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Author Topic: hemo : we're gonna do it - travel  (Read 16508 times)
bevvy5
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« Reply #25 on: October 10, 2011, 12:40:43 PM »

We're getting serious about planning our trip to Hawaii in January.  Found out it's about $650 per treatment in Lihue on Kauai.  Also saw something on line that says Ontario pays $210 per day for hemo.  Hoping BC pays closer to the over $500 that Maclane is getting from Alberta, otherwise that's a huge hit even if hubby can get away with one or two treatments a week.

Canadian Thanksgiving today so phoning BC medical tomorrow and will post what we find out. 

Bev
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mcclane
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« Reply #26 on: October 10, 2011, 03:36:37 PM »

We're getting serious about planning our trip to Hawaii in January.  Found out it's about $650 per treatment in Lihue on Kauai.  Also saw something on line that says Ontario pays $210 per day for hemo.  Hoping BC pays closer to the over $500 that Maclane is getting from Alberta, otherwise that's a huge hit even if hubby can get away with one or two treatments a week.

Canadian Thanksgiving today so phoning BC medical tomorrow and will post what we find out. 

Bev

found out that seattle will be charging $853 US for a dialysis run.  I wonder if I bought dialysis treatments in bulk if they would give me a discount ?  :rofl; :rofl;

In all seriousness, i'm only going to do one run, so i just paid it it in full.  The kidney foundation does have a program where they will loan you up to $500ish so you can pay for the treatment (you do have to pay it back though when the Alberta gov't pays you back), but i nixed that idea. 

My social worker did mention that the federal gov't will allow you to claim on your income tax the portion you paid out of your own pocket.  might have to photocopy the receipts though.

bevvy5 : see if there is any social programs that will do a loan.  it may help.

I should let you know, there is a plethora of tests that must be done - these tests are for the dialysis centre that you are going too, they will request a whole pile of tests, from chest xrays, bloodwork, rectal/nasal swaps, ecg, a doctor to verify your physical state, and sometimes they may contact your social worker for your mental state.  As far as i know, northwest kidney centre in seattle didn't request for a 'mental state' from the social worker.
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Cordelia
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« Reply #27 on: October 10, 2011, 04:10:37 PM »

I hope you can go, Mcclane, best wishes to you and your wife!    :clap;   Keep us posted!   :thumbup;  Seattle is nice, I've been there.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
mcclane
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« Reply #28 on: October 11, 2011, 07:52:39 AM »

I hope you can go, Mcclane, best wishes to you and your wife!    :clap;   Keep us posted!   :thumbup;  Seattle is nice, I've been there.

flight has already been booked, accomodations have been booked, and (hopefully) they should have received my payment.  I told my wife, we're going, no matter what  :2thumbsup;

this'll be our 4-5th time there.  :thumbup;
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Cordelia
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« Reply #29 on: October 11, 2011, 08:32:02 AM »

That's awesome!    :bandance;     :bandance;     :bandance;  Enjoy!
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
bevvy5
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« Reply #30 on: October 11, 2011, 01:42:52 PM »

Wow, $853 - I thought it would be cheaper on the mainland.

IN any event we found out that BC will pay $473 per treatment, so that's bearable.  And hubby still has his PD catheter so he may be doing hybrid, maybe only one run a week, it's all up in the air yet.  Thought this might be useful information for future people looking for prices.

We are having some difficulty dealing with social workers as he has feet in three different systems - still part of the PD program as he may be doing some of that, but is going to start training for home hemo next week and in the meantime is having hemo at the hospital - so we're trying to get the home hemo social worker to get stuff started, at least the reservation made.  He's VRE as well although our neph has advised that is now becoming so common that most centres don't really bat an eye at it anymore - hope he's right.

Bad timing to be taking a vacation in three months but after the year we've had, we are not cancelling unless we absolutely have to.  Travelling with family, tickets paid for, accomodation booked.  But it will definitely be a consideration in future budgeting for vacations.

Have a wonderful time.  Be careful of the flying fish at Pike's Market.  We love the zoo in Seattle - we live in Abbotsford so Seattle is a great weekend thing for us.
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mcclane
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« Reply #31 on: October 12, 2011, 07:55:14 AM »

Wow, $853 - I thought it would be cheaper on the mainland.

IN any event we found out that BC will pay $473 per treatment, so that's bearable.  And hubby still has his PD catheter so he may be doing hybrid, maybe only one run a week, it's all up in the air yet.  Thought this might be useful information for future people looking for prices.

We are having some difficulty dealing with social workers as he has feet in three different systems - still part of the PD program as he may be doing some of that, but is going to start training for home hemo next week and in the meantime is having hemo at the hospital - so we're trying to get the home hemo social worker to get stuff started, at least the reservation made.  He's VRE as well although our neph has advised that is now becoming so common that most centres don't really bat an eye at it anymore - hope he's right.

Bad timing to be taking a vacation in three months but after the year we've had, we are not cancelling unless we absolutely have to.  Travelling with family, tickets paid for, accomodation booked.  But it will definitely be a consideration in future budgeting for vacations.

Have a wonderful time.  Be careful of the flying fish at Pike's Market.  We love the zoo in Seattle - we live in Abbotsford so Seattle is a great weekend thing for us.

I was told by the social worker that dialysis treatments in the US varies from state.  Some are cheaper while some are more expensive.  You know what gets me ?  When our loonie was sailing high, they couldn't give me a price yet, not until our dollar tanked that's when I got a price.   :rofl;

I know exactly what your husband is going thru, I used to be in 3 camps.  Before they removed my pd catheter, I was doing abit of pd while doing home hemo training (and dialysing at the unit too).  All i can say is : don't cancel your trip.  Make it happen.  Yeah, it does suck that dialysis has to be involved but enjoy life and travel when you can.

We've never been to the zoo in seattle, but where we're staying pike place is only 5 blocks away.  Lots of great mom and pop places to eat in pike place too.
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Cordelia
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« Reply #32 on: October 12, 2011, 07:57:36 AM »

You have a really great attitude, Mcclane, I really hope your trip goes very smoothly!    :waving;   :thumbup;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
mcclane
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« Reply #33 on: October 12, 2011, 08:01:08 AM »

You have a really great attitude, Mcclane, I really hope your trip goes very smoothly!    :waving;   :thumbup;

one thing I'd really like to do is dialysis at sea.  If you time it right, you'd be hooked up while the ship is at sea not at port, so you won't be missing much anyways.  However, cost is the huge factor.  My social worker says it costs about $1100 per treatment, while others say it is around $700/treatment.  Anyways, for 3 treatments, looking at well over $2000, not small change.  The loan from the kidney foundation will help but if it is over $2000, still looking at $500 ish from your own pocket.
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bevvy5
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« Reply #34 on: October 12, 2011, 08:08:15 AM »


I was told by the social worker that dialysis treatments in the US varies from state.  Some are cheaper while some are more expensive.  You know what gets me ?  When our loonie was sailing high, they couldn't give me a price yet, not until our dollar tanked that's when I got a price.   :rofl;

I know exactly what your husband is going thru, I used to be in 3 camps.  Before they removed my pd catheter, I was doing abit of pd while doing home hemo training (and dialysing at the unit too).  All i can say is : don't cancel your trip.  Make it happen.  Yeah, it does suck that dialysis has to be involved but enjoy life and travel when you can.

We've never been to the zoo in seattle, but where we're staying pike place is only 5 blocks away.  Lots of great mom and pop places to eat in pike place too.

We are not stopping travelling until we absolutely can't.  We work really hard, self employed and work at home so we have to get the heck out of here to really have any time off.

We had to cancel one trip while Greg was on PD, but we've been to Florida last January and in May went to Vegas - our daughter got married.  When he started PD we went on a houseboating trip in the Shuswap Lakes in B.C..  Rented a U-haul trailer, hauled the stuff up there along with our gear and he did manual exchanges for the week.

We've been on a cruise and while it's nice, it's not really our thing.  But if you can swing it financially and it's your cup of tea, it would be a great way to go.

Just got confirmation that Greg's been booked in for our Hawaii trip, got the days he wanted and the contact person for the company is getting in touch with the home hemo social worker.  In three months from right now we should be taxiing out of Seattle on our way to Lihue - can hardly wait.
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mcclane
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« Reply #35 on: October 12, 2011, 10:49:43 AM »


I was told by the social worker that dialysis treatments in the US varies from state.  Some are cheaper while some are more expensive.  You know what gets me ?  When our loonie was sailing high, they couldn't give me a price yet, not until our dollar tanked that's when I got a price.   :rofl;

I know exactly what your husband is going thru, I used to be in 3 camps.  Before they removed my pd catheter, I was doing abit of pd while doing home hemo training (and dialysing at the unit too).  All i can say is : don't cancel your trip.  Make it happen.  Yeah, it does suck that dialysis has to be involved but enjoy life and travel when you can.

We've never been to the zoo in seattle, but where we're staying pike place is only 5 blocks away.  Lots of great mom and pop places to eat in pike place too.

We are not stopping travelling until we absolutely can't.  We work really hard, self employed and work at home so we have to get the heck out of here to really have any time off.

We had to cancel one trip while Greg was on PD, but we've been to Florida last January and in May went to Vegas - our daughter got married.  When he started PD we went on a houseboating trip in the Shuswap Lakes in B.C..  Rented a U-haul trailer, hauled the stuff up there along with our gear and he did manual exchanges for the week.

We've been on a cruise and while it's nice, it's not really our thing.  But if you can swing it financially and it's your cup of tea, it would be a great way to go.

Just got confirmation that Greg's been booked in for our Hawaii trip, got the days he wanted and the contact person for the company is getting in touch with the home hemo social worker.  In three months from right now we should be taxiing out of Seattle on our way to Lihue - can hardly wait.

awesome !  good to hear !  like you, i'm going to do what i can to enjoy traveling.  It is something to look forward to, especially after a hectic work and dialysis schedule.

traveling while on pd is much simpler.  I would do manual exchanges as well, I had plans to bring the cycler for the next trip but hemo but me to that idea.  :rofl;

my wife and I enjoy cruising alot.  The food is great, you get a new port of call every day or every other day, and of course accomodations are included.  we've been on 4, 3 caribbeans and 1 alaskan.  we felt by far the alaskan was the most enjoyable, as it wasn't 30+ degrees with humidity.  :rofl; :rofl;

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poncho
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« Reply #36 on: October 28, 2011, 01:23:45 PM »

I travel all the time on HD. I have dialyzed in San Francisco, Santa Clara, Boca Raton, Providence RI, Boston, Burlington, Vt., West Palm Beach, Quebec, Bahamas, Guadeloupe, Iceland, England, Amsterdam, Vienna, Venice, Brest France, Avignon France, Marseilles France, Cognac France, angouleme France.

just go for it, get cancellation insurance, don't worry, and have fun!
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poncho
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« Reply #37 on: October 28, 2011, 01:31:19 PM »


We're getting serious about planning our trip to Hawaii in January.  Found out it's about $650 per treatment in Lihue on Kauai.  Also saw something on line that says Ontario pays $210 per day for hemo.  Hoping BC pays closer to the over $500 that Maclane is getting from Alberta, otherwise that's a huge hit even if hubby can get away with one or two treatments a week.

Canadian Thanksgiving today so phoning BC medical tomorrow and will post what we find out. 

Bev


You can negotiate price with them. Fresenius quoted me 720 a treatment. I told them that I get reimbursed 400 and would look for a cheaper center and they agreed to take 400. Same for Davita. I think they get less than 300 from Medicare, but make money on Medications.

found out that seattle will be charging $853 US for a dialysis run.  I wonder if I bought dialysis treatments in bulk if they would give me a discount ?  :rofl; :rofl;

In all seriousness, i'm only going to do one run, so i just paid it it in full.  The kidney foundation does have a program where they will loan you up to $500ish so you can pay for the treatment (you do have to pay it back though when the Alberta gov't pays you back), but i nixed that idea. 

My social worker did mention that the federal gov't will allow you to claim on your income tax the portion you paid out of your own pocket.  might have to photocopy the receipts though.

bevvy5 : see if there is any social programs that will do a loan.  it may help.

I should let you know, there is a plethora of tests that must be done - these tests are for the dialysis centre that you are going too, they will request a whole pile of tests, from chest xrays, bloodwork, rectal/nasal swaps, ecg, a doctor to verify your physical state, and sometimes they may contact your social worker for your mental state.  As far as i know, northwest kidney centre in seattle didn't request for a 'mental state' from the social worker.





EDITED: Fixed quote tag error-kitkatz,Moderator




« Last Edit: November 27, 2011, 10:38:56 AM by kitkatz » Logged
mcclane
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« Reply #38 on: October 28, 2011, 01:34:50 PM »

I travel all the time on HD. I have dialyzed in San Francisco, Santa Clara, Boca Raton, Providence RI, Boston, Burlington, Vt., West Palm Beach, Quebec, Bahamas, Guadeloupe, Iceland, England, Amsterdam, Vienna, Venice, Brest France, Avignon France, Marseilles France, Cognac France, angouleme France.

just go for it, get cancellation insurance, don't worry, and have fun!

everything is set, so we're looking forward to getting away.  It'll be good experience to see what the medical system is like in other countries too.
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mcclane
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« Reply #39 on: October 28, 2011, 01:35:49 PM »

We're getting serious about planning our trip to Hawaii in January.  Found out it's about $650 per treatment in Lihue on Kauai.  Also saw something on line that says Ontario pays $210 per day for hemo.  Hoping BC pays closer to the over $500 that Maclane is getting from Alberta, otherwise that's a huge hit even if hubby can get away with one or two treatments a week.

Canadian Thanksgiving today so phoning BC medical tomorrow and will post what we find out. 

Bev


You can negotiate price with them. Fresenius quoted me 720 a treatment. I told them that I get reimbursed 400 and would look for a cheaper center and they agreed to take 400. Same for Davita. I think they get less than 300 from Medicare, but make money on Medications.

found out that seattle will be charging $853 US for a dialysis run.  I wonder if I bought dialysis treatments in bulk if they would give me a discount ?  :rofl; :rofl;

In all seriousness, i'm only going to do one run, so i just paid it it in full.  The kidney foundation does have a program where they will loan you up to $500ish so you can pay for the treatment (you do have to pay it back though when the Alberta gov't pays you back), but i nixed that idea. 

My social worker did mention that the federal gov't will allow you to claim on your income tax the portion you paid out of your own pocket.  might have to photocopy the receipts though.

bevvy5 : see if there is any social programs that will do a loan.  it may help.

I should let you know, there is a plethora of tests that must be done - these tests are for the dialysis centre that you are going too, they will request a whole pile of tests, from chest xrays, bloodwork, rectal/nasal swaps, ecg, a doctor to verify your physical state, and sometimes they may contact your social worker for your mental state.  As far as i know, northwest kidney centre in seattle didn't request for a 'mental state' from the social worker.

i didn't know you could negotiate the price.  kinda late now as everything is paid for.  will remember that for next time.
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poncho
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« Reply #40 on: October 28, 2011, 02:04:15 PM »

What you have to remember about dialysis (or any medical situation) in the US is that it is a business, not a service. As long as the provider can make a profit off you, they'll do it. If not, they won't, unless required by law. Their aim is to maximize profit, so they'll try to make you pay as much as they can. Non profit centers, if you can find one, may well be different.
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mcclane
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« Reply #41 on: October 28, 2011, 03:31:14 PM »

update : time and day has been confirmed, but it is at 5:15 am in the morning !

since we don't be renting a car, and the buses don't even start that early, the only option left is taxi.
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lmunchkin
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« Reply #42 on: October 28, 2011, 04:26:23 PM »

McClane, just want to tell you that J & I spent 2 wonderful weeks in Fla.  It was long over due (2004) and it was no negotiating or cutting deals.  He didnt go to clinics for dialysis.  We loaded little NxStage in our van with supplies and really had an awesome & peaceful time together!  Hope to do more for my husband.

I have to admit, that I was a little apprehensive at first, but now that we actually did it, we will jump at every chance we can to get away!  Two things holding us back is my job and "money". LOL  So those of you that want to but are apprehensive, just DO IT.  No regrets and so thankful for the opportunity. 

Dialysis is not what keeps us from traveling, it is us that find it so hard to travel due to dialysis.  With NxStage, it is no longer a problem. Best part of all, our insurance covered it all.  No calling clinics to make the arrangements, not necessary with NxStage!

Lord, will you please shut this lady up about the "NxStage".  Sorry, I DO LOVE THIS LITTLE MACHINE!

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
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« Reply #43 on: October 28, 2011, 04:37:55 PM »

Quote
Lord, will you please shut this lady up about the "NxStage".  Sorry, I DO LOVE THIS LITTLE MACHINE!

I know how you feel!  :rofl; :rofl;

mcclane, have a WONDERFUL trip!

Aleta
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bevvy5
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« Reply #44 on: October 28, 2011, 08:13:07 PM »

What you have to remember about dialysis (or any medical situation) in the US is that it is a business, not a service. As long as the provider can make a profit off you, they'll do it. If not, they won't, unless required by law. Their aim is to maximize profit, so they'll try to make you pay as much as they can. Non profit centers, if you can find one, may well be different.

Hmm, very interesting.  I think that in Hawaii, at least where we're going, there is only one company, so no bargaining there.  But we're planning trips to California and Oregon next year too so will definitely keep that in mind.

Palm Springs is much more reasonable - I've been told it's $400 without and $600 with medications.  Our HD nurse is saying we shouldn't need anything with going for a week, can take arenesp with us and everything else can be done before or after we go.

I'm assuming our social worker has the details for what Hawaii needs but thanks for the heads up.  I'll be bugging them in mid November, our trip is mid January and making sure it all gets done.

Thanks very much for the info.

Oh, and no NxStage for us Canadians, not in the foreseeable future.

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lmunchkin
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« Reply #45 on: October 30, 2011, 11:26:54 AM »

That is ashame Bevvy, cause it is the wave in the US.  You will here more and more about this Modality, and maybe Canada will realize it is to their benefit because of ER and Hospital admits are so much less with this machine.  That stuff can really cost for country's.  In US, it is a matter of paying for all of Medical situations, but they have found that in ESRD, it is better dialysis at home, especially with NxStage!

Hopefully soon, Canada will pick this little jewel up as a part of their modality.  With proper training, I do believe most would do this!

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
mcclane
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« Reply #46 on: October 31, 2011, 07:56:57 AM »

That is ashame Bevvy, cause it is the wave in the US.  You will here more and more about this Modality, and maybe Canada will realize it is to their benefit because of ER and Hospital admits are so much less with this machine.  That stuff can really cost for country's.  In US, it is a matter of paying for all of Medical situations, but they have found that in ESRD, it is better dialysis at home, especially with NxStage!

Hopefully soon, Canada will pick this little jewel up as a part of their modality.  With proper training, I do believe most would do this!

lmunchkin
 :kickstart;

Unfortunately, no nxstage for us canucks.  Believe me, if I had access to a nxstage, i'd bring that sucker along everywhere  :2thumbsup;

I read somewhere that Health canada has actually approved the nxstage machine itself, but the bags it uses have not been approved.  Reason being, those bags (dialysate bags ?) require a DIN number (drug identification number).  I remember when i was on pd, all the pd bags had a DIN number on it.  This is what's holding up nxstage in canada, not the machine but the dialysate bags the machine uses as Health Canada deems it a 'medication'.

So now, it is really a gov't hold up on the nxstage machine. 

Gawd, how i hate this fridge sized dialysis machine at home  :rofl; :rofl;
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lmunchkin
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« Reply #47 on: October 31, 2011, 12:46:54 PM »

What about the new addition to NxStage, "PureFlow"?  It is a cabinet that cycler sits on that you put water in a concentrated bag that makes a 3 day batch of Dialysate.  Yes I have premixed bags, but I only use them incase of ER or traveling.  I really love the pureflow addition!  You have a 3 day supply already mixed with water.  Not so many boxes to break down!  No hanging of the bags cause with Pureflow, you just run dialysate tube up to cycler cartlidge.  It really is an easy addition to nxstage.

Any rate, sorry it is not available for you guys and is all tied up in "RED TAPE".  Crazy!!!!!  Like Dialysis isnt hard enough to go through!

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
mcclane
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« Reply #48 on: November 01, 2011, 07:25:43 AM »

What about the new addition to NxStage, "PureFlow"?  It is a cabinet that cycler sits on that you put water in a concentrated bag that makes a 3 day batch of Dialysate.  Yes I have premixed bags, but I only use them incase of ER or traveling.  I really love the pureflow addition!  You have a 3 day supply already mixed with water.  Not so many boxes to break down!  No hanging of the bags cause with Pureflow, you just run dialysate tube up to cycler cartlidge.  It really is an easy addition to nxstage.

Any rate, sorry it is not available for you guys and is all tied up in "RED TAPE".  Crazy!!!!!  Like Dialysis isnt hard enough to go through!

lmunchkin
 :kickstart;

you're not kidding.  Whenever Health Canada makes up its mind and assigns a DIN to the dialysate bags, we have to put up with the old fashioned dialysis machines.
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« Reply #49 on: November 27, 2011, 10:40:16 AM »

Hawaii has a 6 month to a year waiting list at its dialysis centers. Plan early.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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