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!    

Hiatus Over

After a near three year hiatus I’ve decided to start blogging again. A lot’s happened between then and now, and some of those gaps I’ll try to fill in future posts. There was never a formal decision to stop blogging, it was just time constraints as I put my life back together post divorce (I’ve hidden away some of the posts dealing with this period as nothing good will come from raking over them).

This blog was originally intended to document my journey with Chronic Kidney Disease, so that seems a good place to start. I’ve now reached end stage and I’m working with the renal replacement team on what comes next. Next month I will be meeting the surgeon to discuss having a fistula created to facilitate dialysis, but I’ll elaborate on this in a future post. From a health perspective I’m generally well, or as well as can be expected given my prognosis. Fitness wise things are not quite so great, having managed to get down to 100kg, my weight has crept back up to 110kg over the last couple of years. I still try to keep active, but it’s a challenge balancing everything. I’m determined to get things back on track over the next few months.

From a personal relationship perspective things are good. I’ve been with my partner over three years now, we’ve just come back from a fantastic weekend away in Somerset where we were looked at engagement rings. Our relationship isn’t without its challenges, we both have lots of commitments, busy careers, our own health issues etc, but what’s great is that we really value the time we spend together, whether it’s trips to interesting places (Canterbury, East Anglia, Istanbul, Valencia, Wells etc), visiting our respective families or just chilled weekends doing dog walks and trying out recipes.

My relationship with my son remains strong, there have been some ups and downs, but he’s doing good. He’s changed schools this academic year which has recently boosted his engagement (the old school had a big reputation it sadly failed to live up to) and after a couple of years away he returned to his old rugby club last season and is really getting back into it. The situation with my daughter has been a bit more bumpy, we’ve gone through phases where our relationship gets better only for it to take a set back, but I remain immensely proud of her, despite her own challenges which disrupted her studies she did really well in her GCSEs, she’s now at college, has a steady boyfriend and is working part time.

Professionally things are solid, my position as a development team lead was made permanent and there’s a good team dynamic going on. I’ve got some pretty demanding projects in-flight which brings a certain level of stress, but they’re growing me as a leader as well as developing my technical skills. 

Outside of work I don’t get as much time as I’d like for extra-curricular activities; I did write, record and release the first episode of an audio drama on Youtube a couple of years ago, but the second episode has been pending ever since. More recently I purchased an action camera so I can record some of the cool places my partner and I visit, so I’m going to try my hand editing and uploading some of that footage in the near future. I’ve no desire to be a professional ‘content creator’, I already have a busy career, but I do like the idea of sharing the stories and places I find interesting.

At the time of my last post I’d recently moved into my new flat and renovations were underway, barring a few snags they are pretty much all done now. I’ve almost entirely renovated the place and I’ve done a lot of the work myself, with some help from my partner and my parents. It’s been tough but learning new or enhanced DIY skills has been really rewarding; not forgetting that being ‘handy’ has saved me a lot of money I can put to other things. 

 

Anyway, I think that’s enough for today.