Difficult Conversations Podcast
Lessons I Learned as an ICU Physician
Episode 184 | May 22, 2023
Giving the Gift of Life
Frank Mara, Matt Cavanaugh and Ned Brooks
Vice President of Community Relations for the New York Giants, President of the National Kidney Donation Organization, Founder and CEO of the National Kidney Donation Organization
Today, you’re in for a real treat because Dr. Orsini and Liz Poret-Christ are having a superstar loaded episode! This episode is about kidney donation. Liz shares a personal story about her daughter’s unlikely friendship with Frank Mara, Vice President of Community Relations for the New York Giants, and how he’s in need of a kidney transplant, which he’ll talk about with us. Also, on the list of superstars joining us is Matt Cavanaugh, an active duty US Army Strategist and President of the National Kidney Donation Organization. In 2022, he became the first living kidney donor to finish the full four deserts race in one year. Matt donated his left kidney in 2021 to a stranger and started a donation chain that facilitated eight transplants. Our next superstar is Ned Brooks, who’s the Founder and CEO of the National Kidney Donation Organization. He is a non-directed kidney donor who kickstarted a chain of three transplants in 2015. The organization has facilitated numerous transplants and helped find living donors for patients in need of a kidney transplant.
We start with learning about the National Kidney Donation Organization. They discuss the barriers to kidney donation and how the organization supports potential donors throughout the process and dispel misconceptions about kidney donation and discuss the physical recovery time. They explain that being a donor can be like an insurance policy for oneself, as donors move to the top of the list should they ever need a kidney later in life. Ned touches on the process of what happens after you donate your kidney. Matt shares his experience of becoming a sponsored athlete after his kidney donation and emphasizes that kidney donation has been a second wind to him. Ned discusses the differences between directed and non-directed donors and explains that non-directed donors often feel a deep sense of gratitude. Matt shares his most difficult conversation when he faced discussing his decision to donate with his family, particularly his wife. Ned tells us the story of the young mother that received his kidney and what happened.
We also have Frank Mara joining us. He shares his story of how he found out he needed a kidney transplant and meeting Ned, who’s been a godsend. Frank tells us his most difficult conversation, which was explaining to his kids what was going on. He’s had so much support from family and friends and after sending out emails asking for a kidney donation, many people have registered to donate, but he’s waiting to see if there’s a match. We’re all hoping for great news soon, Frank!
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Matt Cavanaugh (1s):
The reality is when you think about it rationally donation makes a lot of sense. So when you choose to donate a kidney and in your mind you’re worried that someday you might need one, by virtue of my having donated by virtue of Ned’s having donated, should we ever need one someday, we go right to the top of the list. So it’s almost like an insurance policy for yourself. However, in over a decade, the National Kidney Registry, which is a close partner that we work with often has facilitated over 7,000 transplants, which is to say 7,000 people have donated into their system.
Matt Cavanaugh (47s):
Zero of them have come back and said, now I need a kidney later in life.
Welcome to Difficult, Conversations Lessons I learned as an ICU physician with Dr. Anthony Orsini. Dr. Orsini is a practicing physician and president and CEO of The Orsini Way. As a frequent keynote speaker and author, Dr Orsini has been training healthcare professionals and business leaders how to navigate through the most difficult dialogues. Each week you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members, or someone who just wants to learn to communicate better, this is the podcast for you.
Liz Poret-Christ (1m 39s):
Welcome to another episode of Difficult Conversations Lessons I learned as an ICU Physician. My name is Liz Poret Christ. I’m the Managing Director of the Orsini Way and I will be co-hosting today’s episode. Today we have a very special episode. I know you’re thinking that all of our episodes are special and they absolutely are, but this one feels very special to me. In order to set up the introduction of guests, I wanted to share a story with you. In 2010, my daughter Annabelle and I were guests at a celebrity golf outing. Children with cystic fibrosis like my daughter Belle, were paired with celebrities to spend the day having fun while the guests got to know children with CF.
Liz Poret-Christ (2m 21s):
While in some lucky turn of events, Belle was paired with members of the Mara family. Now, if you aren’t from the New York area or you are in New York football fans, you may not know who the Mara family is. This year, the Mara family will celebrate their 99th year as owners of Tony and my favorite football team, the New York football Giants, one of the most storied franchises in NFL history. Frank is one of the 11 children of Wellington and Anne Mara and serves as Vice President of Community Relations for the New York Giants. But to my family and especially to Belle, Frank Mara is her BFF, her best friend Frank.
Liz Poret-Christ (3m 4s):
Since 2010, they have shared a special friendship. She roots for the team like they are old friends, updates Frank on her school and lacrosse, successes and failures, and always looks forward to the next time she sees her BFF. Ever encouraging Belle to be her best, supporting any fundraising efforts to find a cure for cystic fibrosis and overall cheering each other on, Frank and Belle’s unlikely friendship has changed the trajectory of my family’s life. So when it came to my attention that Frank was in need of a new kidney, I knew that we could help bring awareness and attention to this important topic. But before I invite Frank to join us, I wanted to introduce you to our other guests.
Liz Poret-Christ (3m 45s):
Matt CavanaughNed is an active duty US, Army Strategist and President of the National Kidney Donation Organization. The organization is dedicated to providing support and protection to potential living kidney donors and their families during the donation process. He’s also a professor at Arizona State University, a co-founder of and senior fellow with the Modern War Institute at West Point and has twice earned the Bronze Star medal as well as the Combat Action badge for his service in Iraq. Matt has been in active fitness and athletics his entire life, having been named US Army Athlete of the Year in 2009 and in 2022, the National Kidney Registry sponsored his greatest challenge to date to be the first living kidney donor to finish the full four deserts race in one year called the Grand Slam.
Liz Poret-Christ (4m 37s):
Matt successfully completed his Grand Slam becoming the first to do so on one kidney only months post-donation shattering the misperception that kidney donation imposes physical limits on its donors. Matt donated his left kidney on September 15th, 2021 to a stranger and started a donation chain that facilitated eight transplants. My favorite quote of Matt’s is this, “when my life depended on it, someone came for me”, he said, referring to his time in a 2003 military conflict. “18 years later, I paid that moment forward. I was the cavalry. I saved someone’s life and then some”. Thank you for your service, Matt, and welcome to the show.
Matt Cavanaugh (5m 18s):
That was very kind of you. Thank you.
Liz Poret-Christ (5m 20s):
Now this is just a superstar-loaded episode as we also have Ned Brooks on. Ned Brooks is the Founder and CEO of the National Kidney Donation Organization. Ned himself is a non-directed kidney donor who kickstarted a chain of three transplants. in 2015, The organization has facilitated numerous transplants and helped find living donors for patients in need of a kidney transplant. Thank you for joining us Ned.
Ned Brooks (5m 46s):
Thank you. Liz
Liz Poret-Christ (5m 48s):
Ned. Matt, can you tell us a little bit about the National Kidney Donation Organization and how it differs from the National Kidney Foundation?
Ned Brooks (5m 57s):
Sure. I started the National Kidney Donation Organization shortly after my donation in 2016 on the premise that no one could speak to a potential donor with the authority of someone who was donated him or herself. And that was the basis for the formation of the organization. And since then we’ve grown to become the largest living donor advocacy group in the country. We have over 50 living kidney donors who mentor donor candidates at 40 transplant centers across the country. This year we will reach out to over 20,000 potential donors.
Ned Brooks (6m 41s):
And we expect that will distill down to roughly five to 600 actual donations being completed.
Liz Poret-Christ (6m 49s):
I read on your website there’s over a hundred thousand people waiting for kidneys and that potential donors are often faced with barriers that may stop them from stepping up. Can you talk to us, about what about what some of those barriers are?
Matt Cavanaugh (7m 2s):
This is Matt. Sure. The first barrier is mental. The question that we so often hear from prospective donors is, if I donate a kidney, will I face some sort of physical hardship, physical limitation? Will I be less physically than I was pre-donation? And that’s part of what all that running this last year was about. I was to help people better understand that when you donate a kidney, your body only needs one kidney to be healthy and to kick on with life. And the more people that know and understand that I think the more people that will donate. Other questions that we hear are, can I drink? I had a, a young guy who’s 18 years old said, can I have sex if I donate my kidney?
Matt Cavanaugh (7m 45s):
The answer is yes, and go get it. The second barrier, I think is the frictions of life in the sense that so many of us work in different fields and varied environments. People that work in physical and manual labor for example, have really good questions about the donation and the time it takes to recover. And then other people have financial challenges, for example they may entirely depend on that next paycheck. And there are programs out there to support those perspective donors. And that’s why mentorship is so powerful when it comes to this. First for that initial line of questions about physical health, but then about the particularities and practicalities of donation.
Matt Cavanaugh (8m 30s):
And what we find is mentorship is successful because we hold those folks’ hands, And, we help them get to do frankly what is for so many of them the best thing that they’ll ever get a chance to do in their lives.
Dr. Anthony Orsini (8m 43s):
Matt, one of the things that I hear all the time is if I give you a kidney, I won’t have a spare. Yeah, right. One of the misconceptions, although there are rare diseases and trauma where one kidney would get injured and not the other. What I think is a common misconception is that if you have kidney disease, both kidneys are affected generally equally, and they’re both going. So it’s not like you have kidney disease on the left side. It is very uncommon. And you say, okay, now I got a spare. Have you found that’s been a big one? Like I need a spare.
Matt Cavanaugh (9m 15s):
Yeah. Yeah. and it, what’s funny about it is if you think about it logically, if that’s the way kidney health worked, if you just had one that went bad and the other one just kicked in like an additional jet engine on the aircraft, cuz I think that’s the mental model people apply. If that’s the way it worked, then we wouldn’t need kidneys to donate, right? Everybody would be fine, they would have their spare. The reality is when you think about it rationally donation makes a lot of sense. So when you choose to donate a kidney and in your mind you’re worried that someday you might need one, by virtue of my having donated by virtue of Ned’s having donated should we ever need one?
Matt Cavanaugh (10m 1s):
Someday we go right to the top of the list. So it’s almost like an insurance policy for yourself. However, in over a decade the National Kidney Registry, which is a close partner that we work with often has facilitated over 7,000 transplants, which is to say 7,000 people have donated into their system, zero of them have come back and said, now I need a kidney later in life. So when you get screened to be a donor, they are slapping a gold star on you. They are saying you are gold plated health and it’s very unlikely that you will ever need a kidney.
Matt Cavanaugh (10m 45s):
And to put a number on it of 7,000 people that have come before myself and Ned, none of them have needed a kidney later in life.
Ned Brooks (10m 53s):
This is since 2008. Yeah. So that’s quite a track record.
Dr. Anthony Orsini (10m 57s):
Liz, I know you have other questions, but Matt did touch upon this. So you’re talking about people missing work, et cetera. Just quickly, can you just tell us in a nutshell, how does it work for the time that I say, Hey, I want to donate a kidney to what happens then once I have the surgery, when am I back at work? If I’m a dust guide or if I am a on my feet kind of guy.
Ned Brooks (11m 20s):
So when you donate your kidney, depending upon the type of work you do, if you have a desk job and you work on your laptop, you can be back at work essentially as soon as the anesthetic wears off because it’s, this call is just among us and I’m sure it’s not gonna go anywhere, don’t tell my living donor coordinator this, but I got out on a Friday at age 65 and not that weekend, but the following weekend I went to my college reunion and partied like an animal. So you can
Liz Poret-Christ (11m 49s):
Don’t tell anybody.
Ned Brooks (11m 50s):
Don’t tell anybody. Everybody’s got their own recovery rate. The one thing you really shouldn’t do is to lift more than 10 or 15 pounds for a number of weeks. I was back with my trainer lightly working out after two and a half weeks and pretty much back full-time after three and a half. But as I say, everyone is different. The program that Matt alluded to is one where the National Kidney Registry will provide a suite of protections, they call it donor shield that provides reimbursement for out-of-pocket expenses. And that is including now things like childcare, elder care, that kind of thing.
Ned Brooks (12m 31s):
And in addition, they will pay lost wages for a certain amount for a period of weeks. So if they try to do what they can to take away the disincentives that pop up in the process. The problem with transplant is that these transplant centers are overworked and they’re understaffed for the most part. Covid hit them very hard and it’s a complicated process to be a donor in the first place. And then when you add on the complexities caused by covid, there are some real disincentives that pop up along the way and and our main job really is to try to smooth those out, get those out of the way for people and let them carry on in as smooth a way as they can.
Matt Cavanaugh (13m 15s):
And if I could amplify that, most people spend one night in the hospital post their donation, some people spend a second night, you go back for a quick check with the transplant surgeons to make sure the abdominal stitches are looking good and healthy and that sort of thing. And then that you’re pretty much on your own in the sense that they give you the best advice that there is. Take things as you feel your body is able to handle it. I got up off the table and started walking as much as possible. That’s great advice to just sort of get your body back moving the normal way that it does. I’m a runner and by day 27 I started jogging again and at the three month mark I took my two daughters skiing for opening ski day, which as you can imagine is a good test.
Matt Cavanaugh (14m 4s):
You’re moving your body, you’re moving your torso quite a bit. And I didn’t even think twice about it. And that really is the common pathway for most donors. The first couple of days are a little uncomfortable, sometimes pretty uncomfortable. And then after that it’s a quick recovery.
Liz Poret-Christ (14m 19s):
Now Matt, I mentioned earlier about some of your pretty unbelievable athletic endeavors. Could you tell us a little bit about how that may or may not have changed post-transplant?
Matt Cavanaugh (14m 29s):
So I like to think of it like my donation was a second wind. And I’ll start with just the premise that most people when they think about kidney donation, they focus on the subtraction, they focus on what gets taken out of the body, what you’re giving up and what I think they so much miss is what gets put in the addition. Frankly, the multiplication, the amplification, which is to say it feels very good to know that you have done something meaningful to support someone else in need. And for me, I grew up playing hockey. I’m from Minnesota, I’m a walking stereotype in that way.
Matt Cavanaugh (15m 10s):
Later in life I picked up running and after my donation I felt really empowered to want to go out and live it to the fullest in that sense and reach for more difficult things and six weeks post donation. So my donation was on September 15th and before the end of October, so six weeks later I sent a message to the National Kidney Registry. They had expressed some interest in a sponsored athlete program and I said, why don’t we take a try at this? Which as you mentioned in the introduction, the four deserts Grand Slam, it’s a race series over the course of about seven months.
Matt Cavanaugh (15m 52s):
Each race is 155 miles over six stages self-supported. So you’re carrying all your own calories and gear and clothing on your back. The race only provides water and a tent for shelter. The idea was to demonstrate that the body’s resilience post kidney donation. So it’s like running six marathons in six days in the desert. And my first race was in Namibia. The temperatures hit 131 degrees Fahrenheit. One of the runners on stage three that day that got so hot had to drop out because he couldn’t pee.
Matt Cavanaugh (16m 33s):
His kidneys weren’t functioning properly. I was able to hold on through that day and through that race and finished fourth. And that very much was to me very meaningful. Not just personally, but just as a statement that, hey look, I went out and did pretty much the toughest thing you can sort of test to stress your kidneys seven months after kidney donation. And I did fine. In fact, what I found over the course of the next three races is that I had all the runners injuries that you would expect from someone undertaking that many miles in those kinds of conditions. The one thing that was never a bother and did not slow me down was my kidney.
Matt Cavanaugh (17m 17s):
My remaining kidney did fine and I got better over the course of the year and won the final race of the series in Antarctica. To be able to say that you won an ultramarathon on Antarctica is something I’ll probably put on my tombstone. But also, like you mentioned, And, I was, the first person with a single kidney to do the series, but also the fastest American to ever do the series. Again there is no limit on what you can do with one kidney. And I say that most people, I get it, this is absurd. I’m not gonna go run a race in the desert. I’m just pointing out any other physical activity underneath that you should be able to do.
Matt Cavanaugh (17m 58s):
That to me was the most important and meaningful part of the whole thing. And. so yeah, kidney donation has been a second wind to me, a reason to get up and run another mile to keep doing this.
Liz Poret-Christ (18m 12s):
Dr. Anthony Orsini (18m 12s):
That’s crazy. Yeah, it’s just I ran a 5K and I thought I was superman. So
Matt Cavanaugh (18m 19s):
Kidney donors though are all kinds of folks. Ned donated when he was 65. He’s in his early seventies now and he still sails and shoots. We have gardeners, we have folks that walk, like for example, I’m running the Salt Lake City marathon this weekend on Saturday And. we have other folks that are kidney donors that are coming out to walk the 5K and then just to be at the expo and talk to people about donation. It’s a wide variety of folks that donate kidneys. My share of the task though was to show that hey, for those that are younger and more ambitious about physical activity, you can donate too. And those are the healthiest kidneys we’re looking for frankly.
Dr. Anthony Orsini (18m 59s):
Liz Poret-Christ (18m 60s):
In a previous conversation you had explained to us about directed and non-directed donors, could you tell the audience a little bit about that?
Ned Brooks (19m 8s):
Sure. And there is a distinction in some very important ways. A directed donor is someone who donates to a friend, a relative, a loved one. And there is a certain amount of relationship that is built into that process, both in the good and the bad. It’s a beautiful thing to be able to donate your kidney to a loved one and have that bond between you going forward. Occasionally it becomes problematic when perhaps the relationship was troubled to start with and there’s an expectation that this act will mend things and sometimes it doesn’t and things get a little bit rough. So there’s that aspect to the direct donation side of it.
Ned Brooks (19m 53s):
Non-directed donors are a very different breed. And I say that because in the US in the year that I donated, there were fewer non-directed donors than there were people who had visited the space station. The number of non-directed donors each year is in the 300 plus or minus range. And those who are non-directed donors who decide they want to donate to a stranger, we seem to share characteristics that are very strongly felt by us as a group. And one of them is what we affectionately call the lightning strike where we’ll hear about living donation for the first time and it’ll be revelatory.
Ned Brooks (20m 38s):
We’ll say, well of course I could do this. Why wouldn’t I do this? I’ve gotta do this. This is easy. I’ve got two kidneys, I only need one. Anybody can do this. Why doesn’t everybody do this? This, you have that kind of a natural response to it and you go on to become a donor. There are so many aspects to non-directed donation that are unique, but one of them for sure is what Matt alluded to earlier, is a very deep sense of gratitude that we all share. And why that is, I’m not exactly sure, but it is a very powerful feeling that lives with me every day that I’m so grateful for having had the chance to do this and what it’s meant to my life.
Ned Brooks (21m 21s):
And you talk to any non-directed donor versus everyone will say the same thing.
Dr. Anthony Orsini (21m 26s):
It’s one thing that I’m gonna take and I’m a physician and I didn’t know this and I think it was Matt that said this, I did not know this, but one of the most powerful things that we’ve said so far on this podcast is that if you give a kidney, you donate a kidney and you have kidney disease later on you go to the top of the list. That’s powerful. like that actually hit me. I mean as a physician, I mean I do neonate some premature babies. So kidney donation is not something that I deal with. But for all those people that are so afraid, what if I need one? It’s almost like donating your kidney now is an insurance policy for later on.
Ned Brooks (22m 4s):
Not only that, but you go to the top of the list through the National Kidney Registry, you go to the top of the list for a living kidney, not just a deceased kidney. And as we mentioned earlier, for all the reassurance that gives you over all those years, the National Kidney Registry has been doing that nobody has had to cash that in yet.
Dr. Anthony Orsini (22m 23s):
Yeah. But it’s a powerful thing to know and to get out there, And, we spend all this money on life insurance, we spend all this money on disability insurance. We spend all this money on homeowner’s insurance, donate your kidney now. It’s almost like a kidney insurance for next time. I love that.
Liz Poret-Christ (22m 38s):
Now we’d be remiss if we didn’t go back to one of our original questions that we ask every podcast guest. So we’re gonna ask you guys in a little bit different way and normally Dr. Orsini or I warn the guest of this question, but we chose not to do that today. So because the name of the show is Difficult Conversations, I understand that both of you have each had Difficult Conversations with a family member or a loved one when telling them about your idea of donating your kidney. Can you tell us a little bit about each of those Difficult Conversations and how you got through them?
Matt Cavanaugh (23m 13s):
I would say by far and away, this was the toughest part about donation for me. So I first learned of the idea or the opportunity to donate 15 years ago. And I know that because it was right before I met my wife and when we met and, we got serious I mentioned this is something that I’m might want to do someday. And. we sort of put it on the shelf, it just sat there for years and years. And when it came back off the shelf and I raised it, it was still in the pandemic. We are gifted with two wonderful daughters at the time I think they were 10 and six, 10 and seven, somewhere around there.
Matt Cavanaugh (23m 59s):
And I said, Hey, I’m interested in doing this. And I actually cold-called Walter Reed, the National Military Medical Center, it took him a few days to get back to me. I sort of started the process and from the get-go she was deeply uncomfortable with the idea for a variety of reasons. First and foremost, when you’re married with children, it’s not just you on the table, it’s them as well. And I respected that and I felt like that was something that was worth acknowledging and I, I did my best, although I did pretty poorly frankly at respecting that. The second thing is it’s a risk, a certain risk to yourself for someone you do not know.
Matt Cavanaugh (24m 46s):
And for a family member that is incredibly difficult to understand, you are risking our family for someone we don’t know and human beings are irrational. I did my best to sort of dig into the numbers to better understand the risks of this kind of a procedure. And what I found is that kidney donation for the donor is relatively low risk compared to the universe of surgeries out there, particularly based on the health of the donor. For example, the numbers that I came to were roughly one in 10,000, a risk of death, one in 10,000, somewhere in that space, which is roughly akin to the risk of death if you go get into a canoe and go canoeing.
Matt Cavanaugh (25m 29s):
Another way of expressing it is we have two children and both times my wife delivered those babies for us, the risk of some sort of a severe complication or death was likely higher than for this procedure. That being said, again, a certain risk even if it’s low, but for someone we don’t know. and it was a rift in my marriage, probably one of the biggest rifts when I left for the airport. So my surgery was in September, so our kids were in school. My wife couldn’t come with me to be my helper for post-surgery. And I can tell you the, the departure was not entirely warm.
Matt Cavanaugh (26m 12s):
It was pretty much the opposite of that. So there was that moment after I departed for the airport to go to Washington in that 24 hours or 36 hours before I put the gown on. Where I honestly was wondering whether or not when I woke up, if the loss that I was worried about, for example, complications on the surgical table, I was actually less worried about those complications than I was the rift in my marriage. And thankfully when I woke up when things were physically okay and after a little bit of time, time heals wounds, both the physical recovery and the relationship recovery went very well.
Matt Cavanaugh (26m 55s):
And again, it did take some time. I think the difficulty of it was wrapped up in the potential consequences. And when those consequences did not come, all was clear. Now it took me a while. I actually was very comfortable with not knowing who my recipient was or is. However, probably about seven or eight months post-surgery, I sort of realized that it would be very good to get to meet or know my recipient for my wife and for my family because then they would at least get to see the benefit that came for that momentary risk. By the way, I’ve completely set aside the fact that we deliberately chose not to tell our kids.
Matt Cavanaugh (27m 40s):
So dad was just going on a business trip when I went. and it wasn’t until I got back that we told them, cuz obviously I had to tell them to hug me a little bit differently. But honestly the kids took it completely in stride. That was no issue whatsoever to them it was just kidneys are important to people. Someone needed a kidney, dad gave a kidney, they would come to me when I would go to blood donation, for example, my younger daughter had the best question to ever heard in a blood donation facility. She asked “Dad, when you give someone blood, do they drink it? Is that how they take blood?” So they actually just rolled with the punch and just said, you know, they were, they were great with it.
Matt Cavanaugh (28m 21s):
But you know, the sum total of the experience was honestly that was the most difficult part of the entire donation for me and my family.
Dr. Anthony Orsini (28m 29s):
How about you Ned?
Ned Brooks (28m 30s):
I had a much, much less of a traumatic experience doing this I wasn in a car listening to a podcast about kidney donation with my wife And. we were both listening to the same thing and I got, we got through with it and I turned to her and I said, this is something I have to do. And she says, I know I’ve known you for a long time. Go ahead. So that wasn’t the problem. The the issue. And it’s what Matt’s talking about here is exactly one of the major disincentives to potential donors and that is family members who get very upset at the prospect of risking the family for a stranger. So I had a similar situation, not nearly as severe, we’ve got three children.
Ned Brooks (29m 12s):
I told them about it. My two son’s reaction was, God Dad, that sounds great go for it. My daughter’s reaction was, what if I need a kidney? And that’s not uncommon at all. At which point 1 of my sons turned to her and said, oh, stop it. I’ll give you mine. And then that was the end of that objection. That really wasn’t an issue. But I’d like to do a little segue here. My donation was to a young mother of two small children and she was highly sensitized, And, I was literally one in a million match with her. And she had a disease that the transplant center thought they had under control and so after I donated to her, her life turned around.
Ned Brooks (29m 55s):
Things were absolutely great for about the first three or four months and then they started to go sideways and then they went south and my kidneys died in her. And I was so devastated by this that I spent three years trying to find somebody who would be what they call a voucher donor who would donate and then give her the chance to cash in that voucher and get a kidney. When that one perfect stranger came along and in fact, that’s exactly what happened to three years, almost to the day And, we got the second kidney for her and she’s doing great.
Liz Poret-Christ (30m 32s):
Wow, that’s a great story.
Dr. Anthony Orsini (30m 33s):
Boy, I really kind of speechless because it’s a special kind of person. I can do this. I’ve learned even as a physician a lot like going to the top of the list and but this is a real issue. Many of us do know people who have been on dialysis. It is a lousy life to lead. It’s difficult. And you two have given people a chance to live a normal life and this is something that’s really needed. Thank God we have the science that we can do this, put a kidney in someone else and have it work. And I think one of you said it well is you really only need one. So I think this is gonna be an excellent podcast.
Liz Poret-Christ (31m 12s):
I couldn’t agree with you more, Tony. I think the information that Ned and Matt have shared with us has been so incredible and given us a perspective I don’t think I would’ve ever known about. But I think it’s equally important to hear from Frank about what it’s like to be one of the people waiting for a donation or for someone to step up. So thanks for joining us Frank.
Frank Mara (31m 36s):
Liz Poret-Christ (31m 36s):
Would you mind telling us a little bit about yourself so the audience can get to know you and how you first found out that you needed a kidney transplant?
Frank Mara (31m 45s):
Yeah, well I’m one of 11 siblings. I’m number five. I’m the youngest boy. Got six younger sisters. That’s
Liz Poret-Christ (31m 53s):
A lot of sisters.
Frank Mara (31m 54s):
That’s a lot. I have one older sister too. So seven sisters. And the day this all started, believe it or not, was January 14th, 2001. It was the day of the 2000 season NFC championship game. Giants playing the Vikings. And I sit on the field during the games and at halftime I just had these terrible stomach pains, And. so I missed the whole second half. The trainers were giving me IVs and pain medicine. They thought I maybe had kidney stones. So it turns out weeks later I had all sorts of tests and I found out I had an aneurysm in my left kidney.
Frank Mara (32m 35s):
So I went to many doctors and there was one up in the Lahey clinic in Boston who said we should operate. So I had the kidney fixed. They took the aneurysm out and did what was called an auto transplantation. They put my left kidney in my right groin area, which is very common for kidney transplants. I didn’t think anything of it after that, even though it was a 12 hour surgery. So it took quite a while to recover. But everything seemed to be fine. I started seeing a nephrologist, which is a kidney specialist, Dr. Stewart. So he’s affiliated with Weil Cornell probably seven or 10 years ago. And I’d get my blood work tested, my urine tested, that’s very important.
Frank Mara (33m 19s):
And everything seemed to be fine. And he’d never let on that I was in any kind of peril or anything. He’d always would say, okay, you’re gonna do great, you’re gonna do great. Which I thought meant I have nothing to worry about because I’d go into that office and I was, one of the younger patients in there, I always thought I looked a lot healthier than anybody else who had those issues. So finally, and this is part of the difficult conversation, this is probably the only difficult conversation I had. I had to go in to see Dr. Sol in January to get approval from him to have my knee replaced, which I’d had on February 14th. And he did all the tests and everything and he called me, said, listen, you’ll do fine, you’re gonna do fine.
Frank Mara (34m 1s):
And I finally said to him, listen, you keep telling me I’m gonna do fine. What do you mean I’m gonna do fine? He said, well, you’re gonna need a kidney transplant within the next two to three years, but you’re gonna do fine. I said, well that’s great. I’m gonna do fine. So that’s when I had to start thinking, what the heck am I gonna do now I gotta tell my wife and I gotta tell my kids. So it was kind of tough. But I hooked up with Ned Brooks and his organization and he’s been a godsend. He walked me through every step of the way, made it very easy for me. And as I said, I come from such a large family with 10 siblings, they’ve all said they would donate if need to, and lots of nieces and nephews.
Frank Mara (34m 45s):
I have four sons, so I’m in actually a good position because I think I’m gonna get a, it’s not a perfect match, as close to perfect as we can just from one of my relatives hopefully. And that’s the goal.
Liz Poret-Christ (34m 57s):
So that of course is the whole thing with organ donation, right, is you have the blessings of a huge family and, so many people that love you, correct. But there’s a hundred thousand people waiting that don’t have that benefit. And that’s why directed and non-directed donors are so important because you just never know how that one donation can impact so many more lives. And I can see that you are getting a little choked up talking about that experience. And I guess my question for you is you really had no idea that transplant was on the table until that conversation about your knee replacement?
Frank Mara (35m 36s):
Not really. I mean. He just kept saying, you’re gonna do fine. And I really didn’t know what he actually meant.
Liz Poret-Christ (35m 43s):
So communication is everything, right?
Frank Mara (35m 45s):
Yeah. Yeah. And I’ve been going to him for so long and he’s a brilliant doctor, but like most brilliant doctors, he’s a little eccentric and I hope he doesn’t see this,
Liz Poret-Christ (35m 55s):
We will make sure not to tag him in the show notes.
Frank Mara (35m 60s):
But yeah, really had no idea. Especially the first few years I saw him, I didn’t think anything that would come to this. But finally in January he gave me this lovely news and it’s been on my mind ever since. But I’m very confident, I’ve a great support system and I have so many people who have come forward, not just my family, a lot of friends, I had to send out an email to everybody, which Ned helped me with cuz that was very hard to do, to ask people to give me a kidney. It’s not like asking for $10 or something. But I’ve had so many people register already, I don’t know how many, but I know they’re full. Some of my friends have said they’re not taking any more applications, they’re putting people on a waiting list until they go through the first batch of people.
Liz Poret-Christ (36m 44s):
That’s great. And I have to be honest, the first thing I thought when I got that email from you, knowing you for some time, is how hard that must have been for you. Because I know you’re a very private person and you are a very shy person really. And that must have been really hard. So is there one conversation that you had to have about your situation that really stood out to you as being the most difficult?
Frank Mara (37m 9s):
I think just explaining it to my kids. Yeah, that was hard because they know I go to see a doc, I go to a lot of doctors, and my wife she doesn’t go to any doctors. I go to all the, I told her I go to all the doctors, so none of you have to go to any of the doctors. But just to explain to them, you know what my situation was. But I tried to reinforce to them that we’re catching this early. We’re gonna do a preemptive transplant and that means I get a transplant before I have to go on dialysis.
Liz Poret-Christ (37m 40s):
That’s the goal.
Frank Mara (37m 41s):
Yeah, I haven’t heard any good things about dialysis. I know it can save people’s lives, but once you’re on it, it’s very debilitating.
Liz Poret-Christ (37m 47s):
That’s what I’ve heard as well.
Frank Mara (37m 49s):
Yeah. I don’t want any part of that.
Liz Poret-Christ (37m 51s):
And that’s part of the reason why we felt that this was a great time to do an episode about organ donation and specifically kidney donation because we’re hoping the same for you as well, that we can get you something before you really need it. Right? A lot of people don’t know anything about organ donations, so that’s how this episode came to be. But I can completely relate to you having that conversation with your kids because one of my kids in particular, and when I had to tell her about my cancer diagnosis, the first thing she said wasn’t, mommy, are you gonna be okay? It was, I knew you’ve been lying to me because I was watching you on Life 360 and you’re always at the hospital.
Liz Poret-Christ (38m 35s):
So not my finest moment.
Frank Mara (38m 36s):
Yeah, but she’s way smarter than us. We, you can’t pull anything over on her.
Liz Poret-Christ (38m 41s):
No. So we talked about how hard it is to ask strangers for help. So we’re really grateful to you for your willingness to share your story and the difficult conversations around that. And we’re hoping for all good news and a great outcome for you. So thank you Frank for sharing your story with us. Thanks
Frank Mara (38m 59s):
Thanks much and say hi to Belle for me.
Dr. Anthony Orsini (39m 2s):
If you’d like to help Frank out or find more about how to be a director or non-directed kidney donor, please visit NKDO.org or to find if you’re a candidate, visit the National Kidney Registration and we’ll go ahead and put all those links and Ned and Matt’s information on our show notes. We know most of you are listening to these podcasts while you’re driving, so we’ll put all those links down for when you go home. It will all be on our website at Orsini Way.Com. I think this has been fantastic. I want to thank both of you, Liz, you’re so much better host than I am, so I think I’m just gonna start handing this over to you, but thank you so much.
Dr. Anthony Orsini (39m 42s):
It’s always a pleasure. Matt and Ned, thank you again. We really appreciate this
Liz Poret-Christ (39m 47s):
Thank you so much.
Dr. Anthony Orsini (39m 48s):
We’ll just keep working for you. Whatever you need. This you just two amazing people doing amazing things and thank you so much.
Announcer (39m 56s):
If you enjoyed this podcast, please hit the subscribe button and leave a comment and review. To contact Dr. Orsini and his team or to suggest guests for future podcast, visit us at the Orsini Way.Com. The comments and opinions of the interviewer and guests on this podcast are their own and do not necessarily reflect the opinions and beliefs of their present and past employers or institutions.
Dr. Anthony Orsini
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It’s All In The Delivery: Improving Healthcare Starting With A Single Conversation by Dr. Anthony Orsini
National Kidney Donation Organization
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