A trip to the surgeon

On Thursday I made a trip to the Renal Clinic to speak to the surgeon about getting a fistula placed in my arm to set me up for haemodialysis.

It started off with a visit to the ultrasound department for a scan of both of my arms. Unfortunately the results weren't good; in the words of the surgeon my ‘veins are rubbish’! Only one vein was potentially suitable and that was borderline, and given it was on my dominant arm it was immediately ruled out. So, she suggested I consider peritoneal dialysis, but having previously thought carefully about it, I told her it’s not something I want to do given the restrictions it would place upon my active lifestyle. So, I will need to have an AV graft, this obviously carries more risks, but I think the trade-off will be worth it given a standard AV fistula is off the table.

The surgeon also suggested I should be placed on the transplant list immediately, to give me the best possible chance of a transplant before I need dialysis. Unfortunately, IT issues meant she couldn’t see my medical records, so had no view of the work-up that has already been done to get me on the transplant list. Inability to share information properly seems to be a common issue in the NHS; my regular treatment is via a satellite Nephrology clinic hosted by my local NHS trust, whereas the Renal Clinic is provided by a different non-local trust (which also makes getting to the Renal Clinic a total pain). More worryingly, she didn’t even have access to the treatment provided by the NHS trust that hosts the Renal Clinic.

The upshot is that I am going on the waiting list for an AV graft and there needs to be some sort of paperwork done to get me on to the transplant list for a kidney. Apparently, I need a referral letter from my Nephrologist, but perhaps more importantly the surgical team need to be able to access it. My Nephrologist was at the Renal Clinic that morning, but she had her own list to deal with, which is separate from the surgeon’s list. I’ll be seeing her in about a month’s time, so hopefully this can all be expedited then.

This coming Tuesday I will be going back to the dialysis centre at Crawley, I’m not quite sure what for, given that I have already had an ‘education session’ there. Hopefully, it won’t just be a re-run of the same material I’ve been presented with at that clinic and at the Renal Clinic.

The surgeon also raised the issue of my weight, and that I should try to lose weight if I want to avoid any related challenges to getting a transplant. I obviously agreed with her, but made the point that this isn’t as easy done as said, and explained the efforts positive and negative I’ve already made over the last decade plus. The fact that actual medical support has been rather underwhelming, and my previous tactics for weight loss are increasingly ineffective is a stumbling block (I think there’s a whole other post here). 

Back at the beginning of my diagnosis, the original Nephrologist suggested to my (then) GP I be put on Orlestat, but the suggestion was ignored. I did get a referral to a dietitian at one point, but that was a waste of everyone’s time, when I told the surgeon the dietitian had basically told me to eat yoghurt for breakfast and printed off some generic fact sheets from the NHS website, she just laughed and said that’s ‘what they do’ and that basically dietitians are ‘still stuck in the 19th Century’. Anyway, I have emailed my GP and got an appointment to discuss what genuine medical support might be available. My experience over the last decade has left me with low expectations, the NHS talks big on obesity, but rarely seems to deliver. Maybe I’ll be pleasantly surprised, if they refer me to a dietitian again, or one of their talking shop support groups I’ll politely decline, I just don’t have the bandwidth for messing around.

And so we move on, if not necessarily forward!