I am a CKD patient with 20% kidney function and my doctor wants me to get a Fistula very soon. I had my vein mapping yesterday. I prefer to get a Catheter as from what I read I would rather use PD as my treatment of choice.
I would prefer the independence I would have with home treatment.
That brings up a question in my mind that I hope you can help me with!
My wife and I love to travel across this great country in a 30 foot Class A Motorhome, and I would like to be able to continue to do so after I start Dialysis. We like to go for months at a time in the winter and I am concerned about the weight of the supplies that I would have to be carried, I am wondering if anyone in the group has done this or knows someone who has. I really could use some advice and encouragement.
Thank you for any help you can offer.
I touched base with Baxter on this question, and here’s what they said:
“As long as the RN / Dr. approve the patient to travel we can provide
supplies to most travel destinations. If the patient is on a cycler they
would need to take their cycler and all ancillary supplies with them and we could ship the solutions to their travel destinations. Normally if a
patient is traveling we would want to send at minimum a 2 week supply. We have had pts who travel in RV’s and we have been pretty successful in shipping product to RV parks. We would not want to ship supplies once a week, rather on a 2 week cycle.”
So, if you know that you’ll be in a certain place, it should be possible for you to receive 2 weeks worth of supplies at a time, which would be easier to store in an RV than a whole month’s worth.
Bob, I was so excited when I found your posting on this board. Have been searching for days in different message board for this kind of information.
My husband has just been diagnosed with ESRD. We’ve already talked with doctor about the portabale night time dialysis, so that we can keep enjoying our lifestyle of travel in our 36’ 99 Bounder. This was such devastating news for us…although my husband is 77, I am only 58, and I refuse to give up rv’ing. Everyone on all these message boards is so discouraging–almost rude about it.
I just don’t see why our most enjoyable thing should go down the tubes because of this.
Can you please tell me how things are going for you and how are dealing with the supplies, shipping, and sterile environment? Pls hold nothing back–tell me as much as you can…thanks so much…
Wow - I envy you being able to load up and go off like that. I doubt that you could load a full month into your RV though, although a couple of weeks would require say 14 boxes (14 would be minimum-but you should always carry extra in case of a bad bag) of fluid @ approx 21 lbs each so your only adding approx 300 #. For a month supply my dialysite fluid alone takes an area of approximately 3x6x5. Each box contains approximately 21 Lbs of weight. Depending upon your perscription (I use 10 L each night-or one box) Although each box would only contain one strength, which I generally mix & match the strengths depending upon weight, swelling etc - which you will learn more about as you get your training. So you could pretty easily max out your storage area trying to carry a full month. Then you would also need an area for your face mask, heparin, syringes, tape, 2x2’s & 4x4’s - granted they don’t take much room, but you must be able to keep them in sterile containers till ready for use, as well as space for your blood pressure monitor & scales
I have done short trips only, carrying my supplies with me without much problem. We generally are only out 2 or 3 days at a time for a couple of reasons - I still work full time & I don’t think my energy level could hold out for much more than that. Anyhow, with a little planning, there is no reason you can’t get out and travel. Life is to be enjoyed!! Godspeed. CJ
Actually I tow a car, which is empty so I will have the whole back seat and trunk as far as space is concerned. The main question is how much weight I can afford to add to the toad without exceeding the GCWR of my rig. Of course now I wish I had bought a pickup instead of a car to tow.
Until I actually go and do it I am not too sure how my energy level will match my imagination. :o
Also there is just the two of us so the 29 footer provides with plenty of space.
Right now I get mighty tired real easy and I don’t yet know how much better I will feel after Dialysis. God willing my plans will be realized.
As I mentioned we like to travel as the wind blows, for example, we started out for Florida 4 times before we actually made it down there. Got sidetracked each time but the last.
I am retired so there is just the usual family commitments to keep us home at any particular time.
This is what really gripes me about this disease is the fact that I worked for 69 years and we went without many things while raising three girls. And now that we can afford to eat what we want and travel when we wish I find that I can’t eat anything I like and may very well be tied down at home.
I have decided that my diet is very simple. Eat anything you want, but if it tastes good—spit it out, it’s not on the Diet
Merry Christmas, Happy Hannukah, Happy Kwanza and Happy Holidays to All
God Bless Us, One and All
When you get on PD your diet will not be so restricted. You will be able to eat ALMOST anything - provided you remember MODERATION is the key AND to watch the salt. Other than that, PD is so much easier (at least it was for me)and less restricted.
I see no reason for you to tie yourself at home - if you are in a camper & you get tired find a spot to land for the night, or even for a day or two to rest up - then go again. Although one thing I didn’t think of until last night, when I responded to you earlier - & especially if you are going to be hauling your dialysite in the car or trunk, is you may have to watch the temperature it gets to (how warm the solution can get & being kept in an auto) - it might be too warm, but your dialysis nurse can advise you on this.
I understand about the aggrevation with the disease. It can be frustrating - but you must always remember it could be worse!! You ARE still able to do what you want, you just may have to change how you go about it and adjust your travels according to how you feel. Anyhow - good luck with your travels & if I can help in anyway - don’t hesitate to ask. CJ [/img]