Halle Williams has lived with Granulomatosis with Polyangiitis for 18 years. For the past 3, they have had end stage renal disease and survive with the aid of home dialysis.
Courtesy of Halle Williams
One of the groups of people at particularly high risk from severe illness from COVID-19 are people with compromised immune systems.
Last month, as the coronavirus outbreak was picking up steam in the Pacific Northwest, OPB spoke with one immunocompromised person in the region about the complexities of moving through the pandemic.
Halle Williams has a rare autoimmune vascular disease and has been living with end-stage renal disease for three years, which they treat with home dialysis.
In March, Williams told OPB's "All Things Considered" about how the coronavirus pandemic had thrown their efforts to get a donated kidney into uncertainty. Many kidney transplants, from both living and deceased donors, were suddenly being delayed.
Meanwhile, the short supply of masks had changed Williams’ home dialysis routine. All of that, on top of the precautions needed to navigate the world as a high-risk immunocompromised person during a global pandemic, had really complicated matters for Williams.
This month, OPB spoke with Williams again, who had an exciting update to share: they were getting a new kidney.
“It was kind of a miracle kidney,” Williams said. “They were only going to do [a deceased kidney transplant] if it was a very young donor, a perfect match.”
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Williams was that perfect match. According to Williams, it was the first transplant the hospital that treated them had done in three weeks, “which is pretty unusual.”
With deceased donors, Williams said, the news always comes quickly. They’d gotten the call on a Thursday morning at 11 a.m., and were told to be at the hospital at 5:30 a.m. the following day.
“I was really surprised, and excited of course,” they said.
Due to the pandemic, the hospital experience was a lot different than it’d be usually for a major procedure like a kidney transplant. First of all, there were fewer people there, as many routine, non-essential medical procedures have been postponed.
“It’s really kind of eerie at the hospital. It’s kind of like a ghost town,” Williams said.
The bigger difference was Williams’ lack of visitors or a support person before or after the surgery.
“The hospital’s basically on lockdown … for transplants, it’s normally required that you would have a care partner going through the process with you, but they did not allow me to have anybody come with me … no visitors are allowed at the hospital right now,” Williams said.
But, Williams had a creative idea to see friends and loved ones, even though they weren’t there physically.
“I love to dance, I love to see my friends dancing … I wanted to wake up to seeing videos of my friends dancing, so I made a short little dance playlist of songs I thought would be fun to see people dance to, and I got a lot of videos,” Williams said.
In one video Williams shared with OPB, a friend holding a baby dances and exclaims, “Halle has a new kidney today! We’re so happy!” The little girl blows a kiss. In another video, two friends dance with their dogs.
“It was really nice to see those,” Williams said.
After five days and four nights in the hospital, they were headed home. The previous plan was for Williams’ father to fly in from Ohio to help take care of them after the transplant, but he is 75, so Williams insisted he stay home. Williams’ sister, who lives in town, is now filling that role instead. Friends are not allowed to visit, aside from quickly dropping things off.
“I’ve been on immunosuppressants for 20 years, but after this surgery, I’m especially immunocompromised. Right now, I’m on a high amount of immunosuppressants and anti-rejection drugs … even without [the coronavirus pandemic], I would be extremely susceptible to infections right now,” Williams said.
But that aside, Williams feels great. The pain at their incision area is manageable, and the wound is healing properly, their doctors say.
As far as the transplant itself?
“The kidney and I just took to each other immediately. It’s working really well,” they said.
Williams explained that their kidneys had been failing for over a decade, affecting many different parts of their body. All of their kidney functions had been replaced by dialysis and medications.
“Once you get a working kidney, all that stuff is working for you again. And I can tell … it’s just like I’m a healthy person again. It’s incredible. And I think once I heal from the surgery itself, I think that I’m going to be feeling amazing,” Williams said.
In addition to Williams’ good health, they feel they’ve helped bring some joy & hope into the lives of their loved ones at a difficult time.
“People have been wanting this for me for a long time, and then for it to happen right now when everybody’s in such a weird place and looking for things to feel happy about, this has kind of been a blessing in that way … it’s been really neat that this was able to provide that for people all over,” they said.
To hear more from our conversation with Halle Williams, use the audio player at the top of this page.