Happy Valentine's Day. instead of chocolates this year please give me a kidney.

[Naynay99]

Hey.  So I just had my transplant evaluation meeting.   They are supposed to contact me to say whether or not I am a good candidate.    The doctor pretty much implied I should be, but I am not sure if they are supposed to call me or mail me shat or what.  I'm sure they told me but by the end things were a bit overwhelming and I'm not sure.  I guess I will wait a few days and see.   Hmm, it's only been 2 days and I'm freaking out-- this doesn't bode well for my ability to wait 5-7 years if I do get listed!!!

So I was talking to my ex and saying how it would be cool if they sold anatomically correct human heart shaped boss of chocolates for Valentine's Day for us science geeks.   I think I may have to invent this- I would totally buy it,   I could even make kidney shaped boxes for us folks!   "Be my nephron" conversation hearts are soon to follow...  Haha. 

Anyway speaking of V day, I need to call my mom and wish her a happy Valentine's Day.  I also need to update her on what is going on with me but II am avoiding it.  "Happy V day.  Oh and by the way, my kidney is failing.  What's new with you?" doesn't seem like a very pleasant phone conversation to have.  How do you tell people?  Even telling friends and coworkers feels awkward and impossible to bring up.  My doctor said I should tell everyone bc you never know whho might end up being s possible donor.  But I am a very private person and the idea of people knowing about my personal health issues is my worst nightmare.  I can't handle that pitiful LOOK people give you when they ask "how are you?" and say trite things about how I can call them ANYTIME (between the hours of 7 pm & 8 pm) and how they will pray for me.   

I know it's inevitable that I need to drop the kidney bomb.  I just don't want to hear my mom with that sad worried voice. She left a message about making plans for this summer at my brothers lake house and I don't know if I will have to be on dialysis by then so I'm afraid to make plans.   Idk.  I am not sure that I can do any of this.  My biggest motivation for not completely giving up right now is to spite the universe.  I need to change my mindset.  I think I'm totally overwhelmed and if i stop and really think about it all too,much I am going to completely fall apart and not be able to be put back together again.   
Sorry this is all over the place.  I think I am just venting.  Take care.  In my mind I am sending you all kidney shaped Valentine boxes. 

[MooseMom]

I got a very official looking letter telling me that I was officially put on the list.  For something that important, you will get something in writing.  It's almost like a legal document.

As for telling people what's going on with you, it is my very humble opinion that you don't have to tell anyone anything.  You are under no obligation.  If your worst nightmare is having people know that your kidney is not doing so well, then don't tell them.  Life is very tough for you right now, and by what you've told us, telling others will just add to your burden.  You don't need that.

Perhaps as time goes by, you will become more comfortable with the idea of letting them know.  But, maybe not.

I have one suggestion, though.  Once it becomes clear that you've been officially listed, the next time someone asks you how you are doing, you can couch it all in more positive terms, like, "I'm really excited because since my kidney is starting to show signs of wear and tear, I've been through all of the testing and have been placed on the transplant list!!!!!  YaYYYYYYYY!!!!!!!, and so forth.  That way, you've given people "permission" to be happy for you and have given them a way out of feeling pity.  Does that make sense?  Then you would have killed two birds with one kidney stone.

Could you possibly contact your tx center and say something like, "I was a bit overwhelmed the other day and am not sure I understood what I was told about my status.  Could you explain it to me, please?"  That way you wouldn't have to spend the next few weeks waiting for someone to call you.

 

[Charlie B53]

MM always has good ideas/suggestions.

On the other hand, you could wear a T-Shirt like that guy did at Disney World telling his blood type and that he needed a kidney.

And it worked!  Someone saw it and responded.  After that bit in the news I quit paying attention so I don't know if it is done yet or not.  The thing is we see news items all the time of unique methods people have used asking the public to donate them a kidney.  Again just the other day a Mother posted a notice in Facebook that her Son needed a kidney.  Again, a number of people responded, and he is getting one.

It is hard to predict peoples behavior unless you know them.  I could never walk up to people on the street and ask for a kidney, but a billboard could be a possibility.  Enough people drive by, someone could decide to donate.  Stranger things have happened.

Now you got me wondering, just how much does it cost for a billboard?

[Simon Dog]

I got a very official looking letter telling me that I was officially put on the list

I have gone on "inactive status" twice since being listed.   Each time I went back on the list, I got a new letter.

[Paul]

I found out before one Christmas that my kidney was 4F, so I waited until after Christmas was well and truly over before telling anyone, to avoid spoiling the holiday for them. The result was that several people were hurt and upset because I had not told them immediately. I would advise you to tell your close family ASP, and when anything changes (good or bad) hit the phone as soon as you can.

And I'm afraid I disagree with MooseMom when she said "As for telling people what's going on with you, it is my very humble opinion that you don't have to tell anyone anything." Have you any idea how much your parents have invested in your life so far? To keep important things like this from them is so wrong. And if you are lucky the same thing goes for your siblings, grandparents, and various aunts and uncles. All will (should) have helped you through your childhood, and your youth, possibly beyond. You owe them the truth.

Beyond that - think how hurt they will be when they finally find out. And they will find out, unless you emigrate and never see them again. Do you think they won't wonder why you try to stick to the shade, wear a hat on sunny days, keep taking pills whenever that alarm in your pocket bleeps, etc.?

And on a more selfish note, you will need their help and understanding. They cannot help if you don't tell them. And after they find out, if it is a while from now, they may still be pissed off with you for not telling them, and refuse to help.

Plus, one of them may have a spare kidney you can have!

[Naynay99]

Hey. Thanks everyone for your different viewpoints.  Some food for thought. I am sill getting testing done before my txt center twill approve me, have a few more things to get done.  As for telling people, I did tell my family.  Well I talked to my mom anyway,  who then proceeded to tell everyone! Like I knew she would.   

I'm not ready to tell coworrkers or anyone else but my closest friends, though.  I think I will soon but I am not yet.  My sister who is the complete opposite of me said to tell everyone I meet.  I could never do that, just the idea of asking for a kidney is so huge and puts someone on the spot which would be too awkward and if it was somebody close and I didn't get the response I wanted i would feel hurt, even tho I know it's not something everyone can do even if they care a lot about you. 

Anywayy, on a totally shocking front, my mom said my brother asked about donating!!!  We are not all that close and I know he never offered when my sister got sick (she did get a to quick but still.,,).  My mom said he was shocked at the 5-7 year average wait time here and that he was the one who brought up the idea of getting tested to be a donor, which is a relief bc I was worried she may have tried to orchestrate this.   I know that I should not get my hopes up, lots could happen that would end with this not working out.   Still, it is giving me a shred of hope which I sorely need right now.   So now I have to call him.  I don't know what to say.  How do you thank someone for offering you an internal organ?  I feel like it's too big of an ask.  Idk.  Wish me luck! 

[Charlie B53]

How do you Thank Him?

Start by telling him how much you greatly appreciate his offer to donate.  But beware of the testing involved there is a great possibility of a mis-match, but if he would still be willing to donate that could very well increase your chances of obtaining a kidney from a donor pool.

This could be a huge opportunity for you to return to a somewhat 'Normal' life, you will always be Grateful for his donation.

Print this and memorize it if you need to.