iolairemcfadden

In December I started dialysis with in center hemodialysis, something I knew was coming for at least five years. (Two weeks before I received my first call from the Kidney transplant list, but the match was not good - ideally this is a short term situation.)

It seems like I’ll be able to keep up our travel schedule of a few international trips each year as long as I plan out my in center treatments (three times per week). Non US travel will be self-pay so that will be an added cost to each trip.

Does anyone here have any experience traveling with in center hemodialysis? I’m really interested in real life experiences, good centers and self-pay costs etc…

(cross posting on MilePoint)

8dimsum

The treatment center where you are receiving care should have a casemanager or social worker available to help you with your plans.

Where are are you going to visit? Dates? I don't recall exactly if it was a "reference" book of dialysis units --but the potential unit needs to know your personal data, health status, lab values, type of filtration, requested dates, etc. Their business office will need to confirm payment. The facts need time to be presented and verified. If you are visiting more than one area, the care units will need to be plotted out and scheduling confirmed. This detail work should be handled by your current care providers. Most likely the accepting unit will need info to make a decision to provide care; then close to your actual treatment dates, "current" info and additional labwork.

Traveling as a patient just takes on an extra dimension. There are dialysis units world wide! Early planning and flexibility will be key.

If you are interested in cruising, there is a "Dialysis at Sea" company that sets up a treatment room for cruising patients. Not sure which ships.

iolairemcfadden

Thank you for the response. My DaVita center will only schedule travel for me to visit other DaVita centers in the US. That's helpful but doesn't cover the world.

I'll be in Singapore in a few weeks and set up my own appointment (via email) at a Fresenius related center. My DaVita nurse helped fill out their forum with everything expect for orders for a current HIV test. I emailed four different centers found via http://www.fmc-sg.com/patients-and-c...-a-destination to get pricing (all around $500 Singapore dollars/session) and all responded. I’ve learned that out of the US as a Aetna member I’m self-pay but may be reimbursed 50% as an out of network treatment.

It seems like Fresenius is the best source of global centers at this time. There is another site that tries to list centers with reviews - http://www.globaldialysis.com/ - but it doesn't seem like it has much traction and the reviews are very spotty. Also the forums at http://ihatedialysis.com/forum/ have some travel related information with comments on some centers in places like Italy and Croatia.

Also interesting all the places in Singapore do 4 hour dialysis sessions, versus here where its 3.5 hours (or less depending on the persons weight).

Next I'll be planning dialysis in Johannesburg and Cape Town for August/September. There are some reviews on http://www.globaldialysis.com/ for that destination assuming the centers still exist.

iolairemcfadden

(This post will be cross posted on milepoint and the ihatedialsyis forums.)
Holiday Dialysis in Singapore

Background, in December of 2013 I started dialysis (hemodialysis) at 39 years old. Dialysis is three days a week for three and half hour commitment hooked up to a machine that filters my blood to replace kidney function. Amazingly, you can live with zero kidney function. My loss of kidney function was due to SLE (Lupus) damage in the early 1990s. At that time, I knew that my kidneys would get worse and i would have problems, but at 18, I didn't really have a clue what it would mean. Fast forward to 2007, when I was in the hospital for high blood pressure and was told it was kidney related. So for the past six years, I've been seeing a nephrologist tracking my kidney decline. It was helpful having a trained kidney doctor guiding me. He had me get a fistula on my arm, i.e. connect an vein to an artery on the arm to make an enlarged vein that would allow a huge amount of blood to flow back into the arm. He also pushed for me to get listed on the kidney transplant list. Because of that, I received my call on the first potential donor three weeks before I started dialysis.

I'm on in center hemodialysis. There are other methods of dialysis, and many people manage dialysis at home. I hope to be the recipient of a kidney transplant at some point relatively soon I'm no planning on moving from the center. That means if I travel I will need to get in center hemodialysis.

So dialysis is a change, and ties down Susan and myself a bit. But, I'm generally healthy, my lupus has been in remission since 1993 and am able to handle work and daily functions, which is a blessing. So my goal is to let it change my life as little as possible. And our pre Dialysis life is lots of travel - in 2013, we visited Austin and Petersburg, Alaska for my 20-year high school reunion, St. Louis, Cape Cod, Budapest, San Antonio, San Francisco, and Cabo San Lucas.

I was happy that our next trip was Singapore - a truly modern location and a good place to my first out of the country dialyses. My Davita center will help schedule dialysis at other Davita centers in the US, but only will help fill out the intake paperwork for other faculties - so I was on my own to find my Singapore center. And it's still unclear if my heath insurance will pay for international dialysis, it should cover it as out of network but I envision having some issues completing the reimbursement paperwork - so the overall cost was important to me.

Google searches for Singapore Dialysis found Raffles Dialysis Centre which even had a web page setup for their center. An email to them resulted in rates that were $500 each session plus one $125 doctors consultation. That pricing is much less than my center charges ($1,400) but seemed a bit high. I was having problems finding other centers so I moved to the Duck Duck Go search engine and found the Fresenius Medical Care Singapore website which had a holiday dialysis webpage that listed various centers by region of the city of Singapore (http://www.fmc-sg.com/patients-and-c...liday-dialysis). Through that site I emailed a few locations and finally settled on NephroCare S&J Dialysis Centre (http://www.fmc-sg.com/nephrocare-s-j-dialysis-centre) which charged $400/session, plus one time $60 registration and $80 doctors consultation fee. The ideal thing is I was able to setup the two sessions entirely via email. The more complex requirement is that they needed an HIV test, which my dialysis center would not order, so I had to go to my primary doctor to get that filled.

So how is Singapore dialysis different than here in the US? For one thing, they didn't think I would fit in their seats so they put me in a (short) bed. In my center, the techs prep all the material they need in advance in a bundle and distribute it to the machines - in Singapore they had a commercial pack that included everything that was needed, but they they don't use single use alcohol pads, the pack included a plastic box like a lunchables container, which they added both saline to, as well as alcohol, so they could pull what they had needed from. Then, they did use a single use alcohol pad to wipe the needles before they were removed from my arm.

Best of all - likely due to the British influence in Singapore - they offered tea or coffee and crackers mid-dialysis!

So looking forward to 2014 we will take more domestic quick weekend trips from early AM on Saturday to Sunday or Monday so I don't need to scheduled dialysis away from my center. And for international travel we have a trip to South Africa in September, there we will give up one of four safari days so I can get my dialysis in the Johannesburg area twice, before moving on to Cape Town and completing a few more sessions.

I think we will do more travel to Europe and more developed destinations and I will end up being dialysis at more Fresenius centers since they seem to be a global brand with centers throughout Europe and even Asia. Of note my center uses Fresenius dialysis machines.

Photos attached of me on dialysis, the tea and crackers, and then a shot of Susan and myself in transit.

iolairemcfadden

And now time for a quick trip report on dialysis is South Africa. Last November I talked my wife into heading to South Africa for a quick safari and then some time in Cape Town.

Qatar Airways ("the five star airline") had just joined the OneWord airline alliance so we were able to us our American Airlines miles for a One Word Explorer award, the benefit of this now retired award was that it is distance based and you could do stopovers as you desire as long as you fly two One World carriers. That allowed us to fly business class to Johannesburg via Doha on Qatar, go on a Safari near Johannesburg and then continue on to Cape Town on British Airways. Nothing too complicated for this type of award but still a great award - especially in light of the fact American retired the award as part of their merger with US Airways.

So I booked our flights in November and then in December started dialysis. In February I was able to get my Dialysis in Singapore - which is a very modern destination and found the center very similar to my center at home. But still I had some reservations heading to Africa and getting my dialysis. But from my research and feedback on the forum ihatedialysis.com ( http://ihatedialysis.com/forum/index.php?topic=30787.0 ) it sounded like the private healthcare system in South Africa is good - but not the public system. Also throughout the summer I received some calls from the kidney transplant center so I thought by the time the trip hit I'd have a new kidney and need to cancel the trip. So we bought good travel insurance and waited until the departure day.

Using the website globaldialysis.com I reached out to two centers in Johannesburg via email and only FMC Morningside Kidney and Dialysis Center responded ( http://www.globaldialysis.com/compon...ntrez2Id=43038 ). The prices sounded reasonable and they took some orders from my center with out the need for a specific form or an AIDS test like Singapore required. A few weeks before departure the coordinator at Morningside recommended a Cape Town site and I was able to get spots there. In general the centers were very accommodating and let me have my preferred times. I appreciate that since at some centers that means someone gave up a time slot to accommodate me.

Finally the day arrived and we headed out to Dulles and waited for our flight in the stylish Virgin America lounge. The Qatar Airways business class service was wonderful, not as intimante as first class but the food and service was comparable. We arrived in Qatar just in time to do the last free city tour of the day. Braving 104* weather a 8 PM we got to see some of the new downtown that sprung up since 2004. Then when we returned to the airport for a lounge dinner, then headed to the Marriott for four hours of sleep before continuing on to Johannesburg.

Our Doha to Johannesburg flight was on the fairly new Boeing 787 Dreamliner. It was a nice flight, but for couples it doesn't really offer close seating, and when in a bed position the window seats have a fairly tight area for your feet. My personal feeling is that for couples the older Boeing plains flying to Dulles are nicer.

Upon arrival to Johannesburg we took the nice modern Gautrain to Sandton and walked a few blocks over to the Hilton. After waiting about 45 minutes for checkin we were offered a decent suite with lounge access. The excitement for the nap was a stewardess entering our room well we were napping - I guess its hard to figure out when you put someone in room!

So the next morning at 5 am I walked over to the dialysis center. It looked to be in a business park connected to a hospital so I entered the hospital and they had someone walk me over through the dark business center to the appropriate building.

At the dialysis center I found very modern facility with newer machines. As in Singapore they provide a drink and a snack during the session, which is quite nice. The snack was actually a grilled cheese. Clearly the labor costs are lower as there are people doing specific jobs, such as serving food, setting up the dialysis machines and cleaning throughout the day. Overall it was a comfortable center and I was done a bit earlier than I expected so I was back at the hotel prior to Susan getting picked up to go on the Safari - which was good as I'd expect the driver would have had a hard time finding where the center was.

We spent three great nights at the lodge and got to see our fair share of animals! The highlight was a herd of about seven elephants visiting the watering hole right in front of the lodge.

After our safari we drove back to Johannesburg and I went directly to dialysis well Susan headed to the airport. Our 7:50 flight had been canceled so we were on a 7 PM flight with me arriving to dialysis at about 1 PM, however I was not hooked up until about 1:45 PM so I quickly realized that I could not do the full 3.5 hour session and cut it short to 3 hours. Even with that the time to get to the flight was very close. After I disconnected and walked out onto the street I experienced my first experience of a bleeding arm, so I had to head back for more tape. Luckily I arrived at the Gautrain just as one was arriving and I got to the airport with maybe 15 minutes to spare.

In Cape Town, I found a smaller facility, but with the same modern equipment. The snack was a cold chicken salad sandwich, apple, and tea. Not quite as good as the hot grilled cheese, but still much more civilized then at home, where nothing is offered. The one downside is the center was about 30 or 40 minutes from City Bowl. Later on the street we saw a dialysis center very close to Long Street and City Bowl, that would have been much more convenient - but harder to schedule since it didn't show up on the Global Dialysis site.

So far I've only seen very good facilities when traveling and see no need to let dialysis keep you at home - as long as your underlying medical issues are stable and you have private insurance that reimburses the session cost.

Once you move to Medicare (after 3 years) they don't cover outside of the US treatment. So far international treatments have been just under $300 per session. (That is about what Medicare pays at home, versus my insurance that is billed $5,400, and then pays a negotiated rate of $1,400.)

In addition to international travel I've had treatments at DaVita centers in Austin, Boise, and Kansas City and they are are comparable to my local center.

(Sorry no photos attached showing the Johannesburg center's checkin, machines, my snack and a few safari photos - because I can not upload the photos - if you want those find my posts on Milepoint or iHateDialysis>)

8dimsum

Appreciate the update. Thanks.

Well wishes for a successful and speedy kidney transplant in your near future.

Dianne47

Thank you for your comprehensive international travel dialysis reports. This is a topic very hard to find information about. You're helping many people by your posts. Clearly you're not slowing down or letting your medical issue get in the way of seeing the world. Good luck on getting a perfect transplant match.

txrus

If you don't mind a quick clarification from someone who has worked in the wonderful world of transplant since 1993, Medicare automatically becomes primary 30 months after starting dialysis (or 33 months for those doing HD because of the 3 month waiting period) if there is active group insurance & the reason for Medicare is only ESRD entitlement. Be sure you are counting the months correctly because I can promise you, someone at Aetna is counting the days until they can say 'Medicare is prime-send the bill to them, please'.

iolairemcfadden

Thanks every one. My next large trip will be Ireland next year. So I don't think I will update this for a bit. I continue to do us trips. I feel proud to still be able to travel but a lot of that ability is because I'm generally heathy other the the kinedy finally getting down there.

iolairemcfadden

Dialysis in Santiago, Chile
(cross posted to milepoint, ihatedialsyis and flyertalk)

Over Thanksgiving, Susan and I took a quick trip to Phoenix and Las Vegas. Our excuse for visiting Phoenix is we bought two nights of hotel for the Palomar Phoenix, one of the trendy Kimpton hotels, at a silent auction. Since we were in the South West, we decided to add in a few nights in Las Vegas. We should have known better, but we arrived in Phoenix on Thanksgiving day and were surprised to find everything closed in the Downtown. Luckily, there was one speakeasy open nearby that opened at 9 PM, so we were able to have a drink and eat some pizza. We made plans to visit a craft market located in the building complex of the hotel on Black Friday. However, when we woke up my RSS feeds pointed out that Copa Airlines had a strong sale going on, resulting in $330 airfare to Santiago Chile... Some how it seems like fairly often when we are on vacation great airfare sales hit! I'd say a good price to Chile would be in the $600-$700 range, the $330 price is the lowest I've ever seen for that destination. Luckily, we were still in the room and Susan and I agreed on heading to Santiago for the Martin Luther King holiday week. I made a few booking attempts for a normal Saturday to Sunday trip, but it kept erring out after the purchase, so I moved to MLK Monday to Tuesday the following week and was able to complete the trip purchase! The rest of the trip in Phoenix and Las Vegas was good. Dialysis in Phoenix worked out good, as usual. I'm very appreciative of Google Maps and how it integrates with public transportation, allowing me to confidently take the bus to the Center. After Dialysis, Susan met me at a Pizza restaurant with a outdoor seating and we enjoyed beers, a great pear & blue cheese salad, and pizzas. Las Vegas was good, we stayed downtown at the Golden Nugget and I enjoyed Cirque du Soleil's risque Zumanity show a bit more than Susan. Heading home, we enjoyed 8 am cocktails and snacks at the American Express Centurion lounge in the LAS airport.

Back home in DC it was time to figure out dialysis in Santiago. This was one of the few times where I need to plan my dialysis quickly, usually I have well over four months to plan out my treatments. I searched around and found one website with centers throughout Chile but only two in Santiago. Later I found the Nephrocare (Fresenius) website, which had many centers in Santiago, so I promptly emailed two centers which looked well located. And at that point started waiting for a response which didn't come.

All the dialysis websites have phone numbers for the centers, but generally I don't like talking on the phone, and especially when the center has a different language! So I was excited when I figured out that DaVita will help coordinate foreign travel. My social worker has been great about setting up US dialysis but didn't know the company could help with foreign travel. All that I had to do was call 1-800-244-0680 and give them information on the two centers that would work for me. At that point someone else took over contacting the centers and setting it up. That was very easy. And of course they took care of getting the dialysis orders sent, except they required me to get my HIV lab results on my own, for some reason the center stays away from ordering/tracking those results. When it was all said and done, I had my preferred time at my preferred center, and a regional Nephrocare contact in Mexico City.

It turned out very good that we were departing on Monday since I had a rush project at work that I was able to complete on Saturday and Sunday prior to leaving. If we had left on Saturday, I probably would have had to try get that work done while on vacation...

We arrived in Santiago at 6:30 AM, took the bus and the metro to the Radisson Blue in an upscale area near the largest mall in South America. I picked the Radisson because I have gold status as part of their credit card offering, which also offers two award nights for the price of one, because of my status and the size of the hotel I thought that they would let us into the room early. They offered us the breakfast buffet while we waited, and at 10 am they offered us the choice of a standard room, or waiting longer for a junior suite, we jumped at the standard room, took our bath and a quick nap. Then we were off to one of two (or three metro) accessible wineries. There was no english tour that day by we still enjoyed the $15 spanish language tour, we only got lost when they described why their premium wine was premium (likely very old vines). The downside is the included wine tasting was three very small sips of wine, similar to what we would find in a non specialty grocery store. That turned me off to future winery tours.

The next morning, I set out for my first dialysis session. Again thanks to Google Maps, it was easy to plan out how to get to the center via the Metro (or bus). It was fairly obvious when I arrived that the center staff was not ready to speak english, and my basic Spanish only allowed limited interactions with the staff. However, it seems like the process is the same where ever you are with limited differences as to how they clean prior to inserting the needles and how they use tape, so its fairly easy for me to just let them set me up how they usually do and let the process work.

It's always interesting to notice the staffing difference, which to date has had many more employees than my center at home. And like other foreign centers they offered a snack which was a grilled cheese and tea or coffee.

The one problem I did encounter both days is my blood pressure was higher than normal. That could have been due to a miscommunication where I though they were asking the pump speed so I said 400 and they were asking how much liquid to take off. Since I still urinate (a lot) I would have not taken off more than 1,000 ml, so 400 ml is not that bad. (I personally think I urinate enough that I would not gain weight if they stopped taking off liquid.) Regardless, the high blood pressure and low communication ability did stress me out a bit, and the center's doctor had me sit around afterwards until my blood pressure settled down.

The one thing about Santiago is it felt like they are less used to English speaking tourists, and also they have their own Spanish dialect, so it was harder than normal communicating. For example, usually Susan and can read the menu, but in Chile she could not recognize the main dishes so the meals were more of a guess. So at each meal we were happily surprised.

We spent the week exploring Santiago, going on "free" for tips walking tours, eating and drinking... We went a few times to a bistro that offered wine flights and enjoyed tasting the local wines withe more generous pours than the winery. Also we hit up the local ice-cream shop more than a few times. The weather was in the low 80*'s but quite warm when you were out walking in the sun.

One day, we took the bus under two hours to Valparaiso on the coast for a day trip. This town was the main port after the ships came through the Straits of Magellan in the gold rush days. Lots of the town is situated on hillsides, similar to San Francisco but with more burro sized walking paths rather than streets. One modern attraction is tons of murals, so we arrived by 10 am for the "free" for tips walking tour and got to see the highlights of the town.

For lodging we started at the Radisson, then moved to a local business type hotel, and finally moved to a hostel for the final three nights. The first night at the hostel they advertised a pub crawl, which we deiced to join. After an hour of free beer, we had a great night visiting other bus, and ending with dancing at a nightclub. Some of the locals made a movie of Susan and I dancing, i.e. the old folks dancing. I realized next time we should save the more comfortable Radisson for the final two nights since we really are ready to relax by the end of the trip.

It just so happened our flight was at the end of the year for United upgrades so on the way home we enjoyed a more luxurious return thanks to an upgrade to business class on the Panama to Dulles segment thanks to a milepoint forum member. Thank you...

Dianne47

Another excellent report, thank you. I really admire your adventurous spirit.

b1513

Your reports make for some fascinating reading. Goes to show not too much can hold a FTer back. Hoping you get a transplant soon.

Bobette

iolairemcfadden

Ireland Trip May 2015

Just returned from a trip to Ireland, scheduling dialysis was an ordeal. We bought tickets via an AF sale so we left a bit earlier than planned. Using DaVita’s travel coordinator I tried to schedule dialysis with about a month notice. She could not find a spot and heard from the Irish Kidney Association that they had no space in the entire country until June at the earliest!

So we started trying to find space in London with the hope that I could fly over for treatments on Ryan Air. But after a week or so of not receiving confirmation of space in London, my wife reached out to the same Irish Kidney Association who said there might be space in private centers.

So I two weeks before departure I sent out emails to all the private Dublin centers I could find and received two responses, including the Fresenius center the previously did not have space. That kicked off a lot of lab work. The Friday before departure we finally received confirmation that they would take me at the Fresenius center!

At that point my option was to be in Ireland for Sunday – Wednesday AM and use United points to fly back if dialysis was in the cards.

-----

We (my wife and another couple) returned from our Ireland trip last night. It was a great trip with friends, but we had to do a ton of driving to see both the Dingle Peninsula (instead of the longer Ring of Kerry loop) and the Cliffs of Moher.

To get dialysis I commuted to Dublin from Limerick via train and back to Galway on the bus on Wednesday. I took the city bus to the dialysis center in the suburbs.

I was happy that I didn’t miss my bus stop despite the cellular service from “Three Ireland” that completely conked out in Dublin. (Later I purchased a “Lycamobile Ireland” SIM card that worked MUCH better.) From what we could tell “Three Ireland” is not a good option despite some recommendations online and the €20 unlimited plan…. “Lycamobile Ireland” worked much better under more limited €10 plan. My friend with a newer Galaxy 6 had better “Three Ireland” service for voice and texts, but not for data.

We returned to Dublin on Friday as a group so I had pickup and drop off at dialysis.

Overall the trip was great. We were fairly rushed the entire time because it did take a long time to drive everywhere. We arrived at the B&B each night at about six or seven and did have dinner out but we were completely beat most nights.

Katja

As always, thank you for the report - you never know who is going to benefit from the info!

BorussiaMG

Thanks for sharing your experiences.

I am curious if you would be able to do your trips without your wife or anyone else. I am mostly travelling on my own but will have to deal with dialyses sooner or later.

3,5 years ago I was told that I have an autoimmune disease and that the function of my kidneys will decrease slowly. A nephrologist has monitored my kidney function since. I have tried (and managed) to avoid reflecting my situation and travelled the world.

Howsoever I was now told that my kidney function is as low as 15% and realized that I can't postpone the idea of dialyses any further. I am turning 30 in January and need to make decisions (i.e. which kind of dialyses, living will) ahead. Will I do a dialyses at all? What are my options? Both of my parents offered to donate a kidney (which I still refuse) but approximate waiting time would be 7 years... Howsoever I should be glad regular healthcare in Germany is pretty decent.

Do you inform the flight attendence on longhaul flights? I don't want to spread fear but maybe in an emergency it is good if someone knows what is going on.

Usually I drink a lot while flying, but during dialyses you are supposed to drink less. How do you manage that?