How life changes with kidney failure and dialysis

[Chalky13]

I thought I’d start a thread for people to use as somewhere to get their thoughts out on what’s coming, what they are going through, or what they would like to pass on to others

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I’m planning on home HD, and the plan is to do this in the evenings after work, but that plan may well change if it needs to.

I’m mildly optimistic that it will run smoothly and I’ll be in our spare room 2-3 hours an evening. I’ll be ok needling myself each night and there won’t be any changes or lumps to my arm and fistula that’s been created.

But I’m realistic, and at the back of my
mind I am expecting it to be hard, certainly for the first few months, both mentally and physically. I’m also scared about needling and I will just have to push through that.

Currently I manage to walk 20-30 miles a week, but I am expecting that to change on dialysis. I also take my son to his football training and games midweek and Saturdays, so again think that might mean he needs to organise lifts.

It’s a lot to process and at times I feel hugely overwhelmed by it, but try to keep my focus on today rather than next month, or weeks down the line.

I have started reading stoic philosophy books and that helps.

I have also decided that I am going to use the time on dialysis as an opportunity now, not a hindrance. Whilst it’s going to be keeping me alive, which is a bonus, it’s also going to be hard.

So I am going to make it positive by taking that time to learn a new skill.

Having earlier this year moved into the transplant list, and I had 2 good friends preparing to be tested to live donors, things looked like I might be able to go through transplant this year.

At the time I lost my Dad, and the chance to get a transplant was positive.

Then during my tests, across 4 months due to missed letters between departments, I was diagnosed with prostate cancer. Too much waiting was mentally tiring.

So I was taken off the transplant list and the arm fistula procedure went ahead.

I am now on a stable eGFR of 13 since June, and waiting for dialysis to start, and in a weeks time getting the cancer zapped.

I was told this week at my consultant appointment that I will likely be off the transplant list for 3-5 years now, so at least I know what’s coming and I have to face dialysis for at least that long, which wasn’t the plan.

But it’s not something I can change, so we move forward and look to what we can control and deal with it as it’s comes

[dawn.maclean23]

Home haemo is the best decision I ever made on my dialysis journey! In the beginning it is a little challenging learning everything and building confidence but before I knew it I could pretty much do it with my eyes closed! I also do it in my spare room but I got up at 5am was on for 6am off cleaned everything away and at work for 11am​

[Marian59]

My gfr is 11 and was at 9 and 10 over the last year and my other results equally bad so all set for dialysis but have managed to keep off it by heavily restricting my diet ie I do not have any processed food my bread is always a 4 ingredient breads ie no emulsifiers or added rubbish I check every product I buy and eating out is hard as I ask to see the ingredients of anything like pasties bread used in so called fresh healthy bakeries so don’t generally eat fast food I have fish regularly I reduce my dairy I don’t have milk but have various soft cheeses as my dairy options I don’t have eggs or if I do I try not to have the yolk unless in a baked item that has no other processed ingredients

I stick to walkers shortbread biscuits range or similar as practically all biscuits have a processed ingredient and eat mainly fresh foods obviously cutting out all high potassium items like bananas spinach avocado tomatos potatoes although is I soak overnight the soak again the next morning cooking fresh water I will have some but rarely more than a spoonful when out for a meal I’m very strict but it paid off out

[Chalky13]

That’s really great and positive to hear about the diet choices. I am inspired