Recently retired, organized a van and a tug, went on one short preliminary trip through WA, a sort of "shakedown cruise". All went well.
Then my doctors advised that my transplanted kidney, after 26 years, was no longer keeping up with the rest of my body, and I would have to go back onto haemodialysis. This involves three sessions a week at the local dialysis clinic, for four hours each session (plus travel time). This has severely curtailed our movements, as you can imagine.
It is possible to obtain " holiday dialysis" at clinics in other towns, and I had wondered if it was feasible to travel using such services.
Has anyone else on this forum used such a method to travel across the country, or tried to do so? I'd be really interested in hearing about your experience, and whether you think this is a practicable solution.
Regards
C00P
jebs said
07:13 AM May 26, 2018
It might be possible........best thing would be to ask your doctor
Des and Jane said
11:50 AM May 26, 2018
Hey COOP,
Friend of mine in Tasmania has organised with his local clinic to have a portable machine at home so he can do it himself.
Des.
KFT said
12:03 PM May 26, 2018
I have read of a van that was set up for home dialysis. It was quite a while ago now and I think the newer machines are much more compact.
It can be done and you should ask your specialist about it.
Frank
drtooheys said
12:34 PM May 26, 2018
Was in Nelson Bay NSW 2 weeks ago and they had "The Big Red Kidney Bus" which travels all around the place staying in caravan parks for weeks on end to enable people to utilize dialysis and yet have a holiday at the same time. Dont know how many are out there but maybe worth some investigation.
JeffRae said
01:28 PM May 26, 2018
Came across gentleman at a free camp who had to excuse himself because he had to do dialysis in his own van
villatranquilla said
02:53 PM May 26, 2018
JeffRae wrote:
Came across gentleman at a free camp who had to excuse himself because he had to do dialysis in his own van
he may be having peritoneal dialysis which is a much simpler system and doesn't use a machine , but I think is only used for not so serious cases. . Friends have just had a dialysis unit set up in their home and while a big improvement sizewise from other older units its still too big and complex for a caravan. They find out where the big red kidney bus is situated and plan a holiday around it.
villatranquilla said
01:06 PM May 27, 2018
our friends also had to have their water quality tested as well as a special water filter system incorporated. The home dialysis unit uses over 100 lts of water per session so this might also restrict a mobile set up. The hospital kidney unit made the initial referrals to enable a home system and then when it was all set up they had to spend a month at Monash kidney unit to learn 'the ropes'. There are also special solutions to be added each session that and along with lots of other disposable equipment take up a large wardrobe in their specially set up dialysis room - also a special reclining chair that would not fit in a caravan. I have 2 friends who have both had a second transplant - this time the donor was their husbands. Sounds like you got good 'mileage' from your first transplant. I don't want to put you off so maybe make some inquiries where you currently have dialysis.
-- Edited by villatranquilla on Sunday 27th of May 2018 01:09:58 PM
C00P said
05:28 PM May 27, 2018
Thanks folks, there's some really good information in all those replies.
Had considered a haemodialysis unit in the van but concluded it just wasn't practicable, particularly with the water usage. Peritoneal dialysis might work, but the amount of fluids that are needed made that a difficult solution, and I am already on haemodialysis.
I hadn't heard about the "Big Red Kidney Bus" so I'll chase that one up and see what options there are. I guess I'd need to organise some overnight "holiday dialysis" sittings while en-route to get to the caravan park with the dialysis unit, but that shouldn't be too hard to arrange.
Yes, 26 years is a very good run, all thanks to my brother. My sister is ready to give me one of hers, but I have to wait at least 3 years, and maybe 5, before that can be considered. This is because when they were doing the work-up for another transplant, they discovered cancer in one of my "native" kidneys and so that had to be removed. Because of the risk of recurrence, a waiting period is necessary to ensure all is well, otherwise when they hit my immune system for six during the initial stages of the transplant it could trigger a recurrence which they would have difficulty controlling due to the need to maintain immunosuppression.
In spite of my whinging, I need to remain grateful that I live in a country where these things are possible. If I didn't, I'd have been dead years ago .
Hi Folks,
Recently retired, organized a van and a tug, went on one short preliminary trip through WA, a sort of "shakedown cruise". All went well.
Then my doctors advised that my transplanted kidney, after 26 years, was no longer keeping up with the rest of my body, and I would have to go back onto haemodialysis. This involves three sessions a week at the local dialysis clinic, for four hours each session (plus travel time). This has severely curtailed our movements, as you can imagine.
It is possible to obtain " holiday dialysis" at clinics in other towns, and I had wondered if it was feasible to travel using such services.
Has anyone else on this forum used such a method to travel across the country, or tried to do so? I'd be really interested in hearing about your experience, and whether you think this is a practicable solution.
Regards
C00P
Friend of mine in Tasmania has organised with his local clinic to have a portable machine at home so he can do it himself.
Des.
It can be done and you should ask your specialist about it.
Frank
Was in Nelson Bay NSW 2 weeks ago and they had "The Big Red Kidney Bus" which travels all around the place staying in caravan parks for weeks on end to enable people to utilize dialysis and yet have a holiday at the same time. Dont know how many are out there but maybe worth some investigation.
Came across gentleman at a free camp who had to excuse himself because he had to do dialysis in his own van
he may be having peritoneal dialysis which is a much simpler system and doesn't use a machine , but I think is only used for not so serious cases. . Friends have just had a dialysis unit set up in their home and while a big improvement sizewise from other older units its still too big and complex for a caravan. They find out where the big red kidney bus is situated and plan a holiday around it.
our friends also had to have their water quality tested as well as a special water filter system incorporated. The home dialysis unit uses over 100 lts of water per session so this might also restrict a mobile set up. The hospital kidney unit made the initial referrals to enable a home system and then when it was all set up they had to spend a month at Monash kidney unit to learn 'the ropes'. There are also special solutions to be added each session that and along with lots of other disposable equipment take up a large wardrobe in their specially set up dialysis room - also a special reclining chair that would not fit in a caravan. I have 2 friends who have both had a second transplant - this time the donor was their husbands. Sounds like you got good 'mileage' from your first transplant.
I don't want to put you off so maybe make some inquiries where you currently have dialysis.
-- Edited by villatranquilla on Sunday 27th of May 2018 01:09:58 PM
Thanks folks, there's some really good information in all those replies.
Had considered a haemodialysis unit in the van but concluded it just wasn't practicable, particularly with the water usage. Peritoneal dialysis might work, but the amount of fluids that are needed made that a difficult solution, and I am already on haemodialysis.
I hadn't heard about the "Big Red Kidney Bus" so I'll chase that one up and see what options there are. I guess I'd need to organise some overnight "holiday dialysis" sittings while en-route to get to the caravan park with the dialysis unit, but that shouldn't be too hard to arrange.
Yes, 26 years is a very good run, all thanks to my brother. My sister is ready to give me one of hers, but I have to wait at least 3 years, and maybe 5, before that can be considered. This is because when they were doing the work-up for another transplant, they discovered cancer in one of my "native" kidneys and so that had to be removed. Because of the risk of recurrence, a waiting period is necessary to ensure all is well, otherwise when they hit my immune system for six during the initial stages of the transplant it could trigger a recurrence which they would have difficulty controlling due to the need to maintain immunosuppression.
In spite of my whinging, I need to remain grateful that I live in a country where these things are possible. If I didn't, I'd have been dead years ago
Thanks again, everyone.
Cheers
C00P