Rick Ruzzamenti is an electrician who lives in Riverside. His kidney donation started the longest chain of kidney donations ever documented.
Lisa Stocks, President, Donate Life California
Tammy Wright, Transplant Special at Sharp Memorial Hospital
Related Story: Riverside Man Begins Longest Chain Of Kidney Donations
CAVANAUGH: This is KPBS Midday Edition I'm Maureen Cavanaugh. The wait for an organ donation is often long and agonizing. Many end up losing their chance at a new life because too few organs are donated or because they have a rare genetic or blood type that limits the pool of donors. Last suspend, an article not New York Times told the story of the longest chain of kidney donations ever documented that started with a gift by a living donor, given by my first guest. Rick Ruzzamenti is an electrician who lives in Riverside. And he joins us today on the phone. Welcome to Midday Edition.
CAVANAUGH: Also joining me is Lisa Stocks, president of donate life California. Hello.
STOCKS: Hi, Maureen.
CAVANAUGH: And Tammy Wright is here. She's transplant specialist at sharp memorial hospital. Thank you for being here.
WRIGHT: Thank you for having us.
CAVANAUGH: Rick, this stories I say, starts with you. Can you tell us what made you decide to donate one of your kidneys?
RUZZAMENTI: I met someone who told me that -- her story of donating a kidney three months prior. And she said that it was no big deal. And she doesn't understand why more people don't do it. And I just -- when she was telling me the story about it, I just got excited about donating a kidney myself. And I went home and I did some research on the Internet. And that's how it started.
CAVANAUGH: When you researched on the Internet, you came across the national kidney registry. What fascinated you about the way the registry works?
RUZZAMENTI: Well, there's a number of websites about kidney donation. But that one just seemed to be more clear, and it explained about the chain donations.
CAVANAUGH: Okay. And tell us about chain donations.
RUZZAMENTI: Well, I don't know if I'm the best to explain it. Maybe the other people are.
CAVANAUGH: But you were the one who took part in it. So maybe you can give us a start.
RUZZAMENTI: Yeah, well, it's called an altruistic kidney donation chain. And there's just -- there's a number of people who need kidneys, and their family members or friends want to donate to them but they're not compatible. And there's a number of these pairs out there just waiting for somebody, somebody else to donate a kidney to them so their family member can donate to their family member or friend.
CAVANAUGH: Gotcha. Now, you didn't have a family member or friend. You just decided you went to a nearby hospital and said you wanted to donate your kidney. How did they respond to that?
RUZZAMENTI: Well, I think -- you know, I don't know exactly what they were thinking. Of the transplant coordinator, they were just very professional, asking me -- they asked me, why do you want to donate a kidney? And I said well, because I want to help somebody. When I saw the surgeon, he said I just wanted to see to see if you were crazy or not. And then we both just started laughing.
CAVANAUGH: So they thought maybe you had a screw loose, huh?
RUZZAMENTI: Well, there may be some people that -- I don't know, that may. To that do. And I think it's a shame that the first thing that some people think of is there's something wrong with you because you want to donate a kidney.
CAVANAUGH: You had to convince them that you were on the level. Now, Tammy wright, what Rick started turned out to be the longest chain of kidney donations to date. There were 30 people who donated to strangers so that their loved one could receive a stranger's kidney. And two of these people came to sharp hospital for their transplants. Tell us about that.
WRIGHT: Well, Mustafa dame to us when he was roughly 23 years old.
CAVANAUGH: Mustafa Parks.
WRIGHT: Uh-huh, Mustafa Parks. He was married to Bethany, and they had two small children. Unfortunately, Mustafa has a blood type that's an O, which is more difficult for us to get donors who are O blood type. So Mustafa was looking at a 5-7 year waiting period for I deceased kidney. Luckily his wife decided that she had a blood type that was not compatible with Mustafa, but through the exchange, she would be able to donate her kidney to someone who she was compatible with, and someone else in return would donate a kidney for her husband, Mustafa. And that way, he would have a better chance at having a life.
CAVANAUGH: Right. Now it sounds awfully complicated. Let me first of all ask you about the second person who came to sharp hospital for the transplant in this chain.
WRIGHT: Actually, it started with Rick at Riverside. He actually donated a kidney to somebody at St. Barn bus.
CAVANAUGH: I see. Were there two people who came to sharp hospital for this?
WRIGHT: Mustafa, which was the recipient, and his wife who donated a kidney to someone at UCLA.
CAVANAUGH: Now, what does the process of actually donating a kidney entail? What is that medically, surgically like?
WRIGHT: No. 1 role for us is to make sure that it is safe to donate a kidney. People can live with one kidney a normal life as long as they have normal kidney function. So our No. 1 role to begin with is to make sure that having a person donate a kidney is not going to alter their life in the future.
CAVANAUGH: I see. But how would it alter their life? How serious an operation is this?
WRIGHT: It's removing an organ. So it's a very serious operation. But luckily, we have two kidneys. And if we have good kidney function, we can function with one kidney and be good. There's many people born with one kidney, never know it, have a normal life span. So luckily our kidneys are pretty resistant, and a person can live with one kidney.
CAVANAUGH: Rick, this is a pretty serious commitment, donating your kidney. Tell us what the recovery was like.
RUZZAMENTI: The recovery, when I -- you know, everybody is different. I think I had a harder time than most people. I just remember waking up from the surgery and just being in a lot of pain. A lot of pain. And I was in a lot of pain for a week. And after that, the pain just -- it just suddenly vanished. And it took -- you know, from being on the anesthesia, it took me a month maybe to get my head really good and clear to where, like, if I had an office job, I could have worked.
RUZZAMENTI: Some people go back to work in two weeks. At six weeks, I went back to work in an office doing -- I'm an electrician, but I'm bidding jobs. But I've been a physically active person my whole life. And to get back 100%, the 100% to be physically ready to do real electrical work, to be aggressively physical, climbing up ladders, jumping down, it took me 16 weeks to get that oomph.
CAVANAUGH: Right. To really snap back. During that time, did you ever say to yourself, why did I do this?
>> No, no. I'd do it again.
CAVANAUGH: How are you now?
RUZZAMENTI: The only bad side effect I have is that my kidney is lonely.
[ LAUGHTER ]
CAVANAUGH: Well, you just have to talk the one you have left.
[ LAUGHTER ]
CAVANAUGH: Lisa, let me get you into the conversation. Let's talk for a minute why the national kidney registry exists. Tell us about the waiting time, what is the quality of life like while they're waiting for a donation?
STOCKS: Well, the national registry is a little bit different than the donate life California registry. It's a private organization. And they work with many transplant centers across the country to try to identify these potential chains that are typically started by this one person who is an altruistic donor. Tammy wright is a transplant coordinator and specializes in dealing with the side of the equation where there's the recipients and the people waiting. So I'd probably rely on her to give a little clearer background on what their life is like. My side of the equation is twofold. No.†1, we run the California registry for people who want to be a deceased donor. So after they die, they want to donate their kidney. And we're developing a living donor registry that we can talk about later that was -- the impetus was Steve jobs. He came up with this and really wanted this to happen.
CAVANAUGH: Lisa, we have a caller on the line that has a question that I think you might be able to answer. Ian is on the line from Solana beach.
NEW SPEAKER: Good morning, Maureen. I have two questions. My wife, not so long ago, passed away from brain cancer. That's glioblastoma for the medical experts. It's the same thing that Ted Kennedy had. Anyway, I wanted to -- and she stipulated she wanted to have her organs donated. And so I ran around like a chicken with my head cut off, trying to donate her kidneys, heart, liver, skin, whatever else they would take. She was physically healthy, she was under 60, and the donation services refused to take her organs because they said that she'd had certain medication for her brain cancer. And yet the neurosurgeon who is one of the leading neurosurgeons, and even serviced as a researcher in a university, said that it would have no affect whatsoever on the viability of her organs.
CAVANAUGH: Ian, thank you, I've got it. We're just simply out of time. I think we understand what your question is. Thank you for call. Why would that be -- Lisa, why would these organs be denied?
STOCKS: That's a very simple question to a very complicated process. And I'll be very brief. To be ape deceased donor, so after you pass, you can donate your organs, the brains have to have completely died. When a person has died of something call would glioblastoma, there is great worry on the transplant recipient's side that a cancer could be transmitted. It's very rare. But it can happen. Of course, I don't know Ian's situation, and I'm so sorry about your wife. When a person becomes an organ donor after death, they have to have been on a ventilator, their brain has to have died, and they still have to be heart beating. So it's a really rare occurrence, which is why the work that Tammy wright does at sharp is so important because it takes some of those people off the list so that the people on the list have a better chance of getting transplanted.
CAVANAUGH: Tammy, how does receiving a kidney from a live donor improve the transplantation process for an organ recipient?
WRIGHT: As Lisa said, it decreases the amount of people that are waiting for a deceased organ. Also, living kidneys usually last longer than a kidney from a deceased person. So we're talking probably 15-20 years with a live donor kidney -- 10-15 with a deceased donor kidney. So it is great for a patient who is young, line Mustafa is in his early 20s. Hopefully this kidney is going to last him another 20 years. This is his best chance of having a normal life.
CAVANAUGH: Tammy, I think listening to Ian's story and his wife so altruistically, if one can use that word here, as she was dying wanted her organs transplanted. It didn't matter to her what it was. She wanted to donate. I think it's so frustrating when people hear that sort of thing, knowing how many people are waiting for organs. And I asked Lisa a while ago, she said you were the better one to ask for this. What is the life like of someone who is waiting to have, let's say, a kidney transplant?
WRIGHT: Most often they're on dialysis. You can have dialysis either through blood or through abdominal dialysis. So with the blood dialysis, they are hooked to a machine 3-4 hours three times a week. It usually makes them very tired. It's kind of like a roller coaster. One day they feel one day they don't. If they want to travel, they're going to have to figure out dialysis wherever they may be going. If it's the tummy dialysis, then that way they can do those things at home.
CAVANAUGH: Lisa, it seems that even though your organization donate life California has been formally focused on getting organs from people who are deceased, now you're starting with the idea that perhaps these chains of living donors isn't also a viable way to go. Tell us a little bit about how you're changing and adding that to your donation formula.
STOCKS: Absolutely. At donate life California, we are super excited about the idea of creating this altruistic donor registry so when someone like Rick who wants to do this doesn't have to convince a hospital that they can be an altruistic donor. We'll have a wonderful, easily accessible website that all of the information on it, they can go through a screening process to just screen if they were potentially could be a donor or potentially could not be a donor. And they'll be given the phone numbers of the centers that are doing that type of transplant or given the option of someone to call them back from the transplant centers. And if we can get those people on the list, it'll create more and more chains, which will save more and more lives. And it will double the possibility of donations. So we'll save those lives of the people that get transplanted, but we'll also be able to save more lives from deceased donor organs that can be used for those people on the list also.
CAVANAUGH: As Tammy described this process of someone who needs a transplanted organ, but their loved one can't donate to them, so their loved one will donate to somebody else, that sounds awfully complicated. Who keeps track of all that?
STOCKS: That's the national donor registry. They really have done a fantastic job of being able to listening all of these centers and people. And it is super complicated. And I bet that Tammy really enjoys being a part of that.
WRIGHT: Garret hill who is the founder of the national kidney registry decided to do this because his daughter needed a transplant. And she had the smartness to be able to figure out the software. So right before I walked in here, I was on a phone call doing a donor exchange. We received a kidney from a altruistic donor from Madison, and transplanted one of our patients. Her husband is in turn going to donate a kidney to UCLA. And there's about six or seven people in that chain. And I'm also going to be getting a kidney back from St. Barn bus. And that recipient's son is going to donate a kidney to UCSF. So it's amazing how we can all get-together as a national group of transplant centers.
CAVANAUGH: Does anybody ever back out of the commitment?
WRIGHT: Very rarely.
CAVANAUGH: Rick, you're now part of a study on altruistic organ donations. What did the researchers want to find out from you?
RUZZAMENTI: They're trying to figure out if there is any difference between the normal population and somebody who's willing to altruistically donate an organ.
CAVANAUGH: And so what have they put you through?
RUZZAMENTI: They had me in an MRI machine for an hour and a half, and they asked me questions trying to spark empathy in me towards others, to try to read my brain waves. And then I did probably another five hours of psychological questioning on a computer and verbal to try to just find out how I would react with strangers or people that I didn't like. And filled deal with them, just the kind of questions to try to trick me intoes -- how I would treat them, and how a normal person on the treat, who doesn't altruistically donate an organ how they would treat these people.
CAVANAUGH: And are you different from a normal person on the street?
RUZZAMENTI: Well, everybody's different. Not everybody's willing to donate an organ. So I'm different in that area. But I don't -- I don't think I'm that, any better than anybody else.
STOCKS: You know, Maureen, we consider him a hero at donate California.
CAVANAUGH: I'm glad you said that. Rick, thank you so much for speaking with us.
RUZZAMENTI: Okay. Thank you.
CAVANAUGH: Lisa stock, president of donate life California, and Tammy wright, transplant specialist at sharp memorial hospital. Thank you both for speaking with us today.
WRIGHT: Bye, thank you.
STOCKS: Thank you.