July 18, 2024

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The Buzz: Organ and tissue donation in Arizona

9 min read

Almost 1,400 organ transplants were performed in Arizona in 2023. That’s according to the Organ Procurement and Transplantation Network, but the state’s waiting list remains at almost 1,700 people and 47 died last year while waiting for a transplant.

Arizona falls right around the national average with 55% of people registered as organ donors. But what does organ transplantation in the state look like beyond the numbers? A major cog in the system is the state’s organ procurement organization, Donor Network of Arizona.

“The organ donation for transplantation system is pretty complex. And in fact, it’s segmented, said Donor Network of Arizona spokesperson Nico Santos. “[OPO] is basically a fancy word for we handle the state’s registry of people who register as a donor, either at the [Motor Vehicle Division] or on our website. And then we are in contact and communication with the family members of donors, after this person has passed away to either walk them through the process if the person is already registered, or to communicate with that family, learn about the potential donor and determine if this person’s values aligns with our mission, which is saving and healing lives.”

Santos said a lot of what is seen in popular culture about organ transplantation is incorrect and largely skips reality for the sake of narrative drama. But one place where it can be relatively accurate is the speed at which the process can move.

“There is some sense of urgency, and particularly from the recovery of someone’s gifts to the recipient, depending on what type it is. Maybe it’s the heart for example. There are some exceptions, but historically, and typically, you have about four hours from donor to recipients. So there is a sense of urgency, yes. But there’s a stage of this whole process, much of which lands kind of in our area of work, Donor Network of Arizona, which is donor care. So before the recovery of organs, there’s testing involved in a matching process, there’s allocation.”

Santos said it is important for those who wish to be organ and tissue donors to register and make sure loved ones are aware of their decision.

“Not because we would require authorization from next of kin in such an event because they’re already registered and it’s a legally binding decision. But in the rare event that maybe the family didn’t know, and this is a surprise to them. This is a pretty terrible time to be surprised.”

While Donor Network of Arizona handles the state’s organ donations, care for the recipients often falls to other groups, such as Transplant Families.

“So many families before this, they felt alone because of the nature of being isolated. So they were on their own thinking they were going through this all by themselves,” said founder Melissa McQueen. “We’ve been able to provide this community, were able to talk to each other, ask questions and support one another through these huge milestones that these kids go through, or items when they’re afraid, you know, like what if they get chickenpox?”

McQueen founded the group after her youngest son had a heart transplant while he was an infant.

“It was quite a shock to us when he was born with cardiomyopathy and shortly thereafter, he needed a transplant. He was very sick very quickly, [put on the transplant wait list] at six months. At eight months, we got the call.”

That call came on the same day he was supposed to receive a ventricular assist device.

“He got his new heart, and he has been doing phenomenally ever since. He just had a really phenomenal recovery, and everything’s gone well for him. Even when he was a baby who didn’t get to do certain things in his development. So we had to come back and get early intervention processes. He didn’t know how to eat, he couldn’t crawl, he couldn’t sit up. So we had to have therapies come in and help with all of that. It took him many, many years to catch up. But he never shied away from a challenge. These kids there were amazing. He came back, learned how to eat, how to talk, how to walk, how to run, and this last week, he got third in the state for JV wrestling in his weight class.”

McQueen said the sense of community that comes from donor families is one she is happy to be a part of.

It’s such a wonderful group to be a part of. If we had to fall into any medically critical realm, transplant was certainly the best one. It’s such a happy, thoughtful community. They’re all so grateful for the second chance we’ve been given with our family.

A first-hand perspective of issue donation

The Buzz show producer Zac Ziegler became the recipient of a tissue transplant in late-2023. To finish out our episode, we hear about the process from a patient’s perspective.

I have had problems with my legs since I was a little kid. It started with a spiral fracture in my femur when I was four years old, and what followed was a number of surgeries to try and correct the problems that followed.

One of the biggest issues has been a spot in my right knee that doctors first found was lacking cartilage almost 20 years ago.

A previous surgery, known as microfracture, allowed bone marrow to act like replacement cartilage. But doctors now know that procedure really only buys time rather than fix the problem.

My surgeon, Dr. Darius Moezzi, described the problem spot as “a pothole, for lack of a better word, on your outer aspect of your femur, the lateral femoral condyle. And it wasn’t just cartilage loss. But there was bone involvement too from your previous microfracture, and they didn’t know any better. It’s not like it was bad that they did that. It’s just we know today that isn’t going to work long term and it wasn’t filled with normal cartilage. And so you have this very classic appearing cartilage defect.”

In November 2023, Dr. Moezzi performed an articular cartilage allograft, removing the spot where there was bone involvement and replacing it with a plug from a tissue donor that had cartilage.

At 42, I am on the older side of patients who have a cartilage allograft. And not too far back in history, I would have joined the roughly 800,000 people a year who have a knee replacement after my marrow-based cartilage replacement wore out.

“If somebody is 60, yeah, you’re probably not going to do a cartilage restorative or a joint preservation surgery,” said Dr. Moezzi. “Sometimes it’d be nice, I mean, some 60 year olds may be healthy or more active than a 30 year old. You know, these things are expensive and it gets to kind of an insurance approval situation, and it’s a little difficult to get these approved for you know, an older individual. And older that might be defined in our world as over 40, or at least defined by insurance.”

Instead, I had a procedure that is relatively rare.

“We’ve distributed over 25,000 [cartilage allografts] since we’ve been around, and that was 2006, said Christopher Byczko, the marketing manager for JRF Ortho, the company that provided my allograft and one of the largest providers of cartilage allografts. “And that’s just we’re just talking cartilage, we’re not even talking tendons and meniscus.”

For Dr. Moezzi, use of donated tissue is a relatively routine part of his work.

“I don’t think there’s been an increase per se, we’ve always used it for certain knee ligament reconstructions, cartilage restoration, typically and then the less so the shoulder, a little bit in the ankle,” he said. “I was a little late for this interview because I just did a medial collateral ligament reconstruction in a young girl. So we used cadaver tissue for that, you know, an Achilles graft.”

Finding out that I needed such a surgery led me to a search for articles that would help me understand the process and risk a little more. That led to a curiosity about how tissue donation differed from organ donation. What I found was a relative lack of information in non-scholarly journals.
It turns out that perhaps the biggest difference is time. Instead of lasting hours like organs, tissue can last days to weeks. Some, like tendons, can be frozen to last even longer.

And that time allows for groups like the nonprofit JRF to get involved.

“What happens first is similar to organ donation,” said Byczko. “When somebody passes away an organ procurement organization recovers the body and then they move that on to the processing company, which in our case we’re owned by Allosource and Solvita, so either company can process the tissue.”

That processing goes from steps such as extensive measuring and assessing of the donated tissue to removing blood to negate the chances of rejection and remove concerns about blood type match.

Demand is also not the issue it is with organ donation, but waits still happen, particularly for living tissue donations like mine.

“We can only supply what we have,” said Byczko. “The other variable here for you, is your surgeon is looking to get your knee matched with the correct donor tissue. And so depending on your size, you know, if you’re a really big person, or really small person, you might be a bit harder than an average person.”

Dr. Moezzi said a typical wait for an articular cartilage allograft patient is 6-8 weeks. Mine was notably longer, around 6 months.

The issue could have been the large size of my cartilage bald spot, the fact that I’m slightly above average height (around six feet tall), or maybe someone misplaced paperwork, Dr. Moezzi told me.

But once the matching tissue was found, things moved quickly. I received a phone call on a Thursday morning and was in an operating room on Tuesday. That turn-around could have been even quicker, but that was the next time we could get into the hospital’s operating room.

Regardless of the reason or the wait, the results have been life changing. I am still months away from 100% healed, and my knee is still often achy, especially after physical therapy. But I am already able to walk longer distances than I could before, and Dr. Moezzi expects that I’ll get back to running and jumping at some point.

Part of the reason is that I was fortunate. The surgery went quite well. Dr. Moezzi said a great indicator of that is the subchondral bone in the surgery site.

“You can see that on x-ray. It’s kind of this white line, and the donor tissue will have that. In your case, it just lines up perfectly. Like I showed a couple of people in the office. So I was like, Look at this. It’s just part because sometimes you kind of see where the donor is, and, and it was just a real just a perfect fit.”

While this surgery feels like a miracle for me, it turns out tissue transplants are relatively common. Donate Life America estimates around 2.5 million people a year are recipients of donated tissue. That tissue can vary from cartilage and tendons to skin, corneas and bone.

Conversations have made me realize how common it can be to be a recipient of donated tissue. My wife had her knee reconstructed using a donated achilles tendon. The same is true of my cousin’s wife. A close friend has donated heart valves.

“When you get your license, driver’s license, when you mark donor, that also means tissue and the tissue can improve a lot of people’s lives,” said Christopher Byczko. “But also our parent companies, a lot of this tissue goes to spine and skin patients. And so there’s a whole other world out there where you could positively affect people and one donor can affect over 200 people in a positive way.”

Thinking about that effect has me taking a step that is more commonly associated with organ recipients. I am gathering medical records so JRF Ortho can identify the donor from whom my cartilage came.

I plan to write them a letter, expressing how grateful I am for their loved one’s donation. The quality of life that donation will give me and others feels like it will be hard to express in words.

And I have also checked to make sure I am a registered organ and tissue donor since the surgery. I doubt my knee will do anyone much good, but hopefully the rest of me will.

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