Hemodialysis at the World - paying OOP

[sandynd]

Hello everyone! We haven't got another trip planned as we're currently saving up $$. However, my DH has, within the last year, needed hemodialysis. He started out in a centre but then switched to doing his own treatments at home. We have the machine and all the supplies, he needles his own fistula, takes his own measurements, etc. He uses a Fresenius machine (we're Canadian so the NxStage machine isn't available up here and we haven't been trained on it, or I'd just look around for a rental machine!)

Has anyone done hemodialysis near WDW? What centre did you use and how much was the OOP costs? Since dialysis isn't covered under our extended health care, I'd like to know how much extra we need to save in order for him to get treatments. Would it be any less expensive if we bring our own supplies and he runs his own treatment?

Our treatment centre can find us addresses for treatments centres, but they don't know the area, so I'm not sure how convenient the centres are, and they can't really tell us anything about the costs until we schedule a trip. But we can't schedule a trip without saving up the money first!!

Anybody that can give me any help, I would so appreciate it!

 

[I Love Pluto]

I don't understand your hubby's medical condition nor do I understand the terminology used, so I can't help you there. I'm sorry.

I can explain that the nearest town to WDW is Lake Buena Vista. There are several medical places (if one should get sick) on Apopka-Vineland Road, but I don't know their specialties. Maybe your doctor could help you locate a treatment center there.

I hope this helps a little bit.

Tell hubby that we hope he's feeling better.

 

[newdrama12]

Not familiar with Hemodialysis but this is the closest place that looks like they could help. Not sure exactly how is works but this center is about 1.5 miles from the southern end of Disney property

DaVita Celebration Dialysis http://www.davita.com/
1154 Celebration Boulevard, Celebration, FL 34747
1-800-424-6589

 

[daisy_duck]

My husband has used the dialysis center in Celebration the two times we have been to Disney since he started dialysis. He does not have any complaints with them and they always took him at the times he was scheduled. As for the OOP cost I do not know what it would be because his medical insurance pays 100% of his dialysis treatments whether he has them at his home clinic or when he travels. You could probably call the clinic and talk to them about their cost for treatment.

 

[GSUJillybean]

If it helps, Davita is a Southeastern-wide company, and ALL they do is dialysis.

 

[Jedana]

I would see if Fresinus can ship the supplies to the hotel for you. The needles, saline, etc can be brought down with you on the plane; so can the machine. Or can your clinic ship the supplies down for you?

NxStage will ship supplies to your vacation spot, as long as they have a month's notice. Not sure about Fresinus.

Or, see if they can arrange for you to get the supplies at a nearby clinic. We go through Davita, and we can borrow supplies from any of the Davita clinics, as long as we give them advance notice (for large amounts).


http://nxstageusers.com/
They have a lot of information about traveling with equipment on planes. Check the forums.

 

[sandynd]

Thanks for the info so far, everyone! I have contacted the Celebration clinic by email, so hopefully they can give me some more info.

Jedana, we'd be driving down, so no big deal about bringing everything with us - everything except our Fresenius machine - it's huge and needs its own water supply, plumbing, water softener, Reverse Osmosis machine and filtration system. Our bedroom looks like a mini hospital. If we could just unhook our machine and bring it down, I would, but I think it's probably about 300 pounds and I can't lift that into a vehicle!! Plus I can't imagine wheeling it along sidewalks to get it into the room let alone mousekeeping's reaction to a huge plumbing setup in the bathroom. NxStage users are SOOOOOO lucky!! Maybe someday NxStage will come to Canada. If we don't have a transplant in the meantime, I am going to nag DH till he switches! Unless Fresenius wises up and makes a more portable system. I've heard of people installing them in RVs, but I don't think a rental RV company would be anymore thrilled with all the modifications we'd have to make to it than the hotel would be!

My perfect travel setup would be if we could find a centre that has the Fresenius 2008K and would just let us rent time in the chair. We could hook everything up ourselves, use all our own supplies and clean up when we're done, like we do at home.

 

[looo33]

I also use the Davita center in Celebration for hemodialysis when I go to Disney. I have gone 4 times and had 2-3 treatments each trip. Do you have a social worker that is connected to a dialysis center that could help you? When I go, I just tell my case worker and she makes all the arrangements. (I am in NY) I am going again in 24 days! If you are driving, will you need to make arrangements for dialysis on your way down and back? I fly for that reason. I hope things get worked out for you and that you have a great trip!

 

[dclfun]

My son has been on dialysis since he was 20- he's 25 now, and has used the DaVita center in Celebration several times when we've been on vacation. Now he's on peritoneal dialysis and we now live 10 minutes from the resorts/parks so haven't been there in awhile. My biggest concern would be their legal liability if you want to use your own supplies and needles and as such, inability to let you do this. I'm glad you've contacted them and can hopefully get good answers. The other thing to know is that this center is VERY hard to find. I work down the road in an office building on the same street and people stop all the time to ask where to find the center. Fortunately I can help! It's in a small strip "mall"- very small so I don't know that I'd actually call it a mall...just a few storefronts, and is not actually in the city of Celebration, plus there isn't great signage. Make sure they give you detailed driving directions if you decide to go there. I have a feeling that many of their clients are those on vacation at WDW- we always saw several people there who were in our situation and came from the Disney area during their trips. Everyone is very nice there and the nursing staff was excellent.

 

[SueM in MN]

My son has been on dialysis since he was 20- he's 25 now, and has used the DaVita center in Celebration several times when we've been on vacation. Now he's on peritoneal dialysis and we now live 10 minutes from the resorts/parks so haven't been there in awhile. My biggest concern would be their legal liability if you want to use your own supplies and needles and as such, inability to let you do this. I'm glad you've contacted them and can hopefully get good answers. The other thing to know is that this center is VERY hard to find. I work down the road in an office building on the same street and people stop all the time to ask where to find the center. Fortunately I can help! It's in a small strip "mall"- very small so I don't know that I'd actually call it a mall...just a few storefronts, and is not actually in the city of Celebration, plus there isn't great signage. Make sure they give you detailed driving directions if you decide to go there. I have a feeling that many of their clients are those on vacation at WDW- we always saw several people there who were in our situation and came from the Disney area during their trips. Everyone is very nice there and the nursing staff was excellent.

It's good you have contacted DAVITA because they can give you answers and tell you what to do. DAVITA is a nationwide company in the US, so if a patient is receiving dialysis services in one place with DAVITA, it is very easy to transfer care to Orlando temporarily.

I work in a hospital where we have quite a few patients on dialysis on any given day. There are a lotof things involved - Dr's orders needed to get dialysis, order how much fluid to take off, etc.
I'm quite certain that regulations will not allow DAVITA to let you use your own supplies, care and basically rent use of their equipment in their facility. That would be the case even if you are bringing all the supplies and your DH is basically doing the dialysis himself.
They should be able to help you find out and obtain what you need to get care.
His current supplier or doctor should be able to help you arrange things also. I'm sure you're not the first to have traveled from outside the US on dialysis, so I'm sure you will be able to sort it all out, it will just take some time.

 

[DisneyLoverUSA]

Is it possible for him to switch over to Peritoneal Dialysis while on vacation? Then he can do the abdominal cycling while he is asleep. Not sure how the switch would go between Hemo and Peritoneal. I use to be a Hemodialysis nurse and at the time when I worked in Hemo, there was NO HOME HEMO, only Peritoneal at home or HEMo in the clicnic. It's come a long way in the last 15 years.

 

[sandynd]

Hi everyone, sorry to drop out of sight on this thread. So far I have no more answers than I did a couple of weeks ago.

The centre that oversees DH's home hemo gave us the names of clinics in South Florida that work with travelling Canadians, but since the closest one is three hours away from DW, that wouldn't work at all.

Sue, since we're in Canada, we don't have Davita clinics up here, so transferring care temporarily isn't really that simple. I understand the liability issues, but there has to be somewhere that supports home hemo patients - it's not that rare anymore, I don't think.

DisneyLoverUSA, I've been pressuring DH to think about peritoneal. To my mind, it seems a whole lot easier and less complicated, but it grosses him out for some reason (like sticking needles into a huge vein on his arm does not, but I guess to each his own!) I don't think the switch would be simple though as they would have to implant a port access in his abdomen for it, and then train him to cycle. I'm guessing he'd rather skip a trip than do that, since he isn't comfortable with the idea in the first place.

I'm still contacting clinics in Orlando, hoping someone can give me some information. I guess the incredibly complicated medical billing system the US has is standing in the way - apparently prices are different depending on how you're insured, which just seems strange to me - wouldn't everyone get charged the same and then get reimbursed or be responsible for whatever wasn't paid directly? Anyhow, one of the co-ordinators at Central Florida Kidney Centre is working to get me some information, which I will share here when I get it.

Thanks for the suggestions and info so far!

 

[SueM in MN]

I missed a word - I meant to say that DAVITA patients in the US could just transfer care temporarily as an easy process. Not so easy, as you are finding out for people outside the US to get into the system

Keep your hopes up though - you can't be the first Canadians in this situation.

You are correct about the incredibly complicated billing system in the US. Each insurance company has contracts with different providers. And, what will be paid is part of the negotiations. So one person may be paying a lot different price for the very same care. It all depends on what was negotiated.

 

[DvcDoc]

sandynd, I do PD so can't help with the hemo end of things. But I can say for the trip we were planning in January I was working with the CFKC folks. My social worker tracked them down as a backup if I had any issues while on vacation. I didn't need to use them, but it was a comfor to know they were there. I can kind of understand your husband's reluctance about PD, I have the same feelings about hemo. PD seemed to be the modality that worked best for me, and the machine is way smaller.
Best of luck!

 

[sandynd]

Hey DVCdoc! It was actually from a post of yours that I first heard about CFKC - so thank you! I will post what they tell me when they get back to me. Ironically, DH's nickname is Doc!

I honestly thought, when they first presented all the options to us, that PD sounded so much easier and less risky (although you still have to watch for infections around your port.)

When we first started, they implanted a permacath in his jugular vein for access (it was an emergency situation, so we didn't have time to get prepared for any other mode - they had to start dialyzing within a week of when he got seriously ill, although we knew his function had been declining for some time, but the last stage lasted only a few days for us.) He got used to hooking up through the permacath, and they taught him the machine before we really looked into the PD option. He got grossed out about carrying around extra fluid in his abdomen, and about the port (although he had one in his neck, so I don't get it, but his body, his choice!)

They did surgery on his arm in March to create his fistula, and he continued to use the permacath while the fistula matured. Then in June, he went into septic shock from an undetected infection in his catheter, and fortunately the fistula was mature enough to use (he buttonholes) so we just continued on after he learned to needle. Now after the septic episode, he is completely against having an implanted port (I can't blame him, it was a scary few days). So PD is probably out forever.

We're on the transplant list, but nothing's been done except his initial consultation with the transplant team. They're supposed to be testing me to see if we're a genetic match, or if I should be participating in a transplant swap, but so far, nothing. Who knows, by the time we save enough money for the vacation and the hemo he needs, we might have to buy trip insurance in case a transplant comes through

 

[DvcDoc]

I can understand having to rush into dialysis sandy, it is something that can sneak up on you. I had some time from the point my Nephrologist told me my kidneys were failing to when they actually stopped functioning. It let me do some research and I felt PD was best for my situation. Granted, there are some cautions I have to take with a catheter in my abdomen, but with it in 6 months, I haven't had any problems (knock on wood). I'm also on the transplant list, and working my way through my list of potential donors to see if about matches. I have one already, but she has to lose 20 pounds, (about 10 kilos) before they will clear her. Hopefully she can lose it quickly, I'd love to have the transplant done by our next target date for WDW - sometime in August.

Good luck!

 

[sandynd]

for a quick successful transplant for you!! I hope your donor has good luck losing the weight. I also have some weight to lose before I can successfully donate (and so does DH) and I have had good steady success with an iphone app called LoseIt. I hope the process moves along quickly for you!

I got word back from Janet at CFKC today, and each treatment, without insurance, is $500. A bit less than what I was expecting, and we would get $210 per treatment reimbursed from our provincial health care, so each treatment would cost about $300 out of our pocket. Not bad!! I actually have that in my Health Care Spending Account right now, so I'll just keep it there (hopefully no more nasty health shocks in the next while to eat up that money!) and start saving for the actual "vacation" part of the trip.

We still have a lot of stuff going on in our lives (major home renovation so his parents can move in, plus hopefully transplant stuff in the next year or so, plus his mobility has been decreasing steadily due to diabetic neuropathy) so I'm sure vacation will have to take a back-burner a few times. But it would be awesome to think that we could go late 2013 or very early 2014 and get my daughter into the YES program for animation magic and the new program for teens - she's decided she wants to be an animator when she grows up, and she's constantly drawing and starting to refine her writing skills, so who knows? And we both love Disney - wouldn't that be an awesome thing if she ended up working for them or Pixar!!

 

[DvcDoc]

That would be super Sandy! I know how you feel about having your daughter working at Disney, my daughter has applied for the Disney College program and so far has made it through the first two gates and waiting to hear the results of her oral interview. They told her it would take two weeks to get back, and she's on pins and needles. It would be terrific to have her there this fall when we are planning a trip.