Possible upcoming Donation

[KristaRM]

Hi there,

I found this forum through Google and was hoping to find some support for a possible upcoming kidney donation I'll be going through this upcoming May.  My mother-in-law has 10% functioning left of her kidneys and needs a donor ASAP.  I've been a part of the Paired Donor Prgm through the University of Minnesota for the past two years (since I am not a direct match for her) and finally received a call this last week that there may be a match for my MIL to be able to receive a new kidney.
I've been waiting for this call and am SO excited to be able to be a donor and want nothing more for her to live a happy, long, healthy life.  I do, however, have some frustrations that I really feel I am unable to vent to friends and family.  My main issue is and has been that I am the ONLY one in the family- extended or otherwise- that is attempting to be a donor.  My husband has a 27 year old brother that isn't working, lives off the government, and spends 90% of his time playing video games.  I know being a donor is a personal choice and I am trying not to "judge" anyone for not wanting to be a donor... but it's hard sometimes.  I'm a mommy to a 4 year old girl, work full time and am still more than willing to take the time to be a donor.  Why isn't anyone else stepping up?  (I do feel like an ass for even thinking this way which is why I've chosen not to mention anything to anyone!)
Another thing... the thought of the actual donation makes my hubby completely nauseous, so he really doesn't like to talk about the whole thing.  He's supportive and went with me for all of the testing to even be a donor, but I think now he's freaking out a bit at the thought of his wife having major surgery and the possibility of losing his mom if she doesn't have the surgery which I totally understand, but it makes things more complex for me.
I'll find out (hopefully) by the end of this week if all of the blood work cross matches the way they're hoping and if the donation will be scheduled.  My MIL is understandably very excited and hopeful as am I , but if it doesn't work out I'm going to feel like I've let her down.  I guess being the only one in the program is making me feel the pressure.
This is consuming my thoughts and I needed to vent- so thank you for taking the time to read my ramblings! Any insight or advice anyone has would be fantastic.

[elephant]

Dear Krista,
 
I'm SO excited you might be able to help her too! 

Donating a kidney is not for everyone.  Your willingness to donate is MORE unusual than your brother-in-law not offering.  I think that being a kidney donor is a special gift, like being an Olympic athlete or a opera singer.  You are special! 

Of course your husband is anxious!  He loves both of you.  Mine was concerned too, but once I came home from the hospital he was fine.

Let us know of the cross match goes.  I recall being quite concerned that I wouldn't be able to donate as I was also the only donor.  But really, it's not like an exam you pass or fail. Your willingness to donate is a 100% success already.  You are not responsible for the cross match, or the surgical outcome.

Love, elephant

[KristaRM]

Hi Elephant,

Thank you SO much for the reply, it's really a huge help to me.  I now have to wait until next Wednesday to find out the results of all of the blood work- fingers and toes are SO crossed over here!

[Fr Pat]

     Although we donors (I donated 14 years ago) know what the donor side feels like, we don't really know how the recipients feel, or the other family members like your husband. Some patients find it very hard to accept such a gift, and feel guilty that someone else is taking a risk for them. Given our general culture, your husband might be feeling uncomfortable because traditionally the MAN is supposed to protect, support, defend, etc. etc. the whole family. So having to sit back and let his wife help save his mom can be very disturbing. I'm not, of course, talking about our reasonable reactions, but rather the gut reactions that sort of happen whether we want them or not. So the family emotions can get complicated. Plug along and do your best. Living donation is a totally unknown experience for most families, and each family has to find its way.
    best wishes,
        Fr. Pat

[KristaRM]

Hi Pat,

You have some great insight- thank you.  My husband and I have talked before about how he's uneasy about the whole situation given the circumstances, but I've never really thought about the angle you provided. I really don't know what it's like to be in his shoes and I guess I can't really understand what he's going through since I'm so caught up in my own emotions.  He talked about being a donor as well but couldn't really handle the thought of the actual surgery.
This whole experience is so consuming in every aspect!!  Thanks again for your reply.  Reading this forum and all of the posts has helped in SO many ways.  I've been feeling like I'm alone in the donor-aspect of this and reading what's on this board is amazing. 

[Fr Pat]

     There are also lots of postings at the FaceBook page of Living Donors on Line, although they tend to be briefer than the ones that appear here.
     Fr. Pat

[KristaRM]

Oh wonderful- I'll look into that FB page, thanks!

[CK]

I like to think that anyone would donate to save a loved one, but - it's just not true.  I don't get it, personally.  I donated to my husband and I would have donated to anyone in my family or a close friend.  To me, it's not heroic, it's just logical - I have two kidneys and he needed one to stay alive.  The risk to me was minimal, why would I not do it?

Evidenced by all the people awaiting kidneys while on dialysis, the mindset of the donor is unusual.  If it weren't then there would be far less need for deceased donors.

[Chopsticks]

Krista,

Your MIL must really feel fortunate to have you as part of her family.  How amazing that you could potentially be her savior.

I am still very new to the kidney donor scene (I donated a kidney to my wife just this past week), but I can relate to the feelings you described.  For me, it felt like I was suddenly marked as "the donor" as soon as I expressed willingness to donate, even when there were other better donors available -- even some perfect match family members.  It almost felt like everyone let out a collective sigh of relief and quickly stepped aside to make way for me.  I was very confused by it all.  After talking to some of them, I came to realize that all their decisions were made based on their own independent, valid circumstances... maybe there were health concerns, job concerns, plans to start a family, etc.  All those decisions were perfectly valid and personal, and I actually felt better after talking to them a bit.  Just like them, your reasons to donate (or not) are completely personal and valid.  Just be sure it's something that YOU want to do, regardless of who else could potentially be doing it. 

For me, I decided that maybe I was placed into the donor role for a reason.  Maybe my kidney was healthiest out of all the other candidates.  It just took a great deal of faith to come to peace with it and go for it.  You never know... maybe your 27-year-old brother-in-law hasn't taken great care of his kidneys over the years and yours is the best choice for her anyway.   

Best wishes for your huge decision!

[Fr Pat]

     Here's a little information that might be helpful. While the doctors know that there are some forms of kidney disease that are inherited, they also suspect that there might be unknown genetic stuff in the genes that may make a person more prone to kidney disease. I saw a big follow-up study in Europe about the health of kidney donors years later. We donors do have a higher rate of some kidney and heart diseases than persons who passed similar tests but did not donate, but when they broke down the numbers further they found that those who donated to blood relatives had a higher rate of problems than those who donated to non-blood relatives. This caused the doctors to suspect that the blood relatives may have shared some unknown genetic propensity to the same  kidney disease that the recipient had. Not enough facts to make solid conclusions, but a spouse or a friend or non-blood relative MIGHT be a safer donor than a child/parent or sibling, because the non-blood relative MIGHT have less chance of sharing the same genetic weakness.
     Along the same lines, SOME doctors suspect that in some cases a "perfect match" might be a worse donor than a compatible but less-than perfect match. A "perfect match" gives the recipient the exact same sort of kidney as the one that failed, so maybe a slightly different kind of kidney might stand a better chance of survival.
     Anyway, who "should" donate can have lots of complicated reasons, including medical ones that are not yet understood by the doctors.
   Fr. Pat

[KristaRM]

Thank you all for the replies.  Having the "donor" perspective is different than everyone here that I speak with regarding this donation, so your input means the world to me. 

CK- I have thought the exact same thing- like it's just a no brainer wanting to be a donor.  As soon as my MIL told my husband and I about her illness the first words out of my mouth was that I'd be a donor.  Like you said, it's just logical.  Why not help someone in need when I can continue to live a normal life after the donation as well?  I know it's a personal choice that everyone must make for themselves and I really try to remind myself of that and let go of "resentment" I try not to have regarding the 80 other people they asked to be a potential donor, but it's hard sometimes. 

Chopsticks- you have given your wife an AMAZING gift and it makes my heart happy to know you had a successful outcome!    I pray for a fast recovery for both you and your wife.  And YES- I 100% feel as if I've been labeled "the donor".  I know my hubby breathed a sigh of relief that he didn't have to attempt to be a donor since I was, and I know that was a common thought with a couple of relatives.  His 27 year old brother's kidney is probably in pretty poor shape given what he's put the poor thing through anyway... ha!

Pat- That's really something I never thought about but is a really great point. I may read into that a bit more due to curiosity!


Thank you all again for taking the time to reply- through this forum and the FB page I'm really receiving some needed insight and support.  <3