The Hospital, The Machine in the time of COVID-19

The hospital is eerily quiet, as you might expect at this time with the virus situation. It’s quiet on the transplant floor, with plenty of open rooms. There are no visitors. I am only one of two family members that seem to be here and allowed to stay. The transplant doc Monday told me he agreed right away to have a parent stay, citing that he would insist the same for his own college-aged child if they were hospitalized. It’s hard to leave and come back to the floor but I am left no choice because they will not feed me. I’m not allowed to leave the hospital. They’d rather I dine with a bunch of hospital staff than in my car alone through call-in order and curb service. Okay.

The care has been exceptional. Even with everything going on around the world, the dedicated staff still shows up with no complaints. We’ve not noticed a lack of care at all, even if expecting it because of the virus. While for the catheter placement they could have arranged surgery with general anesthesia but they didn’t know when. In the end, our son opted to have the procedure awake so he could begin treatment sooner and leave sooner. He is glad he made that decision.

It was a restless night in the room. He was in pain at the catheter site, which is not unexpected but still not fun. He got Tylenol at 9 and an hour and a half later he got something much stronger. He was reluctant to move and you know how it is when you can’t sleep in your preferred position (his is on the side, thankyouverymuch). The pain relief brought about four or five hours of sleep last night. An early visit for labs, meds, vitals and shift change. All separate walk-in between about 4:30-7:30 this morning.

His first plasmapheresis treatment went well. The fact that he could have it in his room meant he didn’t have to move, the room was quiet, the sounds of the machine and the exhaustion meant he happily slept through the treatment.

Just some information for those of you who have had questions:

• Transplanted organs don’t last forever. They can wear out. They can last a very long time, too, but there are averages. They are a little higher for a living donor (like both our kids’ donated kidneys) kidney than a deceased donor. Transplants for kidney patients are another form of treatment instead of dialysis. The kids aren’t cured of the PKD, but they each have a very good treatment available to them because of our generous donors, Jody and Cheryl. Beside the massive amounts of Cheetos over the years and not as much water as we would like him to drink, he’s been a perfect host to a perfect kidney. Thirteen years tomorrow. 13!!
• We don’t know what caused this episode. For some reason, one of the meds that fake our son’s body into thinking the big foreign object in his abdomen is his and not our family friend Jody’s wasn’t working. It’s possible he just needed more of it for a bit too long of a time and that allowed the antibodies their chance to take over. Our team has suggested it was med compliance. We know it’s not, so they are forced to accept that it’s a fluke, which can also happen. One thing our son is and has been is compliant. The team at Children’s uses him as an example to other teens coming up the ranks.
• We were told this treatment of removing the antibodies is successful somewhere around 80-85% at varying degrees. Please know that’s from a conversation where I had just learned the kidney was being rejected and I currently refuse to check google for anything besides spelling of plasmapheresis, so don’t tell me if it’s different than that number.
• We’re counting on this working. Until it doesn’t. That’s how we roll. We prepare for what might come but we don’t have the energy to be worried about things that haven’t happened or might not even ever happen.
• If either of our kids ever needs a kidney, we will absolutely contact those of you who have been generous enough to send messages that you’d be tested. I have ZERO problems asking for a kidney for them. ZERO. If it turns out this treatment doesn’t work, all of you will be the first few hundred people to know. We will be asking for donors who have O blood type. We will not be shy.
• If you’re so inclined to help someone with a new kidney, consider my friend Lizz Porter. Here’s a post about her and who you can contact to be considered. She’s been lingering on dialysis and could many more years without someone to give one to her. We have two donors and I know two others. Any four of the women would be honored to talk to you about the process.

We have been overwhelmed with your messages of love and hope and prayers. We are strengthened to know you’re rooting for our much-loved son and for us. Thank you for everything.

If you could send a little prayer or good thought for our donor, Jody, as well, we’d be grateful. It must be a weird thing hearing your kidney might fail in someone you love so much and only want to see (and have been seeing) live their best life. We told her first, on Monday, what was going on so she would have time to get used to the news before being made public. As if.