The transplant coordinator called to tell me that they won’t send the paperwork in to insurance for Quinn’s transplant because Quinn’s GFR went up from two weeks ago. I’m disappointed for many reasons.
First and foremost is Quinn’s quality of life and the chance that she will face dialysis if we don’t do this transplant preemptively. She’s itchy and tired (procrit still hasn’t kicked in), she’s on something like 13 meds twice a day, she has tons of urine output, she just feels lousy and is crabby, and her overall zest for living is slipping away before my eyes.
I still need to talk with her nephrologist about it all, but there probably isn’t anything she can do to push it along. There is a nephrology team at Children’s Hospital that makes these decisions. And while she is sick and exhibiting symptoms relating to PKD she is considered too healthy for transplant. “Dr. So & So doesn’t want to transplant her before she needs it.”
This wouldn’t ordinarily be a problem for a child with kidney failure because it usually takes months for kids with typical PKD to be in complete renal failure and there is time to plan. Unfortunately my kids aren’t medically kidney failure typical. Gage’s course of disease progression and rapid rate of kidney failure is proof. There’s no reason for me to believe that Quinn’s progression will be slower/different than Gage’s. Which, I sincerely believe (call it gut feeling, call it intuition, call it whatever the hell you like), puts her needing dialysis.
At the end of June 30, 2006 Gage’s creatinine was around 2.2ish and September 5th – 65 days later it was around 4.3ish and 14 days after that it was 5.7ish. Seventy-nine days. Even though they would have started the process at 65 days, but we were all in shock. It takes longer than that for donors to get tested at the center our hospital uses. This inability to move forward now puts Quinn at a terrible disadvantage.
She will continue to get labs every two weeks until they see her labs going in another direction and if it is within a year we won’t have to go through complete transplant evaluation again — just a couple of clinical tests. After a year, we redo the evaluation from scratch.
As a parent, I am not sure my opinion matters to the powers that be (Doctors and Insurance Company), but don’t think I won’t evaluate our options (appealing somehow?). Because with the inability to donor test quick and the good fortune of our first potential donor being approved, the only person this truly impacts is Quinn.
There’s no way she won’t get screwed in this deal.
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I hope the procrit makes a huge difference.
Is there another transplant center somewhere (geographically feasible) that might have different standards? (I know some folks at Hopkins? I know it’s a hike…) I mean, I understand why they want people to be at a certain level of illness for this, especially with a child who will likely undergo multiple transplants. But I would hope that the insurance companies/medical powers that be might take somehow Gage’s progression into mind.
I’m hoping that the GFR going up was just a blip, and that it will go back down so you can get the ball rolling. (I feel really weird wishing ill health on Quinn, but I’m sure you know what I mean.)
What would you rather happen? Do you want the GFR to drop again, so you can get on with this process? Or would you rather the GFR continue to improve, the shots start helping with her energy, etc…? I can only imagine your frustration with the back and forth at this point.
I want to pray for your needs, so for now, I’ll ask God to help you navigate this crazy limbo that you’re in. I hope that things will move in a positive direction soon, so that poor, dear girl can begin the road to feeling better!
I’m thinking of you all, hoping your holidays are happy!
Jenn
Dear Julia,
It’s been a while since I visited your blog. It’s so disheartening to learn about what you and Gage have been going through. I can’t imagine the frustration you must feel. I recently joined twitter and I added you to my feeds today.
I’ve spent several hours in our local hosptial with my dad in the last week. The care element of our visits is always lacking. I have to assume the science is good but the care sucks.
Wishing you a joyful holiday in spite of all the challenges thrown at your feet.
Carol Seidl
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