Multiple Sclerosis and Dialysis

[PrimitiveKat]

Hi,

I would like to know if anyone with MS travels either part of full time. Also, if anyone who needs dialysis does.

Thanks!
Heather

 

[michelb]

Hi,

I would like to know if anyone with MS travels either part of full time. Also, if anyone who needs dialysis does.

Thanks!
Heather

Although I don't have first hand experience,  I suspect that equipping an RV for someone with MS wouldn't be that big of a deal (probably a whole lot easier than using hotels and buses/planes/trains to travel).  As far as dialysis, if you have home dialysis machine, I believe they use a fair amount of power so you might want keep that in mind (e.g. look for at least 30A, probably 50A service and a powerful generator if you need to run the machine off of it).  For dialysis, do you need to keep solutions refrigerated?  If so you probably want to look at getting a very large (or extra (e.g. bar fridge)) refrigerator.

 

[Wendy]

We have a friend with MS who travels part-time in an RV. She can still get around, usually with a walker. The only thing they did to the motorhome was add a ramp to use when the steps are too much for her. As it turns out, their dog uses the ramp more than Linda does.

Wendy
Moriarty NM

 

[Ron]

I have seen both MS patients and those requiring dialysis traveling in a RV.  The gentleman that had to have dialysis enjoyed being able to travel and indicated it was worth the effort they went through to make sure there was a dialysis place available where they were going to be.

 

[markw]

Heather,

I don't know anything about MS, but I am currently doing in-center dialysis 3 times a week. I am planning to buy a MH and have been researching dialysis options. Here is what I know.

If you (or whoever you might be inquiring for) are currently doing in-center hemo-dialysis, you can continue to do so as you travel, but it takes a great deal of planning and you must stick to a strict schedule. This is less of a problem if you are staying in one location, but if you are always travelling it can be difficult. A mechanical breakdown could completely ruin your schedule. Most dialysis centers are heavily booked and can't just squeeze you in. The advantage to this method is you don't have to haul around equipment and supplies.

Another option is Peritoneal Dialysis. I have no personal experience with it, but it does allow for a great deal of mobility. The disadvantages are having to care for a catheter and having to stock a lot of dialysate.

The third option is home-hemodialysis. Check out www.nxstage.com. They make a home-hemo machine that is 15"x15"x18" and weighs 75 pounds. This could easily be transported in a MH. Medicare will pay for the machine and your supplies. The biggest problem with this method is water.

There is an optional device that will make dialysate from a chemical packet and water that you provide. It is 19"x20"x26" and takes 7 hours to make a batch of dialysate good for 3 treatments. You must have access to water that meets EPA standards though. Every municipal water system has to meet the EPA standards, so if you are in a city this is not a problem. However, some RV parks are on well water and all bets are off.

Instead of making your own dialysate, you can use pre-packaged dialysate that comes in bags just like saline. The problem is a months supply is a palette load that weighs about 1000 pounds. If you are only going on short trips this isn't as big a problem.

Those are the main issues I can think of right now. Obviously you should talk to your doctor, your dialysis center, and do lots of research online and otherwise. There is plenty of information available. I haven't found it in one place though. The main thing is this is do-able. It just takes a lot of pre-planning and some determination. Good luck.

Mark

 

[Ron]

Thanks for your informative post.  I am sure it will be useful to anyone needing dialysis and considering travel options.

 

[Alaskansnowbirds]

There is an optional device that will make dialysate from a chemical packet and water that you provide. It is 19"x20"x26" and takes 7 hours to make a batch of dialysate good for 3 treatments. You must have access to water that meets EPA standards though. Every municipal water system has to meet the EPA standards, so if you are in a city this is not a problem. However, some RV parks are on well water and all bets are off.

Mark

Mark,

How much water do you need to make a batch?  Does RO water meet EPA standards? I would think it would. I don't know how many, but I do know there are members here on the forum that have RO systems installed in their MHs. Maybe that would be a solution to your water supply.

Keep throwing problems at us. We have a wealth of information here on the forum.

 

[Newt & Jan]

I would expect water from a RO filteration system to well exceed any municipal standards so it should be fine.  Good to verify but I'd be astounded to find out it did not.

 

[Ron]

We have a RO unit installed under the kitchen counter and it works very well.  Does not take up much room.  Sam likes it so well that I installed on in the house.

 

[Alaskansnowbirds]

Ron,

For Mark's information, do you know how many gallons the system you have in the MH will produce in a day? The RO solution won't work for him if he needs 20 gallons a day and the RO system will only produce 15.

 

[Ron]

I will have to look it up Don.  I have seen some folks that instead of using the normal storage tank that comes with the system they actually have the system plumbed to fill the fresh water tank.  I am sure that would take some time to fill the FWT.

 

[Alaskansnowbirds]

Boy that would take a long time to fill. Wonder where they have the bypass water going? They must never boondock. You have your bypass going back into the fresh water tank don't you?

 

[Ron]

I can have the bypass water go either way with a turn of a valve.  If boondocking the bypass goes to the fresh water tank if not I have going to the grey water tank.

I am not sure how long it takes to fill the fresh water tank or what the do when it is full.  Probably just turn it off whne the level is where they want it.

 

[Grumpy]

Hi,

I would like to know if anyone with MS travels either part of full time. Also, if anyone who needs dialysis does.

Thanks!
Heather

My wife has MS.  She used a walker to get around.  Also has a pride mobility scooter that I put in the bed of the truck so she can get around at the campground.  What exactly do you want to know.  You can always send me an e-mail. 

 

[markw]

I'm not sure of the requirements of the unit that makes the dialysate. It makes a 60 litre batch (about 15 gals.) so I assume thats the amount of water it needs. I haven't found any flow rate requirements, though.

I was thinking the RO filter might work after reading about water quality and filtration here on the forum. They use an RO system at the dialysis center, but they have some of the best water in the country going in. Our water here in Portland is pure mountain run-off.

These are some of the details that I need to get answers for. I haven't been researching very long and the more I learn, the more questions I have. I still need to accumulate more money to buy the MH, so I have some time. On the other hand, the more this plan looks feasible, the more eager I am to get going.

I'm not sure how to know how effective any particular filtration system is on some of that nasty well water you folks have run into. I'm not even sure what the critical specifications for the water are. Dialysis patients are sensitive to certain minerals that don't bother you folks with good kidneys. For instance, you hear about how important potassium is for heart health. However, too much potassium will kill me because my kidneys don't regulate the amount in my system. So theoretically, if I was using water with high levels of potassium that didn't get filtered out the dialysis could kill me. I don't know if that's a realistic scenario or not, but it gives you an idea of the kind of information I need.

Mark

 

[Ron]

Please keep reporting on your research as there may be others with the same needs.

 

[Newt & Jan]

Mark - a RO system with possibly some sort of activated charcoal pretreatment should certainly provide very high quality water.

I imagine that checking with someone in the dialysys community could get you specific recommendations for a residential system that would give safe water for use in dialysis.  The residential units are normally lower pressure (using just the water pressure in the lines) than the commercial systems but if you get the right setup, you should be fine.

It is just a matter of locating an expert to give you specifics.  The National Kidney Foundation is probably an excellent place to start.

 

[Ron]

Additionally pumps are available to provide the appropriate pressure if necessary.