Dialysis

[Carillon]

What is the best system to have dialysis at home. For travelling, for exercise, for normal living.

[3Kidneys]

Other than having a transplant, I believe PD is the best. Specifically, CCPD. Continuous cycler peritoneal dialysis. I work full time, then come home do my things around the house, fix a meal, then around 7PM I connect to my machine. I usually just relax and read or watch tv until bedtime ... I actually sleep while it’s running. When I get up in the morning, I disconnect and go. Now exercising while filled with fluid would not be ideal. But as long as you’re dry (no fluid inside) there is no reason you can’t. I am dry during the day, only have fluid on when connected. But it DOES allow me to live a fairly normal life. With hemodialysis, I felt drained and no energy after each treatment and would need to sleep for several hours afterward. The drawback to a transplant are the costs associated with the medications.

You can go visit a dialysis center and talk with the nurses or see if the center has a mentor program and talk with them.

[Jayhawker in reply to 3Kidneys]

3kidneys,

This sounds encouraging. (I'm not yet on dialysis but expect it won't be much longer until I'm trying PD it's time.) do you have a preference for the cycler you use? Or does the center you go to give you a choice?

Marj

[3Kidneys in reply to Jayhawker]

The center has the decision there. But they are coming out with new ones all of the time.

[Carillon in reply to 3Kidneys]

Thanks 3kidneys. My concern is that my wife and I am very active,,,exercise and travel make up a large part of our life. Can you share where you can travel to and where you cant and how all the machinery is taken/shipped. Finally while hemodialysis in a centre and not at home seems to be available worldwide and is only 3 days within a 24 hours a day, why would anyone choose a more complicated system that requires an every day treatment?

[3Kidneys in reply to Carillon]

Sorry I completely missed the part asking why I choose everyday treatment on PD verses 3x per week. The answer is fairly simple for me. It allows me to lead a fairly normal life. I continue to do EVERYTHING I did prior to dialysis including work full time.

I have been on hemodialysis. The difference in how I felt was the difference between night and day. On hemodialysis when I would get off, they would often have to use a wheelchair to get me to the car and someone would have to take me to and from treatment. I’d have to sleep several hours before I could function. My appetite was terrible and the diet is VERY restricted. With PD I get up in the morning, disconnect and go to work. My diet restrictions are very few. I feel good 99% of the time. But as with anything else, you have to listen to your body. I consider PD as part of my night time rituals. Yes I get tired of it, but I’m better with PD. I’m not heavily active as my back doesn’t allow it (prior back surgery, unrelated to my kidney issues) but I do ride a bike, bowl, walk as tolerated, etc. hope I’ve answered your questions.

[Carillon in reply to 3Kidneys]

Thanks

[Gotthecall_123]

Hi i was on PD for 3 years hooked up at bed time.i traveled quite a bit i would usually stop after 4 or 5 hours get a room and set up have a bite to eat and allway good but remember WASH AND SANITIZE your hands often,and wipe down your area with lysol wipes, 🙏🙏😝

[Carillon in reply to Gotthecall_123]

Gotthecall. Thanks for the note. I am concerned with travelling with a "contraption" and how much time would be consumed while on PD. Did you find that it allowed you to enjoy travelling and where were you able to go and not able to go?

[Gotthecall_123 in reply to Carillon]

Hi Carillon well i drove quite a bit but i flew within,y country 🇨🇦Just in case there were any problems hospital visits something wrong with supplies or machine but it did allow me to do whatever i wanted everyday until bed time when i would be ready to hook up and try to sleep while onPD DIDNT GET MUCH SLEEP 🙏😝

[htpi1543 in reply to Gotthecall_123]

For sleep could you have used some sleeping aid like melatonin etc? If you can share the info

How young you are and did you traveled alone or with someone?

I am not yet on Dialysis but my nepro says soon

I like traveling as well and thinking of doing it in RV.

I am 75 and I plan to travel with my wife. My wife has more energy than me. With modern RVs , I think you do not require lots of muscle power. Is this correct?

Other than kidneys I do not have any major health issues

It is good to know that the machine weighs 50 lbs. which can be carried easily.

Thanks to 3kkidneys and others for such a good info on home dialysis and dialysis while traveling. Made my day

👍👍👍

Sam

[Gotthecall_123 in reply to htpi1543]

I was on dialysis my insomnia was really bad we tried several different sleep meds which worked for a while but then started to wear off I was lucky to get three hours a night Restless sleep but now after transplant I am using melatonin which I find is very helpful and I’m down to one sleeping pill one night and I’m getting a good solid six hours per night which for me is more than enough

[3Kidneys]

I’ve been to South Dakota, North Dakota, Alabama (you can swim in the ocean!!) Florida, and many other states etc.. just about anywhere you want to go. I generally have my dialysis solution shipped ahead and it’s ready when I get there, but you will still need to take caps, cleaning solutions, tape, guaze, hand sanitizer, cassettes and possibly extension tubing. If I know it’s going to take me more than a day to drive- I have two days solution with me “just in case”. If you’re flying you will need to have the dialysis center give you a letter for your machine and solution. Otherwise you will not be allowed to take the solution on the plane. The most important thing I learned is CALL AHEAD wherever you are staying. Explain to them you are (or spouse) is a dialysis patient. Once I explain my needs and why, the hotels, resorts, have all been extremely helpful. I’d also suggest a small rolling type carrier to move the machine on. It weighs nearly 50#s. Enjoy the seas, ocean, etc but no pools. I do often dangle my feet into the hot tub though!! They also have special cruises just for dialysis patients. Just Google “dialysis cruises.” There is no reason other than exhaustion not to enjoy yourself. But if you start to wear out, take the time and listen to your body and relax. Have fun- I hope this answers your question.

[Carillon in reply to 3Kidneys]

Thanks for the detailed answer. It does limit where you can go. That part is depressing.

[3Kidneys in reply to Carillon]

Actually, I wouldn’t hesitate to travel anywhere in the US. But I’ve NEVER wanted to travel to other countries. But if it’s something you are interested in, talk with your dialysis center and your travel agent. My medical supplies are through Baxter and they ship anywhere in the US. IF you are going to be somewhere for an extended period they will work with you on shipping all supplies. I don’t see any limitations with PD - with a little planning you can travel anywhere.

[Carillon in reply to 3Kidneys]

Thanks again. Are you familiar with Dialysis Cruises? Just found them online.

[3Kidneys in reply to Carillon]

I have never been on one, but a few of my friends have and they LOVE THEM.

[Gotthecall_123]

Im not sure about swimming i was told not to swim and as for flying i had my team arrange a treatment at neatest hospital or clinic if you do that you dont need to bring supplies your team will forward your your requirments to them it does take a few days to arrange but it well worth it🙏😝

[Hidden]

Does anyone travel in an RV while doing HHD when stopped for the night or longer?

[Jayhawker in reply to Hidden]

I don't have an RV but I've read about a few people who are on HD dialysis traveling successfully via RVs. I'd think if you would talk with your dialysis team they'd be able to help you figure this out.

I'm assuming you'd stay over night where you have hook-ups to electricity so your portable HHD cycler would be powered in your RV; but, again, I'm not an RV person. However, if I was an RV person, I'd definitely talk with my dialysis team about this. Surely this is doable with some accommodations.

Let us know what you learn🐶

Marj

[Hidden in reply to Jayhawker]

Thanks for your reply. Unfortunately, you seem to be under the impression that I'm a novice at this. I have used all of the resources at my disposal locally to get the information I needed, including the local Dialysis Center. My post here was to make contact here with someone who has tried HHD while traveling in an RV. FYI, the point of traveling in an RV is to go where I want, when I want and to avoid hotels and motels. Staying in my own bed and traveling where I want and when I want is the purpose of the RV lifestyle. Yes, there are a few people who do this and who travel in an RV that are on YouTube. A Canadian company rents an RV out by the week with HHD equipment on board. Someone else travels in a 5th wheel (toy hauler) and uses HHD. Still, another goes to centers with his motor home and gives a demonstration of his HHD. My questions were directed at someone within this community on HU that does this, preferably in a travel trailer, but not completely necessary. Thanks again.

[Jayhawker]

It sounds like a great lifestyle; to go where you want when you want and sleep in your own bed.

Marj