Newbie with Questions

[Kidney Bean]

Hi Everyone,
I have been reading your very helpful posts for awhile now, and I very much appreciate all that you have shared. I have a few questions on topics that might have been covered, but I might not have read that far back in posts just yet!

I am donating a kidney to my coworker as part of a chain donation. He and I actually match, but I thought since I am a universal donor, it would be nice to take at least one more person off the waiting list. Our date has changed twice now, and the two other participants can no longer be part of our chain (reasons unknown to me, due to privacy laws). They will be testing a new potential participant next week. Does anyone here have experience with this? My friend is frustrated at the delays, but I still feel that it would be best to wait a bit longer to see if we can help someone else. Those that were part of chains, how long did you have to wait to proceed? I am conflicted about waiting on more participants, feeling guilty having my friend wait. He was very angry at first, but now agrees that it would be nice to help someone who has been waiting even longer than he has.

I have only told my immediate family and my supervisor at work. I do not plan to tell many (if any!) of my friends. I am guessing other people have felt the same way. If so, what did you tell your coworkers/ friends about your absence? My family is very supportive, but they don't understand my desire to keep this whole thing private.

One more question (for now, anyway!): is it true I will no longer be able to take anything stronger than Tylenol after donation? I haven't taken Tylenol since I was a little kid, but I do know that it doesn't work as well for certain types of pain (cramps, arthritis, etc.)

I appreciate any feedback, and am grateful to have found this site!

[CK]

Hello and welcome! It's certainly very nice of you to donate so your coworker can be helped. I told everyone, coworkers, friends, family, that I was donating. I didn't feel the need to keep it private.

After donation, yes, you are supposed to avoid NSAIDS, like Ibuprofen. They are metabolized through the kidney and they advise you not to take them unless you absolutely have to and then only short-term.

Don't know about the chains. Seems like really, YOU are only taking one person off the list no matter which way you do it.

[Fr Pat]

     One thing to consider about telling co-workers or not is whether they might "invent" other reasons for your absence. Some work-places are prone to gossip, and might uncharitably talk about other possible reasons for your absence.
     Also keep in mind that many people are uninformed or badly informed about living kidney donation. Letting them know might help educate them, or even inspire others to do likewise when the need arises, or at least to sign their after-death donation permission.
         best wishes,
             Fr. Pat

[jennybebopper]

Welcome!  Great questions!

Yes, unfortunately there seems to be a very standard veto on NSAIDs after this surgery, long-term.  My surgeon told me an occasional pill here or there realistically should be harmless but try to avoid whenever possible.  They also brought up as a relatively young donor, the fact that should I develop any type of arthritis down the road, this surgery would eliminate using chronic NSAIDs for relief.

I'm glad you brought up the coworker thing.  I don't know what field you work in.  I'm in healthcare and had only told a few close friends.  By the time I came back everyone knew and honestly, it was a very awkward conversation to have.  Everyone has been extremely supportive and flattering, but I think people are very curious about the decision to become a living donor.  I felt really uncomfortable at first talking about myself, but have since realize what a wonderful opportunity it is to discuss organ & tissue donation in general.  I don't go telling people I had the surgery, but if they bring it up I share what I know.  And just think, if down the road your coworkers know someone who needs a kidney or who is looking into donation, they will have anecdotal evidence for both donor and recipient!  Ultimately it is definitely your decision whether to keep it private, but if anyone at work knows, I would consider how you will discuss the matter should it get "leaked" during your absence. 

As for chains, do what YOU want.  You are already making a huge sacrifice.  My donation was not very time-sensitive for my recipient, so my center wanted to try to fit me into a chain.  But I had a relatively small window of opportunity with my work schedule this year, so I ultimately decided to go with just the direct donation.  Do whatever you feel is right.  Best of luck, and let us know how everything goes!

Jenny

[pilotjjc3]

Good luck with your donation.  It is a wonderful thing that you are doing.

In regards to trying to control pain, I was told to try to only use Tylenol.  They said if I was in a situation where Advil was the only thing that was available, it was OK to occasionally take it.  But avoid habitual use of Ibuprofen.

I really didn't tell anyone before the surgery about what I was going to do.  I didn't want to seem like a self-promoter.  But, eventually word gets out and it seems like everyone wants to talk to you about it.  I was totally fine with that and would happily talk to them about the donation process.  I just didn't want to be the one who brought it up in conversation.  I would bet that sooner or later everyone will find out about your donation and want to talk to you about it. 

[Kidney Bean]

Thanks for the responses! I'm still not sure whether I will change my mind about telling people about the surgery, but I appreciate the advice to be prepared to talk about it if they find out anyway.

Something interesting: my Nana (my mom's mom) fell down the stairs as a ten-year-old and lost a kidney as a result. This was probably around 1935-ish. She was told she would never be able to have children. She had nine. She lived to be 85. I don't think anyone told her to avoid NSAIDs! I will double-check with my mom, though.

The hospital is testing a new candidate for the chain next week. I would like to help someone else in addition to my coworker, and for some reason, I am more comfortable donating to a stranger (strange as that sounds). I'd appreciate any good thoughts this way towards finding a match and moving forward!

Thanks again,
Annie

[jatopa]

HI Annie,
I donated to my brother.  I kept very quiet about it at work before the fact, in case I chickened out or was disqualified for some reason.  However, once it was over I didn't care who knew.  It is something to be proud of, and can really help other people be more open to the prospect of being donors themselves.  I have a friend who lost at kidney to cancer 5 years ago, and it helped me tremendously to see what a healthy life she led after nephrectomy, although for a very different reason. 
My friends all knew about the surgery ahead of time, and were on hand to give me tons of support as soon as I got home.
Best of luck!

[CK]

The only problem I have with people knowing is all the "oh my God, you are so wonderful! What a hero!" stuff. I find that very uncomfortable.

I guess I can see how you might prefer donating to a stranger than right to your coworker. Less feelings of them being obligated to you, or you getting upset if they don't take care of the kidney etc.

I donated to my boyfriend and I got a lot of strange looks that I wouldn't have gotten if he was my husband. I did start telling people I don't know well that I donated to a friend.

[MissFrizz]

I only told my best friends, for support, and my family.  It was uncomfortable for me to talk about it and I really wouldn't know how to bring it up.  People always said the nicest things when I told them.  What they said never fit the way I felt, so it always seemed awkward for me.  The day of the surgery, my husband logged into my facebook account as me and changed my status update to say that the surgeries went well.  HE told everyone beforehand, that is just his style of dealing with it.  I was annoyed that he did that without my knowledge (or ability to change it), but it was nice to get alot of support during the healing process.  People who otherwise wouldn't have known sent me cards, flowers, and called.  That was nice.  I feel the way others have said here, that it was hard to talk about before, but afterwards it is nice when people wish me well or ask me questions about it.   

I suppose you could tell your coworkers that you need a quiet vacation and leave it at that.  Inventing an elaborate story would be embarassing should the truth come out afterwards.

Good luck with everything.

[lawphi]

My husband and I were part of a chain.  Originally, someone else at the hospital was supposed to receive my husband's kidney.  The surgery was scheduled and the original recipient had to be hospitalized. My husband was able to receive the kidney on the original date.

[jstx]

I haven't been on the message board in a while but saw this post & thought I'd chime in. I only told my friends outside of work that I was donating. Some of them knew from close to the beginning when I was researching donation because a friend was in need. Some knew later in the process after I found out I wasn't a match for my friend & had decided to donate to a stranger (now a friend!). At work, only two very close friends knew beforehand. I told the rest of my co-workers that I was taking some leave for a surgery & left it at that. Afterwards, I told my boss & a couple friends but nobody in the office really knows (and it's been 11 months since surgery). In some ways I feel like I should've said something when I was going on leave but the gossip & office politics are REALLY bad at work so I chose to keep it personal. I wonder if I've missed an opportunity to share the experience with someone who might have a family member or friend going through this & I think I've done the donor community injustice by not sharing-you never know how it might affect someone else & get them started in at least thinking about donation after death. One of my friend's sisters told me I inspired her to join the bone marrow registry. How many more like her are out there? But ultimately I know I was protecting myself from the backbiting & refused to allow people at work to turn this into ugly gossip. Our company is closing at the end of the year so knowing I don't have to face them much longer probably also contributes to my regret....oh well, we live & learn. And I still have opportunities to discuss organ donation should I choose if the subject comes up.

Good luck with making your decision. Do what you feel is best. Congrats on your upcoming gift of life. I think it's great you're trying to start a chain. I was hoping that would happen for us because I'm blood type AB & wanted to help as much as possible, but it turned out my recipient & I were the best matches for each other. It still felt GREAT knowing I helped one person get off the waiting list. And he's doing great so I couldn't be happier.