The harsh reality of #lifeaftertransplant

In the whirlwind banality of our daily lives, Addison’s heart transplant sometimes seems so routine. Meds in the morning, meds at night, wash your hands several times in between. But a horribly sad reminder that our transplant warriors and congenital heart defect babies don’t always get to live normal, long lives – one of our heart transplant friends died earlier this month. We went to his memorial service yesterday. Cody was just 18 years old.

He always had a big grin on his face, despite everything he had gone through. Several open heart surgeries as a young child. A stroke. The long wait for his second chance at life. A tough battle with a flu infection that landed him in hospital again and damaged his gifted heart. The last time I saw him was in the hospital around Christmas time. He was hooked up for several hours of plasmapheresis, he had a wound that wouldn’t stop dripping blood, yet he was still smiling.

It’s a fear that never leaves the dark corners of your mind. Will that be us one day?? No one has that answer to that. But I do know for certain this will not be the last memorial service we attend for a member of our transplant community or BC Children’s Hospital family. This is the stark reality of transplant life and life with a chronically ill kid.

We are very fortunate Addison has been enjoying good health. This does not mean she isn’t still walking a tightrope with her transplant medications. Last week, our team just asked us to bump up her dose of Tacrolimus 50% – from 2mg twice a day to 3mg twice a day. With the kidney issues and nasty infections she had in her first couple years post-transplant – side effects of the Tac and too much immune suppression – we have been keeping her levels well below ‘normal’.
Every six weeks, Addison’s blood is measured for Tac trough level, the level just before her morning dose. This is supposed to show her minimum blood concentration but more research shows it’s not the most accurate way to determine the right therapeutic level. What happens in the other 23.5 hours of the day? As we know, everyone metabolizes medications differently, and many drugs don’t work for many people, or you need very different doses to get the same effect. Tac is one of those drugs. Some studies show the bioavailability as poor as 11-20%. Personalized medicine isn’t there yet, especially with the pediatric population.

The protocol at SickKids in Toronto, a much bigger transplant centre, is to keep children who have had no issues with rejection, at a trough level between 4-6. Addison has been running around 3, sometimes even dipping below 2. Our cardiologist feels that it’s time to get her levels back up to normal because her kidneys have been doing fine and there is real concern that continual low immunosuppression can lead to chronic rejection. Aaron and I were very wary of this considerable jump in Tac, but we had a good discussion with him – ironically just before we left for Cody’s service – and are moving forward with it. This means extra blood work in the short term to keep on top of it, and possibly pharmacokinetics testing down the road if things go wonky.

There is never a clear path on this transplant journey, and sometimes it just freaking sucks. But I am so incredibly grateful we are still here. I’ll take all of this heartache and uncertainty for the opportunity to keep going with Addison. At Cody’s memorial service, his mom Elena talked about how there was one thing she didn’t regret. They gave Cody everything he asked for, even allowing him to cash in his RESP to buy his first car. This was just at the beginning of January. Cody was so thrilled with his big purchase.

He never even got a chance to drive it.

Rest in peace Cody.

Love,
Elaine, Aaron, Addison and Charlie

9 thoughts on “The harsh reality of #lifeaftertransplant

  1. Thank you for sharing this Elaine. You capture the deep feelings we all have on this journey. We could not be at Cody’s service because we had another celebration of life to attend so I really appreciate the words you shared. Deep breath – a reminder to us all to cherish the moment.

  2. We are so sorry that life has dealt you and your family such a heavey cross. Words cannot express how sad we were to here of all the battles that Cody had to endure in his journey. I know you and your family must be devastated. We wanted to let you know you and your family are in our thoughts and prayers always. Thank you for sharing.

  3. So hard. I feel for this young man’s family. But also you guys; it’s a tough row to hoe. As if parenthood wasn’t hard enough already!

  4. My heart goes out to Cody’s family. Such a young age, the same age as many of the students just starting their studies at the university I work at. Addison is such a gem and a bright girl, with amazing parents who I’m sure are helping her keep perspective.

  5. Thank you for always sharing your journey. Thank you for sharing For Cody. I have,just lately, been struggling with the appropriate words to explain to other parents why sometimes I am so nervous for Tristyn or why, at other times, I am saying “let him run’ I always feel that T walks a tightrope and I am trying to just be his net or his safety line . It is a fine line. Anyway, thank you! This post transplant mama truly appreciates you!

  6. RIP Cody. I cannot imagine the sadness and emptiness Cody’s Family and friends are feeling now. Sounds like he enjoyed life to the fullest and touched many around him. Xo

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