Traveling while on the list.....

[tyefly]

  I want to start traveling now since Iam on nxstage and am portable...... but I am also on the list...... and If I take off and go to Alaska  or Canada or where ever  and they call me for a transplant  I wont be able to get home in time......esp if I am sitting in some remote place at a beautiful lake fishing and enjoying life.......   the List makes you stay  at home waiting and waiting......   I have only been on the list since Dec 09 and I am sure I have alot of time yet to wait.......  I hate  the idea of having to stay at home waiting for the call for the next 2 to 5 years...... what  to do.....I really want a transplant  but I really want to go travel too....... I hate this stuff........  My family makes me feel like if I just leave  town for the day ......that will be the day I am callled........  what to do......

[paris]

I think we all have felt that way at one time or another.  I am suppose to call the center when I am outside of a 3 hour radius from them.  I did that for the first two years.  But because my chances of getting a call are so slim, I decided I needed to just live and not miss family trips.  Talk to your co-ordinator. See what their feelings are about leaving town.  I know how important your trips are.  Let us know what you decide.

[okarol]

Sometimes you need to take a vacation from the list.
In most cases a cell phone can be reached just about anywhere (however, if you're in a really remote place, it might not.)
Even though there's the urge to rush to the hospital, these things usually don't happen quickly.Think in terms of being able to get to the transplant center within 3 - 4 hours and plan your trip accordingly.
You know what they say about a watched pot. 
I have heard of people being airlifted off a cruise ship to get to the transplant in time. Truly, if there's a will, there's way. (Ok, that's 2 proverbs so far, thank you to my Grandma.)
Sorry, I will finish with one more: Nothing ventured, nothing gained.
 

[MooseMom]

One of the main reasons for getting onto NxStage is having more freedom to travel, and it seems a shame not to take advantage of your newly found portability.  I spoke to my transplant coordinator about this very topic (I am not on the list yet, though), and she said that I would need to be less than 20 hours away from the transplant center because it can take that long to harvest, preserve and transport a cadaveric kidney.  She also mentioned that there is a special medical emergency transportation form that you can fill out that will propel you to the front of the queue for flights.  Like Paris said, find out exactly what your transplant team expects from you when you go a'travellin'.

I don't think you have to refrain from travelling altogether, but it might be an idea to see if you can find a peaceful, remote place closer than Alaska.  I'm not sure you would be entirely relaxed and worry-free if you were someplace too remote because you may well find that all you could think about is the kidney you SURELY will be missing!  LOL!  So maybe for your peace of mind, select someplace a bit closer to home.  If you DO miss out on a kidney (worst case scenario), you don't lose your place on the list.

[okarol]

Yes MooseMom, it can take 20 hours, but the recipient needs to be present before that because they need your blood sample to do the final crossmatch and be sure there are no changes in antibodies. Also, your place in line is based on wait time - but a match is is based on tissue compatibility - so you never know - that perfect match may come through - I know people who have gotten a 6/6 transplant within months of being listed, and although it is rare, it is not something worth missing.

[MooseMom]

Yes MooseMom, it can take 20 hours, but the recipient needs to be present before that because they need your blood sample to do the final crossmatch and be sure there are no changes in antibodies. Also, your place in line is based on wait time - but a match is is based on tissue compatibility - so you never know - that perfect match may come through - I know people who have gotten a 6/6 transplant within months of being listed, and although it is rare, it is not something worth missing.

Yes, absolutely; I was just stating the parameters told to me.  Everyone has to make that decision...for how long do you put your life on hold awaiting the perfect match?  It's the $64,000 question!

[okarol]

I wouldn't put life on hold. I would just take nearby vacations - that's what we did while Jenna waited, even knowing the wait time here in Los Angeles is 5 - 8 years.
I found this news story:
"Passenger winched off cruiseliner for kidney transplant" http://ihatedialysis.com/forum/index.php?topic=13533.0
oh and this is a good one too:
"Father of kidney op boy hails 'amazing' helicopter crew" http://ihatedialysis.com/forum/index.php?topic=17305.0

[RichardMEL]

I agree with the others. You can't just sit by the phone waiting for it to ring. You know a watched pot never boils and all that. LIVE LIFE!! That's what NxStage and all that is for!! Go fishing! The chances are remote the call will come during the time you're away. If you like, notify the unit you're going away and when so they can put you on hold on the list. I haven't bothered though with that. I just go away for a night here and there. If it happens it happens.

I have heard stories that down here they have gone to real lengths to find people and get them to the hospital for transplant including sending the water police after people going fishing, sending staff into a Casino to find a gambling patient (guess his numbers came up!) and stuff like that.....

[MooseMom]

Ooooh, the water police!  That sounds cool...

[RichardMEL]

Yeah I imagine the coppers come yelling after a guy sitting out on a rock fishing to the tune of "Bad Boys" - the guy thinks he's in trouble, goes for a run, and they tackle him and yell that he's not under arrest, but they need to take him back... for his new kidney! 

Coming this fall on Fox: "Cops: Transplant Squad" 

[Sunny]

You need to just get your traveling bug taken care of and take a chance with the transplant list.
I have been to Alaska and Peru while waiting for the call. It never came, I'm still waiting. Take a chance, and go have some fun.

[MooseMom]

Richard, I guess I hadn't really thought about it, but I suppose there WOULD be a Fox Network in Australia!  It's just that we hear "Coming soon on Fox..." so often here in the US. 

[Meinuk]

I traveled.  Even after getting my first phone call, I went to London for a family birthday party. A couple of weeks before I got THE call, I was on vacation 3,000 miles away.  (I let the team know I was out of range)

I was on the list from June `05 until I got my boy kidney in Nov `08. I traveled as much as possible. I wouldn't do any extended month long trips, but a long weekend away, or a week or two can be restorative for your soul.

[okarol]

I traveled.  Even after getting my first phone call, I went to London for a family birthday party. A couple of weeks before I got THE call, I was on vacation 3,000 miles away.  (I let the team know I was out of range)

I was on the list from June `05 until I got my boy kidney in Nov `08. I traveled as much as possible. I wouldn't do any extended month long trips, but a long weekend away, or a week or two can be restorative for your soul.

Yes, we spotted you in Vegas!! 

[Meinuk]

Yes, we spotted you in Vegas!! 

(And I wasn't the only one on the list that weekend!)

Ahh Vegas...  I remember Elivis, a Wedding, Hugs, a purple Boa and midnight Mexican food... (and maybe going the wrong way to Olive Garden.. but hey, that was the extra special tour!)

Happy Memories!

[staceyand joe92]

We live in the mountains and would go hiking often and I would always lose my cell signal and start to freak out.......but one day I just told myself that I can't just wait in "limbo" for what may or may not happen today. I  was told the wait time for me would be 5 years but I received a call one year and 5 days from being listed. I live three hours from the hospital and they told me not to rush because the surgery wouldn't happen until the next afternoon anyway. I was always worried about not making it to the hospital in time and my Neph told me not to worry and just live my life.

[RichardMEL]

Like I said - just do it. It's like not going to a movie or a show or something because "they might call..." well geez, a few hours out of range... if they call and you don't get it for 2-3 hours I don't think it's the end of the world. You just call 'em back and say yep, I'll be right there. NOT doing stuff you want in the hope the call will come is probably the best way to ensure it *won't* come then, and that you'd be miserable not doing stuff you want. You can't let that stuff get in your way or stop you from living your life the way you might want.

[Zog]

I would totally buy a plane ticket on any airline for any distance if it meant Jenn was going to get a transplant the next day.

[Chris]

One thing to consider is travel time. Your still able to go somewhere, just  not as far as you would like unless you have a chance to go somewhere exotic. Going to Alaska maybe your only time to do such a thing, so I say go for it, you only live once.
 
I think the average time needed to get to your transplant center is 2 hours, but something to ask your center. It's not like you have to get their immediately, just within a certain time limit. Also some centers will help you get to them, or use to. I was ofered a police escort, but said no because it seemed embarrassing and unnecessary.

[RichardMEL]

guys!! I totally thought of this thread LAST NIGHT!.

I was in Adelaide, which is about an hour and a bit flight from Melbourne where I live. I was in my hotel room, it was 10 at night and I was just unwinding after a long day. My phone rang! I wasn't expecting any calls. I picked it up: "unklnown number" uh oh.. the VERY FIRST THOUGHT that came into my head was "oh no, it's the hospital calling with a kidney" and had a minor panic. Luckily(?) it was my sister calling from a friend's place, but afterwards I thought gee if it had been a kidney call, that would have been some kind of irony!! I'm glad it wasn't. They can call me tonight - I'm back home!  *stares at phone willing it to ring!*