I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: marlinfshr on June 20, 2015, 06:41:56 AM
-
Well I've been on dialysis for just over 2 years now. I do manual PD with only 2 short exchanges/day and still pee a lot and feel fine.
I have started back to work as, like a lot of us with this "issue", I have taken a hard hit financially and would like to recover some lost funds. my career is seasonal and I am back to offshore sportfishing as part of my career. Well, we are into the season now so the past couple of days I have been fishing. Yesterday evening when I got back in and it was time to wash the boat I moved my phone and decided to check if I had received any messages. Perhaps another boat was looking for a mate/captain as the fishing had been good and we were coming up on the weekend. When fishing I turn my phone to airplane mode because we are about 60 or so miles offshore and I don't want to kill the battery so notices of missed calls/messages don't show up when I turn the phone back.
When I checked my voicemail I had one new message. And there it was, the transplant hospital calling and saying there is a potential offer for a kidney. Caught me 150% off guard. Now it is too late, of course, as I understand there is only a few hour window in which to go through with this and I'm sure that upon leaving a message on my phone they hung up and went to the next candidate.
Did I screw up by not calling? Would that affect any future calls? I am actually more worried about getting bumped off the list or just getting pushed aside later because of this.
Now, one thing I'm thinking about is that, yes, I need a kidney and accept that mine are bad, but they still work. I need one. Yes! But I don't need one yesterday. I want to get off this dialysis but I am still able to do what I want to do. I can still go fishing several days in a row for 12 to 15 hours/day. Nobody can tell that I have kidney issues and the ones who know are shocked when they see me in action. I drink way too many big gulps on a normal basis, as I have always done, and don't retain any fluid. I spent a week in Colombia over new years and next year I'm planning on spending about a month there and then return home for a couple weeks before going to Costa Rica for 2 weeks. Thjat is the current plan as I feel I am up to it. I'm bringing all this up because I want to stress again that I don't need one "yesterday" and at this moment, though needed and wanted, it isn't a life or death situation.
I didn't expect any calls so soon and had given a bit of thought as to what I would do if offered one during the "season", but honestly put any thinking about it aside and haven't been giving it much thought. I know it's too late now but I figure, perhaps, this was not the best time anyway because it is in the beginning of my working season and I would like to (need to) build up some funds a bit and a transplant now would end the season for me as I figure no work for about 4 to 6 month's? I reality that would turn into no work until next April as my season ends in October and I live in a mainly seasonal coastal tourist town which doesn't have much winter work anyway if I decided to take a temporary winter job which is practically non-existent here!
So, did I screw up? Do you think this will affect any future offers?
-
I think you should call the transplant center and tell them exactly what happened. You don't have to go into the fact that you don't "want" a kidney right now. But you DO want to stay in touch. They will only call you if they have a kidney that is a good match. It may be a while again for that to happen.
Aleta
-
I wouldn't worry about it. There is a reason they call around for alternates. But could you find an alternative contact that could contact you via VHF if you happen to miss a call?
The one call I missed was a "we have a kidney out and we need to hear from you within the next 15 minutes" call and thanks to Comcast our internet was out so no vonage service. After that I bit the bullet and started keeping a cell phone on and near me.
-
I think you should call the transplant center and tell them exactly what happened. You don't have to go into the fact that you don't "want" a kidney right now. But you DO want to stay in touch. They will only call you if they have a kidney that is a good match. It may be a while again for that to happen.
Aleta
I think I'll go ahead and do that. At least let them know that I had the phone off because of being out of range for hours. It's not that I don't want one now. I know I missed this opportunity and I always try to look at things on the bright side so I'm looking at the reasons for "not" having it done now. I guess it will make me think of what I should do in another situation. That call could have been 15 hours old by the time I got the message. Who knows?
Now one thing I am thinking is that perhaps this wasn't the right time (though if this call comes in October I wouldn't even think about it as I'd say OK) but I am 47 and feel good overall. A kidney may last what, 10 years? So in my mid to upper 50's I'd be going through this again. That would push me into my mid to upper 60's in which case there would probably not be a third transplant. So, if I have to wait a couple more years, though I want off dialysis NOW, my first transplant should last to I was almost 60 in which case a second should get me into my 70's. Then I can say I've lived a good life and accept that I'll be on dialysis. Just one of my ways of looking at things.
Another thing that I need to think about is how long after a major operation will they do a transplant. I had a quad bypass last august and even though I notified my transplant coordinator right afterward I have not heard anything back from them regarding it. It has been about 14 month's since my last cardio checkup with the transplant cardiologist and I've since had heart surgery and they haven't notified me about another checkup. It's been 10 month's since my bypass.
-
I wouldn't worry about it. There is a reason they call around for alternates. But could you find an alternative contact that could contact you via VHF if you happen to miss a call?
The one call I missed was a "we have a kidney out and we need to hear from you within the next 15 minutes" call and thanks to Comcast our internet was out so no vonage service. After that I bit the bullet and started keeping a cell phone on and near me.
Definitely something to think about as the more time passes since listed, the more of a chance in receiving another call later. And there may be a good chance it will happen again while offshore. Though we are well out of range of any land based GPS, most boats have satellite phones now so there is an option.
Funny about the cellphone though because since starting a boat detailing business and doing freelance crewing on boats, I always have my phone with me because I don't want to miss a potential client or job for the day. Because I'm sure, just like a possible transplant, someone calls and you don't answer right away, it is on to the next one for them.
-
Did they have you set up at least a couple of alternate contacts? When my call came, I was vacuuming and didn't hear the phone. When I finished turned off the vacuum, I think I had at least a half dozen urgent messages. A couple from the transplant center and a couple from each of my alternate contacts. You could always make sure your alternate contacts know where you are and how to reach you if your phone number changes each time you go out.
-
If you are worried about being in touch there are satellite services that cost around $150 a year and around $150 for the device these are not satellite phones but seem to be in gps systems. Any one can text you and you can text back.
-
^