Nocturnal Dialysis trip...room choice? Length of trip?

[daisyx3]

Quick background...DH's kidneys have been getting bad for a while, or should I say kidney since they determined one is all shriveled up and the other one has been working for both. No idea why, but he thinks it may have happened when he was doing karate.
DH (56) has had no discernible symptoms except his bloodwork numbers are terrible. His urine output has been fine and dandy. Due to a recent further drop in his bloodwork results, however, he has been on dialysis for a couple of weeks now at a davita center, but we plan to switch to the nocturnal dialysis ASAP. He has no side effects from the dialysis treatments--no fatigue, etc. The technicians at the center and his nephrologist think he's a great candidate for it and is very strong.
We did have a 7 night cruise scheduled at the end of May, but after some research and discussion on the cruise boards I think it is wise to change it to a land trip, just in case something goes wrong. We may do a 3 night later to test how we would do on a cruise with this, when we are more used to the routines. Let me say again...he does not feel sick at all, and is bummed at canceling, but he understands that I want to be a little more practical about this.
I already have flights purchased. We arrive on a Friday night and I have Villains after hours tickets and a room at the Polynesian DVC villas. So,any suggestions on what resort to go to after that, since we aren't cruising? Every level of resort has at least some openings. I could even book the Polynesian villas and maybe not have to move, or go over to club level so we have food options in case he does get fatigued.
Question 2, should I keep our original dates, which would be 8 nights total? Or bite the bullet on the airline change fee and shorten the trip to maybe leaving Wednesday? My research says nocturnal dialysis is 3 times a week or more; if we shorten the trip it will be fewer supplies to ship to the hotel(s).
Any advice taken.

 

[Michigan]

Are you sure there is a nocturnal dialysis center near Disney. We live close to Animal Kingdom and my dad did dialysis 4 hours a day 3 days a week and his centers closed at night.

 

[kaytieeldr]

If he's doing fine on dialysis now, I would wait until after the two trips to start - peritoneal?

 

[karen4546]

Yes, and my brother does the peritoneal dialysis. He goes to WDW a couple of times/year. He has been doing peritoneal dialysis for over 3 years. The supply center will ship the supplies to the resort and he just brings his "machine". They just deliver the boxes (and there are alot) to his room when he arrives. He hooks up and it takes 8-10 hrs for a complete cycle. If he starts late, then he just gets up later the next day.

 

[SueM in MN]

Because you will have a lot of supplies, I think it would be easier to stay in one place.

 

[daisyx3]

Are you sure there is a nocturnal dialysis center near Disney. We live close to Animal Kingdom and my dad did dialysis 4 hours a day 3 days a week and his centers closed at night.

I guess I wasn't clear; we will be doing it at home. He runs his own business and wants to get out of the center as quickly as he can, and they support this. So we will be doing it at the resort.

 

[daisyx3]

Because you will have a lot of supplies, I think it would be easier to stay in one place.

That's what I was thinking. If we move at all we will just move to club level.

 

[kaytieeldr]

I guess I wasn't clear; we will be doing it at home. He runs his own business and wants to get out of the center as quickly as he can, and they support this. So we will be doing it at the resort.

Does he get supplies shipped, or directly from DaVita? If the latter, the social worker at the facility he's connected with might be able to help him get supplies from a center in Orlando.

 

[Bianca and Bernard]

Make sure your social worker gets you in touch with their locations in Orlando. You'll want that back up in case things go south...the machine breaks down or your supplies are shorted and you need some sharps. Your center should be able to ship directly to your hotel, but notify the hotel (not the call center) that you will be having medical supplies delivered directly to them, so they are prepared for them. bring extras of things you can't easily get at a CVS (like sharps, medications, etc).

I would stick with just one resort. Moving the equipment and supplies is a pain. I would let mousekeeping know to not touch the equipment or supplies (lock up all medications). Neatly bag the trash for them, break down the boxes, etc. Definitely tip for the extra work.

My husband is 5 years post new used part (kidney as well..and btw, your story? Similar to my DH. Martial arts guy; one kidney is the 'lazy brother in law'...lives in the basement, does zero work and mooches off mom, or dad in this case; other kidney was going strong, but adrenal cancer got it). We did home hemo, and yes, did it at Disney and in Vegas and many other places.

Once you are better with the dialysis, you can do a cruise (do it before he gets a transplant...you will need to be much more cautious after). If I remember correctly, Davita did a couple of 'dialysis cruises', where they were on board with extra supplies and several dialysis techs and nurses, for help. Might be able to find something like that.

 

[daisyx3]

Make sure your social worker gets you in touch with their locations in Orlando. You'll want that back up in case things go south...the machine breaks down or your supplies are shorted and you need some sharps. Your center should be able to ship directly to your hotel, but notify the hotel (not the call center) that you will be having medical supplies delivered directly to them, so they are prepared for them. bring extras of things you can't easily get at a CVS (like sharps, medications, etc).

I would stick with just one resort. Moving the equipment and supplies is a pain. I would let mousekeeping know to not touch the equipment or supplies (lock up all medications). Neatly bag the trash for them, break down the boxes, etc. Definitely tip for the extra work.

My husband is 5 years post new used part (kidney as well..and btw, your story? Similar to my DH. Martial arts guy; one kidney is the 'lazy brother in law'...lives in the basement, does zero work and mooches off mom, or dad in this case; other kidney was going strong, but adrenal cancer got it). We did home hemo, and yes, did it at Disney and in Vegas and many other places.

Once you are better with the dialysis, you can do a cruise (do it before he gets a transplant...you will need to be much more cautious after). If I remember correctly, Davita did a couple of 'dialysis cruises', where they were on board with extra supplies and several dialysis techs and nurses, for help. Might be able to find something like that.

Thanks for the tips! We haven't talked to a social worker yet. He is getting surgery 2/6 to get a port for the hemodialysis, and I imagine then we will finally see a dietician and a social worker. I only went to his surgery for his dialysis port, and then to his first dialysis. I guess I'll figure out about the equipment, whether we do every night or every other night etc. and be able to adjust by our trip.
As I said, if I change at all I will be going from the DVC villa to club level; I thought it would be good to have those snacks and amenities if he does get fatigued by then.

 

[SueM in MN]

Disney charges a package delivery fee for packages mailed/delivered to their resorts.
They fo make exceptions for medical supplies and equipment. Check with the front desk to make sure you are not charged.