This is the longest period I've went without actually putting something in the blog and it's really remiss of me to do that because people might worry than something has gone wrong. I'll not do it again.
I don't have any great reason for not posting anything other than the fact I couldn't get my own thoughts on the looming trip to Newcastle for the repeat test on my kidneys clear in my mind. I was very calm about it mostly but just every now and then the enormity of it hit me that if my kidneys potential inability to deal with a full dose of the anti-rejection drugs I would need post transplant was to come to pass then I would have no other options and would have to consider what I could make of my life.
So the repeat test last week was the only part of the 4 day assessment I had gone through at the Freeman in Newcastle last June which I didn't sail through so it was a concern, but all manner of investigations into my kidneys could only find a recurring peak in my creatinine levels. Both the Renal and Urology docs could find nothing physiologically wrong with the kidneys so they put this anomaly down to an intermittent blockage, possibly caused by dehydration.
I was very nervous going down but the staff there quickly put me at ease, although they did tell me they were going to do lots of other tests too while I was there to see if I had deteriorated since I seen them last. The exertion test I didn't manage as far a distance as the previous time but that can be put down to the fact I'm getting oxygen at 1 litre/min now compared to the last time when I was on 2. It was reduced because it was causing me to retain carbon dioxide in my blood. So blood gases were also checked to see if a difference had been made by reducing it and indeed it had. Arterial blood gas samples are notoriously difficult to get because there's so many tendons and things in the way on your wrist (this is why many people who attempt suicide by cutting their wrists don't actually manage to get the artery) but I have a freckle on my left wrist which is a good guide for them and I don't really feel the pain of it anymore. It's really no worse than getting a tattoo done. My oxygen saturation in my blood is down but again that's because my oxygen was decreased. It's at 86%, where it had previously been at about 90%. No big deal really.
Being in Newcastle I got a visit from my friend Annie, with whom I did my PGCE in my time in Liverpool. The time just flew by while she was there, which was great at taking my mind off how big a few days I was having. She also brought me fudge and a 6 pack of creme eggs, which I gave to Kirsty the transplant co-ordinator as it was her birthday. She's been absolutely brilliant to deal with through all of this.
I also had the Social Worker come in for a wee chat to make sure I was fine and that transplant was still the route I wanted to take which was also lovely.
The GFR (Glomerular Filtration Rate) test itself was done on the Thursday and it pretty much went without any problem. It's just a matter of injecting you with a radioisotope in one arm and then see how quickly the kidneys can filter it from your blood by taking measurements of it in your blood at two hourly intervals. Unfortunately due to a bit of a scheduling problem the transplant team were going to have their weekly meeting to discuss all the patients' status before the final sample of blood could be taken but I would get the results on the Friday.
After their meeting the team came round and were incredibly positive about everything else and said that the only barriers now to my being put on the active transplant list were the results of the GFR and, because of my family's colourful cardiac history they want to do an angiogram, primarily to satisfy the surgeons and anaesthetists that I would be safe to operate on. They concluded that they would probably do a contrast CT scan type of angiogram rather than the more intrusive procedure where a probe is injected into the groin and manipulated up to the heart to determine how well the heart is working. They said this was a formality really because I am young and, up until they started pumping high fat liquids into my stomach overnight, I had low cholesterol and essentially a pretty good diet.
So we came home not knowing what the main test I had gone down for was showing but I was curiously relaxed about it at that point. There wasn't anything I could do to affect the outcome so why waste energy worrying about it. Then on the Friday Kirsty called to say that because the test had come back as being borderline to what they would accept they were going to run it again and just regard that one as inconclusive. She also told me that even if the test wasn't quite right we were going to continue doing it until we got the result we wanted, but that I could just get it done in Glasgow rather than travelling down for it, which was massively reassuring. When the whole team had been in on the Thursday I got the feeling they were all desperate for me to get the result I wanted because I had been through so much and had done everything asked of me without question. They really were rooting for me. The calmness I had on the way back up the road was gone though - even though the situation was the same and I couldn't do anything to change things I had a very stressful weekend waiting for Monday to come round. Sleep did not come easy.
As it happens I had my monthly jaunt to the Beatson to receive my transfusion of immunoglobulins on the Monday morning so I had something to take my mind off the wait and it wasn't long after I got home that Kirsty phoned to say that the repeat of the blood tests had shown that I was well within the range they find acceptable for transplant. She then told me she was so happy she was away to have a creme egg to celebrate. I just burst out laughing, but in all honesty laughing was the only thing keeping the tears away. I was so relieved I can't begin to put it into words. A massive weight had been lifted. My mum phoned my wee sister at her work and she really did start greeting and I left it up to my mum and my Uncle Stephen to spread the word through the family, which it did like wildfire. I've had so many messages of support from friends and family that I can't thank everyone individually but rest assured I am a very thankful young man for all their thoughts.
Now we just need the angiogram done, which will hopefully be soon and then I can go on the active list. It's taken nearly three years to get this far so I'm not in any real rush. It'll get done when they can get it organised. I'm back to being calm again.
And so now I can come off Cyclosporin, which will be lovely, as I would hate to have gone through all this only for it to cause damage to my kidneys while I wait for transplant. Being on it also means I have to take lots of other drugs and it would be nice to have a much smaller drug regimen for a while, just to give my body a break.
