Travelling while on the list?

[waitlisted]

I would like to get comments from you, if you have travelled while on the list?

I have been told that I would need to be able to get to my hospital within 6 hours, so this limits the travelling quite a bit. I was also told that in case I will be travelling outside of 6 hour limit I could call the hospitals and let them know not to call me and they would put me "on hold".

Basically I would not like to stay at home for next X years (average 5 years in my case) and I am planning for a vacation trip next spring, which should not be any issue with the average waiting time. However in case I would win in the lottery and the perfect match would be found before that, I would not be able to travel. I have been contacting couple of insurance companies and asking about the travel protection insurance policies, if I would be eligible for refund in this case. Mainly they have been telling me that this would not be a cancellation for medical issue because of pre-exitsing condition, but I would need to have a "cancel in any case policy" to cover this.

Anybody having any experiences about these issues? Your comments would be highly appreciated.

[paris]

My center wants me to call if I am leaving town and I always have my cell phone on. I was told to stay in a four hour radius, but then it was determined that my PRA was high and the chance of a transplant went down to 0. They still want to know if I leave town. I can't imagine if I was out of town and they had a match for me. We have always traveled - all over the US, Canada, Mexico, Europe, Carribean (husband worked for airlines) and I miss not going away whenever or where ever we wanted.  We are fortunate to live 2 hours from the ocean and 4 hours from the mountains, so I can still get away. My daughter is living in Hawaii for a year, and I want to go see her. May just roll the dice and go!  Good luck with your plans.

[livecam]

Neither UCLA or UCSD said a word about traveling while on the list.  I never got a pager from either place  but I always carried my cellphone.  I always kind of thought the call would come while I was off somewhere and if it did I was prepared to get back quickly whatever it cost.  A kidney can be stored for a period of time, I recall asking about it and being told that they don't like to go more than 24 hours. The longer it sits (cold eschemia time) the lesser the chances are of a succesful outcome.  My own kidney probably was stored for 12-18 hours by my reckoning and has worked perfectly for some years now.  I wouldn't really worry about it, make sure you take a cellphone and that they have the number.  If you are dialyzing they will certainly be able to reach you through the distant unit.  My own call came one day at work and it was by cellphone. Go on vacation and have fun. 

[jdat]

The rule in regards to the maximum allowed time between the call and transplant changes greatly from one center to another.

Just so you know, I believe that it is technically possible to do a transplant under 24/36 hours but having the shortest wait time is always the best thing to do ( higher reliability of the transplanted organ ).

Call me selfish or whatever but I NEVER told anyone from the transplant center the times where I would be away.
The reason why I acted that way was also because they told me if I was there under 12 hours or so it should be fine and I was always in that margin ( even when I flew across the Atlantic  ).
Just have a good emergency plan if you go somewhere that's a bit far away.

When I got "the call" I was an hour and a half away ( my hometown so nothing unusual there ).
Got to the hospital 2 to 3 hours after the call and was transplanted 15 hours later ( with the call time it was around 19 hours total ).

The rules you were given are to pressure you in realizing how important it is for you to get there as quickly as possible; yet you must realize you will always wait much longer when you actually get to the hospital ( I think that's a relatively common occurrence ).

[Rerun]

IMO if you leave to where you know you can't make it back, just call and put yourself on hold.  That way you can relax instead of worry "what if, what if".   Just go and enjoy yourself and when you get back call and tell them to take you off hold and then call the next day to double check.

[waitlisted]

Thanks for the comments!

I am OK with putting myself on hold during the trip, but I am mainly thinking, what if I get called between the time purchasing the trip and the time of actual trip. In that case it looks to to be very difficult not to loose the money you have paid for the trip.

[Sara]

How expensive of a trip are you thinking about?  If it were me, I don't think it would be a big deal to lose a 700.00 airline ticket if I was getting a kidney instead.   

[waitlisted]

I am planning a birthday trip for my brother and his wife, so I need to buy tickets for 4 people, which make it bit more expensive, but you are right getting a new kidney is the most important, so if that would happen this would be just a "price for a kidney". I just generally would hate to pay for a trip and not then not be able to go...

However I got info from one insurance company used by my travel agent, that as long as I would buy the insurance within 14 days of purchasing the trip it would include pre-existing condition waiver and if I would need to use the insurance they would contact my doctor and ask if I was OK to travel when I bought the trip, which should be OK. So all in all everything looks good and I will continue the planning.

[Zach]

Remember if you miss the call or decide for some reason you don't want it at the moment (due to a cold or flu), you still stay at the same place on the list ... they don't demote you.

[MelissaJean]

Good job at deciding on taking that vacation!  Unless you have been waiting for a long time and you might be at the top of the list, I wouldn't stress out.

You can't live your life around "what if" all the time... you might miss out on some amazing memorable moments!!!

[livecam]

I traveled while on the list with no problems.  I left dialysis 30 minutes before this picture was taken. The transplant was less than 30 days after!

All Aboard!

[angieskidney]

Wow nice pic!  You don't see limos that long here

[kitkatz]

Where were you going?
What were you doing?
Details, details, details!

[livecam]

Where were you going?  To the port of San Pedro
What were you doing?    Standing in front of that limo
Details, details, details!    Going to be bad for four days on the Ecstacy.

[kitkatz]

It sounds like you had a lot of fun!

[livecam]

Thanks Angie...my crazy neighbor got us that thing...first time I ever saw the inside of one.

[angieskidney]

Thanks Angie...my crazy neighbor got us that thing...first time I ever saw the inside of one.

I still have yet to see the inside of one of the SMALL limos they have here much less one THAT size! lol