New Member going through tests

[EmmaB]

Hi
Many thanks for adding me to the board. I'm currently going through tests to donate a kidney to my son who is 12 months old and on peritoneal dialysis. My husband has already been turned down as they discovered only one of his kidneys is functioning properly. I've just been told that I have to go back for further tests as one kidney is 1cm larger than the other & my gfr is only 95 (aged 35). I'm so worried that I won't be able to donate and I'm his last realistic option. Has anyone else been through this?
Many thanks for reading, Emma x

[CK]

Oh my gosh, I'm so sorry about your son. That must be terrible! It was hard enough for me worrying about my boyfriend having to go on dialysis, I can't imagine a baby having to go through that.

I didn't have the problems you are having, just wanted to welcome you and say I'm sorry you are going through all of this.

[sherri]

Emma,

So sorry to hear your little boy is suffering from kidney disease at such a young age. Many donors have gone through testing only to find out that their kidney function would not sustain them if they were left with only one kidney and therefore were not approved to donate. When this happens to a parent for a child I can only imagine the disappointment. As a parent of 4 daughters, my initial reaction would be take my kidney and I'll go on dialysis instead. Of course, this is not possible.

You say one kidney is 1 cm larger. Was this measured by ultrasound, CT or MRT? Ultrasound is not always exact ( I am an ultrasound technologist) and a 1 cm difference is usually not of concern. Your GFR is 95. Was that done by 24 hour urine or was it done using a more invasive test which is more sensitive? You may want to ask the transplant coordinator to explain each test done, how accurate they are and if there are other more sensitive tests which may be more invasive and more expensive but can give a more accurate results. You mentioned your husband's kidney function is also less than expected. I hope he is under the care of a nephrologist to help him maintain as much kidney function as possible by taking appropriate medications (this may include blood pressure medication or other protective agents depending on the reason for the decline), eating a healthy diet and avoiding medications like ibuprofen, Aleve, naproxen or other non steroidal anti inflammatories (NSAIDs). It would be even more challenging for your family to have to have two people needing kidneys.

It is amazing that your son has been approved for transplant given that he is only 12 months old. Did he have to reach a certain weight before being approved? Is he on the list for a deceased donation? From my understanding, pediatric patients get more points on the waiting list which makes the wait a little less. How is he doing on PD? Are you managing it well? Some families whose infants/children need a kidney opt for a deceased donation, since the pediatric patients don't have as long of a wait as an adult, and then use the living donor later when they are older when a second transplant is needed. But of course one never knows if the living donor will still be eligible when the need arises. So it is a hard decision. Does the hospital have a support group for parents with children on dialysis or waiting for transplant? It might be helpful for you to speak with other parents and of course with a social worker or psychologist just to help you through this.

And lastly, you may also want to let others know of your son's need for a living donation. Perhaps a friend, family member or someone from your community/religious institution would want to donate but is not aware of the need or the possibility that anyone can be a donor, related or not. There is information on this site about how to go about making your need known in a respectful way.

Wishing you all the best for your family. Keep us posted.

Sherri

[elephant]

Dear Emma,

When I was evaluated as a donor, I had a special kidney function test performed that measured the rate at which I cleared a radioactive isotope from my blood.  It took several hours, but was not painful, just boring. 

Based on the eGFR from my first blood test I could not have donated.  But that can be a poor measure of kidney function.  In my case, it appears that weightlifting and running causes me to have an unusual result.

Love, elephant

[lawphi]

At his age,I would consider reaching out to others to donate.  My 31 year old husband is on his third kidney and developed antibodies that made it difficult to match.  Kidney rejection can occur with common childhood illnesses. 

Also, you will not be able to lift him after the transplant for a minimum of six weeks.  It is completely understandable to allow a third party to donate and save your kidney for later. 

[EmmaB]

Thank you so much for your replies. Josh was born in kidney failure - his kidneys didn't develop properly and have never functioned above 5%. He needs to be above 10kg for the transplant to happen which he is at last (g-tube & vomiting sagas) and needs to have his childhood immunisations plus a few extra so 15/16 months is the earliest.
I guess the main concern at the moment is if I can donate at all - the tests have been really tough so far. I'm in the UK so it's possibly a different system (almost discouraging you to donate). I desperately want to help him. I am also hoping to that the future may hold further donors i.e. cousins will be over 18 so my instinct is to donate now if I can rather than deceased donor. I'm also not sure how long my family can hold up under the pressure of waiting for a donor ( I have 2 other children, one with Down Syndrome)
BW
Emma