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Author Topic: Going through the process...  (Read 12019 times)

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Offline Fr Pat

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Re: Going through the process...
« Reply #15 on: August 03, 2012, 04:21:40 AM »
     Different hospitals (and different surgeons) may have different requirements about eating/drinking and about "bowel cleansing' before surgery, so it would be good to get clear instructions from YOUR hospital. What might be allowed in one place might be prohibited in another place, as medical professionals have differences of opinion on the importance of these steps.
      Fr. Pat

Offline Snoopy

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Re: Going through the process...
« Reply #16 on: August 03, 2012, 05:34:15 AM »
Hi, Happy.
  Good luck with the process.  I can definitely empathize with the problems communicating with the coordinator.  Mine kept informing my "partner" (recipient candidate--I was non-directed) of dates for appointments, but not bothering to inform me directly.  I never really knew whom to call to know where I stood.
   In my case, since I know and like the coordinator, I think the issue was underfunding/understaffing.  Still, it added to my frustration.  I was particularly unhappy about not being able to meet my surgeon before the surgery.  Literally, we met as they were placing me on the operating table.
   Also, I know what you mean about the "happy talk" from the transplant establishment that sometimes seems to soft-peddle the risks to donors.  For an antidote to that type of message, you might try, (http://livingdonorsarepeopletoo.com/   or   http://www.sirencristy.blogspot.co.il/).  She herself had a very unhappy result, and is sort of a watch dog for failings, particularly towards donors, of the transplant industry.  Note:  her tone often seems quite cynical and bitter, most unlike that here on LDO.  But she very kindly sent me a lot of interesting information after we corresponded briefly, and she raises a lot of good questions about things like gaps and other inadequacies in the follow-up and data collection on post-donation experiences.  I found that being exposed to her side of the story helped me feel I was considering the donation from all angles, without merely jumping on the bandwagon of "isn't it great to donate".
    That said, I donated about 10 months ago, and have been fine. I never regretted it for a split second.  I definitely agree you must be careful about lifting, and never let yourself get dehydrated. (I live on the edge of a desert, and so I'm a little obsessed with this point, so I tend to carry water bottles around with me). 
   LDO is a wonderful tool for getting information and support.
       Good luck!  Snoopy

Offline jatopa

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Re: Going through the process...
« Reply #17 on: August 04, 2012, 01:39:59 PM »

Studies have shown that living donors do live longer than the general population, but that reflects the intensive screening process.  No one who is "sick" or in a weakened state qualifies as a living donor.
The real question is:  do living donors live as long with one kidney as they would with two?  That is a tougher one to answer!

Offline dodger

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Re: Going through the process...
« Reply #18 on: August 04, 2012, 10:01:27 PM »
My take on how long I hope to live.  I prayed that I would live long enough to see my children grown.  Well that has come and gone, I'm a grandparent to 5. Everyday since the last one graduated has been a bonus! I had the opportunity to help my niece and have never regretted it at all.  There is some information lacking  for donors but maybe this is the place to gleen it.  So now I am more aware of my health, and taking charge, being a very active participant in it.  I will live life well, love well, and, consider everyday a bonus. 

I was fortunate enough to have had good health to become that donor, guess that some, One, had a plan for me, and it worked out.  What ever happens here on out just happens, I will do the best I can to take care of my health, good diet and exercise. Using this site and staying in touch with all of the donors is probably the best thing we can all do.  So stay in touch everyone.
Donated 3/10/11 to my niece at UW Madison, Wi

Offline HappyTimes

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Re: Going through the process...
« Reply #19 on: August 06, 2012, 05:04:18 PM »
Thanks to each and every one of you that has responded.

CK - I would gladly take 25 years! The fact that it make last far fewer years is troublesome to me. I don't think I would feel resentful, just very disappointed.

KidneyBean - Great to hear about your story (I read your thread) and can only hope my recovery would be as smooth.

Peter - Thanks for the information!

Snoopy - Thanks for the links and other information. It's good to at least see the other side.

Jatopa - My thoughts exactly...

Dodger - I can only hope that I am as healthy as you after!


Right now, I am even more scared of the potential long term issues. Being relatively young (28) I have a long time to live with any side effects. My greatest fear is that I will be tired which has been reported multiple times.

While this would affect me, it also greatly affects my wife. If I am tired, does that mean I won't be able to do as many chores/errands? Would that keep me from being as effective at my job which causes me to lose out on a promotion? Will she have a worse life due to me donating? There is zero upside for her... She is being supportive but I can't help but worry about it.

Meeting the surgeons will happen in a week or two. I am gathering my questions. I'm not freaking out but I am scared.


Offline Snoopy

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Re: Going through the process...
« Reply #20 on: August 09, 2012, 05:22:12 PM »
While this would affect me, it also greatly affects my wife. If I am tired, does that mean I won't be able to do as many chores/errands? Would that keep me from being as effective at my job which causes me to lose out on a promotion? Will she have a worse life due to me donating?

I'm glad you made this point, because it's definitely a legitimate issue.  At every stage of the approval process (including the unofficial portion, when I consulted my rabbi), everybody's first question was, "What does your wife say?"  As you note, your decision affects her too.  And, unfortunately, donor outcomes can be quite difficult on rare occasions. As I posted recently, I made sure to make out my will, just before my surgery, just in case.  Worrying about the potential long-term impact is normal, responsible behavior.  You need to do a gut check--actually, gut checks, as individuals, and as a couple.  One approach to this is to get as much hard data as possible (and it's not always so easy, since the data reporting and collecting system is flawed), to get a handle on what kinds of outcomes are more likely and less likely.  Never let anyone get away with telling you that donation is risk-free.  It's not.
   All that said, usually it does go well, and it's a beautiful thing to do. Today is my 10-month anniversary, and it's gone very well so far.  I wish you the same experience.
   Good luck, Snoopy

 

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