I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Traveling Tips and Stories => Topic started by: jadey on January 01, 2012, 06:23:02 PM

Title: First trip on PD.. Need advice
Post by: jadey on January 01, 2012, 06:23:02 PM
I will be flying out to Vancouver in February for a work conference. My cousin lives there so I will be staying with her for 2 days and then going to the hotel for the reminder of the weekend (where the conference is at). For those who have experience travelling on PD, would you prefer doing the night cycler or manual exchanges?

My initial plan was to lug my night cycler with me. Then I realized that I will need to carry 2 suitcases (which I really don't want to do). What do you prefer?

I thought that if I do CAPD.. I will only need to carry 2 1500ml twin bags with me during the day ..(how heavy and annoying would that be?)

Let me know your thoughts!
Title: Re: First trip on PD.. Need advice
Post by: lmunchkin on January 01, 2012, 07:58:49 PM
I know most would say "do what clinic says" or "what your neph says", but I personally,would do CAPD.  The bags will be cumbersome enough with out the cycler.   While away, you may do 1-2 more exchanges, but may find that 4-5 may be ok, depending on solutions used.  We always did CAPD when going some where for a day or two.

Now if you were staying 2-3 weeks or more, then I would take the cycler.  Maybe others on here can give you some tips.  Its been awhile since we did PD.

Hope this helps!  But it is just my opinion.

God Bless,
lmunchkin
 :kickstart;
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 01, 2012, 08:08:12 PM
jady, I haven't actually traveled with PD yet, but I was planning a trip to Disney World that would have happened this week. My planning was to work with my supplier to have my daysalate delivered to my hotel and I was carrying everything else with me. Yes, it would mean 2 suitcases and carrying the cycler on the plane. I wanted to keep as regular with the cycler as possible, so I wasn''t planning on switching back to manuals for the week. As I said, that was the plan I was working toward. For reasons other than me, for once, we had to postpone the trip but will be re-planning for sometime in June or August.
HTH
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 01, 2012, 09:11:02 PM
I always took my cycler with me, but that's just because I hated doing the manual exchanges.  I always had everything shipped to my hotel a week before I left, and it usually arrive a day or two before I did.  I put the cycler in a bigger case than the one that comes with it, that has wheels, and they wouldn't let me take that on the plane with me, but it did make it easier once I was off the plane, cuz all my cases had wheels.  I'd just pull them behind me.

In the end, it is what makes you most comfortable
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 02, 2012, 07:27:13 AM
We are going out of town in 2 weeks and are slightly freaking out. We plan on carrying the "travel cycler" that our Fresenius clinic is loaning us. It is supposed to work as a carry-on. There is also a letter that tells the airline to waive the check-in bag fee since we have the cycler as carry-on. Has anyone dealt with these?

Riki: how did you deal with disinfectant? They won't deliver that as part of our supplies. Did you call the airline to tell them about the cycler and/or disinfectant?
Title: Re: First trip on PD.. Need advice
Post by: jadey on January 02, 2012, 02:48:31 PM
^ That is also what I am scared of when travelling with the cycler. I don't want to make this huge scene at the airport because security won't let me through with the machine.
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 02, 2012, 03:52:44 PM
jadey, I had a letter from my center identifying the machine and all my stuff as medically necessary supplies. According to the airline and my PD Nurse, that was all I needed to get my cycler and a days worth of supplies through TSA.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 02, 2012, 06:30:32 PM
Riki: how did you deal with disinfectant? They won't deliver that as part of our supplies. Did you call the airline to tell them about the cycler and/or disinfectant?

I don't know what you mean by disinfectant.  We didn't deal with anyone to send the supplies, except for UPS.  We sent what we needed to the hotel from what we had here at the house.

^ That is also what I am scared of when travelling with the cycler. I don't want to make this huge scene at the airport because security won't let me through with the machine.

My mom made a huge scene, but it's because she went to the airport 3 days before we were supposed to leave, and got everything ok'd so that we could take the cycler on the plane with us, but once we showed up to leave, the attendant at the desk wouldn't let us take it as carry on.  The airline actually did end up breaking the door for the cassette on the way home.  They turned the bag upside down and put something heavy on top of it.  We made due with it for one night, and a new one showed up on the doorstep the next day.
Title: Re: First trip on PD.. Need advice
Post by: Annig83 on January 02, 2012, 08:10:29 PM
I always always ALWAYS bring my cycler when I travel.  I hate doing manuals.  You shouldn't have any issues with the airport considering you bring a letter with.
Title: Re: First trip on PD.. Need advice
Post by: jadey on January 02, 2012, 08:14:18 PM
Riki and Annig83

Why do you hate doing manual exchanges? Just curious. I've only done it a few times for training purposes and didn't find it too bad.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 02, 2012, 09:37:51 PM
Riki and Annig83

Why do you hate doing manual exchanges? Just curious. I've only done it a few times for training purposes and didn't find it too bad.

I found it time consuming.  You have to stop what you're doing every 6 hours and do an exchange.  It's a pain in the butt.  With the cycler, I just hook up to it and go to bed, then get up in the morning and disconnect.  Much less time consuming, and it frees up the days.  I really miss it.
Title: Re: First trip on PD.. Need advice
Post by: jadey on January 02, 2012, 09:50:37 PM

I found it time consuming.  You have to stop what you're doing every 6 hours and do an exchange.  It's a pain in the butt.  With the cycler, I just hook up to it and go to bed, then get up in the morning and disconnect.  Much less time consuming, and it frees up the days.  I really miss it.

I haven't been on hemo before so I have nothing to compare..but so far, PD on the cycler has been good to me. The only thing I don't like about it is.. I usually don't sleep for 9 hours. When I have school, I would get about 6-7 hours of sleep a night. Also, I don't like how I can't go out late anymore.. my PD goes on for 9 hours so I must hook up by 10pm if I wanna be up by 7am..

How come you can't do PD anymore? (I'm sure you mentioned this in another thread but I am lazy to look  :angel;)
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 03, 2012, 07:01:28 AM
Riki: I didn't realize that you sent the supplies to yourself. I thought the clinic provided them. Our clinic won't deliver Alcavis/ExCept to the hotel for some reason.
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 03, 2012, 09:08:05 AM
drgirlfriend, my clinic set me up with all the miscellaneous supplies I needed. I was planning on taking a second suitcase that contained everything but dialsyte fluids; so all my transfer sets, drain bags, masks, caps, etc. I was planning on pushing the second bag through as necessary medical supplies to not get charged, but if they did, that would have been ok too. My center assisted me with the travel letter so I could carry my day's worth of dialysis supplies and my cycler onto the plane as well as arranging with a center in Florida for me if I had any issues. But that was all.
HTH
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 03, 2012, 10:13:40 AM
Thanks for that, Joe! Now that we know which hotel we're staying in (long story!), we're going to ship the miscellaneous supplies to them and pick up the rest at the center in Houston. I'd rather not be at the whim of the airline. The timing of this trip could have been better, but it's for an interview, so that part is good.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 03, 2012, 12:13:06 PM
How come you can't do PD anymore? (I'm sure you mentioned this in another thread but I am lazy to look  :angel;)

I had a really bad peritonitis infection about 3 years ago that cause so much scar tissue that PD will not work on me anymore.

Our clinic won't deliver Alcavis/ExCept to the hotel for some reason.

I really don't know what that is, so I don't know if we had it or not.  What is it used for?

Thanks for that, Joe! Now that we know which hotel we're staying in (long story!), we're going to ship the miscellaneous supplies to them and pick up the rest at the center in Houston. I'd rather not be at the whim of the airline. The timing of this trip could have been better, but it's for an interview, so that part is good.

Before you book with the hotel, make sure that they will accept the package from you, as it may arrive before you do.  In my experience, a lot of hotels will not accept packages on your behalf if you are not there.  It took a lot of emailing and phoning between me and my best friend in NYC before we found one there that would.
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 03, 2012, 12:36:06 PM
Alcavis is disinfectant that my bf uses to clean the injection port on the dialysate bag and top of the heparin bottle.

Thanks for the heads up on the hotel shipping. I will call them.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 03, 2012, 01:06:00 PM
Alcavis is disinfectant that my bf uses to clean the injection port on the dialysate bag and top of the heparin bottle.

Oh.. We used betadine swabs for that, and I wouldn't have had that with me anyway, as I rarely needed to add heparin to the bags.  When I did, I would just do a manual exchange instead of putting it in the bags on the cycler.
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 03, 2012, 07:00:27 PM
Riki, we still use the Alcavis to sterilize the port on our dialysate bags, whether they are on the cycler or manuals. It's a 5 minute process to make sure everything is absolutely clean. And I did check with our resort to make sure they would be ok accepting a delivery for me from both Baxter and ECV company.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 03, 2012, 07:20:04 PM
if it's just for the injection ports, it's not something I would have used all the time, cuz it was rare that I'd need to use the injection ports.  The other connection ports weren't open long enough for them to not be clean.  Even when I had to spike the bags (early 90s) they weren't cleaned in anything, because they were sterile, and everything was kept in a sterile environment
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 03, 2012, 07:33:01 PM
Our dialysate bags aren't sterile, aseptic yes, sterile, no. So if we're injecting meds into them we need to sterilize both the injection port and the medication bottle.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 04, 2012, 07:08:05 PM
Like I said, it's not something I would have taken with me on a trip, because it was something that I rarely had to do.  Maybe once every 6 to 8 months.
Title: Re: First trip on PD.. Need advice
Post by: Annig83 on January 05, 2012, 11:05:42 AM
I found it time consuming.  You have to stop what you're doing every 6 hours and do an exchange.  It's a pain in the butt.  With the cycler, I just hook up to it and go to bed, then get up in the morning and disconnect.  Much less time consuming, and it frees up the days.  I really miss it.-Riki

Jadey- I agree with Riki.  Manuals are time consuming.  I used to have 4 exchanges a day, and I have a 1 year old, (at the time he was 6 months old), it just wasn't realistic for me... plus I live in a two bedroom apartment, and storing mountains upon mountains of manual boxes, wasn't efficient either.

Title: Re: First trip on PD.. Need advice
Post by: bevvy5 on January 05, 2012, 04:41:18 PM
An option if you want to take your cycler but are worried about schlepping that much yourself through the airport is to request assistance from the airline.  They'll provide someone to give you some help if you ask.  If you can be dropped off curbside at departures, you can have someone from there.
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 07, 2012, 07:39:44 AM
Okay... I picked up the case for the cycler and it is NOT carry-on size. I thought they were giving us a cycler but I had that all wrong. Duh. The case is lovely but not very sturdy. If we can't get them to put it in 1st class (someone in another thread said she could never get them to do it even though it is supposed to be an option), I'm guessing that we will gate check it. To be honest, the bf called the travel people at Fresenius and they said that we should be able to check the bag at the desk and they will tag it as special so it won't get put on the carousel or thrown around. I am skeptical. I think I'd rather gate check it. What do you think?

The clinic in Houston is delivering bags, cassettes, etc to our hotel and we UPSed the other supplies to the hotel. They said it was fine for us to do that. All we need to do is buy some bleach when we get there for cleaning the machine and surfaces. Phew! I'm tired already... Maybe I'll take bevvy5's advice and let them schlep it around the airport!
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 07, 2012, 03:16:48 PM
The Baxter Home Choice cycler, in it's case, fits under the seat.  I don't know about any other cyclers.
Title: Re: First trip on PD.. Need advice
Post by: lmunchkin on January 07, 2012, 04:43:36 PM
Man, I hate to hear of all these problems traveling (Airlines) for D. patients.  We never fly!  I won't do it, so therefore, we just drive, with everything in the Van.

Sorry guys, it really shouldnt be that way flying either!  Idiots!!!!!

lmunchkin
 :kickstart;
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 07, 2012, 08:24:02 PM
I won't do the drive from Charlottetown, PEI to New York City again, not while I'm still on dialysis anyway.  I'd rather deal with the airlines than drive for 15 hours.
Title: Re: First trip on PD.. Need advice
Post by: jadey on January 08, 2012, 12:10:50 AM
Does anyone know if the PD catheter metal piece will make their metal detectors go off???
Title: Re: First trip on PD.. Need advice
Post by: billybags on January 08, 2012, 03:58:35 AM
We did not have a problem with this. We did find that we had to put the cycler on an ironing board next to our bed  because it was to far across the room to sort out alarms and things, but that worked..
Title: Re: First trip on PD.. Need advice
Post by: amanda100wilson on January 08, 2012, 07:26:04 AM
Not sure if you use Fresenius or Baxter, but if you use Baxter, Just a tip, Jadey if you don't want to go to bed throughout your dialysis treatment, probably frowned on butI did it for 8 years with no peritonitis.  Do your first exchange and disconnect while it dwells, using a flexi-cap on the dialysis set.  My rationale was, that if you do CAPD then you connect and disconnect muliple times through a day amyway.

Get the fluids delivered from Baxter evenfor a short stay, as they are heavy.  Get wheelchair assistance through the airport, much easier, and pre-board so that if your machine fits in an overhead you canget it in, in advance of other passengers.

Never used Except for anything, betadine swabs for an injection port.  Apply, wait about five minutes.  Would double swabjust to make  sure.  I never took extra luggage to accomodate supplies.  In fact, as a family of three, we traveled to California for a week's stay, with two hand luggage cases and two day-sized back-packs, plus the cycler.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 08, 2012, 06:27:56 PM
Does anyone know if the PD catheter metal piece will make their metal detectors go off???

I had more problems getting through the metal detector at The Daily Show than I did going through them at thei airport.  I worried at the titanium end on the catheter would set the alarm off, but it didn't.

Do your first exchange and disconnect while it dwells, using a flexi-cap on the dialysis set.  My rationale was, that if you do CAPD then you connect and disconnect muliple times through a day amyway.

They make caps specifically for that, but I don't remember what they're called.. Multicaps, maybe?  You would disconnect, putting the patient line in the organizer, then there was a minicap on the set, that you connected to your catheter, and the other half of the set was a much bigger cap, that went on the patient line to keep it sterile.  both caps had betadine in them, if I remember right.

I used the Baxter Home Choice Pro cycler, btw
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 08, 2012, 06:39:48 PM
Riki, I use thee Baxter system also. It's called a flexi-cap for the patient line end. I got a box of them with my initial delivery, but was told they were phasing them out as they did not particularly want us disconnecting during treatment. I still have mine ;D
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 08, 2012, 08:02:25 PM
I used to get 2 boxes of those and a box of mini caps with every order.  I thought they were great.  I remember the days when the only way to disconnect from a cycler was to clamp the line and cut it, so there was no disconnecting mid treatment back then.
Title: Re: First trip on PD.. Need advice
Post by: billybags on January 09, 2012, 11:04:24 AM
Joe, I hope you are wrong about them phasing them out. We have had a box for about 2 years, hardly used them, then all of a sudden for what ever reason my husband has to go the the loo in the night. I think I will order a box to be sure.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 09, 2012, 06:29:29 PM
Joe, I hope you are wrong about them phasing them out. We have had a box for about 2 years, hardly used them, then all of a sudden for what ever reason my husband has to go the the loo in the night. I think I will order a box to be sure.

I'd check the box you have to be sure they're not expired
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 10, 2012, 06:43:51 AM
I'm fortunate billybags in that the loo is about 18 feet from my bed. With my 20 foot line, I can get there while connected without any problem. The only thing that would cause me to disconnect during the night, I think, would be some kind of emergency in the house.
Title: Re: First trip on PD.. Need advice
Post by: billybags on January 10, 2012, 10:54:37 AM
Riki, Just checked and they expire May this year. Thanks for that I never thought of looking. I will definitely order another box.
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 10, 2012, 11:21:54 AM
I'm fortunate billybags in that the loo is about 18 feet from my bed. With my 20 foot line, I can get there while connected without any problem. The only thing that would cause me to disconnect during the night, I think, would be some kind of emergency in the house.

I used to connect, drain and fill, then disconnect with the flex caps and go out for a couple of hours.  If I was a little late returning, the machine would be alarming when I came in the door, but it was just a matter of washing my hands and connecting up again
Title: Re: First trip on PD.. Need advice
Post by: billybags on January 14, 2012, 07:57:51 AM
Riki, You are a little monkey.
Title: Re: First trip on PD.. Need advice
Post by: jadey on January 14, 2012, 01:26:07 PM
I'm fortunate billybags in that the loo is about 18 feet from my bed. With my 20 foot line, I can get there while connected without any problem. The only thing that would cause me to disconnect during the night, I think, would be some kind of emergency in the house.

I used to connect, drain and fill, then disconnect with the flex caps and go out for a couple of hours.  If I was a little late returning, the machine would be alarming when I came in the door, but it was just a matter of washing my hands and connecting up again

Riki.. how long were your dwells? Mine are currently 1.5 hours
Title: Re: First trip on PD.. Need advice
Post by: amanda100wilson on January 19, 2012, 09:53:58 AM
If I wanted to go out, I would set my machine up so that it would do do a day dwell, and make the setting so that I did one less dwell in the night.  Then I would count the day dwell as one of the overnight dwells since the day dwell can be the length that you want it to be.  That way there were no alarms.  I can't believe that they're phasing out flexi caps, not that it matters to me as I'm now on NxStage.
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 19, 2012, 02:00:23 PM
My dwell times on the cycler are the same as yours Jadey, 1.5 hours. I do 3 hour dwells for my manual exchanges. Must be doing ok, my labs were better when I met he Neph yesterday  :bandance;
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 19, 2012, 02:09:51 PM
Congrats, Joe!!
The bf has 1.5 - ish hour dwells, too. They tend to change depending on how quickly he fills and drains. I still don't understand it all. His first kt/v test wasn't promising, so they're having him do another one next month.
Title: Re: First trip on PD.. Need advice
Post by: lmunchkin on January 19, 2012, 03:34:27 PM
Correct me if Im wrong here, is that where your drain goes into bags that fan out on the floor.  At the end of treatment, you draw up in syringes and take to clinic?  I always hated that test!  It took up alot of time (and muscle too) to get them done.  And if they were inaccurate, then you had to repeat it. Otherwise, PD was not a bad modality.  Just way too much heavy lifting and storage for me.

lmunchkin
 :kickstart;
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 19, 2012, 05:33:46 PM
Riki, You are a little monkey.

*LOL*  I've been called many things, but I think this one is a first...

I'm fortunate billybags in that the loo is about 18 feet from my bed. With my 20 foot line, I can get there while connected without any problem. The only thing that would cause me to disconnect during the night, I think, would be some kind of emergency in the house.

I used to connect, drain and fill, then disconnect with the flex caps and go out for a couple of hours.  If I was a little late returning, the machine would be alarming when I came in the door, but it was just a matter of washing my hands and connecting up again

Riki.. how long were your dwells? Mine are currently 1.5 hours

Mine were 2 hours
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 19, 2012, 05:39:40 PM
Correct me if Im wrong here, is that where your drain goes into bags that fan out on the floor.  At the end of treatment, you draw up in syringes and take to clinic?  I always hated that test!  It took up alot of time (and muscle too) to get them done.  And if they were inaccurate, then you had to repeat it. Otherwise, PD was not a bad modality.  Just way too much heavy lifting and storage for me.

lmunchkin
 :kickstart;

Yeah, that's pretty much it. We take the drain bag in their entirety plus 24 hour urine. It's a drag... and heavy lifting!   :P
Title: Re: First trip on PD.. Need advice
Post by: Joe on January 20, 2012, 07:23:50 AM
Correct me if Im wrong here, is that where your drain goes into bags that fan out on the floor.  At the end of treatment, you draw up in syringes and take to clinic?  I always hated that test!  It took up alot of time (and muscle too) to get them done.  And if they were inaccurate, then you had to repeat it. Otherwise, PD was not a bad modality.  Just way too much heavy lifting and storage for me.

lmunchkin
 :kickstart;

Only one bag lilmunchkin, it's a 15 liter bag that the cycler drains into. For the kt/V test when you're on PD, I save every drop that goes through me for 24 hours; all the manuals, a jug (that's really not got much in it at all), and and the cycler drain bag. It all goes into a lined box and gets hauled into the clinic for whatever they need to do.

I look at moving the drain bag as one of my daily exercises   :rofl;
Title: Re: First trip on PD.. Need advice
Post by: Riki on January 21, 2012, 10:09:02 PM
I hated moving drain bags.  I didn't like stripping the machine at all.  My mom did it most of the time.  When I lived on my own, my bedroom was directly across the hall from the bathroom.  The back on my computer chair had broken off, so it kinda was a rolling stool.  I'd disconnect the bag, lift it onto the chair, and push it into the bathroom, where I'd drain it into the tub
Title: Re: First trip on PD.. Need advice
Post by: billybags on January 22, 2012, 02:24:42 AM
We have two drain bags joined to make it more or less strenuous to lift. I do the lifting because of hubbies heart and some mornings I am knac*ered lifting them. He uses 3 x 500 bags  plus what he initially drains out, I weigh 7st wet through so you can imagine what weight I have to lift. We are too far from the bath room to have a line,,, plus I like to check the bags in the morning. I do not know how old people go on if they are on there own. I have also become the Queen of box;s I can rip into them like a terrier Oh the joys of Pd
Title: Re: First trip on PD.. Need advice
Post by: rileysmom on January 22, 2012, 06:10:11 AM
i work for an airline (im a f/a) i will tell you two things, first gate check it, DONOT check it at the counter.  sometimes those tags can fall off, and sometimes the rampers will not see the tag right away, most airlines are short handed due to all the staff cuts. also, i would definitely first ask the flight attendants if there is someplace they can put the bag, let them know what it is and how important it is that it doesnt get destroyed , etc. 99percent of the time they will sympathize with you and help you out. i will admit there are times there just isnt any room on the planes, depending if it is a larger a/c or a smaller a/c. but ask them first. and if it is gate checked they will put it in a separate compartment under the "belly" of the plane and it is walked down from the jetbridge to the underbelly so it wont be tossed around. 
Title: Re: First trip on PD.. Need advice
Post by: drgirlfriend on January 22, 2012, 07:46:16 AM
rileysmom - that is what we did and it went well overall. There were some tense moments when it seemed people did not understand what needed to be done. I think a lot of them took one look at the size of the case and freaked out.