First day back blogging, first day of a new year.

Finally a return to blogging. Hopefully a better, more efficient, more productive, more inspired and qualitative and creative year. Or that's my intention, and being that today is an anniversary I'm trying to start as I mean to go on.

The anniversary in question is the end of the first year of transplant. The so described crucial year, where they start to (knock on wood) let you travel outside the country, loosen up how often they see you and generally the medical people treat it as a line crossed, primarily based on the statistics that most problems (more wood knocking) happen in the first year. And I've had a pretty good year - I might complain about some of the adjustments and I might genuinely have found it really hard to get back to normal because muscle mass just isn't the same, but no huge problems. No giant shocking complications like an artery detaching from new organ and almost bleeding you out. No strokes from a sudden uncontrollable rise in blood pressure, no painful and delirium inducing organ rejection making the whole thing a waste of time.

Pretty good. Wholely different from the experience of this dude:



Pastor Marrion P'Udongo is, as the video indicates, a fixer in Congo who helps everyone he can, the video doesn't even slightly touch on how many lives he's saved directly and indirectly in his work. And now he's recovering from a kidney transplant and not having a good time (as the updates on the indiegogo fund explain). It sounds like he's probably feeling so sick he wouldn't be as chipper as he was in this video:



On the other hand, he's a pretty inspiring guy, maybe he's even more chipper. His transplant has only just started working and only barely, and the fund to pay for his medical bills is down to about $500 - if they get the kidney working properly, after that he needs to pay for the medications that'll keep it going in the future, and that stuff aint cheap.

Comparison time. To keep someone on dialysis in Britian costs about £40,000. It is more economically sound for someone to be a transplant patient. Most people who hear that would think duh, it probably doesn't cost anything - in fact it costs upwards of 20,000 mostly because of drugs. I'm on three different pills, that's pretty small and uncomplicated compared to other patients with continuing problems, mine just covers stopping my body recognising the new kidney as foreign flesh and brings down my high blood pressure. One of the pills I need, Prograf, costs over a grand each time I pick up a couple of boxes. Maybe a month's worth. The other immunosuppressant costs slightly more than that. The cocktail of drugs I had to take in the first three months probably cost a lot more. Like everyone else in Britain who doesn't get all those capsules and pressed powder pills for free, I pay my £7ish per prescription title, and that's that.

So when they say they need a lot more cash to save Pastor Marrion, I believe it. This guy saves lives, seems a shame to let him die because his hospital might stop treating him and he might not be able to get any blister packs of shiny capsules. 

Now, usually I wouldn't write something like this on the film blog. I wouldn't tell people what to do, or demand that they care about something that might be wholely unconnected to their interests. Nothing is more offputting than being told you should care about something else when everyone has difficult stuff to deal with. But the guy saves lives. In different parts of Congo. On purpose, continually, just because it's the right thing to do. And that's seems worth shouting about - if I ever even saved one life, it'll probably be by accident, and I'm sure many other people can say the same. I'm not half as good as this guy, and my transplant is going well. Doesn't seem fair.

In commemoration of the one year anniversary Ant has been linking to the fund to raise awareness. And being that he's my donor and he did save my life, and even though he could stop caring about kidney failure patients he takes the time to care about this when I am shamefully oblivious until he told me, I thought I should try to holla about it as well -

Here is a TIME article about the Pastor's work: A Fixer In Need

And the indiegogo fund page:   The-Pastor-Marrion-Fund

If you don't find this post annoyingly preachy and demanding, go take a look at his page and see if you can donate something to him! He might not have much time.

And back to our regularly scheduled programming - next week will be foreign movie week, including some actually, for real blog posts about films! :D

Day Go All Wrong...

Been a funny day. I'm on another weird sleep pattern, caused by the first day I got the cold, about oooh... two weeks ago now. It was a really active time just as I got proper sick, feel asleep in the middle of the day and it's been like that again. Been mostly in the house ever since and sleeping during the day, researching and organising at night, but today I had a check-up so I figured I'd eat or drink my body weight in caffeine and try to stay awake. Didn't happen though :p  On the way back from the hospital I had one of my usual spiky energy periods where I listened to a bit of music (can't stop listening to Mystery Jets, which is genuinely strange - when I first listened to the album in question I hated it, accidentally listened to it last week and now I love it, no transitional period or anything) and started planning everything I could get done today. Of course within twenty minutes of coming in the door my cat start purring in my face and making dough on my arm and I fell asleep. So I'll be up again tonight I guess.

The hospital was amusing. Despite the fact that on a day to day basis I mostly feel a bit run down, bit tired, not loads of energy, it's odd to go there and have them tell me I have to have loads of stuff done to check that a load of stuff isn't going wrong. Today they told me I about the follow referrals:

1) Must see the head rheumatologist about me not being able to rotate my left shoulder, mostly meaning I can't lift the arm above my head, which though irritating is not that hard to compromise around day to day if you have to.
2) Must see a liver consultant specialist about why the toxicity that might have led to liver damage hasn't completely returned to normal after drug reaction. What else is not right affecting the liver? They ask me this but I don't know do I.
3) Have I had my bone density check? No - Did I get the letter and just miss the appointment or has it not been scheduled? No one's mentioned it one way or the other. Apparently that should have been done already. I assume because my pills lead to some bone density problems.
4) Have I seen a skin specialist yet? Also no, but at least I'm familiar with this one - the pills I'm on, given that they make your immune system mostly incapable of recognising what stuff is alien in the body and fighting it or pushing it out, it no longer recognises all those sun rays as bad. Apparently even though we're used to being told how easily the sun affects us, it's still related to the immune system and a lot more tries to damage the body that it averagely does. On immunosuppressants body stops trying to stop some of it messing you up, you become much more likely to get skin cancer.

That one I'm actually ok with. Back in ye olden days when they were introducing me to the transplant information I thought I was told that recipients are very likely to get BONE cancer. My heart honestly sank. The medical team didn't know about my extreme unhappiness for several weeks because I didn't tell em, I let them do all the usual transplant things; put me on the waiting list, start discussing possible donors, doing more tests, but deep inside that was the only time I felt a completely hopeless about the situation. In my head I was picturing a future of either regular dialysis for the rest of my life, or transplant but with regular discovery of bone cancer and the treatment that goes with it for the rest of my life, which didn't sound much better.

Bone cancer and skin cancer, not much in common. Bone cancer = happens invisibly in your body, effecting, ahem, every bone you have, one of the most painful things anyone can experience. Skin cancer = you wear big hats and go without bikini at the beach for the rest of your life, you wear sunblock on any exposed skin, and check your skin regularly, get used to what it looks like and report any change in pigmentation, or shape n size of moles. And, crucially, if you catch any changes, you go to the hospital, they take it out. Once I realised that's what they meant, I was happy as a clam in high water. I mean, I'm really pale so I don't do sunbathing anyway, and even if I did I'm not exactly Rhona Mitra, so it's not my scene. And I like hats.

And on that note (Rhona, not hats), the other consultation is to see a dietician (referral 5!) so I can discuss the best ways to lose weight, tone up, build muscle. You know, the whole scientific attitude to body building? I want to do that!

Yes, I am throwing myself wholeheartedly into becoming one of those people who knows about all that crap, the stuff to do with eating protein before a half hour after your exercise session has past, about slowly working your muscles for the first half hour of said session because in that time your muslces are loose enough to effectively work, about when you'll be burning muscles instead of fat, blah blah blah.

Pretty girly :D  I blame the massive photo file we found last week. I was looking through all my printed photos, about 3000 photos on one harddrive and then Ant managed to pull some stuff off a broken harddrive and we found another 4000. We were mostly looking for the Japan pictures (obviously, like everyone, it's on our minds) but I found some of me I haven't seen... in a long time. And I've always been either thin and scrawny, or swelled. For a couple of years as a teenager I was really strong and fit, but it soon went. Then during all this stuff, you get that wierd effect of your body weight having nothing to do with stereotypical eating stuff, and you realise when the issue becomes what you're eating and how much exercise you're doing that in comparison that should be so much easier to control. AndI think I'd quite like to try toned, and between the doctors telling staying trim is always good cos transplant patients have a higher chance of getting diabetes, my muscle mass is crap because of dialysis, I'm definitely twice the size I used to be and I felt better when I was on a no sugar diet, I think if I start obsessing at least I can argue it's all grave n important, not girly n insecure...