Sunday, 28 February 2010

brief update

So long, so much to catch up on but I'll try and keep it as brief (and as painless) as possible.
Las week I got to attend the NHSBT roadshow in Manchester, great day but you can read more about this here. Lots of sign ups, lots of press. On Feb 22nd I celebrated my 22nd birthday. If, a few years ago, someone had said to me I'd be alive at age 22 in 2010 I'd have laughted at them! But I am still here and was able to celebrate and hope to be able to celebrate many more.

We marked the occasion with a 5 day break to Center Parcs in Sherwood Forest (thankyou for my bottle of wine and box of Chocolates CP!), just the break I needed! Paying for it now lung wise but it was worth it, no doubt I will get a telling off at clinic on Tuesday but hey ho.Celebrating at Center Parcs

I was recently offered a place at the charity live life then give life as a patient ambassador. I knew Emily when the charity was just an idea that started off so small and she was on the transplant list herself waiting for lungs, to see how far they've come is amazing and I'm honoured to be an ambassador, along with the lovely Tor for them.

As you may have noticed my blog has had a facelift! Yay for Louise at Adori graphics! What a wonderful job.

I've been thinking recently what I'm actually going to do post transplant? Something I've never really thought about before because it's taken me so long to actually get on the list, it's kind of "well what now?!" So I've been having a think and I've decided to start driving lessons, my first lesson is on Wednesday! Eek! Provided I'm actually able to handle a car (apparently driving can make some lung patients breathless?) I'm hoping to do a crash course. Also I've been thinking about education and what I'm interested in, I left highschool with minimal GCSEs having done them in my hospital bed. Graphics exam + IV salbutamol and steroids = Not good! So I'm going to look into open university courses and if they'd be right for me.

That's about it in a nutshell for now, have a look round my blog, there's new videos and media articles up.

Thursday, 4 February 2010

Freedom and new friends!

Where has the week gone? AGAIN?! My life has never been so busy, I keep looking at my diary 'ah calm week next week' and yet it still doesn't happen. To be fair if I had nothing to do I'd be complaining I was bored so even though it's hectic it works, mostly.
On Tuesday I went to ventilator (NIV) clinic, to what was, unknowingly going to be a long appointment. My ventilator, VPAP has been a little gem. I realise some people reading this may not understand why I actually have to use an NIV. I'm in end stage respiratory failure (Type 2) due to my lung disease. My respiratory muscles become very tired very quickly because my lungs are stiff from permanent scarring this makes it difficult for me to physically inhale and exhale because I can't exhale to full capacity I have something called air trapping in my lungs. Small airways collapse and trap pockets of air all over my lungs, these pockets contain the waste gas carbon dioxide (co2) which is eventually dissolved into my blood stream to gives me high co2 levels (hypercapnia). Along with this when lung tissue is scarred the ability of that tissue to put oxygen into your bloodstream becomes impaired. In a nutshell I end up with inflammed and scarred airways/lungs and low oxygen levels, scarring makes them stiff so airways collapse which causes air trapping that in turn causes high co2 levels. Phew! That's where NIV comes into a big piece of the puzzle. Although it cannot repair the scarred areas of lung because nothing can it helps me to use my lungs to the best of my ability by taking breaths for me. It keeps airways open so minimises airway closure/collapse so air trapping occurs less and that lowers my co2 levels. It also takes the strain and muscle fatigue off me giving me a break from working so hard to inflate damaged lungs. Physics lesson over to sum it up it makes me feel great!
Now although my VPAP has proven to be doing it's job unfortunately as my lungs have deteriorated over the last couple of months I have been more and more NIV dependent and the only battery option to allow me to leave the house on VPAP was external and weighed around 35lb. It was just impossible. So I went to clinic on Tuesday to look at other options. My NIV nurse called me in and told me to get comfortable because we were in for a long morning. Out my earrings came and the fun and games started. She clipped a transcutaneous blood gas monitoring probe, a fancy little gadget, to my ear and was able to bring up my blood gas (oxygen and co2) levels on screen. Having this type of monitoring and blood taken from my earlobes is something I'm used to. Earlobes are used because alot of arterial (oxygen rich) blood flows to the earlobes and so that gives a very accurate indication of whats going on in my arteries and more importantly my lungs. Although this is something I'm used to it isn't as widely used as maybe it could be because the cost of the monitoring equipment is very high, the alternative is arterial blood gases taken from a main artery in the backs of your wrists, elbow creases and feet and that is as painful as it sounds. So with my blood gases on screen I was switched to a different ventilator. A Nippy 3+. At first I panicked, it wasn't what I was used to, it seemed jumpy and jittery and was throwing breaths at me when I wasn't even wanting to inhale. We had a few teething problems with my oxygen levels dropping but nothing out of the ordinary for me. Once settled my NIV nurse took a blood gas from my ear to ensure the monitor was reading correctly and we were good to go. I feel almost privileged to have such an expert and supportive respiratory team on my doorstep, some people are not so lucky. We stopped for coffee in the cafe as I was shattered and my transplant consultant was, I presume, on a lunch break and we bumped into him there. The doctor-patient relationship has gone from strength to strength recently and I could not be more pleased about it. He gave me a pat on the back and told me to hang in there, something that if I could have for seen him doing 12mths ago I'd have laughed.

The Nippy is already proving to be a great piece of kit and with the confidence I had roughly 5hrs battery life (thanks to the on screen calculator) I arranged lunch with a lovely lady I have been meaning to meet with for a while. Holly Shaw. Holly is the northwest advocate for the charity LLTGL and has had a kidney transplant. She is amazing and has done so much for organ donation, scooping a Vinspired award last year for her dedication to raising awareness for organ donation. We made it out for lunch to Frankie & Benny's and spent alot of the afternoon giggling. I did have to politely remind her though that candle lit dinners were not a good idea when she suggested lighting the candle on the table... Oxygen + naked flames = BOOM. Her 'Hollyisms' (like blonde moments only worse!) were fantastic and I hope to hear many more of them, I have a new photo album to fill with our antics ;-)

Next week I have a bit of a line up too, topped off with a small bit of plastic surgery on one of my fingers to repair a nerve. Nothing major but it will see me in a splint with stitches for my birthday, super!
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