The aftercare of living donors

[MooseMom]

I don't have a living donor, but I live in hope.  However, after reading Hemodoc's latest blog entry...

http://www.hemodoc.com/2012/01/-first-do-no-harm-the-living-renal-donor-dilemma-dr-brenda-maynes-story.html

I have some questions for those of you who have a transplant from a living donor.

Did your transplant coordinator ever share with you the same information that was given to your donor? 
Were you satisfied with the quality and quantity of the information given to your donor?
I know that there are issues of privacy, so this might be an unfair question, but were you given results from your donor's labwork?  For instance, were you informed of the results of any and all kidney function tests?
Did you know your donor's egfr before surgery?

After surgery...

Do you know your donor's egfr now?
Did your transplant coordinator ever discuss with you the aftercare your donor would be receiving, and for how long that care would continue?
Are you satisified with said aftercare?
Is your donor satisfied with said aftercare?
Does your donor have regular renal function tests more than a year AFTER donation?
If so, does your donor share those results with you?
Do you plan to discuss with your donor the need to have regular check ups as the years go by?
Do you anticipate keeping in touch with your donor on a long term basis so that you can ensure they are reminded of the need for regular check ups?
If not, do you think your donor or the donor's physician will keep close tabs on his/her renal function into the future?

Thanks so much for any replies!

[ToddB0130]

I'll be interested in hearing responses to this.  I have a young friend who has expressed interest in being a living donor and has filled out the form and been contacted to start his testing, etc.  At this point,  I am not involving myself  in any way with his process (particularly as I don't feel 100 % comfortable with it right now .... I'm talking to my psychologist about this currently).   I don't know if he'll really follow through with it (I know he doesn't need to be a match because my center does shared transplants),  but I'm not going to get invollved.

[KarenInWA]

Hi MooseMom! I'll answer what I can.

As you know, my donor is an older, non-blood-related relative (she married my dad's cousin 44 years ago).  She is amazingly healthy. Her numbers were never shared with me (probably a HIPPA-related thing), but I do know, from her, that her creatinine was 1.2 a couple of weeks after surgery.  I also know that her CMV status is negative, where mine is positive. That is a good thing for me!

Lynn will continue to do follow up with the hospital, starting at 12 days (already done), 3 mos, 6 mos, 9 mos, 1 yr, 2 yr, and 3 yr. I know that they went through all the possible complications with her, because she understood death was a slight risk. She looked at it as death is always a risk when you go in for surgery, no matter what kind it is. Then there is the reality that driving in your car is just as risky, if not more so, and we all do that every day!

My TC went over the same risks with me during my evaluation appointment. I knew going in that there is always a risk of rejection or other complications. But, that is true with other surgeries as well. It kind of goes with the territory, unfortunately.

No, Lynn's lab results were not shared with me. I had to trust my transplant team to make the best decision based on their knowledge and the results. In my case, there was some concern over Lynn's age vs my age. It was decided that it would be better to have me go through the transplant, given the waiting time for a cadaver kidney. There is also always a slight risk of infection with a cadaver kidney. Meaning, there is a 2 wk windo where HIV, Hep B and Hep C will not show up in a test. I don't think it happens often, but that risk is there.

No, they never discussed Lynn's after care with me, although I'm sure if I asked they would have told me something. I learned what I know from Lynn herself. She is satisfied with the after care, though. I did have one appointment where I brought up how well Lynn is doing post-op. She was told by them that she is doing a lot better than most of their donors who are in their 20's! I mentioned that to my surgeon, and he agreed that he heard that, too, about her. So I think that is what they do. They don't bring up anything about your donor unless you mention it first.

Yes, I will be keeping in touch with my donor 

KarenInWA

[MooseMom]

Thanks for that reply, Karen!  I am so glad that you both are doing so well, and that's good that she will be followed up for three years at least.  Is that pretty standard for a tx center...to check up on donors for three years?  After that, I assume she will have her renal function tested by her primary physician?

Yes, I'm sure HIPPA keeps you from having certain information about the renal status of a live donor.  I was curious, though.  Again, thanks for the reply.

[Poppylicious]

I know you aimed these questions at the recepient, but as Blokey doesn't come on here and I do, I thought I'd respond on his behalf.  Also, obviously with us being in England things might be different, and us being married probably makes it a tad easier too.  So in hindsight, any info I give may not be what you're looking for anyway ... (but I've already answered the questions so I'll just hit the 'post' button now ...)

Did your transplant coordinator ever share with you the same information that was given to your donor?
Blokey had access to all the information that I had access to.
Were you satisfied with the quality and quantity of the information given to your donor?
He was.  He knows that I had a lot of things drummed into me (risks, etc.) and knew that we could both contact the Living Donor Lady with any questions, at any time.
I know that there are issues of privacy, so this might be an unfair question, but were you given results from your donor's labwork?  For instance, were you informed of the results of any and all kidney function tests?
Only through me ... it's my understanding that he wasn't allowed to be told unless with my permission whilst I was present or if I told him.
Did you know your donor's egfr before surgery?
No, he didn't (although to be fair, I don't think I did either; I tend to gloss over numbers.) He does now though (due to us being together in the room when I had my six-week post-op clinic appointment.)

After surgery...

Do you know your donor's egfr now?
We know what it was on the day I was discharged (two days post-op.)  We haven't been told what it was at six-weeks post-op, but I don't suppose there's anything to stop me finding out ... I assume that if it was bad (*grin*) they would have contacted us.
Did your transplant coordinator ever discuss with you the aftercare your donor would be receiving, and for how long that care would continue?
We - together - met with the Living Donor Lady, the nephs and the surgeons, who all explained the aftercare I would receive.  We knew how long it would continue and we knew what to do if we felt something was wrong.
Are you satisified with said aftercare?
He is.
Is your donor satisfied with said aftercare?
I am.
Does your donor have regular renal function tests more than a year AFTER donation?
I'll have a (voluntary) annual appointment at the Renal Clinic, for life.
If so, does your donor share those results with you?
I plan on doing so.
Do you plan to discuss with your donor the need to have regular check ups as the years go by?
He won't need to ... I plan on going to every appointment.
Do you anticipate keeping in touch with your donor on a long term basis so that you can ensure they are reminded of the need for regular check ups?
I'm hoping that he plans to keep in touch with me.  It would be a bit mean to just sleep beside me in bed but ignore me, except to remind me that it's time for my annual check-up.

 

[MooseMom]

Thanks for the reply, Poppy.  Yes, I do hope your recipient plans to keep in touch with you.

May I ask you a hypothetical question?  I understand your answer to this may be different from that of someone else, but I'd be interested in your thoughts, anyway.

If you had been a living/altruistic donor for someone unrelated to you...maybe a co-worker, someone with whom you had no tight emotional bond...what would you like to see from that recipient?  What role do you think the recipient should play in your aftercare, if any?  Would you like it if s/he contacted you on a regular basis to see how you were doing?  Or would you feel that was intrusive?  Say, three or four years after donation, would you still want this person to be calling you to remind you to keep your appointments and check your renal function?  Would there be any point after which you'd like this person to just stop already?

I guess that was more than one hypothetical question....

[jeannea]

My original donor was my mother. So there were no secrets. This was before HIPPA. We just went to all appts together. I knew all her numbers and everything they told her. Now her current care is once a year her doctor does a blood test and looks at her creatinine. Her numbers are great.

[MooseMom]

My original donor was my mother. So there were no secrets. This was before HIPPA. We just went to all appts together. I knew all her numbers and everything they told her. Now her current care is once a year her doctor does a blood test and looks at her creatinine. Her numbers are great.

I can certainly see where there would be more opportunity and incentive if your living donor is your mom!  That's wonderful that her numbers are so good.  What a terrific thing for a mother and daughter to share!

[sparklelady]

Both my husband and my brother were matches for me. As they were testing, I got no information, however, both of them shared everything with me. My brother ended up being my donor, he is doing really well. The hospital will follow him for 3 years. Both of us are happy with care each of us got, both during and after transplant. We always share tests results, although mine are more frequent than his.
As far as my brother getting information before the transplant, he is very anal ( he's the CEO of an international company) so he researched everything and asked many questions. He was well prepared and understood what he was getting into. My husband was well aware of what he could've gotten into.

[Poppylicious]

May I ask you a hypothetical question?  I understand your answer to this may be different from that of someone else, but I'd be interested in your thoughts, anyway.

If you had been a living/altruistic donor for someone unrelated to you...maybe a co-worker, someone with whom you had no tight emotional bond...what would you like to see from that recipient?  What role do you think the recipient should play in your aftercare, if any?  Would you like it if s/he contacted you on a regular basis to see how you were doing?  Or would you feel that was intrusive?  Say, three or four years after donation, would you still want this person to be calling you to remind you to keep your appointments and check your renal function?  Would there be any point after which you'd like this person to just stop already?

I guess that was more than one hypothetical question....

I don't think I'd *expect* the recepient to have any role in my aftercare.  To be honest I don't actually expect Blokey to have any role in my aftercare ... it just happens that he does because he can't escape me!  I'd like to think that a recepient with whom I'd had no tight emotional bond would want to keep in touch and touch base on the kidney stuff once in a while, but I wouldn't want them to worry about my own (future) kidney function just because they feel they have to ... or indeed, I wouldn't want them to have to think about me at all in regards my renal capabilities.  After all, if I'm able to go through the process of donating a kidney, with all the testing and provoking thoughts and pain and frustration which that entails, then I'm perfectly able to make the decision of whether to attend future appointments and have my renal function tested.  However, if they were the sort who wanted to remind me then I wouldn't feel it to be intrusive; I'd probably feel quite flattered that they cared enough (which might sound odd, bearing in mind what I would have done for them, but my mind can be a trifle weird sometimes.)  Obviously if they were pestering me daily I might have to say something though ...

 

(But it is all hypothetical, because it will now never happen.  I *think* the above is true, based on my personality and how I am with Blokey.)