go abroad anytime soon, that's next week, and god help everyone I come into contact with if it doesn't go well.... I NEED a holiday after all the crap that this year has thrown at me! also, if I do go onto the tx list after this assessment, I can't just up sticks and go on holiday in case I miss my call... potentially I could never have a foreign holiday again, if I don't get my call before it's too late. (Nice and doom & gloom aye?!)

I am also going and having a short trip to stay with family in Cornwall. I haven't been down there for about 10 years, so really looking forward to that, will be nice to have a few days away, but would have preferred it if Glen could have got the time off to come down with me as he's never been... we might have a sudden increase in UK breaks once I'm listed so I'm sure I'll get him down there sometime soon!

Hopefully I have a few things planned over the next few weeks to keep my mind occupied (also just bought some craft books with the intentions of making deccies for Christmas etc) so that I don't think and get too down about the spiral my health has taken downwards :( Ho hum.... dinner time!

Random arty shot I took of a staircase in Glasgow- my brother and his girlfriend are at the top... thought it was good symbolism of my spiraling health!!

Wednesday, 14 August 2013

Post tx review

I've decided that with every post there will be a picture, it might be related to the post, it more than likely won't be! I just wanted to have something, so it's going to be pictures!!

I guess from reading other CFer's blogs, typically following them along their transplant journey (and beyond) it got me thinking about starting a blog of my own... not so much because I lead an exciting life, or even a remotely interesting one... but just for somewhere that I can kind of 'chat' things through with myself in a more sane way than just sat talking to myself in a corner (while hugging my legs and rocking probably!) I think deep down in my heart, I knew that by starting this blog when I have, it would probably end up becoming MY transplant (tx) journey, but didn't really want to admit it to anyone as it kind of feels like I'm giving up and resorting to the fact of it.

Anyhoo, I've had to do a lot of thinking over the past week, and I hate thinking! Last Friday saw my tx review appointment, 3 months had passed already! Last time around it was pre-peg and before all the silliness my body decided to go through... so they were perfectly happy just giving me an active monitoring status, nothing needed doing and come back over the summer... since then, despite having put on practically a stone in weight, now I'm on o2 all the time I knew which they would view as the more important factor. So Glen and I rock up, having had a partially serious talk about it on the journey, hoping they'd say have another 3 month review, but dreading they'd go with an alternative... more scary option. That's right, the scarier option was suggested... they would like me to go in for the 3 day assessment. It's not an out and out, you will go on the list from that assessment, but it's to prep and to see a)if tx is viable for me b)if I'm at the stage where they want me listed. The whole process has suddenly become a lot more real for me.

I'm terrified at the thought of it. I also feel strangely like I'm letting those around me down by giving up on my own body... I know it's a stupid thing to think, but I'm kind of ashamed to tell people that I'm at that stage. I don't feel like I'm there both mentally and even physically... you hear transplant, and you think of someone really poorly, not able to do much and that ain't me! I'm still working part-time, I'm still going to the gym, going swimming (8 lengths this week!) and other things that don't cause me issues... I'd feel a bit of a fraud and a queue jumper if I went on the list and got the tx before others who have been waiting for a long time and genuinely needed it more than me! But I don't want to rule it out now and potentially miss the boat and get too ill for the tx to be possible. Arg... no-one will make the decision for me either :(

It all just makes me think about the things I want to do and places I want to go, and then I get really down thinking that they will all have to wait until that magical post tx time (if it ever comes around as there is a severe lack of organs and donors out there) and even more scared that they could be things that potentially will never happen. I know once you're gone, you're not going to be able to care that you didn't visit a certain place or do a certain thing, but in the time before death, you can begrudge others doing them and get sad that you can't.

Mentally I'm in a downward trend atm... i know it's not healthy and it doesn't help anything, but I can't help it. I'm scared and upset :(

In Barbados, if it wasn't for my health, I think I could easily live there!

Monday, 5 August 2013

Trying to be positive

Despite our house sale falling through very last minute I'm trying really hard to not get too down about it. Yes it was our perfect house we'd found (and could afford!), and yes we both desperately wanted to be out of our current flat... but it simply wasn't to be. I saw a psychic earlier this year who told me that I would move house, but not this year... we wrote this off as wrong (at the time we were sold in a completed chain)... 2 failed chains later and with the prospect of having to unpack all the boxed belongings I think it is clear that he was right! Make of it as you will, but something, somewhere was making it clear we should be staying put for the time being!!

On that note (and trying NOT to be too jealous of other people I know who are moving) I've been trying to think of things to raise my spirits, and things to make me enjoy my house and life again.

I'm set to do some house improvements... when I say I'm set to do them... I mean, I have planned for other people to do them while I sit back and see things get nicer! We have plans to move the living room around, redecorate the hall and stairs and generally make things a bit fresher. This I hope will make me happy to be her for another 9-12 months (hopefully no more than that!) Oh and finish off the garden a bit more, actually buy and lay the stepping stones we talked about last summer!

I'm also trying to be better with my treatments and exercise etc. I've managed 3 weeks of swimming now. My aim on that front is to increase the number of a)total lengths swam, or b) improve the number I can do before needing a break. Although this week I didn't improve on the total number of the previous week, I felt like I managed the 6 lengths easier and didn't end up with a splitting headache at the end! Bonus! Although 6 lengths might not sound too impressive to some, remember that I am on oxygen 24/7 and my lungs are only working at about 25% of the 'normal' set of lungs so for me, I'm pleased with 6, and am eager to get back in the pool again. I'm also hoping to actually make it into the gym this week too to work on some of the resistance program my trainer gave me a couple of weeks ago. I figure, doing swimming for cardio, and gym for resistance/toning is a good all rounder to try to prevent any further lung depreciation.

I'm back on my Tobi inhaler month, which makes things easier as it means I only have to do an inhaler twice a day, with 1 nebuliser in the afternoon, as opposed to 3 antibiotic nebs plus an additional afternoon neb (my Azli months) I'm far more compliant with the Tobi, but it also makes being compliant with the other afternoon neb so much easier.... I also feel better on the Tobi months so feel I can achieve so much more with my day, that positive mind set helps me get through some of the stuff I put off when on Azli- (I'm so much more tired and therefore grumpy!)

I'm busy researching holidays too... Having my Dad enquire about how holidays would be possible now I'm on o2 all the time got me thinking, and coincidentally I got a booklet through from my o2 supplier that same week giving advice about travelling on o2. I've found an option that makes foreign travel much more do-able... just need to work out the costs of it all... but am happy knowing that another Disney holiday is not out of the question now! Woop... although not for this year :(

I'm off to peruse the holiday brochures and figure out the finances to see where we can actually get to so we can have a proper chillax!

Oh and I got my I Live I give t-shirt last week, so here's a pic of me sporting it to show that I support organ donation.