kids and transplant - yes, it's long

[cariad]

OK, well, since I'm not feeling too well right now and trying to take it easy, I thought I would ask for input on one of the big issues that has been hanging over our heads for a while now.

Assuming my husband is deemed fit to be a donor, and I pass my last two tests (which I will) then I will supposedly be getting a transplant in September. It will be a clinical trial, the only type of transplant I am willing to get in this country, and it was a battle to be admitted into this study. (I do not qualify. For reasons that I can only guess, the surgeon is going far out of his way to make an exception for me.) For this clinical trial, I need a live donor. My husband is really my only option for this.

We have two children. When my husband and I first started investigating donation, five years ago, I told my GP that I wanted to get my son tested for any kidney issues. He told me that by all means I should do this, but that what I had was not genetic. At the time, we only had one child. We tested our son, and they found something. Not what I had - they tested very specifically for that - but a kidney fusion issue that has a reasonable chance of never bothering him. He saw both a urologist and a nephrologist and both said there was no clear indication of any problem, but enough reason to continue to monitor him. This was four years ago and we have not had it checked out since. My cynical side tells me that anytime you put someone with good insurance in the hands of hospital doctors, they will find a way to keep you coming back indefinitely, so I have been wary of over-testing my son. Like most kids, he dreads doctor visits and needles.

I have not asked, but as far as I know, our son could never be a donor. I do not say that for myself, but for his brother that was born a few years later. We have no reason to believe our younger son has kidney issues, but we have not put him through any of the tests. Our younger son has a strong personality. Strong. He has none of the politeness that our older son seems to have been born with, which means for doctors that he will kick and bite and scream without the least hesitation. He is getting better about this as he ages, of course, but we don't have the luxury of time right now.

The questions we are pondering are: do we go through the emotional turmoil of having our younger son tested for kidney issues? The tests for my older son involved a blood draw, ultrasound, and CAT scan. Should we have our older son monitored again, to see if there are any signs of deterioration? What do we do with this information if they do come back with something that is cause for concern? Do I cancel the transplant and wait for them to offer a similar trial with cadaver donation? Right now, we are making a choice by ignoring the situation, but if we are going to do nothing, I would rather be able to say to my kids that we made this choice deliberately and not by laissez-faire.

If anyone has been in similar circumstances, or just wants to offer an opinion, I would really appreciate it. 

[willowtreewren]

Cariad,
My daughter has the same kidney disease as her father. And although our situation is not quite the same, here is what my thought processes have been:

1. My husband needs a kidney NOW. My daughter doesn't.
2. There will continue to be improvements (one hopes) in treatment for kidney failure.
3. There is no guarantee that my kidney would work for my daughter.

It is good that you are thinking about your sons, but you are the one who needs that kidney now. And don't your sons need you?

Aleta

[lola]

I am in kinda the same boat, but my husband needs the kidney. We were to join the paired exchange program to better his chances, he has 100% pra, well the week b-4 our daughter's labs showed increase levels and now we have to increase her meds. My husband was never on the boat for me giving up a kidney but he really had no say since it's my kidney, but after seeing her labs and knowing what we know we will just continue to pray for the best and leave my kidney alone for now

[cariad]

Aaghh, I forgot about this post somehow! 

Thank you both for the replies. I am sorry you are both in these situations!

We have decided to get our younger child tested. I just don't think I could live with myself if something were to go wrong, and we had to tell him that we tested his brother but did not check that he was stable. I talked to our gp's office yesterday and they said they are working on getting him an appointment for an ultrasound. As for my older son, I think we will just hope for the best. As you said, Aleta, the kids need their parents now, and my son may never have problems, or they could develop forty years from now. We have to deal with our current issues.

Thanks for the input! It feels better just knowing we have a plan. These can be such upsetting and confusing situations!

I am hoping that all works out for both of your families.

[okarol]

When Jenna was first diagnosed I was told it was NOT PKD, which is what my dad died from, and my sisters and brothers inherited. I didn't know if I had PKD, and had never been tested because we were concerned about long term insurability. I had always monitored my blood pressure, but had been told by a doctor friend that beyond that, there was no cure for PKD if I had it.
When it turned out Jenna's kidney failure was due to a bad bladder, we thought maybe we should get our other kids checked. The pediatrician and the nephrologist said that it was unlikely that the same thing would happen to one of Jenna's 3 younger siblings. But, since there is something you can do about the bladder, we had each of their creatinine checked. All came back fine.
So my point is -- if having the information would change or improve a course of treatment - then it might be a good idea.

[Romona]

I have asked so many people about my kids. All of them told me that they would show signs by now. I was diagnosed with FSGS. One of my daughters had kidney reflux that was treated with preventative antibiotics and resolved on it's own as she got older. No one knows if her problem and mine are related.

[MandaMe1986]

First let me ask you how old are your kids?  Cause that changes everything. I have been sick sense I was 14 going on 15.  Went throu my first round of Chemo when I was 16.  Even though going throu all of that stuff at that age was hard. I knew even then that I didn't want a living donor.  So I don't' think it is fair for you to assume that your son would take it if anything ever happend.  I just think that kind of decision should be left up to your children. And I agree if you need it now then you take it, especially if you are willing to take it.  Cause there is no telling how your children are going to feel about it.

[cariad]

Thanks for the replies!

I have scheduled an appointment for an ultrasound for my younger son at the local hospital for next Monday. I am getting worried, because every night recently he has been saying his stomach hurts. I just don't want them to find anythng.

Okarol and Romona, I am glad that things seem to be working out for your children. May it always continue....

Manda, my kids are 3 and 6. I don't think I would use the word "fair" in this instance. I think I understand what you are saying, but if my husband gives me a kidney and then one of my children needs it, then they have no choice to make, so that does not sound fair to me, either.

And they would take the donor kidney, because I am their mother. All they know about dialysis and transplant they know from me. You would have to be positively suicidal to know me, be a child in kidney failure, and not take the offer of a living donor. Kids do not do well on dialysis. It affects their growth. When I was first in hospital, there was a 3 year old who looked like she was barely 6 months - she used to freak people out by speaking in complete sentences even though she looked like an infant. There were kids 2 and 3 years older than I who were much, much shorter than I was. It was baaaad. I lost so much weight that my parents took me to the candy aisle one day and told me to point to any candy I liked. We filled an entire shopping trolley with bags of candy. It sat by my bedside, untouched, until it was thrown away at discharge.

Then there was the raging thirst. I have flashbacks to this day of being home with a fever, ringing a stupid bell, and having my mother walk in with a dixie cup with a few drops of clear soda at the bottom. I threw up every day on dialysis. I had a rash all over my body at one point and had to lie still on dialysis all the same. When I had a rejection episode 6 months after my transplant, I returned to the hospital. I thought I was returning to all of the fluid restrictions and dialysis again. So, I went out to the patio seven floors up, in the midwest, in November, wearing my hospital gown and robe and nothing else. I climbed onto the wall and paced back and forth, refusing to get down for all of the screaming and chaos that followed. (Suicidal ideation in children is very rare, but this is an absolutely textbook example of how a child displays those feelings when they arise.) So, while I agree with you that older children should have a say in their care, I would consider myself a negligent mother if I did not implore them with everything I have to accept a transplant, and I would be devastated if I had no transplant to offer.

Sorry, I am not meaning to take this out on you - this post is bringing up bad memories for me  and I should probably leave it alone now.

[MandaMe1986]

I feel for you, and fully understand. Just didn't know how old they were.

[cariad]

Thank you, MandaMe.