Hard to know how to feel

[MooseMom]

I got a call from the tx coordinator this evening about the possibility for a kidney.  I've been on the list for 18 months, and this is the fourth call I've received.  I am on the ECD waiting list, too, hence the number of calls.  I've had two calls (including the one tonight) that were categorized as "high risk" and two that were "regular" ECD, if that makes any sense.

I don't like getting these calls.  They make me feel bad.  Yes, I will probably take my name off the ECD list (it seemed to be a good idea at the time), but I'm on the list to get a kidney, and that means someone else has to die, and I don't think my brain had really let itself go there until tonight.

The potential donor was a 24 year old woman; she was a high risk donor because she had a history of IV drug use.  She had also had juvenile hypertension since the age of 4.  Not only that, but her creatinine was elevated.  I turned down the kidney as I am not that desperate, but it left me feeling terrible for her.  I said to the coordinator that it must be hard for her family, and then I wondered if she even HAD family that cared about her.

I had a call last year about a kidney from a donor who was only 60 years old; she had fallen and hit her head, and it had killed her.  I had another call about a donor who died from a drug overdose; she had been bi-polar.  She had suffered AKI and the surgeon said that that he expected the kidneys to work again once transplanted (didn't sound promising...).  I wondered if she had perhaps committed suicide because of her mental illness.

I so profoundly hate being in this position.  Like I said, I really had not let myself think about it too much, but I can't avoid it anymore.  I know all the spin, but at this moment in time, it doesn't make me feel better.

I don't expect anyone to offer anything by way of advice or solace, but I just wanted to, well, I dunno...maybe just talk about these people so that their existence is documented here.

 
Thanks for listening.

[okarol]

I don't think of it as "someone has to die" - it sounds as though their life is being sacrificed so that you can live.
The fact is, people die every day, and it is sad and awful and most of us don't have to think about it unless it's someone we know.
If my body can serve some use after I am done with it, I say hallelujah! I cannot think of a bigger waste than not recycling my body parts, if they are useful to someone.
I agree, however, that they ECD cases are hard to take, and maybe taking a break from that option would be a good thing.
I hope you get a call that leads to your miracle. And I think the family who says yes to donating their loved ones kidney will have some peace knowing that the death resulted in some good.
 

[MooseMom]

I know you're right, Okarol, and I tell myself these same things because I know they are true.  But I still feel sad about it, you know?  24 is too young to die.

[ToddB0130]

MooseMom --- I totally get how you're feeling and I have that feeling often too (even more so about a potential living donor and what that sacrifice might mean to the rest of their life, etc)

Without even thinking about the organ donation part of the equation, so many deaths are just tragic (whether a younger person or someone who passed in some type of accident).  I feel the same sometimes when I read introductions of new members to this board and see people in their early years going through dialysis, etc.  Just makes me very sad.

Do you have a Gift of Life organization near you ?  If so,  it might help to attend one of their meetings and meet up with family members of donors,  as well as recipients.   A woman who works for me lost her 30 year old daughter and they decided to donate her organs.   She finds a lot of solace in knowing that so many other people have been helped from this decision and she has maintained contact with a number of donors as well.  She's very active in that organization and meeting other families and recipients has been very good for her.

It can seem kind of 'morbid',  I guess ... but truthfully,  as with living donors .... lots of people make the choice to become donors "if something should happen to them" and some families feel it's a way to not only help others, but keep their loved one "alive" in a sense.  For those of us in need,  it's a good thing and I try to be more grateful that there are people willing to donate.  You're right to feel mournful about the circumstances that create the opportunity to receive the gift though .... totally understandable.

As okarol indicated,  maybe getting of the ECD list for now might be better for you for awhile.   By the way,  FOUR calls after 18 months on the list ?  Wow.  I'm soory they 'haven't been the right ones' ....but your time is definitely coming.   I really do hope your gift arrives before you need to start D.  That would be so awesome !!

[jeannea]

I don't know. It's tough. For me, it's not so much knowing that someone died. It's trying to figure out what the right decision is: should I take this kidney? If it makes you feel too bad, you can ask for no ECD calls but it doesn't stop all the high risk calls. But none of these people died because of anything you did. If you benefit that's ok.

[Chris]

Moosemom, at the end of March the NKF of Illinois is holding their Transplant seminars for pre and post patients. You can talk to others who maybe in your situation,on dialysis, who have had a transplant, and doctors. At the end of the seminars (4 multiple choice ones to choosae), there is a 30 min question and answer with a transplant doctor, nurse, coordinator. There are also boths from vendors, organizations, and various transplant clinics (good for comparing and asking questions). I was sent an email by the NKF when and where it is if you are interested in going.

[/t][/t] Save the Date for Living With Transplantation Saturday, March 31, 2012 8 a.m. - 4 p.m. Marriott Chicago O'Hare 8535 W. Higgins Rd. Chicago, IL 60631 Keynote Speaker: Rich RamirezStand-Up Comedian & Liver Recipient Transplant candidates, recipients, donors, chronic kidney disease patients and their caregivers are encouraged to attend this annual educational program. Come meet other patients, network with professionals from the transplant and dialysis fields and receive up-to-date information from experts on topics like: Insurance Issues and Transplant How to Get Listed for a Transplant Treatment Options for Chronic Kidney Disease Get Fit! Medications Update The cost to attend is $10, which includes parking, continental breakfast, sit-down lunch and all program materials. Registration information to follow soon. In the meantime, please contact Jessica MacLean at (312) 321-1500 x226 with questions. [/t]

[MooseMom]

Chris, thanks so much for that!  I think I'll try to go.

[Mr. B 123]

MM,

My 23 year old nephew died 2 years ago from head injuries he received from a bad car accident, while it was very hard for the family, he decided to donate his organs.  This was the one bright spot in what was a horrible week for the family, the fact that his organs helped over 20 people continue on with their lives.  Out of death comes life, treat it as a gift from God.

[janetetal]

What's ECD?

Thanks

Take care

Deb

[Chris]

Janetetal :Extended Criteria Donor
 
MooseMom, no problem.

[RichardMEL]

I used to feel bad regarding someone passing away to (potentially) give me an organ. Like karol says though it's not quite the right way to look at it. I had to turn that one around to remind myself that this GENEROUS person and family decided to "pay it forward" if you will, and make the choice to donate. That is a wonderful gift!!! It's not like ANYONE has wanted anyone to die, or that I have had anything to do with it, but they made the choice that if they could help others they would. How could I deny such a selfless gift to people they wouldn't know. When that call came for me sure, I felt sad that someone had passed, but sadly, that would be one of many that day, and one who decided to do something positive. Every day I have free of D thanks to this gift is so important to me, and I often think of that donor, whoever they were, and their family and friends.

And as I've related a few times, prior to surgery I was told the kidney may not be in great shape, so was "high risk" in its own way (and they wouldn't or couldn't tell me anything re HIV or CMV status or anything so all those "questions to ask" became kind of useless ). So I had to make a choice while lying there outside the OR as to what to do. I had to wind up trusting the tx team to make the right choices for me. And so far, a year later, they have

The  other thing I felt bad about when I was waiting for a tx was the split second after hearing about a big accident or something - when I would instantly wonder if there would be any donors from the incident. The worst time was when I was sitting in D and there was a horrible train crash and I think 17 or 18 people died in it. My first thought was "wow there could be a few donors.." and then instantly felt absolutely selfish and horrible (and let's face it, the chances of any body in such a situation being in a state to donate would be small) but I felt so bad about that. I know it's a normal reaction but I know I felt wretched for think of myself ahead of all those peoor people and their families/friends etc.

Your feelings are quite normal MM and perhaps removing yourself from the ECD list is a good idea. I can understand why you said yes in the first  instance - it would seem like a good idea for sure. It's a tough call because there could be a borderline kidney that you may feel it is worth taking the chance on.

Hang in there.

[MooseMom]

Thanks for that, Richard.  I appreciate your reply.

Since I am on the ECD list, whenever I have received a call, the coordinator has given me a great deal of information about the donor so that I can make an informed decision.  I wouldn't have it any other way, and I am grateful for all of the information that is presented.  At the same time, I probably know more about these potential donors than I would if these donors were "standard" donors.  You want lots of information, but the downside is that you get a better idea of who these people were when they were alive.  Sorry...it's late, and I may not be making too much sense.

I am currently being evaluated for the list up in Wisconsin as my neph recommended I be double listed.  It so happens that where I live, it is just as easy for me to get to Wisconsin (probably easier) than to get into Greater Chicago, so for me, this makes sense.  I am about to send all of my test results to their coordinator, and if I don't have to have any further testing, I still have to travel there to be interviewed by everybody they can round up, it seems!  lol.  If they accept me onto their list, I will then remove myself from the ECD list, but until then (and in case for some reason they reject me), I'll stay on it for now.  But yes, I do think I should remove my name as soon as I am comfortable doing so.

Whenever I see people riding their motorcycles without wearing a helmet, I think "organ donor".  Is that naughty?

[rsudock]

Every December 7th I think about a family out there who is missing a family member...can't help it......   I just honor their life by living well and giving back to humanity in someway....

xo,
R