So confused

[jeannea]

I got my second call tonight for a kidney. She started out by saying I was primary on this kidney. Only I wasn't. The first person had turned it down. I ended up turning it down too. It was high risk. I don't want to list the reasons it was high risk but it was. The whole thing is so confusing. I want a transplant, I had one before. But every time they call I get this nauseated feeling and I get so confused. I got myself ready to wait 2 years like they said and now it seems like I'm closer to the top of the list than that. I hated having to make the decision tonight so fast. I would have taken time to think about it and weigh my options but you have to decide right then. And I just have never thought about taking a high risk kidney and what that means for me so I said no. And I don't know if I did the right thing or not. I know that turning it down doesn't affect my place on the list or anything. But I still feel ill about the whole thing. I think I'll go to bed and sleep for a long time. Except that Baxter will call in the morning because I need to do my order.

[okarol]

It seems natural to have remorse when giving up a potential kidney, even though it was more risk than you're willing to take.
We were asked at the evaluation if Jenna was willing to take ECD kidney, and we said no, so those calls would never have come to her.
 

[ToddB0130]

Sorry you had to go through that.  It must be torture to have the option presented to you and to have to make the decision really quickly.  It's good to know you *are* getting the calls though to have the option.  Your ideal kidney is on its way !!  Best of luck to you.

[Chris]

I would ask them if they have the option to not be called/ concidered if a donor is high risk. I was asked if I wanted to be considered for a high risk donor when I decided to go with the transplant centers I had choosen. A simple inquiry can save you torment later.
 
Don't stress yourself over the decision you made. You made the correct one that best suits you, not them. Your health comes first present and future.

[RichardMEL]

your gut instinct on the high risk kidney is probably a good one in the end, as difficult as it is for you. I would agree that maybe asking to not be called for those kinds of kidneys would be easier on you? it really IS a difficult one. I can't imagine how you feel right now....

[MooseMom]

Oh dear jeannea, this happened to me, too.  I had been on the list for only 2 months.  My mother had just died and I had just returned home from her funeral.  My husband and I were driving out of our driveway for a well needed break in Michigan when my cell rang, and it was the coordinator with an offer of a high risk kidney.  The donor was a 40 year old man who had died in an accident.  What made him high risk was the fact that he was living with his HIV positive girlfriend.  They had practiced safe sex and he had been tested every six weeks.  However, it takes two weeks for results to come back.  This donor had just been tested but the results had not been yet made available, so no one could guarantee he was HIV negative.  I had to make a decision right then and there, and since I am not yet on dialysis, I said no.

I think my tx center makes a distinction between a high risk kidney and an ECD kidney.  I'm sure I got a call about the high risk kidney only because I had agreed to consider ECD kidneys.  My coordinator said that when there is a high risk kidney, the usual rules re waiting time are abandoned and she could offer the kidney to anyone she wanted.  I thought that was interesting.

I have received two calls for an ECD kidney, but I wasn't first in line, so they went to other people.  I happened to be in LV at the IHD meetup, so there was no way I could get back to Chicago in time, anyway.  Everyone asked me if I was upset about this, but I was not.  I am not a creature of faith, but when it comes to getting a kidney, for whatever reason, I just feel that what will be, will be.  Perhaps since it is all so out of my own control, I can't afford to obsess about it.

I do realize, though, that once I actually start dialysis, I may have a very different view on this.

If you are uncertain, then saying no was probably your right choice.

[RichardMEL]

agree with MM's last statement.

Incidently I should point out, just to confuse things, with my tx I was told as I was preparing for it that they were not sure what condition it was in and it may not be very good. I asked as many q's as I remmbered if they knew it's CMV status, or drug use of the donor, or HIV+ status etc... not much they could or would tell me... I got the impression that it was an accident vistim of some sort. Anyway they basically put me on the spot a bit as I was waiting outside the OR. Did I want to do it? They said they'd put me under and finally look at it before THEY made a final decision, but given what they'd told me did *I* want to given what I knew so far. I really felt I had to trust their judgement on the kidney when they saw it...  so yeah I did wonder what I might be getting, but when I woke up the surgeon said he looked at it when it came in and it was in a really good shape, and well... a year later so far so good for me and Danny.

I do realise that this is slightly different situation since you clearly had more understanding of the high risk factors that helped your decision making process. I again say if at all having some doubt trusting your gut instinct was probably the right way to go.

i took a bit of a gamble, and so far it's paid off. Your situation was different and you made a choice. It doesn't mean it was right, or wrong.. a choice... all i can offer is that if you are comfortable with the decision you made, and I agree saying no when you're unsure, concerned about the risk factors etc, and given the first person had also turned it down shows you're not the only one with misgivings, then while it may be difficult to swallow and be easily comfortable with the choice... it was probably the best one for you.

A much better match will come your way - I am certain of it!

[big777bill]

 I'm still fairly new to CKD and don't know all of the terminology. What do you all mean by ECD kidney?

[big777bill]

  Got it  expanded criteria donors   

[willowtreewren]

Jeannea, I understand how this would be upsetting, but you have had some excellent advice. Don't try to second-guess your gut reaction. You'll just make yourself crazy....

Instead, recognize that you are in line for another call soon and you will be able to get a kidney that is the right match for YOU, with no second-guessing!

 

[jeannea]

Thanks for all the advice. I'm definitely not supposed to get ECD but apparently high risk is different. I think I did the right thing.

[jbeany]

  Got it  expanded criteria donors   

for big bill and any one else confused...

ECD are kidneys from those in older ages groups, at least usually.  Sometimes the donor may have suffered from other medical conditions, or been subjected to something that may effect the general strength of the kidney.  From what my docs told me, they are usually not expected to last as long as a kidney from a younger, healthier donor.  These are great choices if you are not doing well on dialysis, as even half of the statistically expected 10 years off D is better than staying on it if it's not working well for you.

High risk kidneys usually come from those with a history of drug use or other things that may have exposed them to diseases that may transmit to the recipient, and that may be hard to test for accurately.  If they managed to avoid the risks that came with the drug use, such as HIV or HEP, then you may be getting a perfectly healthy kidney from a young donor.  Or, you might be getting another problem just as serious as CKD.  It's a gamble you have to decide for yourself.

[big777bill]

 jbeany