Looking for info on kidney failure / transplant/ etc

[AquariusHome]

We're still years away (hopefully) from this, so I haven't had a detailed conversation with the docs about these issues but have questions for anyone who happens to have been through it or know. I'm looking for general info on how the process goes so feel free to tell me more than just the questions listed below...

Things like what ages are easiest to transplant from a medical perspective? I have heard that babies over age 1 can receive an adult's kidney - is that true? What are the best ages for a donor to be? How difficult is it to find a match? In our situation we have me and DH and 2 other kids with no known kidney issues and then extended family. It seems to me like someone would surely be a match but I really don't know anything about it. When does the process of looking for a donor begin? (i.e. is this something we should be talking about sooner rather than later if we see kidney function decreasing).

And then re: kidney failure - at what point do they tend to start dialysis? Is there a need to be on dialysis for some period of time prior to a transplant if a donor has been identified?

Thanks in advance for any info.

[VillageMom6]

I've been looking into these questions, too. My newborn has Bilateral Grade 5 Vesicoureteral Reflux but so far he has good kidney function. In our case the pediatric urologist assures me that the likelihood of needing a kidney transplant is extremely small. But I like to be as informed about all potentials as possible.

The only question I can answer is that yes, an adult can be a donor for an infant. That's such a relief! I don't know how the matching process goes but I have heard that transplants "work better" with a living donor than a deceased one.

Best wishes to you! I'm sorry that you're facing these issues. ((Hugs))

[khaoskat]

Some experience from an adult perspective..

But, IMHO, if you know you will need a transplant in the future, I would potentially start looking now at family members or when you know 100% for sure. It can take a while to find a match, and then get the match healthy for the surgery (ie they have to be free of even the common cold) as well as the person receiving the transplant.

You will likely get transplant sooner if you have a private donor (ie family/friend/etc.) vs the transplant list.

My MIL went through several family/friend potential matches, but eventually ended up getting one from the general transplant list.

As for dalysis, it depends upon how much kidney function you have left. Once you get to a certain point you have, and I am not sure what that point is. MIL was on it for about 3-4 years before getting a transplant.

I would think it would be better to do it before you need dalysis, rather than after.

[anj_rn]

generally speaking it should go like this:

1. the doc tells you kidney function is deteriorating and estimates when the need for dialysis/transplant will start.

2. Any family who are willing to donate a kidney should be screened for a potnential match. Usually children will not be considered, but there are some situations where a surgeon will consider the donation of a kidney by a minor sibling, but only if they are convinced that the decision was made without coercion and the child understands what will be done and why (I have never seen a surgeon allow anyone younger that 13 donate. The 13 yr old donated to her twin after a bad rection to CT dye killed her kidneys). Minor siblings are considered donors of last resort after every other option has been exhausted.

3. Dialysis will be a must, but it does not have to be for long. Kidneys work 24/7 so you can not do the transplant fast enough once the kidneys fail. Also, transplants tend to be more successful if the patient dialyzes prior to and immediately after the transplant to decrease the work of the transplanted kidney.

4. Dialysis starts when the kidneys can not keep up. Sometimes children start dialysis while still having minimal kidney function.

I would ask for an appointment to discuss transplants & dialysis with the doctor. They can then provide you with enough time to ask all your questions and give you a roadmap for care.

[AquariusHome]

Thanks for the info everyone. Very helpful.

Like I mentioned earlier, I don't know when (or even for sure if) we will need to go this route, but I'm the kind of person who needs to have an idea of what is at the end of the road we're traveling, if that makes sense.

To give more info - DD (age 3) has multicystic dysplastic kidney which is non-functional and the other kidney has dual ureters but no reflux. At our last neph appt they discovered that the multicystic kidney disease has also affected her good kidney. Luckily the cysts in the good kidney are small enough that they were not detected on previous ultrasounds but have now grown to large enough to be seen. Our neph expects them to continue growing and eventually affect kidney function. I was too shocked by this turn of events to think about all these questions right there in the appt but now that some time has passed I'm considering what this means. But we believe that kidney failure is still quite a ways down the road and so it isn't necessary yet to call a special appointment to discuss it.

One decision that needs to be made soon though, has to do with giving growth hormone. DD has been on GH for about a year due to an basically unrelated growth disorder. Now that we know about the cysts in the good kidney I hesitate to continue the GH since GH does not discriminate about what in the body it accelerates the growth of. Our neph, when I asked this question via her nurse, responded that the cysts are going to grow regardless so we should continue the GH. But I'm not sure I'm comfortable with that. Unless, of course, the kidney failure/ transplant is a sure bet either way in which case we might as well help her be as tall as she can be. Her growth has not been super impressive on the GH anyway though.

Anyhow, probably far more complicated than anyone can offer an opinion on but if you happen to have personal or professional experience with a similar situation I would love to hear it.

[sarahtar]

Digging up an old thread here, but if the OP is still around, I'm wondering how your DD is doing? My son was born with CKD Stage 5 about a year ago. He has a displastic right kidney and his left kidney was damaged from reflux and a UPJ obstruction. He has just the tiniest smidge of kidney function remaining and we're starting transplant workup, anticipating that he will hit 10 kilos this spring and then we can proceed with the actual transplant. We're starting growth hormone as soon as we get insurance clearance. Would love to chat. It's been a hard road to travel, taking such a medical path when that's not our family's usual way.