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Author Topic: Hi there, my intro story  (Read 1849 times)
Ontarian
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Hello from the North

« on: August 10, 2015, 06:25:40 AM »

I have been on dialysis for about 18 years with a time out of 4 years on account of a transplant. I have done nocturnal dialysis for a year before my transplant.
Now I am on conventional dialysis but am hoping to get on nocturnal dialysis before the winter. I live in Canada and we do not have approval yet for the nxstage one system where a patient can travel with there machine. This is of great interest as I would love to be able to travel again . I am
Interested in hearing about patients who are on the nxstage system and to hear what they feel about it.
I am married to a great Christian wife and we love being born again. It defines who we are. Thanks for you interest. Bye for now.  :welcomesign;
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Vt Big Rig
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« Reply #1 on: August 10, 2015, 07:15:23 AM »

I am on NxStage and we are starting out on our first extended RV trip this weekend. We have arranged for supplies to be there when we get there (I hope).

We did do a "test run" in the travel trailer over July 4th and other than some pressure issues we did fine. We think these were related to arm position as my fistula is pretty fussy. We have "re-designed" my arm support.

There is a particular Next Stage forum here. Read through that and you will gather much information.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Hootie
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« Reply #2 on: August 10, 2015, 07:35:58 AM »

Have not traveled with the NxStage system, but the machine is great and easy to use!
The NxStage support team is fantastic! If in treatment, you to head of cue and never have to wait more than a minute or so. Their response is always..."I can help you with that" and they proceed to do that. We love the machine and the entire support team! :bandance;
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: August 10, 2015, 01:57:38 PM »

I'm on Nxstage, I use the Pure Flow at home, and bags with travel. I travel a lot, it's great. The only thing that's less 'funny' is the travel-coffin you need to put the machine in 'hold' when travelling by plain, as Nxstage forgot to put wheels on it. So we'll be driving to Portugal and taking the boat to Spain while having the machine in the soft case with wheels.

Take care, Cas

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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Simon Dog
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« Reply #4 on: August 11, 2015, 08:14:26 AM »

I'm on Nxstage, I use the Pure Flow at home, and bags with travel. I travel a lot, it's great. The only thing that's less 'funny' is the travel-coffin you need to put the machine in 'hold' when travelling by plain, as Nxstage forgot to put wheels on it. So we'll be driving to Portugal and taking the boat to Spain while having the machine in the soft case with wheels.

Take care, Cas
The coffin come in a *just* under the 100lb airline weight limit - perhaps wheels would have made it too heavy
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iolaire
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« Reply #5 on: August 11, 2015, 08:23:08 AM »

I live in Canada and we do not have approval yet for the nxstage one system where a patient can travel with there machine. This is of great interest as I would love to be able to travel again.
Welcome, good luck getting nxstage.  I travel a lot and have had good experiences with in center treatments well traveling. 

Generally in center treatments have been under $300 USD per session  (Chile, South Africa and Singapore). Ireland was about the same plus mandatory lab work that meant two sessions and lab work added up to just over $800 USD.  So far my US health insurance has covered treatments, but at that rate I could see paying myself for a trip or so a year if I had to.  When traveling I get no IV medicines.  So far I've done ok skipping those and getting them when I return to my center.  Our trips generally are for one week.

So far other than Chile the Fresenius centers I've dialysis in have had newer equipment that my US center.  Chile had older machines and some newer machines that the less stable patients were using.

The biggest down side with in center travel is you are city bound as far as dialysis center.  In Ireland I had to go back to Dublin for each treatment so that was time consuming (but better than staying home) and in Chile we remained in Santiago and did not try to get down to Patagonia.  But honestly even before dialysis my wife and I started staying in a city for the full week and not hopping from place to place.

I also appreciate how all non US centers provide you with tea or coffee and a snack mid treatment.
« Last Edit: August 11, 2015, 08:25:07 AM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Darthvadar
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« Reply #6 on: August 11, 2015, 01:45:09 PM »

Hello Ontarian...

 :welcomesign; to our little community... Lots of Canadians around here, I think....

Post often....

Darth... Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
mawils0n
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« Reply #7 on: December 29, 2015, 02:38:29 PM »

Please know that NxStage is moving quickly into many Canadian provinces. in 2015. Manitoba and B.C. are in the forefront. Ontario is lagging...wouldn't you know it, our local dialysis centre in London told us they were not interested in getting NxStage. They also told us we weren't "suitable for home haemo" because we are on a well and septic here. Well, phooey to that! NxStage is designed for home use, and is perfect for us, so we decided to travel 3 hours to another centre where they have NxStage machines and training. NxStage is working great and my husband is feeling soo much better...he wants to start travelling again. We are looking for any NxStage users who might want to cruise together.
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justagirl2325
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« Reply #8 on: December 29, 2015, 05:23:31 PM »

That's total bs. I'm in Ontario and my husband does home hemo (evening or nocturnal) with Baxter ak96 and we are on a well with a septic. No problems with water. Better actually cause the water is free :-)
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Simon Dog
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« Reply #9 on: December 30, 2015, 07:55:53 AM »

Even if the well is not suitable for the NxStage pure flow, you could use bags - assuming the dialysis center was willing to pay the extra cost.  I think bags were the only option when the System 1 was first introduced.
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mawils0n
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« Reply #10 on: June 20, 2017, 08:26:28 AM »

We have been waiting for 2 years here in Ontario to get NxStage travel bags so we could travel without the PureFlo. But although they are now legal here,  our centre will not authorize it. When I called our Centre to ask I was told they only had one home haemo patient on the "travel bags", and that was because the patient has NO water at all.  I guess it all comes down to cost. But it sure would be nice to have some. Even if only for emergencies, because we occasionally have problems with the PureFlo leaking and not drying out very fast, so we have to wait. Meanwhile my  husband can't dialyze. Tech support said just go get some of the pre-mixed bags and hang them....well, alas we do not have any bags, not even for emergencies.
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Simon Dog
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« Reply #11 on: June 20, 2017, 08:43:08 AM »

The FMC clinic I use insists I keep a 5 day inventory of bags available for use when the PureFlow fails.    I've been on NxStage for about 3.5 year, and have the cycler replaced once and the PureFlow 4 times.
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Vt Big Rig
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« Reply #12 on: June 23, 2017, 03:17:05 AM »

We travel quite a bit and only one time did we have trouble with bags getting delivered (they shorted me a day). We keep a 4 day supply on hand all the time for emergencies or impromptu trips.

I HATE using bags but love that we can travel with them
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #13 on: June 23, 2017, 01:05:15 PM »

We travel quite a bit and only one time did we have trouble with bags getting delivered (they shorted me a day). We keep a 4 day supply on hand all the time for emergencies or impromptu trips.

I HATE using bags but love that we can travel with them


This! We had to have at least 5 days at all times... :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
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