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| | |-+  Eeek! Last minute travel for job, center not supportive. UPDATE
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Author Topic: Eeek! Last minute travel for job, center not supportive. UPDATE  (Read 3502 times)
funnygarcia
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« on: August 01, 2009, 06:46:43 PM »

My dh uses NxStage short daily 6 days a week.


Friday afternoon his boss called, due to a last minute cancellation, asked if he could attend a training out of state leaving on Sunday. 

While he is fact gathering from his boss, I call his dialysis nurse.
Can he arrange to have supplies delivered (bagged fluid is the main concern)? 

NO, need 10 day notice to get the travel prescription.


Can he pick up fluids at another center? NO

What can he do? This is his job, it's important and as a new employee  he doesn't want to say no to his boss.   Drive yourself.

(calculating drive time ... uhhhh he would need to leave today!)
Not an option, air ticket is already paid and would not be reimbursed for car travel.

Anything else to suggest?
In-center

Fine lets talk to the social worker.... "we need at least 5 days, but I'll check and call you back"
Possibly missed a call back on cell, but doesn't leave any messages on our home phone. 

:banghead;

He's going. 

Running extra liters today and again on Sunday before he leaves, hoping the airline doesn't freak and try to charge for 6 boxes of bagged fluid/box of supplies/suitcase for warmer and base/ machine.

He plans to run 3 days:  Monday off, run just 20 liters (8 less than his full amount) T, W,and  R .
Run when he gets home late night Friday. 

Something has to change to allow for the unexpected. I'm beyond frustrated and slightly worried that he is traveling without a safety net of back up care or promise of help  if he runs into problems.

How would your center handle the situation?


 
« Last Edit: August 03, 2009, 01:23:54 PM by funnygarcia » Logged
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #1 on: August 01, 2009, 07:39:15 PM »

My experience is that airlines are pretty helpful as long as you have some kind of letter from your renal unit.  Recently organised to be allowed an extra 20kgs for me, my husband and daughter for a trip we are going on next month.  That way we can share out the bags between us.  Ring and explain the situation to the airline and ask them about extra luggage allowances on the plane.  Whew, what a hassle though.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Chris
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« Reply #2 on: August 01, 2009, 07:41:26 PM »

I would talk to NxStage themself since you could not get help from your center. Another option would be to Next Day air supplies to his hotel after he checks in and gets a room number. Expensive yes, but health more of a concern wouldn't you say.

Airlines might make an exception if notified in advanced about luggage. However there needs to be a back up plan there to. What if they loose that luggage or doesn't make the flight by some mistake. Call the airline tonight, most are open 24 hours.

Good Luck, hope you have good news on here later.
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Diabetes -  age 7

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M3Riddler
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« Reply #3 on: August 01, 2009, 07:43:49 PM »

That is a little situation you have there. I usually only need to give a weeks notice to have supplies delivered. However, there were times where there was an emergency where sometone in my family had passed away and they rushed delivered some supplies out.
If you are unable to drive, then the only other option would be the dreaded in=center treatment. How many days will you be gone?
I know there are many NxStage Users at www.nxstageusers.com who travel on a regular basis and they may be able to give you some suggestions. They may even have something in their files section on their webpage... www.nxstageusers.com/files or in their forum  www.nxstageusers.com/forum

If you cant find your information in this forum, which is a great source, you may want to check out some of the others mentioned above...

HH
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Rerun
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Going through life tied to a chair!

« Reply #4 on: August 02, 2009, 03:32:36 AM »

That is another reason I had to take a disability.  In my job I may be asked to go somewhere long distance on the spur of the moment and the dialysis centers need 3 weeks notice.  Just would not work.  Even the one I went to would not work with my schedule so I could work more hours.  They don't care.  As long as Medicare pays them they could care less.

              Best of luck!    :banghead;
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willowtreewren
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« Reply #5 on: August 02, 2009, 05:01:31 AM »

Call NxStage now and explain your situation. They have been very helpful to us when things have gone awry.

Good luck.

Aleta
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Wife to Carl, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
funnygarcia
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« Reply #6 on: August 02, 2009, 06:43:14 PM »

Thanks for the support, things worked out well at the airport this afternoon.  ;D

Helped dh load up the cart to haul into the terminal....
Machine, 6 boxes fluid, one box supplies (cartridge box) and IV Pole. Clothing and bracket fit into one small suitcase (he used a hex key to take apart the base bracket of the cycler)


Before we even get up to the ticket  counter, the TSA agent is peering over the counter, eyeing the mound of boxes.

Walk up to the counter to speak to an agent.. she too is raising eyebrows and grimacing.

 Before she has a chance to say anything I state "they are life sustaining medical supplies" and point out how many and the usage.

And then the fun begins....

1. Is this all for one person?

yes

2. how much does that silver box weigh? We can't take over 100 pounds.

It's close to 100 pounds, my understanding is that weight limits do not apply for medical devices.
uhh, let me check into that...

It weighed 100.5

Okay fine.

3. Okay, sir please sign this.

What is it? (Trying to read fine print....) 

It's a waiver of liability.

NO, there is no limit to liability for medical devices. Here is the code where that is stated (pulling out the "leaving on a jet plane" article).

uhh, let me check on that... okay you are all set.

Success!  :2thumbsup;

 

Lesson learned.. Sticking to what you know to be true, polite but firm. And having some papers in hand to show to agents.. goes a very long way. 

 





« Last Edit: August 03, 2009, 01:20:34 PM by funnygarcia » Logged
willowtreewren
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« Reply #7 on: August 02, 2009, 07:03:14 PM »

Yea!

 :cheer: :cheer: :cheer: :cheer:
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
monrein
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« Reply #8 on: August 03, 2009, 04:08:26 AM »

What a great job you did of being prepared for the obstacles.  Fantastic!
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Pyelonephritis (began at 8 mos old)
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Cadaveric transplant 1985
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(2 1/2 hours X 5 weekly)
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willieandwinnie
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« Reply #9 on: August 03, 2009, 05:38:47 AM »

 :cheer: Good for you.  :cuddle;
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lola
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« Reply #10 on: August 03, 2009, 06:10:27 AM »

 :cheer: glad it all worked out 4 u. What center did u use? My husband Otto is also on nxstage and we live in Brooklyn Park..........
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Rerun
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Going through life tied to a chair!

« Reply #11 on: August 03, 2009, 06:14:27 AM »

What does "dh" stand for again, I can't remember??

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funnygarcia
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« Reply #12 on: August 03, 2009, 01:19:41 PM »

What does "dh" stand for again, I can't remember??

Dear husband.. or depending on the current mood, darn husband.  :rofl;
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