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Author Topic: Decided to get tested.... but have a few questions  (Read 8369 times)

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Offline Aikaterini

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Decided to get tested.... but have a few questions
« on: November 02, 2012, 12:12:59 AM »
Hey guys!  I posted in here a month or so ago that I was thinking about it but I wasn't sure.  Thank you all SO VERY much for letting me know that that was ok.  I've kept thinking about it and praying about it and have finally decided to go on and get tested.  It may sound corny/cheesy/another adjective you prefer but I have a sense of peace about the decision.

I'm still a long way out but...

If I am approved, after I donate will I need to follow a certain diet?  I know that my dad isn't supposed to eat a lot of beans for example but he's supposed to eat a lot of meat.  Will I be on a diet like that?

I'll probably be back with more questions but that's the only one for tonight.

Offline Fr Pat

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Re: Decided to get tested.... but have a few questions
« Reply #1 on: November 02, 2012, 01:04:47 AM »
     After kidney donation there is no special diet to follow, nor special diet restrictions. Your remaining kidney should handle everything fine, and you can return to normal diet.
     Right after surgery, of course, your appetite will be wacky for a while, and many donors have trouble with constipation in the days after donation, but things get back to normal soon.
      Naturally, you will want to follow the healthful diet recommendations that are recommended for EVERYBODY to help maintain good kidney health (avoid getting over-weight, eat your veggies, take it easy on salt, etc.)
     Many donors find tht they are more sensitive to alcohol in the weeks/months after surgery, so if you drink you should be cautious when you start again, as a small drink may have the effects that a large drink used to have.
     best wishes,
         Fr. Pat

Offline Aikaterini

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Re: Decided to get tested.... but have a few questions
« Reply #2 on: November 02, 2012, 01:24:06 AM »
Thanks Fr. Pat!  That doesn't sound that bad.  Sounds like what I try (with varying degrees of success) to do now.  I don't drink much so that shouldn't be a problem.  Thanks! 

Offline Michael

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Re: Decided to get tested.... but have a few questions
« Reply #3 on: November 02, 2012, 11:04:01 AM »
Here is an LDO web page with additional information: https://livingdonorsonline.org/kidney/kidney_livewithone.htm

And a page at the US Dept of HHS web site on living with one kidney: http://kidney.niddk.nih.gov/kudiseases/pubs/solitarykidney/

Michael
Living Donors Online
Our mission: to improve the living donation experience

Offline Gee

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Re: Decided to get tested.... but have a few questions
« Reply #4 on: November 02, 2012, 12:35:28 PM »
Good for you that you are stepping up to help someone by being tested to be a kidney donor!  I know what you mean about this web site - the testimonies and support for each other helped me to decide to be tested (2 more weeks & I find out if approved).  This is my first post but I've been reading this site for months.  Don't worry, you'll do great!
Gee

Offline SWB

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Re: Decided to get tested.... but have a few questions
« Reply #5 on: November 02, 2012, 04:06:47 PM »
As a side note on the ongoing diet - after reading some conflicting information about ongoing diet restrictions, I clarified with my surgeon immediately after the procedure.  His recommendation was to avoid protein shakes for a while; however, I could really eat anything I want.  According to him - now that I have one kidney I need to give it some time to be fully functional and take up the extra work of the missing one as well.  And, it might need several months to get it up and going to that level.

However, one item I believe worth mentioning is that it is extremely important to watch your weight, drink plenty of water, and eat healthy.  Unfortuantely, it feels like I am one of those folks who can smell food and gain 5 pounds.  So, exercise and a health diet is crucial for me.

Although you don't have restrictions on the food long terms, it is cruical to watch you overall dietary habits and keep your BMI in check.

Good luck with your donation process.

-Scott
Scott
Donated right kidney to uncle
October 18, 2012 at University of Alabama (UAB)

Offline Aikaterini

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Re: Decided to get tested.... but have a few questions
« Reply #6 on: November 02, 2012, 06:00:29 PM »
Another question....

Have y'all heard anything about the drug Nulojix or Belatacept for recipients?  Apparently Emory Hospital in Atlanta does it with its recipients and I was wondering about it.  Dad wants to get his transplant done at Emory if his doctor clears the Belatacept drug.  I don't particularly want to be at least 3 hours away from home.  But we'll come to that conversation when we start the testing if I'm a match.

Offline sloaner1982

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Re: Decided to get tested.... but have a few questions
« Reply #7 on: November 04, 2012, 07:07:29 PM »
Here is some more info for you to research to help you become better informed BEFORE you decide to donate.  check out www.lifeafterkidneydonation.wordpress.com
also research on livingdonor101 also check this info out http://www.ehow.com/about_5459758_vitamin-kidney-function.html also check out http://www.renalandurologynews.com/ckd-develops-in-many-living-kidney-donors/article/198730/   these are some great places to begin a truly informed consent process. Please make sure you do lots of research and do not only go into this with your heart- but use your head as well. I say that because I can not go back in time and redo what has already been done. But hopefully my experience will encourage other potential donors to really be prepared and think about if they could live with the many possible things that could happen to them after donation. Because of our hearts and compassion for another human life is the real reason we would want to donate in the first place. Just please make sure you are fully and Completely informed.  I do want you to know something that most likey you will never be told as I was not as  well. Did you know that Transplant centers are NOT required to follow up with a living donor more than two years post donation? Most centers don't even make it that far with follow up. Mine did not and many others I know of did not as well. It was 7-8 post that was the last follow up they ever did for me. I have been on my own ever since and I will tell you that my numbers are starting to not look too good. I am currently 2 years 9 months post donation.  God Bless and Take care

Offline SWB

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Re: Decided to get tested.... but have a few questions
« Reply #8 on: November 05, 2012, 06:15:50 PM »
Not familiar with the two drugs you noted; however, will ask my uncle since he has been on several.

As posted previously many times, you need to make sure you are your own advocate.  By that I mean make sure that you get independent input from your own doctor. 

Different donors have different experiences and every facility is different.  My experience has been nothing but positive.  My donation was done at UAB (University of Birmingham).  What facility are you looking at donating at?

I have seen posts from others who state that the facilities intentionally did not tell them what they were getting into and/or they felt pressured for donating.  My experience has been completely opposite of that and I believe most others (especially in the US) has been opposite.  If anything I was so informed about risks that I felt like I was fighting to donate.  Regardless though, I would have donated even if the risks were higher for ongoing issues.  In my instance it was a life/death decision for a family member I love.

Being anxious is normal, but you have to make sure you are comforable with the risks.  For me, the rewards vastly outweighed the risks and I have been blessed with the outcome.  Of course, there is no guarantee that the donations will be successful and of course there are risks for the donor; however, that exists for every major surgery.  And, many times I think "post-surgery" issues from the donation may not necessarily be tied to the donation process.  Sometimes as we get older life just happens.  In other words, we have health issues that arise and sometimes it is easy to associate those to the donation.  But, in reality we get old and stuff just happens to us.  Just my 2 cents...

If there is anything I can do for you let me know, including sharing details or answering questions - just private message me.  However, would love to know what facility you are looking at donating at.  I am in Memphis, TN area but donated in Birmingham - go figure...
Scott
Donated right kidney to uncle
October 18, 2012 at University of Alabama (UAB)

Offline Aikaterini

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Re: Decided to get tested.... but have a few questions
« Reply #9 on: November 05, 2012, 06:21:39 PM »
We are in Birmingham so I want to donate at UAB if possible.  Emory uses that IV drug I mentioned (Belatacept aka Nulojix) and dad wants to donate there.  Looks like that will be a conversation we will be having if I'm eligible. 

Offline SWB

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Re: Decided to get tested.... but have a few questions
« Reply #10 on: November 05, 2012, 06:30:03 PM »
That is awesome.  I am actually going to be back in Birmingham this Thursday, spending the night and then coming back home with my uncle and aunt when my uncle gets discharged on Friday morning.

If you would like I be glad to introduce you to my uncle and also talk to you face to face at UAB when I am there later in the week so you can get questions answered and speak face to face.  If interested just send me a private message and we will go from there.

Good luck with everything.
Scott
Donated right kidney to uncle
October 18, 2012 at University of Alabama (UAB)

Offline Aikaterini

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Re: Decided to get tested.... but have a few questions
« Reply #11 on: November 16, 2012, 08:01:08 AM »
Hey guys!  I just had my phone interview yesterday so the testing is finally getting started.  One question though... Dad is thinking about getting the transplant done at Emory (they offer Belatacept which is a new IV anti rejection that isn't supposed to scar the kidney, etc).  Mom and I are trying to convince him to go to UAB because 1) we live really close to Birmingham and 2) last time he tried an experimental drug he lost the kidney.  Just in case would my results as a match or not from UAB transplant center carry over to Emory?

Offline sherri

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Re: Decided to get tested.... but have a few questions
« Reply #12 on: November 18, 2012, 02:36:14 PM »
your blood tests results should carry over. Plenty of donors do all their testing at hospitals in their own area and results are faxed to the transplant hospital. Anytime you have any testing make sure to get a copy of the results. If they are not accommodating or you find it not done in a timely fashion just go to medical records and sign a release and get your own copy. You could also try asking for all results to go to your primary care and then they will have a copy for your records. I kept copies of everything and I do this as a rule for all my healthcare as well as for my children (and now my mom as she is aging).
Sherri
Living Kidney Donor 11/12/07

 

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