Friday, January 7, 2011

The Details

OK, so here's the lowdown on Ashlea's kidneys.

Since July last year her creatinine has gone from 210 to 277, which means her Glomerular Filtration Rate (GFR - measure of kidney function) has gone from around 19 (stage 4 - where she has been all along) to around 13 (stage 5 - end stage).

The treatment starts to change now that we have reached stage 5.  We are now staring down the barrel of a transplant or dialysis.  At this point we are heading towards transplant, because we believe Ashlea will have a better quality of life with a transplant rather than on long term dialysis.

The transplant is probably not going to be until the end of the year - although it does depend on Ashlea.  If she remains stable she will continue to wait, but if she deteriorates quickly she will be transplanted sooner.  The transplant list is very fluid, the child that needs the transplant the most goes to the top of the list, and those who are more stable wait.

This of course is all assuming that Murray or I can be her donor.  If one of us can't donate, and we need to wait for a deceased donor that takes a lot longer.  She would have to deteriorate further to the point where she needed dialysis, she would then have to do dialysis for a year and at the end of that year she would receive paediatric priority on the waiting list.  It could then take another year for a donor kidney to become available.

At this stage we are hoping to do a directed donation where Murray or I give her a kidney.  Murray, Ashlea and I are having our tissue typing blood tests done sometime in the next month.  That is the first step to determining if one of us can donate a kidney.  Based on blood type we can both donate, but we still might not be a good match (the fact that Ashlea has had prior blood transfusions could affect this).  Assuming one of us IS a match, that person then has to undergo a barrage of tests to make sure they are healthy and able to give a kidney.  Assuming that all goes smoothly and one of us is approved, we then just watch and wait for our spot on the list. 

Once everything is approved it can still take a long time.  As I said the list is very fluid and based on priority, so even if we get everything approved in a couple of months, Ashlea could remain stable and it could still be a year or two.  The doctor's gut feeling was that it would be likely to be near the end of the year that she would need it.  Her next blood test will give us more of an idea - if her creatinine has stabilised then we might have a bit longer, but if it continues climbing then obviously it will be sooner.

Make sense?  Sorry for the information overload. 

This is big. 

BIG big. 

I feel like I have the power to decide whether Ashlea lives or dies in my hands.  As her parents it is our choice whether we want her to have a transplant, or dialysis or no treatment at all.  What is best for Ashlea?  If she didn't have other disabilities none of this would come into question, but seeing as she is who she is, the question does have to be asked.

Is this the right thing for her? 

How much treatment is too much? 

Is there a point we should stop?

There probably is a stopping point, but thankfully we're not there yet.

What a year it's going to be!!


Sarah said...

I hate the transplant system, it really stinks! After having my nephew go through it, there has got to be a better and more effective way!

Really hope you or Murray are a match for Ashlea given her previous blood transfusions, I will have everything crossed for you that one of you are x

Anonymous said...

Hi Alison, our prayers are so with precious, beautiful Ashlea, and all of you right now.

Parnee & Matt

n0thingbuteverything said...

Not at all information overload Alison. I so admire your ability to take complex information and make it clear and easy to understand.

It's a shame the logic of the system isn't as easy to understand though :-(.

Of course, I hope that Ashlea's levels stabilise. But at the same time I hope that you're not left waiting for long.

Fingers crossed the testing for a match goes well.

And the questions you raise at the end. Sheesh. Being a parent is hard. Being a parent faced with such tough decision making is so much harder.

Treat yourself kindly, you are doing a brilliant job xo

Marie said...

Just wanted you to know that I've said a prayer for you just now.

Missy said...

Alison, thank you for sharing this...gosh what a big challenge Miss Ashlea (and your family) is facing.
I do hope that her levels stabilise so that it can be held off a little longer. I also hope that your or Murray are matches for her.

I have a friend waiting on a double lung transplant and it just highlights how important it is to promote organ donation. We have such precious loved ones waiting...

I can only imagine the questions, the thoughts and emotions you are facing and will face. I will hope and pray for you all and for the very best of outcomes.

All my love xx

Jacqui said...

I'm sorry that you and Ashlea are facing this. I hope that you or your hubby are a match and that her levels stay stable. You are in our thoughts.

Anna said...

So many things happening for you guys this year. It sounds from your blog post that you are doing a wonderful job of thinking everything through and making your decisions based on what is best for Ashlea. Trust your instincts always.
I wish you didn't have to go through all of this though. Thiking of you xox

Alison said...

Thanks for all your support - it means a lot and will help me to get through the coming year.

Ally {mtm} said...

I've only just seen this Alison. I agree with Anna, follow your instincts.

I hope you or Murray are a match for Ashlea. I'm sorry that her results weren't the best.

I am constantly amazed at how level headed and together you are.

Sending you lots of love xx

ferfischer said...

Wow - this is a lot. When will you know if you or Murray are a match? And maybe this is a dumb question, but what about Audrey? I know I can ask you, because I have often thought about if Cici needs anything in the future, and as you know, her twin is a perfect match, and Penny might be an option for us at some point. I'm not even sure what the rules on that are. Please keep us posted - we are here for you!