I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on September 18, 2011, 06:58:25 PM
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It didn't occur to me to ask my transplant center earlier if being listed means I should never leave town, or what I should do if I want to take off for a day, or take a vacation. How far do you roam? Do you just call them if you plan to leave town for a few days?
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Since the wait time here was 4 to 6 years we just traveled when we wanted, although we were always home for Jenna's in-center dialysis, so longest trip was 3 days. If you've got a cell phone and are within 4 hours or so they would not exclude you. I wouldn't think it matters to let them know unless you're really far and making the trip home would be nearly impossible. However, remember the news story where a woman was airlifted off a cruise ship to come home for a kidney transplant? You never know!
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The wait here in Chicagoland is at least 4 years, but I email my coordinator every time I go out of town if I am away for more than an overnight stay. I tell her where I'm going and for how long I will be there, and I give her my cell number even though she's supposed to have it on my file. Never hurts to give too much information.
I'm terrible about turning on my mobile; I never make calls on the thing. I have one of those plans where you pay $50, and that lasts me for a year! I should turn it on in case the perfect kidney comes available, but let's get real...ain't gonna happen any time soon. Still, I should get into the habit of turning it on. ::)
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Before my transplant I was all packed and ready to go camping at a lake..... for labor day..... I choose this particular lake as its on 2 hours from Portland and it has cell phone coverage..... I promised my family that when I went camping I wouldn't go out in the middle of no where as I usually do..... hike in or off road for miles... well I got the call before I left town.... but.... I dont carry my phone with me at the lake when I am hiking or fishing or just hanging.... well I didnt expect a call for another year..... IN fact I was ready to leave for camping that morning when I did get the call at 4 am .... needless to say I guess the call can come at any time..... Yea my family said " I told you so ... you need to carry your phone all the time...." its hard to fly fish and use the phone.... its hard to handle huskies on leash and use the phone..... I hate to carry phones..... Now I have to call them almost every day with BP , labs, and lots of information of my daily activities..... Now I have to carry my phone,,, they are always calling about this and that..... not complaining... really.... I am very happy.... I if I had to do it all over again ..... I would carry my phone....everywhere.... and Yes I would answer even if I have a fish on the hook......LOL
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I might just not leave home for the next couple of years. I'm very fortunate to live in Oregon and likely to be an easy match (blood type A, PRA 0). My neph said she doesn't think I'll be on the list for very long. It came up last night because my mom asked me about going back to MN for a visit and I told her I'm "grounded." I think I'd be very nervous to be that far away and possibly miss my call.
I'm working hard on my phone habits. I'm not always good about hanging onto my cell phone and I almost always leave it in the living room at night. I'd never hear it ringing from the bedroom. I'm better about remembering to grab it when I go to work now, but I still forget to take it to bed with me. I'm not much of a phone person, so it's hard to remember that I need to keep it with me.
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last year, we went on an alaskan cruise plus a couple of days in seattle. We left in October. I called the transplant clinic in april to see where i was on the list, and then before leaving I informed them of where we were going and left them our full itinerary.
A good idea is to leave them as many contact phone numbers as possible. I gave the transplant clinic my home phone, cell, plus my work numbers, and my email.
If you are going anywhere, just let them know when you're leaving and when you're coming back.
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I was told to stay in a three hour radius. Which was fine with me - we are 2 hours from the ocean and 3 hours from the mountains. Lots of vacation spots close by. If we went on a trip, I called the coordinator, each time to say I was out of the area. Then they know you wouldn't beable to get to the hospital in time (unless you have your own private jet). But remember to call them back when you are home! After carrying a celll phone faithfully for 5 years, the call came on my home phone. I never remember to take my cell phone with me now!
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I was told to notify my transplant coordinator if I was to be away while I was active on the list.
However, I didn't let my being on the list stop me form taking out of state trips. My theory was that if I missed a call I was high on the list and most likely to get another one soon after that. I was on the list for over three years for my transplant in 1994, and three and a half years for my transplant in 2010.
It's up to you how far you wish to roam.
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We ALWAYS notified the transplant center whenever we traveled. We gave them any additional phone numbers that they might need to get in touch with us. But we still traveled.
:2thumbsup;
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I too was told to be within three hours of the hospital, but if I did need to travel further away I just needed to call them and let them know so they didn't spend time trying to find me if a kidney became available.