|Just because it's my favourite card|
I've just had my 2 and a half year anniversary since my transplant! Hell yeah.
I've tried to stop thinking about how much (or how little) I have achieved in that time, to stop comparing my journey to other people's, as it's utterly pointless. I'm happy about how much i've achieved, also annoyed that I haven't done more, but I guess most people are like that, always hoping that they could've done more with their time, to squeeze every second out of every year, when in reality it isn't always possible. I love downtime as much as I love exciting adventures, and I guess looking back i've had a mix that has suited my health well.
I thrive on being active - the times i've been working i've been extremely well and have felt fantasic and full of energy, but that energy is finite, and after a few months I need to rest. I've been kicking myself a bit for not having found a full time job yet, but realistically I don't think my body is up to full time, even now. I'm wondering if i'll ever have the energy to work full time for a long period of time, because after 3 months if I don't stop, I know i'll need IV's. So after 3 monhs I stop, rest, and start again. And i've been doing really well with that.
I've been off work now for a couple of months, now applying for jobs and paid internships again, mostly in Literary agencies which I am super excited about! I haven't been completely idle though, i've actually had a very exciting couple of months. At the end of my last stint at Penguin, I asked my first boss, Joel, who is head editor of Penguin General, if he thought this book I had created had potential, and if I should consider doing something with it.
The book is a DIY Poetry book - a sticker book to help create your own poems, like fridge poetry meets Wreck This Journal. I made it at Chelsea Art School, and it has been a part of my household for ages, with visitors and friends coming round and writing poems using my book.
Joel loved it, and put me in touch with some publishers who may be interested, including the poetry guy at Penguin.
The two publishers I met with both loved it too, asked me to expand it, and at this moment in time I now have been made a potential offer, and am just waiting for feedback on how we could physically create this. It's incredibly exciting, and am hoping this may actually be something that comes to fruition in the near future!
My health has been rather up and down - I always struggle in the summer - my puffers don't seem to like heat or humidity or pollen, which the english summer seems to throw at them in buckets. I've been very tight and sticky, with my nights taken up by coughing and tossing. My lung function (Fev1 ie indicator of tightness) was down at last clinic, but i'm not too concerned as autumn is only round the corner *is shot for mentioning the A word*. My liver is great, however they have found a blood clot in one of the arteries they made to join up my new organs (booooo!). Addenbrookes started me on aspirin, contemplated warfarin and settled on heparin, which I now inject once a day.
The heparin however made it so that my lady time of the month didn't stop when it was supposed to - altogether it's lasted just over 6 weeks now. As well as feeling absolutely drained / dead, I was unbelievably pissed off, as we've spent a year trying to steady my cycle to once a month rather than twice a month / 3 times a month / whenever it decided to show up, which now has been completely shot to pieces. A weekend trip to A+E after the GP was utterly clueless of what course of action would be good resulted in finally getting booked into the irregular menstrual clinic, and a top of iron and fluids to tackle my tiredness and dodgy kidneys. The gynae time I saw on the ward were still a little stumped, as the course of action they would normally take (to stop or regulate periods) were completely out the picture as they would make my clot worse. Hopefully the specialist consultant i'm due to see will have an idea. They started me on a hormone (progesterone) for now which should help, though they agreed with my concern that the tablet is more of a band aid that a solution. It'll be interesting to see what the Consultant of Women's Silly Bits says.
In (slightly) better news, my anti-fungal tablet Voriconazole, which i've been trying to get changed for the fucking longest time, as finally been switched to the slightly more expensive posaconazole. Vori has given me a host of horrible side effects, including the actual inability to step outside in the summer due to burning my skin off (almost) and bursting into flames, even with factor 50. Being on immuno-supressants increases your risk of skin cancer, so I was very keen this summer not have that problem (after all this she dies of cancer?). Vori is also the root of my chubby steroid looking face, which even though is not a cause for change in the eyes of the Brompton, is a huge concern of mine. Apparently when vori as taken with symbicort inhaler, the two drugs create a steroid effect - mainly the accumulation of fatty deposits in the face and body.
Thanks to the amazeballs Su Madge, I have now been on posaconazole for a week, and my chipmunk cheeks have already started shrinking (my stocks!), and i've been out enjoying the summer without transforming into a nicely done lobster. I'm absolutely over the moon! I think the tablets are making me feel sleepy, but the dose results will come back soon, i'm hoping they may just need lowering.
Medical palaver aside, i've had a fantastic summer so far, full of fun and laughs and wine, outings and films and lie ins and Netflix and pizza. I've also started Tai Chi, as part of a clinical trial through the Brompton. I had my first lesson yesterday, with an into tai chi and why they are doing the trial. My instructor was telling me about his excitement that he's finally able to try some homeopathic medicine in the NHS, as it is something very overlooked. The emphasis is mainly on feeling at one with yourself and surroundings, with breathing and posture being a huge element. Anything to do with deep tummy (not upper airways) breathing and creating a solid posture (opening, relaxing) can only be a great thing. It is definitely something I feel hospitals don't focus enough on, physios especially - posture is a hugely important in how easy it is to breathe, and CF seems to breed bad posture, which is so detrimental to lung function and day to day activity. I hope this Tai Chi may help break that cycle of bad posture, and in turn keep my lungs open and relaxed. I can't wait until my lesson next week! (I guess that's still quite medical for my non-medical section! As is my life...)
|TAI CHI FREE TOP! PANDAS!!|
Hope everyone who reads is having a lovely summer so far too, and isn't too depressed by the size of queue to get into the Nat History museum or the amount of tourists on the tube.
|SOUTH KEN DEATH|