--- title: Rollercoaster days layout: post image: feature: header_ambulance.png --- There are lots of things that I have learned about kidneys and their functions since BK virus destroyed mine. Kidneys regulate potassium in your blood; they also control phosphate levels; they remove urea from the blood stream; they take excess fluid out of your body and blood; they produce the hormones that stimulate the creation of red blood cells; and a whole host more. Kidneys are the Swiss Army Knives of internal organs. Replacing kidney function in patients who have lost it is not straightforward. To transfer the entire contents of someone's blood stream to an external system that can perform those functions is far from straightforward. Patients need to inject EPO (the red-blood-cell producing hormone), take B12 and folic acid supplements, and a whole host of other medications that help to replace some of those functions. But the main thing is dialysis. This regulates potassium in the blood, removes excess fluid, and filters out toxins from the blood stream. In order to make this work, patients need some form of "venous access" that allows for big enough tubes to withstand the pressure of sucking out the entirety of your blood and putting it through a filtration system. One of the ways this is done is via a "central line". This is an unpleasant procedure where they stick a tube down a hole in your neck so that it ends up near your heart. I say unpleasant, but I suppose it wasn't _that_ nasty. It's just an ongoing pain. I still have mine, 18 months after it went in, and I haven't had a proper shower in that entire time. It's really important to keep this line ultra clean and free of water; an infection can be truly problematic as it's the main access point for dialysis. However, having this put in was nowhere near as bad as I had anticipated. The other main type of access is what is called an AV (arterio-venous) fistula. I don't recommend you Google these as some of the images are quite gruesome. But basically, what they do is to surgically fuse together a vein and an artery to make a "mega-vein" that is strong enough to withstand massive dialysis needles repeatedly being inserted. This surgery takes about 2 hours and is moderately unpleasant; I had it done in July 2023. The recovery is quite grim and my arm looked like a butcher's block for weeks. The idea is that, eight weeks after this is done, you are ready to start using the fistula and can lose the central line. All did not go well for me with this. We tried needling the fistula but the nurses found it impossible. As a result, I had a corrective second operation to fix the fistula in October 2023. I then waited a fair while before trying again to needle this, as I had a hip replacement operation in April 2024. One of the methods for this needling process -- which I am trying to learn to do on myself -- is called the "buttonhole" technique. The idea is that you use the same spot again and again and form a "scar track" into which, after 12 or so sessions, you can insert a blunt needle. Eventually, when using the blunts, it is less painful, less risky (in terms of infections), and easy to insert the needles. However, it takes a long time to form these tracks and if something goes wrong, you are back to square one. So far, September 2024 has been a wild rollercoaster for me on dialysis/fistula use. On Tuesday this week, we failed to get the second needle into my arm. I had to abandon dialysis in hospital (where I head at 6am every Tuesday and Thursday for now) and do it at home that evening using the central line. We tried again today on Thursday and I thought all was going well. I got both needles in their relevant sites myself! Yes! Mission accomplished! Except then, when it came to removing them, it took _over an hour_ for the site to stop bleeding. The nurse had just called the vascular surgeon to come to help by stitching it up when the renal vascular access nurse managed to get it to stop clotting using a seaweed compress. I went home with the express instructions that I must report to A&E if it started bleeding again. Obviously, I can't do this at home if it's going to bleed for an hour and require a vascular access team to come to help me stop the bleeding. But there are worse consequences. We can now no longer use the site where this bleeding occurred. It's simply too risky and we have to pick another spot. We must start again on crafting new scar tracks. I also have to have a fistulagram where they inject dye/contrast into the fistula to see whether there are narrowings and branches that are affecting the pressure too much. This will probably then entail more surgery to fix the fistula further. I was very despondent about this. I'd hoped for "home by Christmas" but it now looks less likely. The ultimate goal of all this was, also, to move to doing dialysis overnight five days per week, so that I can reclaim my days (about 25 hours per week). However, this afternoon, my lovely dialysis nurse called and we discussed the situation. She'd only called really to make sure that I had got home safely without bleeding out and hadn't needed to go to A&E. But I asked if I could start overnight dialysis at home using the central line... and she said yes. A definite win! Nothing in kidney failure and dialysis is ever a straight line. There are always detours, setbacks, and customisations/personalisations of treatment. But it makes it hard to be stoic. I always try to remember to hate the disease, not the cure (dialysis), but it can be very difficult when dialysis is the thing in front of you that presents itself as the target. I'd just really like a break. But there is no break from kidney failure and dialysis. It's there, relentlessly, because if you don't do it... your kidneys fail. So I'll keep on. It's just another setback. Just another obstacle. I'll keep going round them as long as I can.