Wednesday, March 23, 2011

The next steps...

Today we saw Ashlea's kidney specialist.  I can't think of how to organise all the information that is in my head, so I am just going to give you the question and answer conversation I had with the doctor.

Firstly we had bloods done.  Ashlea's creatinine is up again.  5 weeks ago it was 341 and today it was 387. I can't believe how quickly it is climbing.  This time last year it was 210 and stable (GFR of 19).  Now it is 387 - next time we see the doctor it will likely be over 400.  Yikes.  I'm pretty sure her GFR is now <10 but I'm not sure I really want to do the calculation.

And now for my questions...

Q. Do we have a 'slot' on the transplant calendar?
A. We are pencilled in for November - assuming I pass all the tests.

OH.MY.GOODNESS.  It is all starting to become very real.  Is this really my life we are talking about???

Q. Can donating a kidney shorten my lifespan?
A. No, all the studies show that donors tend to live longer than the average 'Joe Bloggs' - mainly because they are a self-selected group.  That is, you have to be healthy to donate, therefore you are more likely to live longer than someone not healthy enough to donate.

I was relieved to hear this.  My Grandfather lived to be nearly 102 and I'd like to give him a run for his money!!

Q. What is the chance of 'something bad' happening to me?
A. Apparently there is a 1/10000 chance of dying.  I think they have only lost one donor in Australia and that was because she was obese.  They are now much stricter about who can donate.

Q. Could Ashlea die?
A. Unlikely.  Obviously her case won't be as straightforward as some other patients, but the survival statistics are 98% of Ashlea surviving the first year -  but this statistic takes into account ALL kidney patients and ALL causes of death.  Of the 100+ transplants done at our hospital one child died of an infection several months after transplant, and one died several years after transplant in a car accident (don't even get me started on how horrifying that would be as a parent to go through a kidney transplant with your child and then have them die in an accident). The chance of her not surviving the transplant is very small.

Q. How long will the kidney last?
A. According to the statistics there is a:
- 95% chance of the kidney surviving one year
- 85% chance of the kidney surviving two years
- 75% chance of the kidney surviving five years.
Again those stats take into account all types of kidney disease and transplants.  Hopefully Ashlea's kidney will last MUCH longer as she doesn't have a disease that will recur and affect the new kidney. Also her and I are a pretty close match (4/6) - sometimes when you get a kidney from the list you could be a 0/6 match but you still get the kidney as long as their are no positive antibodies on the cross-match.

Q. What happens next?
A. Ashlea's doctor writes a letter to the transplant co-ordinator who will then contact me.  He will arrange all of my testing for me.

Q. If there is gastro going around at preschool should we stay home?
A. Probably.  Gastro would dehydrate Ashlea and increase her creatinine.  In healthy people their creatinine would just come back down again but Ashlea's goes up and stays up.

Q. Can I have a copy of the tissue-typing?
A. Yes

Q. Will I need to fatten up?
A. Maybe.

I ran out of questions at that point.

The summary to all of that is that I now have to wait for the transplant co-ordinator to call me with details about my testing.

On the way out of the hospital we bumped into the social worker and she reminded me that after the transplant Ashlea will get a Make-A-Wish.  Lots of kids choose to go on a family holiday to the Gold Coast to go to Movie World, Sea World etc.  Seeing as we were just fantasising about that the other day with Emma and Audrey that sounds like a pretty good wish to me.  She also said she would try to get us a weekend at Bear Cottage down at Manly before the transplant.  The girls would LOVE to spend a weekend at the beach so hopefully she will be able to organise that for us.  We need it!!

I think that is all the news for now!  Sorry for the information overload, but I figured if I wrote it all down here I can refer back to it when I forget stuff!


Ally {mtm} said...

Gosh Al, so much stuff to take in.

I have everything crossed that Ashlea's levels stabilise between now and November.

Thinking of you all xx

Sarah said...

Yes lots to take in!

Make-a-wish sounds fantastic and would be great for you all.

Thinking of you all x

The Taylor Family said...

Wow, what a day! Thinking of you all. Rach xo

Belinda said...

Alison, so much to take in!

Hoping all goes well with your tests, and hoping Ashlea's levels stabilise!

Love to you all! Xx

Territory Mom said...

So happy for your family!!1