Kidney Saving Measures in the Time of COVID-19

Twenty-one is the age of adulthood and adult healthcare and so about a month ago our son’s new adult care team noticed two things: 1) it appeared like his original liver was failing and 2) it appeared that a med to protect his kidney by making his body think it was his (but too much of it could damage it) was too low, risking his body rejecting the kidney, now with him for 13 years this Friday. This Friday the 13th. I know.

Neither of these issues is optimal at any time.

If it’s possible, it’s even less optimal during the time of COVID-19.

The Liver Transplant (evaluation) Team was made aware of the bad looking numbers and a series of tests began last month. A complete liver panel of labs was ordered, a copy of recent abdominal ultrasound requested, and finally to see what the liver really looked like close-up, an MRI with contrast on a recent (and convenient) Saturday Kaiser clinic. We recently learned, for now anyway, the liver is in guarded but okay condition. The liver disease is a part of ARPKD (autosomal polycystic kidney disease) is called CHF (congenital hepatic fibrosis).

Last Friday the kidney team called to have a kidney biopsy done on Monday. They wanted him to come when the office for transplant was closed because of COVID-19. So, you know, we knew it was something serious. We entered the empty clinic and proceeded to the procedure room for the biopsy which he handled really well, being awake. The biopsy showed the starting stages of rejection, so they admitted him Monday night to begin a simple three-day protocol of steroids.

We know for us though, it’s rarely simple.

Yesterday after further review, pathology reports indicate that his kidney is in danger of being rejected because of donor-specific antibodies. DSAs can be absorbed by an organ transplant and then cause rejection in the kidney tissue. To help remove them, he will go through a procedure called plasmapheresis for the next 10 days, wherein they try to remove the harmful antibodies in order to protect the kidney.

They will keep him admitted, although there is an outpatient clinic. Because of the current COVID-19 situation, clinics are understaffed where possible and the kidney team thinks it’s safer for him to remain here than brave coming in and out and multiple healthcare workers. Unfortunately, we won’t know for a few months if this works.

We hope, we pray.

It feels like we are ringing a bell in a beautiful song with a lot of other bells and not hearing for a few months if we hit the right notes.

My son, my husband and I are having a bit of déjà vu because this morning they wanted to put the catheter in his chest through surgery (while he’s awake – on purpose) by the department (in a different hospital though) that caused great harm to him emotionally over a decade ago (by him being awake during surgery, not on purpose). We keep bringing this up to everyone in the path of this surgery and treatment. Discussion points we have mentioned several times… surgery where he was awake, he was seven and couldn’t articulate what happened, he became hostile and was in unimaginable pain. He was unsafe to himself and was suicidal and admitted. He was ten when everything came out and he was able to begin to heal. Imagine us telling this story multiple times. It’s not easy for them to hear it because they are used to adults well past things like this and because we are in The Inbetween World, we explain and explain again. We’ve told 20 people the story.

In the cases where we’ve talked about the surgery over the last 24 hours, my son said, “As long as I am not awake,” and “As long as you give me enough medicine to sleep through it.” Well, that was not to be. This morning the surgical radiologist explained everything. How the procedure will go, what will happen, who will be in the room, what it will feel like. And how he would likely not be asleep.

And our son said no. Not a sort of no, but a hard, firm “no.”

Then he processed it quietly. We talked a little bit. We sat quietly some more and then we weighed out waiting or not and how it prolongs being here, in the hospital. While it was no wholeheartedly – or half-heartedly really, he did agree to have it done. They wheeled him away about 30 minutes ago.

One of the things about being a newly minted adult with a life-long chronic illness is that he is finding his way as he goes. He’s learning more about being his own advocate in this form and we’re navigating a new relationship within our advocacy parent-son partnership as well. When do I step in, step out, when to lead, when to follow. I’m here as someone who knows the story but hopefully helps him do this thing in his own, unique way.

So, he’s downstairs getting an “awake surgery” that we talked about a lot today. One of the last things I said was, “You can do this. You can do hard things, you have done so many hard things.”

“I know. But I still don’t want to do this and just want to leave,” he says, a couple of hours ago before he let them take him to surgery.

There it is. The Inbetween World. Not wanting to show up because you remember your young life with surgeries – sometimes harmful – but showing up because that is what it means to be an adult and adults show up to take care of themselves, even in the face of fear.