Planning a Dialysis holiday: Part 2

HawaiiA few weeks ago Yang wrote and asked for some advice to help her better plan and prepare for her trip from New Zealand to Hawaii.

Of course, planning is the key and involves five areas: arranging dialysis, getting there, having a place to stay, managing meds and doing stuff.

 

Arranging Dialysis

As BigD club members, this is always step 1.  No point going anywhere if I can’t dialyse when I get there.  I wrote about this about a year ago: Finding a SAFE Holiday Dialysis Unit, covering how to find a safe unit, how to contact them and dealing with the cost of treatment, etc.  Not much has changed, except that there seems to be more units offering holiday dialysis.

A word about selecting session times.  After so many years on dialysis, I think of myself as being like a koala bear.  Koalas have almost no capacity to store up food or energy, so they have to eat regularly and often to stay well.  Life on BigD is much the same for me.  I have no capacity to clean my blood except dialysis, which I do 5 times per week: Mon, Tue, Wed, Thu and Sat, for three hours per session.  So as long as I follow my routine I feel fit and healthy.  If I miss or delay a session I feel progressively less well.  Once I have the session, I feel well again.  So wherever possible when I travel, I like to stick to my routine.  I recommend that you do the same.  It may just make the difference between an OK holiday and a great holiday.

Getting There

There are two schools of thought about the trip: it is the no-man’s land we have to cross to get from life-as-usual to life-on-holiday, or it is an integral part of life-on-holiday, to be experienced and engaged with from the moment the journey begins.  We subscribe to the second school.

So, if it’s a long-haul flight, we do it during the day.  No matter how well you sleep on a plane, flying through the night disrupts your normal sleep, and you pay for it the next day.  Better to stick with your usual sleep pattern and take your time.  We certainly arrive feeling fresher, and all the better for all those free movies and the snacks we wouldn’t eat at home.

When it’s a driving holiday, we also tend to take our time.  We rarely drive straight from A to B.  We like to stop and look at things along the way.  And drink coffee in strange coffee shops.

A Place to Stay

Find a place near dialysis.  If there is a flash place an hour away and an OK place near the unit, go for OK.  Many times we have done the reverse and come to regret it.  One time when we went to Port Douglas for a holiday, the closest dialysis was 40 minutes away in Cairns.  Not only did it add hours to each session, but the machine blew up during one run and it took 3 hours to fix.  It was too far to go home and come back, so we spent 8 hours in Cairns for a 3 hour run.  On another holiday in London, we stayed at Shepherds Bush and I dialysed at Forest Hill, at least an hour away.  And on our China holiday last year, we stayed an hour away from the hospital (though that was because we were part of a wedding party).  Fast learners we are not.

Life is too short to spend it doubling your precious holiday time in dialysis-bound traffic or on a dialysis-bound train.

Managing Meds and bits

Foreign countries find it difficult to cope with people who need prescription meds quickly.  I always take along an extra few days’ worth of meds, just in case.  Some units expect you to bring your own Heparin and all expect you to have your own EPO/Aranesp.

I have friends who have been delayed far from home unexpectedly.  Having backup meds is the difference between the delay being a nuisance and a total stress out (or worse).

Since I use the buttonhole technique, I usually take at least one extra set of blunt needles.  Not all BigD units stock them and it is not unheard of to stuff up a needle and need another.  I also carry extra scraper needles to remove the buttonhole scabs (the right scrapers can be hard to get in an unfamiliar unit).

Doing Stuff

Don’t forget the reason you have taken all this trouble: to have a good time and to see and do things you can’t see and do at home.  Check out the “10 best things to do” at your holiday destination on the web.  Choose the highlights that suit your tastes and go for it.  And allow time for that other rarity: rest and relaxation with a book, the papers, a movie, or the close study of your eyelids.

Disabling the email on you smart phone is also a good idea.  They’ll be there when you surface a few days later.

Bringing it all together

Arranging Dialysis.  Last week Julie and I took a short break at Rosebud, about 75 km (45 miles) from home.  We planned the break in January, about eight weeks before.  Many friends at dialysis have raved about the Rosebud unit, so we thought it would be good to check it out.  It’s a pretty busy unit, with lots of locals and a constant stream of holiday dialysers.  Chris, my Unit Manager contacted them and after a bit of negotiation we settled on Thursday 27 Feb and Saturday 1 March.  These days fitted in with my usual routine, so that was one less thing to disrupt the flow of good Karma that I rely on to stay party-fit.

The Rosebud unit turned out to be all it was talked up to be and more: clean and modern, friendly and skilled staff and most accommodating.  I can understand why it is so popular, and I look forward to joining the holiday queue in the future.

Getting there.  We drove to Rosebud on Wednesday after my usual BigD session at my unit.  It took about two and a half hours, because we stopped for lunch and to visit Sullivan Bay, in Sorrento.

Sullivan Bay was there that two ships, HMS Calcutta and Ocean, arrived from Portsmouth with 300 convicts, marines, civil officers, free settlers wives and children in January 1803.  It was the first attempt to settle Europeans permanently in what is now Victoria (and just the second Australian settlement after Sydney Cove).  There is a very informative monument and display, but no artefacts of any kind.  The settlement lasted only seven months, abandoned mainly because of poor soil and lack of fresh water.  It is famous for several things: one of the convicts, William Buckley, escaped and lived for 32 years with the aboriginal population on the other side of the Bay; six others were shot or died escaping; one of Melbourne’s founders, a very young  John Pascoe Fawkner was one of the passengers, with his mother and convict father on the Calcutta.  It was another 22 years before Melbourne was founded permanently.

A place to stay.  We chose an OK motel two minutes from the Rosebud dialysis unit.  Bliss.

Managing Meds and bits.  I planned for only two BigD sessions, but took a backup set, plus scraping needles and Heparin.  As it turned out, I didn’t need the blunt needles, but I felt better having them with me.

Doing Stuff.  Julie did all the planning for this one and she did a great job.  We went to the magnificently wild and spectacular Cape Shank, walked the boardwalk to the shore and climbed up the lighthouse steps.  We exercised our legs on Millionaire’s Walk along the coast from Sorrento to Portsea (looking at all the pretty, and very private, houses), our taste buds at a couple of very swish wineries and a cheese maker and soaked up the serenity in some beautiful formal gardens.

BigD holidays are not easy, but with a little care and planning, they can be delightful.

5 thoughts on “Planning a Dialysis holiday: Part 2

  1. Hi Greg and all…

    Now please forgive me if I should be posting this under a different topic heading (I get confused which one I’m under sometimes, ha)

    So…the bad news is (but the good news is….life)…..bad news is mom had to finally start the Big D last month…in February.
    Its been a rough start….I guess the first day (5am they told us), she got infiltrated….whole entire arm essentially blue, purple, etc…we were quite concerned….2nd day (2 days later) of course they tried and couldn’t get it (mom has a fistula by the way). So they completely freaked her out by saying she has to go to this place RIGHT AWAY (or STRAIGHT AWAY for the English) to put in a Cath….my mom freaking out….WHAT? I have only had ONE session so far, whats going on? We go to the place, mom freaking out….after talking to the doc he says he didn’t think one was necessary…told us to wait another day…go back to clinic (o yeah, mom sure does want to go back there, heh)…..that time they get in…..4 people later (techs).

    And each time after that, its been just as traumatic….yesterday’s session (we are on a tuesday, thursday, sat. deal)….something happened AGAIN, and when they let me in I see this huge ice pack thing on her arm, and she telling me how painful all this is….oivay. I’m thinking (she’s never gonna make it)….
    we go back tomorrow.

    So now…I am getting to a question, bear with me.

    Our back story is….she was recommended to do the fistula , she just turned 76 and her kidneys failed because of 40 years type 1 diabetes. Anyhow….

    when we observe others at the clinic….who seem to have this whole thing down (drama free)…

    I notice that mom is the ONLY one that I see that I THINK has a fistula? I am seeing LOTS of lower arm things….that the techs seem to love and are easy speazy (like between the wrist and the elbow) and I saw a few caths.

    However mom is the only one I see that has this HUGE thing in the crook of her inner elbow going up to ABOVE the elbow….I have not observed any others like that, and am wondering if THATS why they SEEM to have less pain and drama?

    Its like 4 techs have to fiddle with her all the time, I seen her legs bouncing (when shes in pain she does this) I see her squinting her eyes….its really hard on her thus far.

    Right now…every time the NIGHT before, the anxiety starts, my mom becomes this other person….stressing, agonizing, not sleeping…holy cow, I hope this is temporary. Her labs are excellent otherwise, so I feel she could live a long time…but so far it seems to be unbearable for her.

    Also, the doc we had at the cath place (that didn’t do it)…said that I need to demand they get more experienced people on her.
    Well how do I do that? They get mad at me as it is, just for being snoopy. There was one guy who really seemed to know what he was doing…i think on her 3rd day…found out he had done this for 20 years…so I specifically asked for HIM the next time, to de stress mom, and they wouldnt let me……”o they all know what to do”….yeah well apparently not…because it takes 4 of them every time, and we end up with the guy who DOES know in the end anyway…after mom has been tortured no end.

    I am still a noobie, and not sure how to handle any of this.
    I know they have their protocols and such, but I don’t know.
    They never explain anything either….I have NO IDEA if they are doing buttonhole or WHAT they are doing…..or if I even have the right to ask. They just want me to drop her off and pick her up.
    Ummm no. thats my mom in there, and things aren’t going well.

    Any advice or help or just….is this normal?

    Thanks again…Colleen….California

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  2. left off something…..the fistula we had put in her arm TWO YEARS AGO…and every doc we have ever seen in the past 2 years has said how strong it was, good it was, etc..etc…

    so mom was in shock when it seemed to have problems. (which I don’t think it does….I think maybe its the people poking it, or not taking extra care)…I told her to LOOK at what they are doing and ask questions, because I have heard that its almost better to know and do yourself….but the people at this clinic seem to not want patient participation, heh. When I ask her things, she says they don’t tell her and she doesn’t know….all she knows is…IT HURTS a lot.

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  3. Hi Colleen. This really makes me angry. Talk about traumatic! Blue-black arms should be a pretty rare sight, unless the staff are not doing their job properly! The location of the fistula should be immaterial. Some grow between the wrist and the elbow, others further up. All are a little twisty and sinuous. If she has had it for two years, it should be well developed and fairly easy to puncture and use without damage. Your mom’s arm is black and blue because the person putting in the needle has gone through both sides of the fistula, enabling the blood, which is under high pressure, to leak out into the flesh of her arm.

    The doc you spoke to is on the money. DEMAND an experienced needler (the one you know can do it). Make a fuss; threaten official complaints. Go up the food chain, starting with the unit manager and keep going until you are satisfied that your mom is getting the care she deserves and is paying for. Take a photo of her arm in front of the staff after each session. Make it obvious that unless they give your mom better care, you will act.

    This should not happen. Please let me know how you go. Good luck.

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    • Hi Greg.

      Thanks so much for your reply. Its really hard to find people to ask who a person can trust, ha.

      So yeah, basically, thats what I kinda did. Wish I thought of taking the picture of her arm IN FRONT of them. When that happened I did take pictures at home for the “just in case” segment, right? But what was bizarre to me was that when I called them that night or the next day (I forget now) to tell them about the bruising, THEY acted like that was normal for a first time fistula, and told me NOT to worry about it and to come in the next day…so they really should have known that the next day, the blood would start leaking OUT of the arm, and then they acted surprised about THAT, and had a social work person? get authorization to send her to a place to get a cath put in so they could dialyze…..it was all very crazy. I had to take off work that day to do this, but was grateful when they didn’t do it.

      Then a few days later, everyone acted like “oh well, that was a GOOD outcome”….like what? We ALMOST put something in her neck she didn’t want….it was wierd.

      Anyhow I DID complain to the “head” clinical manager or what not….(they are only there certain times) and she assigned someone to my mom…it wasnt the guy mom wanted….the 20 year guy, but she seems okay (the new one).

      But now I’m HOPING because of all that, they are still doing right by her. They started asking her several weeks ago about starting a button hole (which I guess they need doc’s permission for?) and eventually I guess they DID get his permission.

      Heck if I know, but I HOPE thats the right course of action. Again I talked to the head manager on THAT, and SHE said they recommend it because mom’s fistula is “short”? Thats the term she said, and that rotating the sites all the time would lead to “things” like what happened (the black and blue event), to have more chance of occuring. I hope thats RIGHT, and its not just for their convenience of not having enough people who want to take the time. I’m guessing the button hole is easier for THEM. But if its the right thing, okay. You just wonder if what they are telling you is true. They gave mom a numbing cream to use, but she didnt use it. Thats MY fault. She asked what I read, and I said I read that you don’t want to use it TOO much over time because it thins the skin. But I told her if she NEEDS it, to use it for now. But so far she wants to bear it.

      on the buttonhole deal, I have read that there is a risk there too…of aneurisym or embolism is it? I forget. But I’m sure it all has risk, just trying to cut the risk is all.

      Well anyhow thanks for any and all advice, I’m sure this first year will be the toughest as far as learning how it goes.
      She would STILL rather have my kidney of course, and I want to give it, but so far, they kinda don’t want to discuss that (i guess her age? diabetes?), but i have not given up on it….and when the social worker asked me about it, I told her I WANTED to, but so far no one has discussed it. So, who knows.

      I know there is risk with THAT too (all the rejection pills, etc)….but ya know…why not?

      take care greg, and thanks again.

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      • Thanks Colleen. Keep up the pressure. You are right, time will help, but so will good care. You mom is lucky to have you in her corner, well done! I’m glad you spoke to the boss. Keep the camera handy! And stay in touch. Greg

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