Do you want to see the face of someone who has just learned the absolutely amazing news that she only has to get blood work done once every THREE months and not every SIX weeks (as she has been doing for the last several years)????
Yes, you could say our transplant clinic appointment went well, or at least ended with great news. Addison’s heart is looking excellent, as usual. Her latest blood work has pretty much everything within a good range. Tac levels are 4.7 and everyone is happy with that, potassium has come down to normal range after being high enough to warrant a check in from the transplant dietitian. But new this time was a consult with a nephrologist.
After the GFR results at our annual tests this summer, we were concerned because Addison’s kidney function numbers dropped quite a bit, almost 20 points. Now no one seemed too concerned, telling us that was still within the acceptable normal range for transplant kids, which made me feel a little bit better, but you know that Aaron and I have always been worried about how the anti-rejection drugs impact Addison’s kidneys and other organs.
Well we got some great insight from Dr. B. Remember way back at our first GFR when Addison was a baby? The numbers were well below normal, but again, we were told not to be too concerned because testing at that age was grossly inaccurate. When the following year’s results showed better than normal kidney function, we relaxed.
But Dr. B says what he believes happened is Addison’s kidneys sustained some kind of injury pre or post-transplant, likely due to heart failure because blood does not get pumped properly to all the organs, especially the kidney. So the first year’s GFR actually reflected her compromised kidney function properly, but then the healthy kidney filters started growing bigger and managed to compensate for the damage, bringing Addison’s kidney function to what passed for ‘normal’. Until this year’s test. While her actual baseline kidney function technically remains the same, once you calculate with height and weight, it shows her kidney function is not growing as much as she is, hence the lower number. The expectation is that number will steadily go down as she gets bigger, but hopefully her baseline kidney function continues at its current level.
So what does all of that mean? No cause for concern at this point because her kidneys are working well, but a little bit of extra testing and monitoring as we move forward to keep a close eye. Dr. B assured us there are many different things that can be done to help stave off kidney function decline, if necessary. We’re good with that right now.
We are also weaning ourselves off our trusted cardiologist companion Dr. H, who has been with us since the beginning. He has been making the moves towards retirement for some time now, and at this week’s clinic visit, we more or less fully moved over to our new transplant cardiologist. Addison was a bit sad about it, but seemed to have a good visit with Dr. A…and of course when she told us we could move to blood work every three months that just sealed the deal.
With just over two weeks to go until the big day, we are definitely getting into the Christmas spirit. We’ve had several holiday events already in our packed calendar. The girls are pretty sure of what they want Santa to bring. Addison wants either a stuffed Mercury or Venus so she can complete her collection of stuffed planets. (If you have no idea what I’m talking about, check out the website.) Charlie first wanted a second bunny lovey, or “Bubba” as she’s called, but has now decided she would like a rocket instead.
Addison’s BFF Teagan had her annual Santa party at the beginning of December. So funny to look back at the first Santa party photo, which was really just the two girls and Santa and Mrs. Claus. Time really does fly!!!
And then this week we also took part in Operation Popcorn with BC Transplant. This is a chance for transplant recipients and living donors to say thank you to everyone in the hospitals who helps make organ donation a reality from the donor side. We went to the ICU and OR at BC Children’s Hospital to bring some thank-you presents…still a couple of familiar faces there we remember from the start of our journey seven years ago.
We aren’t expecting things to slow down until Christmas, especially with school going right up until December 21. And things are extra crazy because I am starting a new temporary job on Wednesday! For nine months, I will be on secondment from Providence Health Care to BC Transplant as the Manager of Communications and Community Relations. I am so very excited to take on this amazing role with an organization that means everything to me!!!! It all came together very quickly and I’m still in a bit of a fog…trying to wrap up projects at Providence and getting ready for a new challenge that will really immerse me in the world of organ donation and transplantation 24/7.
Lots to look forward to in the coming weeks…is Christmas really just two weeks and two days away???
Elaine, Aaron, Addison and Charlie