I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Traveling Tips and Stories => Topic started by: Tío Riñon on July 09, 2017, 03:13:44 PM
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Aloha! Just returned from a two week trip to the islands of Hawaii. I was in Oahu (Honolulu) and Maui (Lahaina). Had a great time overall! Here are some observations if you plan to visit (remember these are for patients on PD):
I had my clinic nurse arrange for back-up at local clinics. Since PD isn't supported at most clinics, you may have to drive 30-45 minutes to arrive at your facility. Mine were the following:
Liberty Dialysis Home Program
2226 Liliha Street
Honolulu, HI 96817
(808)585-4648
Rainbow Dialysis - Wailuku Clinic
80 Mahalani Street, Suite 100
Wailuku, HI 96793
(808)298-0555
I didn't need any service in Honolulu, but did stop by Rainbow for my Epogen injection. Rainbow is affiliated with Kaiser Permanente and is a DaVita franchise. My contact, Matthew, was cordial and helpful. I definitely recommend this location which is near the airport. Also, I had ordered too much solution and he accepted some boxes for training purposes. This was excellent because I didn't want it to go to waste. Liberty Dialysis doesn't accept donations from patients. You will find that this policy varies from facility to facility, so call and ask if you have extra solution.
My friends and I stayed in hotel condos. They are condos which are purchased by owners in a complex, but overseen by a management company like a hotel for rent. Each condo has a bedroom (or two), bathroom (or two), living room, and kitchen. There may also be laundry facilities and a lanai (balcony). Be aware that the quality of furniture and appliances vary. It is up to the owner of the condo to make improvements. Some may have 70s or 80s furniture while others are current with today's trends. It is worthwhile because you can purchase your own food and stay in control of your budget and renal diet. There was plenty of storage for my travel order of solution and I was able to setup for my PD just like at home. We generally loved our room configurations.
Be sure to call ahead and confirm delivery of your solution. Mine was late in Maui, but luckily there was time for Baxter to follow up and ensure its delivery. There should be no charges by the hotel for receiving and holding the delivery. Baxter requires you to make arrangements 4-6 weeks ahead of time through their International Dept. Also, there is a charge of $100 for the order and another fee based on the number of boxes you order. This is only true for Hawaii and Alaska. Shipments in the continental US are free.
Air travel was sometimes interesting. Our flight from Oahu to Maui was scheduled on Island Air. They use puddle jumpers (prop planes) and didn't want to allow my cycler on board due to weight and concern about fitting in the overhead bins. I was told that I should have called them ahead of time to inform them that I was bringing the device. I explained that there was nothing stating this on their web site and that I had never done so with any other airline. I ended up talking to a manager/supervisor named Rick and we finally worked out some compromises. I was allowed to bring the cycler on board, but if it didn't fit, I would turn it over for gate check. He wanted me to sign a waiver, but changed his mind. I told him that even if I sign it, I would still sue the company if anything happened to my $20,000 machine. Luckily everything worked out fine and it fit in the overhead compartment.
When I returned from Maui to Oahu, TSA (which had an extraordinary long line) stopped me from using my rented cart to go through the inspection area to my gate. Despite my statement that I had a medical condition and couldn't carry my cycler along with my other luggage AND pointing out that I have been permitted to take my cart at other airports, she insisted that I couldn't do so there. I asked about other options and she said that I could leave the line and go back to the airline ticket counter and request assistance (porter and/or wheelchair), go through and find a porter at one of the gates to help, or get my phone (which was already being scanned) and call the airline for assistance. When I asked why she couldn't assist me with the issue, she exclaimed that she was security and it wasn't her job! In the end, I proceeded with my searches and two other TSA officers contacted my airline and made arrangements for me to use a wheelchair to carry my luggage. Plan accordingly.
Also, please be aware that Baxter will only ship solution, NOT your cassettes, tubing, and other supplies. I packed all of my needed materials in a separate suitcase and checked it for FREE. Airlines are required to allow you to do this, but you may have to explain the situation (I have a medical device and these are the medical supplies). I never check my cycler and always carry back-up supplies in the cycler bag in case my medical supplies bag is lost. The back-up clinic is another option should something go amiss.
Finally, I went swimming! :yahoo;
Conventional wisdom is to only go in the ocean where there is little chance of contamination of the catheter with bacteria or other germs. However, I also went in the hotel condo pool and would have entered the waterfalls on the Road to Hana. This was possible because I use a colostomy bag instead of the recommended waterproof patch/bandage. It contains my catheter and keeps it dry. The opening is just big enough to hold my tip and tube. It has a strong adhesive which affixes to my abdomen and creates a seal to keep out the water. I wear a rashguard (surfer t-shirt) to conceal the device and protect against the sun. I was floating and swimming with my friends having a great time. Afterwards, go through your normal process to care for the catheter.
Hope this information has been helpful. Do you have any suggestions or questions?
Mahalo.
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3 1/2 years on PD i had been searching for a better way to seal my cath so I could fall in the lake/river.
Never once thought of using a colostomy bag. WONDERFUL Idea!
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Sounds like you were really well organized. Traveling can be a pain in the butt under "normal" circumstances. But traveling while on D is extra so. Glad you had a great trip.
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Thanks for the trip report. Glad that you had a good most uneventful trip. I'm surprised that you would do the waterfalls given the they talk about all the risks from the parasites, it was enough to get me worried without a port into my belly:
http://www.hawaiihealthguide.com/healthtalk/display.htm?id=221
If you do Facebook please will you consider joining the group Dialysis Traveler Group (link follows) and posting your trip report as well? (Just copy and paste it.)
https://m.facebook.com/groups/773617152683074
A woman in the UK is building that group and there is a nice steady stream of activity with people sharing their travel stories and needs.
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would still sue the company if anything happened to my $20,000 machine.
FAA regulations make the airline liable for the full cost of any medical equipment.
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Thanks for the trip report. Glad that you had a good most uneventful trip. I'm surprised that you would do the waterfalls given the they talk about all the risks from the parasites, it was enough to get me worried without a port into my belly:
http://www.hawaiihealthguide.com/healthtalk/display.htm?id=221
If you do Facebook please will you consider joining the group Dialysis Traveler Group (link follows) and posting your trip report as well? (Just copy and paste it.)
https://m.facebook.com/groups/773617152683074
A woman in the UK is building that group and there is a nice steady stream of activity with people sharing their travel stories and needs.
Whoa! Thanks for the information about the parasites. Glad that I didn't end up going in the waterfalls now that I have read it. The worst that I had heard about them was being sure not to stand underneath the falling water since boulders could potentially drop down on swimmers. :o
I would be more than happy to share my report, but unfortunately, I'm not a Facebook user. Bummer...because I enjoy exchanging travel information with other dialysis patients.
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would still sue the company if anything happened to my $20,000 machine.
FAA regulations make the airline liable for the full cost of any medical equipment.
Good to know.
Also just learned this as I reviewed the TSA web site to file my complaint:
"You are not required to remove your shoes if you have disabilities and medical conditions. However, your shoes must undergo additional screening including visual/physical inspection as well as explosives trace detection testing of the footwear. You can request to be seated during this portion of the screening."
I always get a private pat-down and private screening for my cycler, so this allows me to skip a step at the x-ray machine. Any other TSA or airline advice?
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I have traveled in Alaska with PD If you live in the state like I do they will ship it for free. When I travel to my wife's village Baxter pays for it on the flights to the village. I had to call Baxter and the small airline to have them bill Baxter. If I had to pay for the solution to be shipped it would be .80 cents a pound. That can add up fast when a box weighs about 30#. A Friend flies me up in a small two seat plane and there is only room for the supplies and the machine. Weight is always issue on small planes so it is great that Baxter pays the freight. Again this is because I live in the state.
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I would be more than happy to share my report, but unfortunately, I'm not a Facebook user. Bummer...because I enjoy exchanging travel information with other dialysis patients.
I went ahead and posted a link back to here. Given the destination it should be a popular post.
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would still sue the company if anything happened to my $20,000 machine.
FAA regulations make the airline liable for the full cost of any medical equipment.
Wish that were true here. Air Canada broke the door on my PD machine (was a Baxter Home Choice) by turning the case upside down and putting something heavy on top of it. They wouldn't allow us to take it as carry on, and had to be checked. All they would allow us to do is put stickers that said "fragile" on it, though, I think that made it a target. They paid for the case to be repaired, but refused to touch the cost of repairing the machine
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Wish that were true here. Air Canada broke the door on my PD machine (was a Baxter Home Choice) by turning the case upside down and putting something heavy on top of it. They wouldn't allow us to take it as carry on, and had to be checked. All they would allow us to do is put stickers that said "fragile" on it, though, I think that made it a target. They paid for the case to be repaired, but refused to touch the cost of repairing the machine
Did your clinic make you pay for the machine or did they eat it?
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Wish that were true here. Air Canada broke the door on my PD machine (was a Baxter Home Choice) by turning the case upside down and putting something heavy on top of it. They wouldn't allow us to take it as carry on, and had to be checked. All they would allow us to do is put stickers that said "fragile" on it, though, I think that made it a target. They paid for the case to be repaired, but refused to touch the cost of repairing the machine
Did your clinic make you pay for the machine or did they eat it?
the machine was owned by the province. They just took it and had it repaired, I imagine. They gave me a new one, and when I was finished with it, it was given to my dialysis unit to use for training
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:thumbup; Thanks for sharing this information. I always promised my wife a trip to Hawaii, but I never delivered because of dialysis. I lived there for a few years and know Oahu quite well.
I dream of returning to the surf but I don't think I'd chance an infection to do it. My wife takes vacations with a girlfriend without me. She's in Italy right now. She went to Alaska last year, and Europe
the year before that. I don't want to go to Europe, but I'd love to see Alaska.