Hello from father of 9 year old with ESRD

[PaulBC]

I may share more later, but this is my introductory post. Last Fall, my previously healthy daughter was diagnosed with kidney failure, based on a blood test, after about a week of just feeling blah and showing edema (which we failed to notice until shortly before taking her to the doctor).

This was a total shock. She had been busy with 4th grade, swimming 5 days a week, and doing other activities. We had imagined that she had just come down with a virus (but no fever), and the pediatrician thought so too until she had a urine test.

Anyway, a biopsy showed extensive scarring, eventually attributed to C3 glomerulonephritis. The doctors tried a steroid pulse, but eventually were convinced (and convinced us) that she is in ESRD. My daughter has been on dialysis since then, recently switching to peritoneal dialysis. We're fortunate enough to live very close to one the best pediatric hospitals in the country (other families come in from other states). The nephrology team has been amazing. I can't say I hate dialysis, since the pediatric dialysis staff has been so nice to us, but I understand where that is coming from.

My daughter has been the very definition of trouper about the whole thing. I hope she can keep up her strength. I am particularly interesting in finding out more about the experience of those diagnosed with ESRD in childhood. Of course, a transplant is the next step, but she has got a long future ahead of her, much longer than the lifetime of an allograft.

I have also developed a new hobby of researching anything I can about advances in renal replacement. Some of it (growing a new kidney in the lab) may look like science fiction today, but I hope something better will be available when my daughter is 29.

[justagirl2325]

Wow that's young, I know when I go to centers with my husband he's by far the youngest in the room and he's 42.  I'm just new to this as well as he just started 6 months ago and doing the same thing as you researching and reading everything.   

Wishing your daughter a very speedy route to transplant.

[PaulBC]

Yep, it's young. I always knew her immune system was working hard, the way she bounced right back from any illness. I didn't know it was working overtime destroying her kidneys. It's rare for this condition to happen at all, and very rare for it to progress this fast.

Wishing you and your husband the best. If he (or anyone) wants to compare notes on research advances, I'd like to hear about it. I can accept that my daughter has a tough road ahead, but I still want to believe that it will eventually end up with a real cure, even it that is decades away.

[Rerun]

Hi Paul and welcome to IHD.  Do you have other children?  Just curious if this condition is hereditary.  Do you live in Canada?  BC?

I first started dialysis when I was 24 and I thought that was young.  Now I'm 53.  I hope your daughter gets a good matching transplant.  That will make her feel more normal.  I too hope they figure a way to make our own kidneys in the future. 

Stay tuned to this site.  In the news articles section we get lots of updated information.

Rerun, Admin.       

[okarol]

  Hi Paul,
Welcome to IHD. I am sorry for what your daughter and family is experiencing, it can all be so scary and challenging.
Our daughter Jenna was diagnosed with ESRD at 15 years old and started dialysis at 18 (during her senior year of high school.)
It was a shock because she was the healthiest of our 4 kids, never missed school and the silent damage was done before we knew it.
She had a transplant at 21 and now at 29 she is back on dialysis and the wait list too.
The whole experience has been hard on her, but she is doing manual PD and is as healthy as she can be, considering.
I cannot imagine how hard it is to have your daughter start so young, and I wish you all the best.
You may want to learn more about our friend Lori Hartwell. She was on dialysis for 12 years; had ESRD at 2 years of age, a failed transplant at 3 yrs old and again at 9 yrs old. Finally at 19 she got her 3rd transplant and it lasted 20 years. Three years ago she got her 4th transplant and is doing great! She is an inspiration to many people - here's a link to read more about her http://www.rsnhope.org/about-the-founder/
What do the doctor's say about your daughter eligibility for a transplant? Will this disease damage a new kidney? Is she on the wait list?
Sending you lots of {{BIG HUGS}} and best wishes! If you're on facebook you can stop by and say hello on Jenna's donor search page www.facebook.com/wantedkidneydonor
Take care!
Karol
 

[PaulBC]

Thanks for the comments. To answer a couple of questions, the condition doesn't seem to be hereditary. There is no family history of kidney problems. She has one older sibling and his blood tests were fine. They are doing some genetic tests. These apparently take a long time, so I don't know if they have any more results (I'll ask at the next clinic).

C3 glomerulonephritis can recur in a transplant, which is one of the things that kept me up at night after I had (somehow) managed to absorb everything else. It doesn't seem to be dense deposit disease, so recurrence is not as likely. But I haven't heard anything definitive. She is on the waiting list with inactive status. My wife and I are being evaluated as donors. The deceased donor wait is likely to be long. We had an adult cousin volunteer immediately, though I reflexively said no. I may revise that view depending on circumstances, but it's good to have donors in reserve no matter what.

The situation sounds similar to Jenna in that my daughter has always been bright, healthy, and confident. She still is all that with one big exception. The damage was happening right under our nose, and we never suspected. What caused Jenna's kidney failure? I hope she finds a donor soon.

[chuckdims]

I was diagnosed at 18, but was told I had it since my kidney/bladder surgery when I was 3.  Obviously mine was not as bad as hers or we would have known sooner.  I wish I had some words of wisdom, but I don't.  I know there are some users here who started dialysis as a child.  I hope they comment or reach out to you.

[okarol]

The situation sounds similar to Jenna in that my daughter has always been bright, healthy, and confident. She still is all that with one big exception. The damage was happening right under our nose, and we never suspected. What caused Jenna's kidney failure? I hope she finds a donor soon.

Jenna has a rare bladder condition. She had high pressure at low volume, yet never felt the fullness and her bladder never fully emptied. It's called a non-neurogenic neurogenic bladder. She had to have her bladder augmented to be able to get wait listed for a transplant.
When determining a donor you'll want the best match possible, and sometimes it's not the parents due to tissue conflicts. I hope it works out and you can get her transplanted soon. I am sure they mentioned that her height can be affected if she's on dialysis for very long. Being proactive, as I am sure you are, will keep your coordinator on track. My mistake was waiting for them to list Jenna, and finding out months later that the transplant hospital was "between coordinators" which delayed her getting listed.

[PaulBC]

I am sure they mentioned that her height can be affected if she's on dialysis for very long.

Yes, that was one of the first things they told us. I think kidneys may get the prize for most underappreciated organ.

My mistake was waiting for them to list Jenna, and finding out months later that the transplant hospital was "between coordinators" which delayed her getting listed.

Sorry to hear that. I was told that my daughter's time on the waiting list started retroactively as soon as she was put on dialysis (the new rules). Hopefully that can help with this situation in the future.

[familyfirst]

Hi,

I am sorry I have no advice as such, just lots of love to send to you and your family at this hard time.

I am sure you have lots of support but an virtual ear is something I can offer

My partner is ESRD and recently began HD (31 with our first baby born 07/14) times can be hard but you will get there and I wish you al the luck in the world!

Take care (all of you)

Emma x

[okarol]

I am sure they mentioned that her height can be affected if she's on dialysis for very long.

Yes, that was one of the first things they told us. I think kidneys may get the prize for most underappreciated organ.

My mistake was waiting for them to list Jenna, and finding out months later that the transplant hospital was "between coordinators" which delayed her getting listed.

Sorry to hear that. I was told that my daughter's time on the waiting list started retroactively as soon as she was put on dialysis (the new rules). Hopefully that can help with this situation in the future.

Yes, who knew a kidney had so much power??

The new rules will help, I think. But with living donation, you still need the coordinator to be right on top of things or it can lag for many months.
We have changed hospitals in the past just because they are not helpful with getting donors evaluated.

[PaulBC]

The new rules will help, I think. But with living donation, you still need the coordinator to be right on top of things or it can lag for many months.
We have changed hospitals in the past just because they are not helpful with getting donors evaluated.

I have confidence in the care my daughter is getting, and that includes the transplant coordinator. Of course, I will keep tabs on things. I haven't actually heard anything about my compatibility other than blood type, but I think I will hear more soon.

The biggest, scariest unknown is the potential for recurrence of the same disease in the transplant kidney. That could determine whether a living donor is even suitable. Other than ruling out dense deposit disease (which they have, as I understand it), I'm not sure what else they need to determine.

[Darthvadar]

Hello Paul....  to IHD...

Glad you found us... I've no experience of caring for a child, but you'll find that lots of people here have... Take advantage of the expertise we've built up...

Hope your daughter is doing well...

God bless...

Darth... Moderator...