Newbie with vacation/alternate dialysis center question

[malaka]

I'm new to dialysis as of January.  One of the lifestyle issues that has arisen is a week of summer vacation.  I called a center at my destination and was told I'd have to apply (pending space available) through the social worker at my current center.  Did that, and they even had a fill-oin-the-blanks form for me to use.  So far, so good.

But now, three weeks later, neither I nor the social worker have heard anything from the center at my hoped-for destination.

My question: is this standard operating procedure or should I take the offensive and start calling myself?  It seems as if the other center doesn't trust me, a mere patient, to be able to assist in making arrangements.  And, my wife is starting to get worried/pissed off as I cannot currently make any vacation plans with her except weekends.  I can see where they'd want genuine medical verification of whatever settings are used for the machine, but I am smart enough (I think) to be able to accurately read a calendar.   (Maybe not the Mayan one, but the usual type I understand).

Some of you must have gone through this before, so I am seeking wisdom from the voices of experience.

Thanks for reading this semi-rant and rave.

[cattlekid]

I can tell you from experience that you won't hear anything from the center you are traveling to until the very last possible moment.  I had the social worker at my center hounding the center I was traveling to last summer.  Even then, we didn't get the confirmation that there would be a slot for me until the day before I left for vacation.  I know this probably isn't what you wanted to hear, but unfortunately it's the way of the world it seems.  Is there more than one center that you could possibly go to so that you could contact them for backup?

[Desert Dancer]

I'm new to this myself - we're travelling for the first time next month - but I can tell you what I did, since it seemed to work out fine.

First thing I did was find the center I wanted to use at my destination. Rang them up and asked for the social worker. Introduced myself and told her I needed a center that would let me do self-care (they're hard to find). Once I received her assurances that I could, I gave her the dates I needed and she told me that since I gave them so much notice (January/February, I think) there should be no problem with the dates. She told me everything they'd need from my clinic - current labs and current negative Hep/TB results - and told me to have my center fax everything over to their unit clerk.

Then I called my clinic, gave them all the info they needed and they took care of the rest. In another week here I'll probably call the destination clinic just to be sure everything is set. I'm also going to ask for a letter from my clinic to take with me stating that I am self-care, from cannulation to machine settings, just in case the floor nurses at the destination clinic didn't get the memo.

It's NEVER a bad idea to take the offensive. I've found the old saying generally holds true: "If you want something done right you've got to do it yourself".

[mcclane]

When I was on hemo, I had to make all the arrangements at the dialysis centre myself.  The social worker at the dialysis centre provided me the information, but stated clearly that the hospital will NOT make the arrangements at all - they don't want to appear that they were 'financially' linked to a particular dialysis centre.

Our vacation destination was Seattle in Nov. of last year.  I called up 2 places, DaVita and Northwest Kidney Centre.  Both places will ask what location you prefer, but stress that there is no guarantee that you will get the location of your choice.

I eventually went with Northwest Kidney Centre, as Cheryl Lake was very helpful from the beginning.  She also stated that I had to undergo a bunch of tests and the results of those tests had to be faxed from my dialysis centre to them, and I also had to pay up front in full.  When all that was done, it was the waiting game.  If my memory serves me correctly, I think it was 2-3 weeks before we left home that they sent me (or emailed me) all the pertinent information.  I didn't get the location I wanted, oh well, but I did get the time slot I wanted, which was first thing in the morning.

I didn't go with DaVita because after placing my request via phone, I never really heard from them again. 

Unfortunately, this was my only experience with booking at a dialysis centre elsewhere, but the experience was a positive one. 

[jshabanian]

Both times I traveled I didn't know if the dialysis was set up until the last moment. This is so frustrating when you are booking flights etc.  That's why I think this is one of my pet peeves about dialysis.  You read all these articles about how thankful we should be that there is a dialysis option for us.  How we can really do whatever we want to. We can travel and have dialysis almost anywhere in the world...blah blah blah.   How can you book an expensive vacation if you can't even confirm your dialysis arrangements until a week or two before departure???   

Both times I traveled I was able to get into a center but did not get my choice in times.  One time it was a t 2 pm.  That is a terrible time when on vacation.  By the time I got on the machine on most days it was closer to 2:45. By the time I was done it was 7 or 7:30.  Everyone was waiting for me for dinner.. I missed out on so much on that trip.  Luckily it was just visiting family. I would never go on vacation to a foreign country because I wouldn't want to spend my time in a center while on vacation.

The first time I needed to book time I waited and waited for someone to call me and confirm and when they never did I finally called Davita myself and they looked for a place for me.  You do need to be proactive because no one cares as much about this as you do.  You could  easily fall through the cracks and then there goes your vacation.

[malaka]

So far, nobody knows anything.  I don't care what time of day I get for a week, as long as I can have dialysis while on vacation.  I suspect I'll get T, Th, S schedule, too, but that's o.k.  I'm going to wait until the calendar flips to May in a few days to see what's going on, starting with my center.  That's why I'm not thrilled about the policy I heard about at my center and at the vacation target center that its done social worker to social worker.  Question #1 is have you sent that application to Centers X, Y and Z?  Thanks to the internet, even a guy like me can get names, addresses, phone numbers, fax numbers, etc., for purposes of contact.  When someone else handles it, you feel like youi're a kid and parents are making a vacation decision.  Another downside to our life support lifestyle.