Trying to catch the deluge in a paper cup

So the many, many appointments of the past few weeks have finally come to an end and there is a plan in place.

On Tuesday I went to see the Urologist who would tell me conclusively whether there was anything wrong with my kidneys. Previous to that I had an ultrasound, a renogram and a contrast CT scan performed so he had the full range of scans at his fingertips as well as the blood results to gauge whether my kidneys were functioning correctly. It turns out that they are indeed working just fine and so they discharged me back to the care of my primary carers in Haematology / Oncology at the Beatson saying that they can find no reason not to put me forward for lung transplantation.

As a slight aside the person who put the venflon in for the contrast material to be injected into my arm pre CT scan was nothing shy of a butcher. She couldn't find a vein on my right hand so then proceeded to basically root around my left wrist until she found one, and almost certainly hit some cartilage as it's still sore over a week later and the ridiculously large bruise she left is only starting to diminish now. She left me looking like a careless junkie. She was a senior nurse as well so I had expected it to be easy as all other nurses and doctors previously have commented on how good a state my veins are in considering how much they've been abused over the years. Turns out seniority doesn't mean you're good at the practical stuff. I've found over the years that the oncology nurses are the best at taking care to preserve your veins as they know they'll need them later - others aren't so careful.

So, getting back to the point in hand, I have been given the all clear by the Renal and Urology docs to proceed with whatever course of action the transplant team want me to take. That is to say I've to take the full therapeutic dose of Cyclosporin that I would need to take post transplant and then go down to Newcastle to see if it does affect my kidney function with a repeat of the GFR (Glomerular Filtration Rate) test that highlighted a possible problem with my kidneys the last time I was down. The Glomerulus being the first structure for filtration of blood into urine found in kidney cells.

So I phoned the transplant co-ordinator and they are thrilled I've got this cleared up and I've got an appointment to go back down there on the 7th March. This ties in quite well with my other appointments. I have an appointment with the team at the Beatson on January the 9th where we can start the cyclosporin and tinker with the dose over the next few weeks until we can get the level of cyclosporin in my blood to maintain a therapeutic level of somewhere in the region of 250-300 mg/ml. To manage that I'll probably need to go twice weekly to get blood levels taken for a few weeks, especially because my weight is so different from when I was last on it. Trying to get the dosage right is paramount. Then I'll have a full month on that therapeutic dose before my daytrip to Newcastle and the repeat GFR test.

I'd be a liar if I said I wasn't relieved to know that there's nothing physiologically wrong with my kidneys under normal conditions but I'd also be lying if I didn't admit that I'm scared that adding cyclosporin to the mix  will result in finding my kidneys can't tolerate the demands put on them by the anti-rejection drugs.

Still time is passing quickly and March will be round in no time. I have a good few weeks now to enjoy the holidays without any appointments to go to after the previous deluge.

A winter's day, in a deep and dark December

The next few weeks are about as busy as I've been in two and a half years and it's all down to the wonderful work of the Renal doctors in really pushing for me to be seen quickly by the Urology team. After having sorted out the mishap in planning that would have me in two separate clinics within the same hospital at exactly the same time, I've rearranged one that allows me to do the two in one trip.

So firstly I have the dreaded pulmonary function tests and then the Urology clinic. I really would have liked to be able to have rearranged the Urology clinic because next Thursday I have a kidney contrast CT scan that would have extra information for the Urologist to have at hand but unfortunately this wasn't possible. They will at least have the previous ultrasound and renogram of the kidneys to work from so it will still be a worthwhile trip but it would have been nice for them to have the whole story. On that point I received the contrast material (mildly radioactive isotope) through the post, which I found profoundly odd.

That weekend I have a family Christening to go to and then I have a trip to the Respiratory consultant to see if his feeling that my respiratory function will have improved from my weight gain has borne out. I will also see if he has found the muscle stimulating pads that he thought I could use to try and turn the weight I have put on in fat form into muscle because I can't do it through conventional exercise. The pain I have been experiencing in my muscles apparently isn't necessarily down to muscle atrophy but is a side effect of the Statin drug I have been put on to bring down my cholesterol (which is too high because I feed myself with liquid fat). That actually ties in quite well as the timing of the muscle pain fits with my starting the Statins.

The following weekend I have another Christening to go to. I really, desperately hope I can manage to go to the non-hospital stuff because I really need a trip out the house that doesn't involve blood removal.

So, the last six weeks have involved more progress than the previous six months, a fact I recanted to the lung transplant co-ordinator when she called for an update. They really are keen for me to progress and I have to say the phone call made me feel exceptionally upbeat about my prospects.

This is my only escape from it all

I watched Children In Need on friday night. I don't normally do this because the enforced jollity of the 'fun' bits I've always found incredibly cringeworthy and the serious parts I feel are lost on me because I have a firm belief in charity being a very personal thing and I'm very happy with what I give to the charities I choose to donate to. That changed on friday when they played a film about a little 7 year old boy with leukaemia who needed a bone marrow transplant to survive. They found a donor on the overseas list but sadly the donor took ill a few days before the transplant was planned and it had to be cancelled. This brought back memories of my cousin who was in a similar position, with a donor match who fell ill and couldn't donate. In my cousin's case he had really aggressive treatment and recovered but in the case of the poor wee boy all attempts along the same line failed and he died aged nine. I was watching in floods of tears, not just because of the sadness of the story itself but because it made me realise again just how much of a lucky, lucky bastard I had been. From diagnosis to a successful bone marrow transplant for me was the grand total of ten weeks. Ten weeks from diagnosis to cure - that's incredible.

I was so affected by this film about this I had serious thoughts about emptying my bank account and sending it all to Children in Need but more sensible heads prevailed and I made a decent donation without bankrupting myself.

Today I went to the renal clinic hoping to find out whether the urology department had responded to the letter that had been sent requesting an urgent consultation about the small blockage in one of my kidneys and how, or even whether, it needed dealt with. Having had no response to the written word the renal consultant printed out my information and just walked through to the urology consultant and got him to deal with it, explaining that I was a rush case because I am open to opportunistic infection and want to get back down to Newcastle to see the transplant team as soon as possible. An incredibly simple solution that not enough doctors would have bothered going out of their way to do. So the urologist has organised a contrast CT scan of the kidney to see very precisely what needs done.

So, again it's slow, but steady progress. Pretty pleased with it though.

I get tired, and upset, and I'm trying to care a little less

According to a character in the film Contagion 'Blogging isn't writing, it's just graffiti with punctuation.' This line clearly borrows from Truman Capote's critique of the book On the Road by Jack Kerouac, which he characterised as 'That's not writing at all, but typing'.

I've thought a lot about this because quite a few people have told me I should try writing something seriously and I just feel that while I can stumble onto some good points on occasion and make them quite well, I could never tie them together into something as coherent as a book. Not right now anyway while my brain remains as fuzzy as it does.

I also mention Contagion because it's about the spread of a global pandemic and just how easy it could spread in the modern world. It's made me realise just how close I was to becoming a mere statistic when I got swine flu. I was still feeling the after effects of fungal pneumonia when I caught swine flu so my immune system was already pretty ragged. Added to that I had viral meningitis at the same time and it is incredible that I made it through all that.

I've always been very keen to avoid addressing it when people define me as being strong because I've seen some of the strongest people I've ever met succumb to Cancer and some of those who took it less seriously get through it. I've never really believed it's about strength, but I'm coming around to the idea that there might well be something in it. My best friend Dave says I can't be killed by normal means. A lot of my visitors recently have commented on how strong I must be to cope with the slow progress towards the possibility of a lung transplant and I can't tell them they're wrong. I have been strong, although I would say that with the caveat that I can be really lazy at times. I worry I use the fact that I find things difficult for not even trying so I'm going to try and remedy that.

Immortality is ubiquity in time

So what have I to tell you?

Again I have had lots and lots of visitors, and while it is always a pleasure (especially those who have come from a different country), it is mentally exhausting. So now I've got a few days where I can rest up and just feel a little better within myself.

I mentioned the last time I posted that I was going to see the respiratory consultant but that it was merely to keep him abreast of how things were proceeding. It didn't turn out that way at all. I am now just shy of 63kg (9 st 12 lb in old money) so all the docs are happy with my weight, they just want it to be more muscle than fat. That's quite a difficult thing to achieve when you can't exercise because your lungs won't allow you to, so he's looking into another option. You know the things they advertise on telly that can give you a six pack stomach through electrical stimulation of muscles? Well they used similar equipment on a study a few years ago and it was quite successful so they're looking for the gear that will allow me a whole body version of it. This is also because I am now suffering from muscle atrophy because they're barely getting used. With the muscles wasting away I'm getting a dull pain in them too so anything that would improve that situation would be fantastic.

He also wants me to do another set of the dreaded pulmonary function tests. When I was at my lowest weight they couldn't get a reading from their machines because my lung function was so low. Apparently though not all of that is down to damage to the lungs but some of it because I was so underweight. So theoretically they'll now be able to gauge much more accurately the level of damage done to my lungs. Yay.

I had them done when I was in Newcastle so I know I'll be able to adequately provide them with all the info they're looking for but I do hate them so. Having people shout at you to breathe out just that little bit more when you already feel you're about to flake out is just grim.

Oh aye and today would have been my dad's 67th birthday. Still miss him every single day.

You're so blind you flounder drowning

I've had a brilliant last few weeks. I got out to my niece's christening - I missed the last one because I was too ill to go and I've felt bad about it ever since. Seeing so many family and friends in the one place is always great. So many of my cousins have children of their own now as well so it was all very civilised but it was so good to see them all. I didn't even feel terribly tired after it.

On top of that my best friend has been home from Sydney and it's given us a chance to really catch up. It's not that easy to communicate all the aspects of my treatment through the medium of Skype so sitting him down and explaining it all was very much needed. It was also just nice to sit and talk about all the usual nonsense we do. I miss the fecker greatly, as I've mentioned here before.

In between times I've kept myself busy by building a rather large lego set (~3100 pieces). It is the Super Star Destroyer from the Star Wars films. I already have the normal Star Destroyer (which somewhat ironically has more pieces) so this was the next logical step. It cost a lot but I don't have anything else to spend my money on so I thought 'why not'?

Here's the various stages of development.

Stages 1 & 2

Stages 3 & 4

Stages 5 - 7 Complete

It's 1.25 metres long and took me a week to build. The other Star Destroyer took far less time but this one was much more fiddly and I couldn't get comfortable when building it so did it in little stints. Being honest my concentration wasn't up to much either so doing it in little sections was the best way to go. I know it's really geeky but it is genuinely awesome.

I'm also in a really good mood because I'm getting some great visitors this week. Today my mate Olly was going to come through to see me before he moves to Amsterdam on Friday but he's had to reschedule to Thursday due to taking an unfortunate tumble in the park yesterday. I've also got my friend from Uni Yvonne and her wee family coming at the weekend, which I can't wait for.

In between times I've got a trip to see the Respiratory consultant, but that should just be a quick appointment to keep him abreast of progress towards transplant.

You've gotta see her

Today there was a happy wee rite of passage in the Kilday household. My wee niece Chloe came upstairs to see me and she helped me with my medication. She's only 15 months old but she handed me bottles and blister strips for me to count out. All the nephews and niece before her have done exactly this when they've been as young.

I sent the eldest niece Maria a message on her Blackberry to let her know that the wee yin had taken over what she started about a decade ago. When I was recovering after my bone marrow transplant Maria lived only a hundred metres or so away and so would spend lots of time with me, helping me gain strength and just keep me company. She took it upon herself as a two year old to start counting out my tablets for me. She never, ever looked upon them as anything other than helping her uncle Paul - these were never looked upon like sweeties, which considering the steroids I was taking were bright red, sugar coated pills, was hugely impressive. Somehow she just knew the difference. I sometimes wonder if it was reckless of me to allow her access to this stuff but it never became an issue. It never did with the boys (my two nephews Daniel and Ewan) either, with the most amusement coming from dissolving co-codamol in water for me. They have all referred to them as plunk-fizzes.

Maria's now at high school and she never fails to amuse me and thrill me with how she carries herself. She's the kindest, brightest wee soul you could care to meet. If the others come close to as impressive as my wee pal is then we can all be very proud of them.