G’day from Oz – pre HD

[freddagg]

60 (almost) year old male from Sydney, Australia with diabetic nephropathy.

Nephrologist told me 16 years ago I would be on dialysis in “less than 10 years”. Shows you how much he knows (or doesn’t)! – lol (only joking, he is a good doc)

Current eGFR=13 so he wants me to start preparing for HD. Apparently PD isn’t an option due to previous injury/surgery. The fistula will be created sometime before years end. No definite ‘start’ date for HD as yet.
I will be home haemodialysis (we spell it with an ‘ae’ here). It is free – well nothing is ‘free’ – we all have to pay a 2% levy on our taxable income to run a national health and disability insurance scheme, which really is quite a good system.

Most likely scenario is 3 times a week for 5-6 hrs a session although they do say this is a minimum. Hoping this regime will let me continue working fulltime and give me ‘free’ weekends. Usually the first 6 weeks treatments are given in a dialysis centre (generally a big public hospital) to ‘train/educate’ you, thereafter will be at home.

Ongoing support is also provided by specialist renal nurses, social workers and psychologists if needed.

Most importantly, I have a very supportive, caring, willing, understanding and loving wife (who also happens to be a nurse!)

Biggest disappointment will be travel restrictions with treatments but we are already trying to organise around that. Watch this space…

Haven’t discussed transplant but don’t think it would be a viable option. Cadaveric donations waitlist is currently around 7 years here and other health issues at 60+ would (or should) probably preclude me. I wouldn’t want a living donor as I think it would be ‘unfair’ to the donor to give to someone who has a pretty good chance of dying relatively quickly. Now if I was 30, I wouldn’t have the same concerns.

Hope I have covered everything

Cheers
Freddagg

[Simon Dog]

Most likely scenario is 3 times a week

If you are doing it yourself at home, ask about a QOD (every other day) schedule to avoid that 2 day gap.

[iolaire]

Biggest disappointment will be travel restrictions with treatments but we are already trying to organise around that. Watch this space…

Welcome to the group. It sounds like you have a good grasp of what the future holds. I hope that information will prepare you for as smooth as possible transition to dialysis whenever it happens.

Re travel. I travel frequently for fun with my wife and continued traveling well on dialysis. The biggest limiting factor (beyond affordability) is that you will be more limited to major city holidays. So if you enjoy being in the wilds do as much of that as you can pre dialysis.  For example when we visited Chile we spent our time in Santiago rather than trying to visit Patagonia. Now Patagonia might be possible with dialysis but it would be much more harder to coordinate and also enjoy the outdoors with a trip back to the dialysis center ever other day.

[freddagg]

Most likely scenario is 3 times a week

If you are doing it yourself at home, ask about a QOD (every other day) schedule to avoid that 2 day gap.

I'm not sure about timing, I guess I will have to wait and see what works best but my initial thoughts are:
1. A two day break - it means I could have a whole weekend and not worry about needing to being back home "tomorrow"
2. I can plan my week better and have set appointments / activities on the same night each week. (What we should have is 6 or 8 day weeks - that would work better!)














Fixed quote mod Cas

[MooseMom]

Don't dismiss the possibility of transplant just yet!  Perhaps you could ask about what we in the US used to call "extended criteria" organs which are kidneys that might not be perfect but could still be "adequate" or better.  Just a thought.

Welcome to IHD!

[Simon Dog]

1. A two day break - it means I could have a whole weekend and not worry about needing to being back home "tomorrow"
2. I can plan my week better and have set appointments / activities on the same night each week. (What we should have is 6 or 8 day weeks - that would work better!)

There ain't no free lunch.

QOD is medically better than 3x weekly, but nephs don't like to talk about how the standard 3x is really not the best possible.

Perhaps you could ask about what we in the US used to call "extended criteria" organs which are kidneys that might not be perfect but could still be "adequate" or better.

The current designation of "extended criteria" is KDPI >= 85.  No matter what you call it, these are short half life organs.

[Charlie B53]

Keep very strict fluid control and diet can help reduce the dialysis time required.  At least I hope so.  I would hate to think my skipping all the foods I really love is worth it.  But my labs are great and even my Monday morning weight in I'm rarely a whole Kilo over my dry weight.  So I think I must be doing something right.

It take a lot of self control, but it soon becomes a way of life and really isn't that difficult.

I'm weird.  And a Vet.