Being renal has its perks

Addison December 2012  03 18-13-08

There is always a silver lining to every cloud and last week, we found out there are perks to being a renal patient. Any drugs that are prescribed by our nephrologist – yes, Addison has a nephrologist now too – are covered by the province. And on top of that, the pharmacy does home delivery. Way to look at the bright side, right?

It was quite sobering to have a long discussion with our new kidney doc and come to grips with the idea that the princess is now considered a renal patient on top of all the cardiology stuff. When we first heard she likely had chronic kidney disease as a result of her original heart condition and time on ECMO, it was like getting kicked down a few notches. Just when I was feeling a bit more relaxed about life as the mother of a transplant patient and all the strings that come attached, WHAM. I couldn’t stop my mind from racing to the worst case scenario…kidney failure leading to a kidney transplant. So I talked myself off the ledge once again, with help from Aaron, who is far less dramatic. When we finally had the official consult with nephrology last week, I was in a much better head space. The doc is hopeful we can get Addison’s kidney function from getting worse, and so far the numbers are holding steady. There is even a chance it may recover a little. Most importantly, she is a long way from CKD actually affecting her everyday life.

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But, and there is always a but, we do have to closely watch one thing. Poor kidney function affects the bone marrow’s ability to make red blood cells. As a result, Addison’s hemoglobin is quite low. It’s actually low enough to be considered anemia, though the princess doesn’t seem to have slowed down at all. We have gone back to the iron supplement, which is not exactly going down easy. The stuff tastes just like it smells – rusty nails! If that doesn’t bring her hemoglobin back up, the nephrologist says we will probably need to start giving her regular injections of a hormone called erythropoietin to stimulate red blood cell production. You have probably heard of EPO. It’s the same stuff Lance Armstrong is accused of using.

If EPO helped propel Armstrong into the super stratosphere of elite cycling, just imagine what it might do for the princess!

Though on second thought, I’m not sure I can handle a super-revved up toddler…Addison is already a very busy little girl. Hard to imagine this may be lethargic!

Love,

Elaine, Aaron and Addison

8 thoughts on “Being renal has its perks

  1. Ahhh the hemoglobin, yes the liquid is totally gross! And epo can be a bridge until she can take capsules, or sometimes the iv iron studies have often brought relief quickly to both Grace & I! As the stethascope turns…

  2. Hello McYong family,
    I have followed your blog since Addison received her heart and I have vicariously ‘lived’ your journey with you since then – for some reason I have never posted anything. After reading today’s post I just want to let you know how much your strength, courage and humour as you have walked this road has truly inspired me, and much how love to check in and see how well Addison is doing in spite of her health hurdles.
    I have 9 grandchildren, one with a severe health challenge, and I know the deep worry and concern that is so ever present when you are dealing with health issues in children. You have been a shining example of grace under fire and I commend you both for being so honest and open in your sharing.
    As an early childhood educator I have so enjoyed watching Addison meet her milestones and leap her hurdles – she is a special child and
    I look forward to hearing about her escapades for years to come.
    I thank you all for allowing me to share in your life a little bit (I actually read very few blogs but this one I never miss) and I wish you all a very Mappy C
    hristmas and a health filled new year.
    Lesley

  3. Happy Holidays Glad she is doing better now and hope they get the kidney functions in check so she will not have to go back into hospital. love the pictures she is getting bigger 🙂

  4. It is so heartbreaking to read of this new “setback”. You two have an absolutely adorable young lady who appears to have no intention of stopping or even slowing down in her battle. I cannot even begin to imagine what you are going through. Whatever you are doing to keep a smile on your faces, keep it up. You have a very special child who is obviously loved so very much by all.

  5. It is terrific to see Princess Addie looking so happy and healthy despite her latest health glitches… Merry Christmas and a very happy holiday season to the McYong clan … hope Santa brings something nice… perhaps a higher hemoglobin level ? 😉
    You are indeed a tenacious and courageous clan…and your strength, candor and absolute love and devotion to Addie is inspiring… a toast of good cheer to the McYongs and hugs for the wee princess. ❤

  6. Hi Elaine,
    If you guys have compounding pharmacies in Canada, they can make any Meds in any flavor, and they always have a bunch of delicious flavors to choose from. There are also several professional brands of vitamins that are focused on kids, and are therefore more palatable- kirkland is a good one. It is used by a lot of mom with sensitive kids, and is free of dyes, gluten and most additives.
    It might make life a smidge easier if the medicine didn’t taste like rusty nails…:)

  7. Oh boy…..another expert to add to Addie’s list. Well…at least you know that she is and will be carefully taken care of and watched over…and that she’s receiving expert care!!!!

    It’s so wonderful to see these Christmas photos….wish we could be there to celebrate Christmas together!!!

    Sending all of you lots of hugs and kisses!

    (Too boost Addie’s iron levels, maybe we should try to get some “Tru Blood” for her! hehe)

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