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Which type are you using? I was on CPD at home (perinatal dialysis), and that worked ok for me I the UK (spent just over 4k days on the list and passed on two calls, I went on eh list before I needed dialysis)

I basically hooked up at 10 pm for a 8 hour cycle and was done by 6 am and out of the door at 7 to commute.

I would have ben ok doing manual bags but I think having to do so exchanges at work sqicked some cowokers out.

I do PD also. 9 hours on cycler while sleeping but i also have to do a manual bag for 3-4 hours in evening. That means I kind of have to be back home by 7pm. I could have gone with a full day fill but I hate the full feeling for the whole day.

So you were on the list for 4k days? That is like 10 years! Did you already have a transplant?

Ah no in the UK they now try put you on the list before you need to go on dialysis - I had managed long term decline for almost 20 years.

I also passed on the first before I was on dialysis and passed on the second as it was a "problematic" donor - they where not sure if they where HIV +ve - the Doctors send line was "don't worry we have good drugs for HIV these days"

I just did 2 10l bags in the evening and one filler to tide me over

What was the criteria to by on the list in the UK? In the US, I was put on the list when I had a GFR of 20 but that lasted only 2 years till it progressed to dialysis which is considered when GFR falls below 15. My kidney failure is due to IgA Nephropathy so it progressed despite all my attempts.

I went on dialysis when I hit about 20-25% but I had been on the list for 3 years or so before that.

It maybe the NHS has different criteria for going on the list and it my depend on consultant and the individual - but I had been seeing the nephology team since 2000 ish

How does this work? Is it possible to move and get on a different waitlist? It's hard for me to see why they would setup region-by-region waitlists. Fingers crossed for you.

This is my question, too. Surely there are flexible people who move to the area with the shortest waitlist.

Yes like I mentioned in other reply, you can move regions and carry your wait list time. But many people are tied by job and family. Also insurance plans sometimes have preferred hospitals.

As for why I haven't tried a shorter wait region, I consider transplant as not a cure. It will eventually fail. And there are other things in progress like the UCSF artifical kidney, gene therapy research, better anti-rejection drugs. My hope is when my transplant does fail, one of these alternatives are further along. So I look at each of these things as stepping stones to extend my life.

Steve Jobs listed himself in multiple areas and could just private jet to the first available organ (I can't remember what organ he needed)

This is for US but you can get on multiple lists at the same time. However you have to be able to travel to that center on a short notice. And there might be false calls where things don't work out. So most people can't list beyond the local and adjacent regions within a few hours of driving distance. However you can switch regions and carry your wait time credit over.

As for why the region-by-region setup probably because its a big country and patients can't travel from one side to another. Also its difficult to change because any change results is someone having increased wait time. And some of the states don't like to share their organ streams with others. The reality is those states with larger organ pool is because more people die there for whatever reason.

I've also been told that only a small percent of deaths result in viable organs for donation. I think like 2 out of 1000 is what a transplant coordinator told me.

A lot of the reason for the region by region waitlist is what you said, to make sure you are capable to get into the hospital within a certain amount of time to receive the organ. The other part is that it takes time to physically move an organ from the deceased to the transplanting hospital.

Time is the key here, the more time the organ is not in a living body, the less likely it is to survive transplantation. So if we didn't have regions, and you were living in San Fransisco and a kidney came from a dead biker in Florida, the likelihood of the kidney surviving is less than if that kidney came from Sacramento.

When I was waiting at the royal free (UK) , one of the doctors doing my bloods for compatibility - mentioned they had people fly down from Aberdeen.

And not all of a donors kidneys are ok two of us got called and only one kidney was viable.

Steve Jobs was in the same boat and got "multi-listed"--

https://abcnews.go.com/Health/Economy/story?id=7902416&page=...

The short answer is you technically can but the ethics are foggy. On the one hand you do help even out the geographical disparity. But you're kind of buying an organ that would have gone to someone else who's probably poorer than you.

Thank you for sharing your experience! It is a boon to hear directly from people about what they are going through. Good luck with your health!

Thanks for your story, and good luck. I will be joining your plight in a few years...

IMO, people should be allowed to donate organs for payment.

Would fix the long waiting list issue.

Only the rich would benefit.

Ever hear of the urban legends of knocking people out and stealing one of their kidneys? This would make it real. There's a whole bunch of science fiction based on this, Larry Niven coined the term organlegger: https://blog.oup.com/2008/02/organlegger/