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Author Topic: First trip on PD.. Need advice  (Read 15845 times)
jadey
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« 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!
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
lmunchkin
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« Reply #1 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;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Joe
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« Reply #2 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
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Riki
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« Reply #3 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
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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drgirlfriend
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« Reply #4 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?
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
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jadey
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« Reply #5 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.
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
Joe
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« Reply #6 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.
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« Reply #7 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.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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HD - Dec 2008-present
Annig83
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« Reply #8 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.
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
jadey
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« Reply #9 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.
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
Riki
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« Reply #10 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.
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dialysis - April 2001-May 2001
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jadey
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« Reply #11 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;)
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
drgirlfriend
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« Reply #12 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.
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
Joe
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« Reply #13 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
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drgirlfriend
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« Reply #14 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.
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
Riki
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« Reply #15 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.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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HD - Dec 2008-present
drgirlfriend
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« Reply #16 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.
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
Riki
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« Reply #17 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.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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HD - Dec 2008-present
Joe
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« Reply #18 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.
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Riki
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« Reply #19 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
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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Joe
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« Reply #20 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.
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Riki
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« Reply #21 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.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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Annig83
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« Reply #22 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.

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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
bevvy5
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« Reply #23 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.
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drgirlfriend
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« Reply #24 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!
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
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