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.