hemo : we're gonna do it - travel

[mcclane]

just abit of background, when i was on pd, we would travel once a year, whether it be cruises or what have you.  It was simple, I would let baxter know of my itinerary, they would organize the shipment of the pd bags, and when i arrived at my destination, the pd bags were there waiting for me.

only thing i had to bring was items like mini caps, clamps, bandages (for the pd catheter - showering), tapes, and a collapsible iv pole.

when the doctor told me i could no longer do pd but do hemo, i was devastated.  my first thought was : our traveling is now over.

but after talking to the social worker, the nurses, and reading the posts of others who have traveled on hemo, my wife and I decided we're gonna do it, we're going to go somewhere.

we're looking at 6 days in seattle.  we're familiar with the city, so we thought this would be a good test to see how treatments go.  if it goes well, we may decide to look at other cities.

It'll be a first, i've never been to a US health care facility, so one of the things that i'm prepared for is the bill at the end of the treatment. 

i've already started to make arrangements with 2 dialysis centers : northwest kidney centre and davita.  Only reason i put my name on 2 is that neither place could confirm a spot for the date requested (mid november).  both said something about the 'schedule' is not ready yet for the month of november.  NKC indicated that they would get a better idea next month (sept), while davita told me they would know for sure a month before my requested date (mid oct).

we like to book our accomodations/flights early, but this really puts us in a bind.  do we book the accomodations/flights now or wait ?  I have a hunch they'll get me in, it is a matter of where and what time.

another issue i was wondering about : can i bring some of the supplies to the centre ?  my hospital provides me with all i need to do dialysis, if i can bring some of the stuff to the centre, hopefully that can lower the final bill ?

[MooseMom]

I haven't an answer to a single question, but I applaud you for jumping in and getting back to doing the things you love.  We Yanks like to make everything so damned complicated, but I know that with persistence, you'll get the job done.

My mom, when she was on inclinic hemo, travelled all over the country to see various family members, and I don't remember her bringing specific supplies except for her spray-on anesthetic (for which she had to pay out of pocket, anyway), so for someone coming from Canada, I don't know what the deal is.  But I'm sure you are not the first Canadian to dialyze in the US, so do you think your social worker might have the answer to that particular question?

[aharris2]

 

You go, mcclane!

I say book it and don't worry (or if you worry, there's flight insurance and refundable tickets, and hotel reservations are easy to change). There are 7 DaVitas within a 25 mile radius of Seattle and 5 Northwest Kidney Centers (Bill Peckham should have info on the NKCs). One of these has gotta have a spot for you.                           

We have traveled a lot since my brother started dialysis almost 9 years ago, dialyzing in 8 other states in the southwest, northeast and southeast, and one other country (Guatemala) and in 4 Florida locations (our home state) from Pensacola to Miami. The centers will never confirm availability early but they would always tell us whether or not they were typically able to accommodate travelers. Also, the time slot info was never available until the week before because they had to set their schedule. But we have never had a problem!

Do it and have a blast, born to roam!

[paris]

Go for it!  There are many members here that can tell you more about the Seattle centers.  I don't have answers either, but I wanted to encourage you to go.  Claim your wander lust and have an adventure.   Very excited for you.   

[mcclane]

thanks for the encouragements !!

I know that I'll have to pay out of my own pocket first.  My social worker told me that our provincial gov't will reimburse (Alberta Health and Wellness) up to $529 per dialysis treatment.  Anything above that is out of my own pocket, but that extra amount i can claim on my income tax.  The Southern Alberta Kidney Foundation will also loan you the cash (again, up to $529 per treatment), so it won't be a huge financial burden.  I've been told it will take at least 3 months for the provincial gov't to send you a cheque, and if i take out the loan, i then pay the kidney foundation back at that time (no interest).

I can forsee one huge challenge : the restrictive diet !!  I have a bad see food diet, i see food, i eat it. 

Because I'm only doing one run while we're there, it will be tough for me to limit my diet, but i know it must be done (that goes for fluid intake too).  Right now, I guzzle close to 2 L a day (thanks to daily hemo), so i can get away with increased fluid intake.

with the wealth of information on this site, i decided i'm not going to let hemo strangle what i loved to do, which is travel.  True, it maybe a challenge, but i'm determined to overcome it.

If this seattle trip goes well, we're going to take a look at vegas next. 

[aharris2]

Vegas is particularly easy. As a tourist mecca, its dialysis units cater to tourists!

[Riki]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

[bevvy5]

I really hope that you continue to post about your experiences.  My husband has been on PD, we take a few vacations a year and it works well.  Now he's waiting for a fistula, planning on home hemo but with no NxStage in Canada we thought that would be it.

His team has been very suportive. One thought is to perhaps keep his PD tube in, keep it viable and he could do PD while he's on vacation with maybe one hemo centre run planned.  I think they're going to do that through until he's doing home hemo, maybe do a test run or see how it goes.

But we too are determined to not stop travelling.  BTW, we live in British Columbia, neighbour, so are in the same boat with having to pay up front but getting it reimbursed.  And we've been told to that the hospital will provide quite a bit of stuff that we can take with us or ship ahead.

[Bill Peckham]

I'd let NW Kidney Centers know you're coming from outside the US and what your reimbursement limits are, give them the chance to do the right thing. If the cost was less than $500 dollars per treatment would you be able to do more than one treatment? Shame to have strictly watch your diet when you're vacationing. NKC also has a unit in Port Angeles which puts it adjacent to the Olympic National Park. I don't know this for certain but I think it is the closest year around dialysis unit to a national park in the US.

thanks for the encouragements !!

I know that I'll have to pay out of my own pocket first.  My social worker told me that our provincial gov't will reimburse (Alberta Health and Wellness) up to $529 per dialysis treatment.  Anything above that is out of my own pocket, but that extra amount i can claim on my income tax.  The Southern Alberta Kidney Foundation will also loan you the cash (again, up to $529 per treatment), so it won't be a huge financial burden.  I've been told it will take at least 3 months for the provincial gov't to send you a cheque, and if i take out the loan, i then pay the kidney foundation back at that time (no interest).

I can forsee one huge challenge : the restrictive diet !!  I have a bad see food diet, i see food, i eat it. 

Because I'm only doing one run while we're there, it will be tough for me to limit my diet, but i know it must be done (that goes for fluid intake too).  Right now, I guzzle close to 2 L a day (thanks to daily hemo), so i can get away with increased fluid intake.

with the wealth of information on this site, i decided i'm not going to let hemo strangle what i loved to do, which is travel.  True, it maybe a challenge, but i'm determined to overcome it.

If this seattle trip goes well, we're going to take a look at vegas next.

[Riki]

This is a bit off topic, but I had to ask..

bevvy5, why would your husband stop PD if he doesn't have to?  As someone who's been on PD and would go back to it in a heartbeat if I could, I don't really see the logic

It certainly is a heck of a lot easier to travel while on PD, you pretty much just take everything with you, or ship it to your destination.  That's what I used to do, ship all the supplies I'd need to the hotel I was staying at, and they would store it for me until I got there.  Those guys were great.  I had a heck of a time finding a hotel that would even accept packages for me if I wasn't there.

[bevvy5]

This is a bit off topic, but I had to ask..

bevvy5, why would your husband stop PD if he doesn't have to?  As someone who's been on PD and would go back to it in a heartbeat if I could, I don't really see the logic

It certainly is a heck of a lot easier to travel while on PD, you pretty much just take everything with you, or ship it to your destination.  That's what I used to do, ship all the supplies I'd need to the hotel I was staying at, and they would store it for me until I got there.  Those guys were great.  I had a heck of a time finding a hotel that would even accept packages for me if I wasn't there.

I agree, we've been to Florida, Hawaii and a houseboating vacation while hubby was on PD.  And we have a place in NW Washington and it's easy to go down for two or three days at a time.  But he's currently on nine hours a night on the cycler plus a manual exchange in the early evening, pretty much maxed out and his tests are not looking as good as they should.  So a change to hemo is not his choice but is the plan.

But his nephrologist has a few patients that basically do a hybrid method, mostly home hemo but if they are away - at least one travels for work and one travels extensively for pleasure - they do PD for up to two to three weeks, then back on home hemo.  It doesn't work for everybody but it may be an option for him and his dr. is willing to try it.

We usually use timeshares when we travel, other than to our own place, and I'm amazed at how helpful everybody is.  When I try to explain that we are having some medical supplies delivered, I always feel a little bit explaining it's a pallet of supplies.  But we've always arrived at our resort and our boxes are neatly stacked in our unit even though I always tell them that I"m happy to use a luggage cart and do it myself. 

[Riki]

ok.. that makes sense.  I was close to that point when I was 14.  I was lucky enough that I didn't need to go on hemo, as I got a kidney.  My body had 8 years rest before starting on PD again.  I did PD for almost 5 years before starting hemo, and that was because of a nasty fungal infection.  This December is 3 years on hemo.

[mcclane]

I called nw kidney centres around mid aug.  at that time, they could not confirm whether or not that had any room, but cheryl did say she would have a better picture next month (september).  we're prepared to pay out of our own pocket, so cost is a factor, but not primary.

I plan on doing one treatment, so i really gotta watch what i eat, we've been to seattle numerous times, and the food there is always outstanding (ie burgermaster !!).

we'll be staying in the downtown area, so according to the nkc website, elliot bay is the closest one.

I'd let NW Kidney Centers know you're coming from outside the US and what your reimbursement limits are, give them the chance to do the right thing. If the cost was less than $500 dollars per treatment would you be able to do more than one treatment? Shame to have strictly watch your diet when you're vacationing. NKC also has a unit in Port Angeles which puts it adjacent to the Olympic National Park. I don't know this for certain but I think it is the closest year around dialysis unit to a national park in the US.

thanks for the encouragements !!

I know that I'll have to pay out of my own pocket first.  My social worker told me that our provincial gov't will reimburse (Alberta Health and Wellness) up to $529 per dialysis treatment.  Anything above that is out of my own pocket, but that extra amount i can claim on my income tax.  The Southern Alberta Kidney Foundation will also loan you the cash (again, up to $529 per treatment), so it won't be a huge financial burden.  I've been told it will take at least 3 months for the provincial gov't to send you a cheque, and if i take out the loan, i then pay the kidney foundation back at that time (no interest).

I can forsee one huge challenge : the restrictive diet !!  I have a bad see food diet, i see food, i eat it. 

Because I'm only doing one run while we're there, it will be tough for me to limit my diet, but i know it must be done (that goes for fluid intake too).  Right now, I guzzle close to 2 L a day (thanks to daily hemo), so i can get away with increased fluid intake.

with the wealth of information on this site, i decided i'm not going to let hemo strangle what i loved to do, which is travel.  True, it maybe a challenge, but i'm determined to overcome it.

If this seattle trip goes well, we're going to take a look at vegas next.

[lmunchkin]

I say go for it Mc.  Don't let this disease take what you enjoy most from you.  I hear Seattle is nice in November.  Hubby and I are going to load up the Van with NxStage mach. and supplies and go someplace northward.  And if our plans up there don't fall through, then we may go Southwards. 

We have not been anywhere for any length of time since 2004.  So yea, we are due!  Im so happy you are going to do this!  Hats off to you!
Keep us posted on your endeavors!

lmunchkin   

[Riki]

I called nw kidney centres around mid aug.  at that time, they could not confirm whether or not that had any room, but cheryl did say she would have a better picture next month (september).  we're prepared to pay out of our own pocket, so cost is a factor, but not primary.

I plan on doing one treatment, so i really gotta watch what i eat, we've been to seattle numerous times, and the food there is always outstanding (ie burgermaster !!).

we'll be staying in the downtown area, so according to the nkc website, elliot bay is the closest one.

I'd let NW Kidney Centers know you're coming from outside the US and what your reimbursement limits are, give them the chance to do the right thing. If the cost was less than $500 dollars per treatment would you be able to do more than one treatment? Shame to have strictly watch your diet when you're vacationing. NKC also has a unit in Port Angeles which puts it adjacent to the Olympic National Park. I don't know this for certain but I think it is the closest year around dialysis unit to a national park in the US.

thanks for the encouragements !!

I know that I'll have to pay out of my own pocket first.  My social worker told me that our provincial gov't will reimburse (Alberta Health and Wellness) up to $529 per dialysis treatment.  Anything above that is out of my own pocket, but that extra amount i can claim on my income tax.  The Southern Alberta Kidney Foundation will also loan you the cash (again, up to $529 per treatment), so it won't be a huge financial burden.  I've been told it will take at least 3 months for the provincial gov't to send you a cheque, and if i take out the loan, i then pay the kidney foundation back at that time (no interest).

I can forsee one huge challenge : the restrictive diet !!  I have a bad see food diet, i see food, i eat it. 

Because I'm only doing one run while we're there, it will be tough for me to limit my diet, but i know it must be done (that goes for fluid intake too).  Right now, I guzzle close to 2 L a day (thanks to daily hemo), so i can get away with increased fluid intake.

with the wealth of information on this site, i decided i'm not going to let hemo strangle what i loved to do, which is travel.  True, it maybe a challenge, but i'm determined to overcome it.

If this seattle trip goes well, we're going to take a look at vegas next.

When I go to NYC, I generally don't know the times of when my treatments will be until the day that I arrive there.  We've actually called them from Montreal, while en route from Charlottetown.  We had a 3 hour stop, so we figured it was as good a time as any. *L*  They do tend to know at least a month in advance if they can take you or not

[Bill Peckham]

we'll be staying in the downtown area, so according to the nkc website, elliot bay is the closest one.

The Seattle Kidney Center is at 15th and Cherry about 8 blocks from Elliott Bay and the Haviland Kidney Center is next door to Elliott Bay. The West Seattle Kidney Center is about 10 or 11 minutes away. I started treatment at Haviland went to Elliott Bay next and then West Seattle and now I'm at the Seattle Kidney where the home hemo unit is based.

[mcclane]

I say go for it Mc.  Don't let this disease take what you enjoy most from you.  I hear Seattle is nice in November.  Hubby and I are going to load up the Van with NxStage mach. and supplies and go someplace northward.  And if our plans up there don't fall through, then we may go Southwards. 

We have not been anywhere for any length of time since 2004.  So yea, we are due!  Im so happy you are going to do this!  Hats off to you!
Keep us posted on your endeavors!

lmunchkin   

We were in seattle last year (oct), when i was on pd (much simpler than hemo).  It was a tad on the warm side, but very nice.

It is much more challenging on hemo, as the centres can't let you know in advance until a month or so, it makes it tough to book anything (accomodations, flight).

[mcclane]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

[Riki]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

[mcclane]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

what kind of dialyzers to the centres provide ?

[Bill Peckham]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

what kind of dialyzers to the centres provide ?

They use Optiflux at NKC. Bring your own head phones because I think the ones they provide to visitors are the ear bud style.
Bring your laptop to use wifi. FYI - you need to sign an agreement to not use the wifi for porn, best to get that surfing done before you come for treatment.
Ice. And radiant heat panels above the chair but I don't think any of the downtown units have gotten the heated chairs yet - maybe Elliott Bay but Seattle Kidney Center was the last to get the old style so they'll be the last to get the ones with heat.

[mcclane]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

what kind of dialyzers to the centres provide ?

They use Optiflux at NKC. Bring your own head phones because I think the ones they provide to visitors are the ear bud style.
Bring your laptop to use wifi. FYI - you need to sign an agreement to not use the wifi for porn, best to get that surfing done before you come for treatment.
Ice. And radiant heat panels above the chair but I don't think any of the downtown units have gotten the heated chairs yet - maybe Elliott Bay but Seattle Kidney Center was the last to get the old style so they'll be the last to get the ones with heat.

Got a chuckle out of the 'surfing for porn' before treatment. 

sounds like about the only supplies i'll need to bring are tape, gauze, possibly syringes to pick at the scab, and steri strips to hold the needle in place.  Since doing hemo almost daily, i feel awfully warm so I don't think i'll need any additional source of heat.  we do have a laptop but most likely won't be bringing it down with us, one less thing to carry.  I'll bring my psp though.

[Bill Peckham]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

what kind of dialyzers to the centres provide ?

They use Optiflux at NKC. Bring your own head phones because I think the ones they provide to visitors are the ear bud style.
Bring your laptop to use wifi. FYI - you need to sign an agreement to not use the wifi for porn, best to get that surfing done before you come for treatment.
Ice. And radiant heat panels above the chair but I don't think any of the downtown units have gotten the heated chairs yet - maybe Elliott Bay but Seattle Kidney Center was the last to get the old style so they'll be the last to get the ones with heat.

Got a chuckle out of the 'surfing for porn' before treatment. 

sounds like about the only supplies i'll need to bring are tape, gauze, possibly syringes to pick at the scab, and steri strips to hold the needle in place.  Since doing hemo almost daily, i feel awfully warm so I don't think i'll need any additional source of heat.  we do have a laptop but most likely won't be bringing it down with us, one less thing to carry.  I'll bring my psp though.

You can use the MediSystem button hole needles and they now come with a steri pik (sic) to pick the scabs I switched from 20 gauge needles a while ago and haven't looked back. I always bring my canulation supplies with me when I travel and then see what they're offering. A good chance to try something different to, if nothing else, confirm your preference.

[mcclane]

As a Canadian who's traveled to the States on hemo, I'll tell you this; if there's anything that your home unit provides besides the treatment itself (drinks, blankets, bandaids) take them with you, as most likely, the center there will not provide it.  I learned this the hard way.  I was lucky, I happened to have some bandaids of my own with me, r else I would have just had gauze and tape on my sites

thanks for the head's up !  I order a whole pile of supplies from the hospital, so I'll just make up a medical kit and take it with me - hemo on/off trays, prefilled saline syringes, gauze, tape, steri strips, ...

Anything extra at all, it's best to have it with you.  I didn't know I'd need bandaids.  I was lucky that I happened to have some with me.  A friend of mine went to Las Vegas last year, and she had to take special dialyzers with her, because they wouldn't provide them.

what kind of dialyzers to the centres provide ?

They use Optiflux at NKC. Bring your own head phones because I think the ones they provide to visitors are the ear bud style.
Bring your laptop to use wifi. FYI - you need to sign an agreement to not use the wifi for porn, best to get that surfing done before you come for treatment.
Ice. And radiant heat panels above the chair but I don't think any of the downtown units have gotten the heated chairs yet - maybe Elliott Bay but Seattle Kidney Center was the last to get the old style so they'll be the last to get the ones with heat.

Got a chuckle out of the 'surfing for porn' before treatment. 

sounds like about the only supplies i'll need to bring are tape, gauze, possibly syringes to pick at the scab, and steri strips to hold the needle in place.  Since doing hemo almost daily, i feel awfully warm so I don't think i'll need any additional source of heat.  we do have a laptop but most likely won't be bringing it down with us, one less thing to carry.  I'll bring my psp though.

You can use the MediSystem button hole needles and they now come with a steri pik (sic) to pick the scabs I switched from 20 gauge needles a while ago and haven't looked back. I always bring my canulation supplies with me when I travel and then see what they're offering. A good chance to try something different to, if nothing else, confirm your preference.

I think I'll do the same.  worst case senario, i bring it back home with me.

[mcclane]

woo hooo !!!!  just received an email from cheryl lake and she said they can fit me in on nov 14.  Unfortunately it won't be at elliot bay, but at lake city kidney centre in lake forest park.  Will have to take a taxi up there.