PD and traveling almost every week

[iamtimj]

I need some opinions. 

My doctor has told me that she is ready for me to start PD whenever I am ready.  I don't really know how to know when I'm ready, but my real question relates to travel. 

I work as a software consultant for colleges and am on the road for 3-4 night every week.  They tell me that my machine will be small enough to carry on and that they will ship fluids ahead to my hotel.  My questions are what do I do about the inevitable travel delays when I get stuck in a city where I didn't intend to be for the night because of a missed connection.  I think I've read in some other posts that TSA allows travel with extra fluids with a doctor's note.  Can anyone confirm this?

I know that this is going to seriously complicate life having to arrange for fluids to be shipped ahead.  Just wondering if there is anyone out there in a similar situation that can tell me that it will be ok?  I meet with my doctor next week and I guess I'm planning to start the process of getting my catheter installed.

Any and all comments are appreciated.

Tim

[peleroja]

Not in the same situation as you, but have done extensive traveling while on PD, which included planes, trains cruises and buses.  When I travel, however, I don't use my cycler, just go back to manual and have my stuff shipped ahead.  I always took one extra bag with me in my backpack, without a doctor's note, and was completely forthcoming when asked about it when flying.  In fact, several of the checkers knew exactly what it was, so the news is getting around.  Hope that helps.

[MiSSis]

Hi Tim,  You didn't mention who is the manufacturer of the machine you will be using.  I use a Fresenius cycler and there's no way that it's small enough to carry on a plane.  I'm sure my husband and I could figure out some way to get it around a terminal once it was packed up in it's box and we used some sort of luggage carrier but it would have to be checked at the gate as it wouldn't fit anywhere on the plane. 

We've done quite a bit of traveling but all of it for vacations.  I work with my PD nurse who places an order with Fresenius for a cycler and supplies to be delivered to whereever we might be staying.  In a couple of cases we had the cycler and some supplies delivered to one location then traveled by car to another, taking the cycler with us.  Fresenius then had additional supplies sent to the second location.  At the end of our trip, Fresenius gives me the paperwork to have the machine returned by Fed Ex from our final location.  I've had a couple of occasions where incorrect supplies were delivered and last month 1 box of tubing was delivered a day later than expected but we were able to make any necessary adjustments needed until Fresenius could make the correction. 

On a couple of occasions we've traveled by car to our destination and in that case, I switched to manual exchanges for the duration of the trip by car and had a cycler and supplies delivered to my final destination.  All in all, I've had really good luck with our travel experiences.  In the case of unexpected delays, I'd probably consider having at least 1 or 2 manual exchanges with me to cover all bases.  Although I haven't had to do this myself, I think I've read elsewhere where people have been allowed to carry PD fluid with them on board an airplane as long as they had a letter of explanation from their doctor.  It's certainly something to discuss with your doc and PD nurse at your next meeting.

Although they're kind of expensive KidneyStuff.com has a couple of carriers designed for PD equipment and supplies that might be useful for travel.  You might want to take a look at this website:   http://kidneystuff.com/warmers.html.  For my use, we bought an adapter from Best Buy that we plug into the cigarette lighter outlet and I can then plug in a heating pad to warm up the fluid bags while we're traveling by car. 

I hope you can adapt PD to your lifestyle.  Any other questions you think I or others might be able to help with, just ask.

[Rerun]

I don't want to scare you, but you may want to look at disability.  Once you quit working you can apply for Social Security and your company may have a disability option also.  I had to quit my job because of travel AND I just had no energy.  I was on hemo and there was no way I could travel when the centers need 4 weeks notice and my boss gave me 1 days notice.

Work as long as you can, but know that there is the option of disability. 

                     

[iamtimj]

Thanks all for your thoughts.  My levels stayed pretty much the same this month so the doctor said we could hold off a little longer on starting dialysis.

I'm not sure what type of machine I'll be using, but the doctor's staff said it would be about the size of a carry-on bag.  I guess we'll see.

Thanks also for the thoughts about disability.  I know that's an option and I've also been looking for non-traveling work, but that's tough in this economy.  We'll just have to see how things go.

Tim

[Savemeimdtba]

I wish you luck I know that if I could have - I would have loved to have started off on PD.  Hemo takes a lot out of you... also know that if you wait too long and you get too sick, it's going to be a hard road to get back your strength/energy.  I know I would have never consented to starting dialysis before it was absolutely nessaccary but now, looking back.. it probably would have been easier to not get so run down before getting the help needed.  In my case, it was all of a sudden so there was no pre-warning but in your case, you could possible pre-empt the really bad part.  Just a few thoughts for you - obviously, you know what is best

[andykinney]

Tim, keep working as long as you can!  Disability money sucks!

Sounds like you are going to be using the Baxter cycler, which the centers say is small enough to carry on.  Let me tell you it weighs about 20 pounds; you should bring a note from your doctor because the TSA folks have never seen anything like it!  Also, have your PD nurse give you a nurse contact in the city you are going to.  It is my understanding that that nurse can provide you with solution for a single day if you have a flight delay.

[rookiegirl]

I was on PD for 1 yr and 4 mos prior to getting a transplant.  I didn't like the cycler and therefore opted the manual 2 exchanges a day.  I did 7.5% Icodextrin solution good for 16 hours during the day and 2.5% Dextrose solution good for 8 hours at night while I sleep.  This was the prescription my Neph gave me and it worked well for me.  I was able to work a full time job as an Analyst from 8-5 Monday-Friday.

I did travel by plane and carried my 2 bags of solution along with the other supplies necessary to do my exchanges, just in case.  My PD clinic typed a note for me to carry on the plane.  When I went through the check point, I gave them my note and there were no problem.  The rest of my supplies were delivered to my final destination with no problem.

If I was you, while you travel, I would opt to carry supplies necessary to do manual exchanges.  Just in case you run into airport delays.  I would ask the airport staff if they can accommodate a closed room for you to do your exchange.  Just a thought.

As for whether you are ready to start PD, well I was never ready to do dialysis.  My creatinine was only at 5.0 when I started PD and I still produce urine.  This is the reason I was able to do 2 exchanges per day rather than 4 or 5 exchanges.

I wish you the best in whatever you choose.  Best of luck to you.

~ Rookiegirl

[paul.karen]

Two exchanges a day would be nice.
I will have to talk to my neph about that.

How do they decide how much you should do??
I still pee plenty.
And my neph said i would be able to tell him when im ready to start.
But if i could get away with two manuals a day i would start now.

Rookie how much fluid did you carry during the day?

[rookiegirl]

Hi Paul.karen,

After my PD training, they started me on the cycler with 3 exchanges during the night and went empty during the day.  I didn't like the cycler because of the drain pain which prevented me from sleeping through the night.  Plus, the 3 exchanges were too much which lowered my BP.  This is when my Neph decided to do manual 2 exchanges per day.

I carried 2000 mls. of fluid during the day.  I had to get use to filling bloated, but I was able to tolerate the fullness after 2-3 days.  After awhile, I was so use to it I don't even realize I'm carrying that much fluid.  Also, my Neph told me if I'm going to be really active during the day, I can opt to only fill with 1000 mls or 1500 mls.  I did this when I went hiking or go to an amusement park.  I made up the dialysis treatment at night by using a stronger solution (4.25%) to pull out more fluid.

[paul.karen]

 
Thank you much. 
Before your Transplant did your urine output decrease much?

[rookiegirl]

Thank you much. 
Before your Transplant did your urine output decrease much?

A little than the usual.