Today on Causepods we are switching the format up a little bit and are lucky enough to be recording live from the Spice of Life charity event hosted by Forgotten Boardwalk in New Jersey! This annual event is all about celebrating life, organ donation, living donors, and great tasting beer! During the episode we chat to a number of organizers and attendees about their part in the day’s proceedings as well their experiences with organ donation.
We hear from Seth Dolled, the Forgotten Boardwalk salesman and donor who organized this event, along with his mother Sharon. who helped put together Spice of Life. They share the story about the great gift Seth was able to give his mother when he was just 23, donating his kidney. They describe why the process that they went through together was such a life changing experience for both of them and their story is just so inspirational. We also chat to Andrea Gianini from the National Kidney Foundation and Satyra Oberfrank, a volunteer at the Gift of Life Donor program, who both dispel some rumors about organ donation and why this is such an important cause.
We hear from a number of other incredible donors including Jason Nothdurft and Whitney Place, two kidney donors that share why making this donation has actually been a huge gift to them. And we chat with Jenna Tesauro who fears she will one day need a generous gift from a living donor one day.
Lastly, we chat with the team at Forgotten Boardwalk about the beers on tap of the day, the origins of this event, and the charitable nature of the brewery as a whole.
One of the resounding messages from the day is around the relative low cost of organ donation when compared with the amount that is received. A number of our guests told us that the pain is temporary and recovery is nothing compared to giving someone the gift of life. For all this and much more, be sure to tune in for this extra special episode!
• A son’s decision to give his mother a kidney. (01:14) • A little about The Spice of Life event. (02:55) • Going about promoting living organ donation in everyday life. (05:18) • Some of the work that the Nation Kidney Foundation does. (07:23) • Lesser known tips for good kidney health. (11:25) • Jason’s story of donation to his best friend’s father. (14:03) • The impact of living donations and the temporary nature of pain. (17:45) • Whitney’s story of organ donation to her mother. (19:18) • Her experience since the surgery. (23:00) • Jenna’s family’s genetic disposition toward polycystic kidney disease. (26:17) • Some of Jenna’s favorite beers at the event! (29:05) • More myths dispelled by Satara. (30:29) • How Satara got involved with Spice of Life. (32:41) • Her experiences of donating bone marrow and a kidney. (33:45) • Which beers to be excited about at the event. (36:38) • The celebratory nature of the Spice of Life event. (41:03) • Some information on Forgotten Boardwalk and their history. (43:03) • Jamie’s favorite beers from the festival. (45:19)
And much more!
Learn more about Forgotten Boardwalk at ForgottenBoardwalk.com.
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[0:00:02.6] MP: Hi and welcome to a special edition of Causepods. I’m your host, Mathew Passy. Normally on the show, we feature one podcaster using the medium to raise awareness for a good cause. But as luck would have it, I was recently connected to an incredible charity event around the corner from my house by my good friend Joe Parto. Today on Causepods, I’m going to be doing the podcasting specifically for a good cause.
On Sunday February 27th, I was invited to setup shop and Forgotten Boardwalk’s The Spice of Life Annual Charity Event to raise awareness for organ donation. Join by the National Kidney Foundation and Gift of Life donor program. Forgotten boardwalk opened its doors to the community and featured games, delicious food from hog day afternoon.
And of course, a fine selection of specially crafted beers including a few created just for this event. This event was the brainchild of Seth Dolled, a sales guy for the brewery who donated his kidney 13 years ago to a special guest who sat down with me, Sharon Dolled. That would be Seth’s mom.
[0:01:03.4] MP: Tell us a little bit about your decision to donate your kidney and to you know, be willing to make this huge decision?
[0:01:14.3] SD1: It takes me back a little while to 1997, I believe my grandfather at the time had offered it to my mom when we found out that you know, should she ever need one, where would you get it. My grandfather ended up getting pancreatic cancer, passed away 1998 but even back then, I was, I’m just taking on. Fast forward to 2004 or 2003 when we found out she really needed one, I said take mine.
[0:01:40.4] SD2: He was 23 when he gave me a kidney, that’s pretty young age to make that decision.
[0:01:45.6] SD1: It wasn’t a decision. It was just something that had to be done.
[0:01:50.1] MP: Sharon, what was it like when you heard that your son said, just take mine. I mean, what was your feeling, what was your reaction to that?
[0:01:57.6] SD2: It was an amazing feeling because I knew I was dying and I would have died if I waited on a list, a list is very long in new jersey and New York. They tell you to go to your siblings but I had a sibling that wasn’t even interested at all. My own mother was very upset that I asked a sibling and I said, my own son volunteered, he knew it wasn’t a risk, I wouldn’t put him through that.
I did hesitate because it was my son but the doctors guaranteed me that nobody has any health issues after this and they live a full and long life because people are born with one kidneys and live and don’t even know that.
[0:02:38.6] MP: That’s fantastic. With this incredible story that you’re able to give and able to receive and have enjoyed life together now for this much time since that happened. Talk to us about how the whole Splice of Life event came to be and what you hope to accomplish here?
[0:02:55.5] SD1: The Spice of Life, the first event was in January 2015 because Forgotten Boardwalk opened up October 2014. Since the kidney donation that happened on January 26, 2003. By the way, happy birthday, I forgot to call you yesterday.
[0:03:09.7] SD2: I’m only 13 today.
[0:03:12.0] MP: Happy birthday.
[0:03:12.7] SD1: Every year I would show up to where she was working at the time at school and you know, wish her a happy birthday and give her a can of kidney beans from Goya and just as a joke and you know, the date was approaching and you know, having the facility available to us, we decided to celebrate the spice of life and just make a beer.
Just to sort of commemorate it and see if people would rally around the idea of promoting organ donation awareness. The first event went really well unexpectedly and we decided for the next year to let’s use this facility as a medium to encourage people to donate life and become an organ donor or the importance of it and just talking to everyone and why I made the decision or you know?
She now has three grandchildren that she never would have seen. There’s a lot of meaning and there’s not enough education out there. It’s an event we love doing every year.
[0:04:13.4] MP: I mean, Sharon, I’m sure you’re overwhelmingly proud off your son for this amazing decision for what it’s been able to give you.
[0:04:21.1] SD1: And disappointed that I’m drinking a beer right now.
[0:04:23.0] SD2: Too much beer.
[0:04:26.1] MP: Tell me a little bit about your impression of this event and what you hope that folks who are here will get out of it, especially if they have a chance to talk to or listen to this particular recording?
[0:04:36.7] SD2: Well, this made quite a difference in my life, I was able to continue working, I was a special education teacher, I was able to continue my life and like my son said, I have three grandchildren and when he’s around, I thank him because I never would have been there for them and to know them and this amazing thing.
It’s just absolutely amazing and I don’t know for sure but there are some religions where they’re not sure if they can donate or whatever and the education has to get out there. It really does.
[0:05:08.0] MP: You know, how do you two, outside of this event, how do you two advocate for living organ donations and you know, encouraging people to donate if they can?
[0:05:18.7] SD1: You attend a lot of conferences and I have a little decal on my car that says a ‘living kidney donor’ and every once in a while, you know, someone will ask me about it and you know, I just talk their ear off for about 10 minutes until they realize they need to disengage or you know, I point them in the right direction too if they want to learn more.
[0:05:39.0] SD2: I also have where people in the neighborhood and the surrounding areas know because it was in the newspaper, a picture of us, one of the local papers and they’ll ask me and someone’s going to call me this week, that’s waiting for a kidney.
I try to give them some information of where to call and where to try to get some information that might help them. They might not have anyone in their family that’s willing to or able to.
[0:06:03.5] MP: What other encouraging words, what other ways do you help folks that are either thinking about donating or who are about to be the recipient of this incredible gift?
[0:06:13.2] SD2: Basically, just look at the two off us and you see we’re fine and we live normal lives. Well, it’s debatable.
[0:06:18.8] MP: Yeah, Seth is making a face with the crowd right now.
[0:06:21.3] SD2: I know.
[0:06:22.3] SD1: It’s the only face I have.
[0:06:23.7] SD2: I know.
[0:06:24.3] MP: Well, this is a great event, the house is filling up quite nicely as we’re sitting here and it’s so nice to hear this kind of story that at 23, you were able to give your mother this incredible gift and as you said, she’s been around since then to see her grandchildren.
[0:06:42.4] SD2: To nag them too.
[0:06:43.4] MP: To nag them too.
[0:06:45.1] SD1: My father’s not too happy.
[0:06:48.3] MP: Well, Sharon and Seth, this is an incredible story, this is an incredible event that you’re putting on. I just want to thank you so much for your inspiration to everybody.
[0:06:55.4] SD1: Thank you for being here.
[0:06:56.3] SD2: Thank you very much. We have seen people sign up to donate so it’s wonderful.
[0:07:01.7] MP: Just one new donor can have a huge impact. But many more than that left having made a commitment to be an organ donor from that day on. To better understand how organ donations work, I spoke with Andrea Gianini, she’s Development Manager for the National Kidney Foundation’s, Delaware Valley office about their campaign, the big ask, the big give, regarding living donations like the one Seth made to his mom.
[0:07:23.7] AG: We’re here sharing information about living donations. We have a lot of people in the kidney community that are in need of a new kidney. Because that have created a platform called The Big Ask, The Big Give where we’re teaching people that neither could be, how to share their story, what their story is, where to share that ask and then people that are considering giving can have the information, the education and kind of we can squash some myths they might be thinking about making that decision to give.
Our bigger message at the National Kidney Foundation is prevention. We want to teach people what their kidneys do, how to treat their kidneys so that they don’t get to the stage where they have to ask for a kidney. We’re trying to bring awareness and we have a campaign called Heart Your Kidneys because we think the kidneys don’t get enough love.
A lot of the other organs in the body, the heart and different organs, you know,, they’re kind of like the, at the center of what’s important and we want to make sure that the kidneys get just as much attention.
[0:08:18.2] MP: What are some of the big myths that you’re looking squash this year?
[0:08:21.4] AG: A lot of people think that you have to have somebody that you know that you want to give your kidney to in order to donate and that’s not true. You can donate altruistically, here, we have a list of all of the transplant centers in the Tri-State area. If you’re looking to donate, you can just call up that center, you could tell them that you’re willing to donate and they would take you through the process.
There’s a lot of people think that you get paid if you donate a kidney, you can’t get paid, you can’t sell your kidney, none of that is allowed. We actually get emails at work often where people say, I’d like to sell my kidney, I need to get rid of it, this doesn’t work that way.
[0:08:57.1] MP: I know, the market for that is not as strong as you’d like to believe.
[0:08:58.8] AG: No market.
[0:08:59.5] MP: Is there also, if I understand correctly, there is also programs where if let’s say you want to donate to someone who you know and love but you’re not a match that by donating, you can help them out by getting somebody else’s kidney who wants to do the same?
[0:09:10.4] AG: Yeah, you’re correct, that’s called a chain. You could be in a small chain where there’s three people or four people like us technically where it moves along the line. We know people that have been involved in a hundred person chain, your one decision can essentially help the lives of a hundred people, which is really amazing.
There’s also different states have different things going on but there is, I believe it’s in the state of New Jersey, there is a kind of an IOU ticket. For example, this grandmother, her daughter had twins and one of the twins, they knew was going to need a new kidney but wouldn’t be able to get it until about – she was 13 years old and the grandma said well, I don’t know if in 13 years my kidney will be well enough to donate and so what they have as I don’t know if you call it program, the exact word but basically, the grandmother donated her kidney altruistically, essentially to somebody at that time.
They needed a kidney and then she basically got a ticket so that when her daughter needed a kidney 13 years later, she said, I donated, now I can take out of that bank and get my granddaughter a kidney.
[0:10:09.2] MP: For folks who are just doing this altruistically, they’re not going to be part of a chain or match with someone they know and love. What are some of the other misconceptions about donating a kidney that we need to know about? I mean, obviously, we have two of them but what is life like with just one kidney if you decide to donate?
[0:10:23.7] AG: It’s exactly the same. I think that’s what a lot of people don’t really realize. You only need one kidney to function. They call it your spare, it’s literally your spare kidney, you don’t need your spare. You can live just as healthy of a life if you donate your one kidney and the doctors and the transplant coordinators, if they are going to consider taking their kidney, they’re going to do every single test imaginable to make sure that there’s no reason why you would need your spare kidney yourself.
It’s a very vigorous process, not just physically making sure that you’re the right person for it but mentally as well, as with any big operation, any big decision like that, you’re in really good hands with the transplant centers, making sure that they’re taking it from the right person and giving to the right person.
[0:11:03.2] MP: Excellent. I suppose the other thing that you mentioned that you want to get out there and make sure people know about is some things that we should be doing for better kidney health, both to prevent having to need a kidney down the line but also, if we want to donate, making sure that we have two very strong ones so that we can give that spare away. What are some things that typically we don’t think of, that would lead to good kidney health?
[0:11:25.2] AG: Yeah, the big thing is hydration and just living a healthy lifestyle, you’re at high risk for kidney disease if you have diabetes or if you have high blood pressure or hypertension. That’s just a simple, you know, make sure that you’re treating your body well, eating right and exercising, the big thing is getting regular tests.
If you go to your doctor, you should be going for annual checkups. You can ask them to do a blood test or urine test to make sure that your kidneys are functioning healthy. They refer to kidney disease as the silent killer because generally, your symptoms don’t show until it’s too late.
Until you are at the need for a new kidney or you need to go on dialysis. That’s why just regular checkups can help you figure out what your levels are. If you’re starting to near, your levels are starting to get to a place where you might have to consider something a little more drastic, you can get ahead of it beforehand.
Regular checkups, making sure that you’re eating healthy, you’re exercising regularly. Kind of just like the regular check ins.
[0:12:19.6] MP: What other information or what else do you want the folks who are here today, at this wonderful event to keep in mind and think about.
[0:12:25.0] AG: I think the big thing is it’s a beer event but make sure you’re hydrating while you’re here because your kidneys will appreciate it. And we have a really good kidney community in the area. If anybody’s ever looking for more information, they can visit kidney.org and any of their kidney questions will be answered there.
[0:12:39.7] MP: Any particular, as far as your particular chapter of this organization happen, how they reach out to you if they’re local to the region?
[0:12:46.1] AG: Yeah, they can visit kidneywalk.org and my information is on that website, they can email me directly at firstname.lastname@example.org. The last name’s an Italian one so I’ll spell it out.
[0:12:57.3] MP: We’ll also put it in the description for you.
[0:13:02.9] AG: My phone number is 215-923-861 extension 732.
[0:13:08.6] MP: Just how is this different from The Gift of Life or any other kidney organization that’s out there?
[0:13:12.8] AG: Yeah, gift of life, they are a very wonderful generous organization and I don’t want to steal too much off their thunder and explain it the wrong way but they deal with diseased donors. When somebody’s deceased and they’ve agreed that they’re going to donate their organs, they take on it, kind of after life and we kind of take on before. People are considering living donation versus deceased donation.
[0:13:32.5] MP: Going back to that healthy, spare kidney donation list.
[0:13:34.7] AG: Exactly.
[0:13:36.1] MP: Very good Well, Andrea, thank you so much for joining us here today and for being here at the event and we hope you’re able to really reach out, give everyone the right message.
[0:13:44.3] AG: Yeah, thank you for having me.
[0:13:45.7] MP: Still not convinced you can live a perfectly happy life after donating your kidney? Jason [inaudible], full disclosure, was the one who invited me to come out and produce this podcast episode. Decided to donate his kidney to someone in need. He said, it was the best decision he ever made.
[0:14:03.5] JN: I was on Facebook as I normally am and sold, I post by someone from church and she said that someone in the community needed a kidney and it turned out to be the stepfather of one of my best friends and so I immediately reached out to my best friend, Steven and I said, “Listen, I’ve got all this time off from work, I’m healthy, Bill’s a great guy, he’s done a lot for the community. I’d like to volunteer my kidney.”
And he says, “All right, I’ll call you back.” And like six months later, out of nowhere, he called me. Normally, he just text me so I knew there was something going on when he called me and he’s like, “Are you still interested in doing it?” I said, “Absolutely. When do we start?”
We started testing at a transplant facility in Philadelphia and it took a little bit of a long process and then we switched over to New Jersey in a transplant center, Lady Lords in Camden and it wasn’t long after that, that I actually donated my kidney, it was January 14th, 2014.
[0:14:59.0] MP: Wow, take us through a little bit of that process, what were some of the things going through your head and you know, what were some of the things that you didn’t realize were going to happen as part of this process?
[0:15:10.9] JN: One of the things that a couple of things really that really went through my mind, trying to decide this was, one, my recipient Bill Roade, he’s done so much for the community, whether it’s working with the churches or working with the thrift stores or business biscuits or dressing up as Santa Clause for the parade and going out for the children.
I also grew up in a family that was public service oriented, my grandfather did 66 years in the volunteer fire department before he passed away, my dad did 25, I did five. Everything was very service oriented in my family. I knew that it was something that if it was physically possible for me to do, I figured it’s something I needed to do.
From there, I figured, it was a great way to get off for the summer at work. Little did I know, that didn’t actually happen because it took a while for the testing to occur. Nor did I realize that the recovery would have been more difficult than just going to the hospital and coming home and being able to go to the beach every day, just didn’t work out like that.
What I learned about it? Pain is temporary. The recovery after surgery — I was out of the hospital in three days and then I was back to work in four weeks. It was a relatively painful four weeks but the doctors gave me pain medication and all that but I’d watch out I didn’t develop a hernia, made sure I was eating healthy but eventually I came back to work and then everything became fine, I’m a normal human being.
[0:16:35.2] MP: I was just going to ask you, what’s life been like? I had just spoken to Andrea from the national kidney foundation and said, really, that second kidney is a spare for most of us. Have you really noticed any changes in your life since making this incredible decision to help somebody out?
[0:16:50.4] JN: Physically speaking, there’s absolutely no difference in my life. I mean, you were to get kidney failure, once one kidney fails, the other one’s not far behind. A lot of people think, you could just cut the first one out and then you’ll be good to go because they’re separate systems but the reality is, they’re the same system.
There’s plenty of people who have donated organs and lived perfect lives, there’s plenty of people who are born with one kidney and they’re living perfectly normal lives. They say that living donors are the healthiest people because of all the screening that they have to go through, they’re not going to put an unhealthy person through an organ donation.
I mean, I’ve never experienced any kind of surgery like this but the odds of me living a long life are pretty good because I’m healthy.
[0:17:34.9] MP: Folks who are hearing this a couple of weeks out from this event, what is it that you want to encourage them to do? To be able to make an impact in somebody’s life the way you did?
[0:17:45.2] JN: Well, first, I would say, if you want – one of the easiest things that people can do is sign up to be an organ donor for the said moment that they eventually were to pass away but that’s easy, you go to DMV, you go to The Gift of Life donor program, go to their kiosk and sign up. But if you want to make an impact while you’re alive, just consider donating your kidney.
I mean, there’s a lot to consider but like I said, pain is temporary and the joy is permanent. You see you’re going to change someone’s life instantaneously. When I donated my kidney in the hospital, [inaudible] Camden, they put us on a private room, my recipient was a couple off rooms over and they wanted us to go around and walk around the floor, trying to get the blood flowing and I immediately, first place I went was to my recipient’s room.
You could just immediately see the difference in his life, his energy, his happiness, his joy, his family. I mean, granted he just got major surgery but you could just feel that he’s living a new life.
[0:18:51.8] MP: Awesome. Jason, thank you so much for your contribution to your donor, for setting a good example for everybody else and for helping to put on this event and to raise awareness and personally, for inviting me. I’m really glad to be here.
[0:19:04.3] JN: Absolutely, thanks for coming down and speaking to everybody.
[0:19:06.7] MP: Okay, I get it, still a biased opinion. Well, what about Whitney who I had no preexisting relationship with and whose decision to donate had a surprising and positive ripple effect in her life.
[0:19:18.5] WHITNEY: There was no decision needed to be made, it was my mother. I matched her, she needed one, I had two, there was no question about it and either one, the transplant coordinators asked about why are you looking to donate. My simple answer was, she is my mom.
[0:19:35.5] MP: That’s a pretty good answer. You’ve sort of made it clear that there was no hesitation but like, were there concerns? Was there anything that you were worried about when you were thinking about this?
[0:19:45.6] WHITNEY: The first step was to know that I matched her blood type wise and then I contacted the transplant coordinator that she was involved with and they actually wouldn’t look at me at first because she still had one kidney, she has polycystic kidneys, which is hereditary.
You can’t be a carrier, you either have it or you don’t have it. They told me that they wouldn’t look at me because it could still show up to the age of 30. I was like, 29 in eight months. Seriously, in four months, it’s going to show up. I actually went the further step and went to my own, I got an nephrologist, went to the nephrologist and asked for a genetic testing to be ordered to prove that I did or did not have and he’s like, basically in the ultrasounds you don ‘t have it, I’m like yeah, I need something like physical to tell me that I do not have, but you don’t have it.
I got the testing done, went back a few months later, he’s like, surprise, you don’t have it, told you. Then from there, I contacted the transplant coordinators again and I’m like, okay, I don’t have the thing you’re worried about, can we keep going?
[0:20:55.7] MP: What were some of the next steps that you had to take from the time you said look, I’m in the clear, let’s do this and to the point off actually going in for surgery?
[0:21:05.1] WHITNEY: I had to meet with the coordinator people, social worker, make sure that I wasn’t being paid on the black market for doing this or doing it for the wrong reason and making sure that I was financially set, insurancely set and everything. To make the decision. Three weeks out or going to be paid for, you’re going to be okay. A lot of blood work, a lot of urines, a couple of EKG’s.
I had a CAT scan, learned later that day that I’m allergic to IV contrast, I puffed up like a real fish, it was very itchy and red and I looked like the Wayans Brothers in White Chicks. I have photos of it and they’re like – they put me on steroids the next day and it went down but had no idea, it was like five hours later, sitting in a bar, having a beer and I’m like, is it really hot in here? Really itchy. That’s what it was.
After that, I matched her, we matched everything, it kind of got put on hold a little bit, my fiancé at the time and I broke up, I wasn’t in an emotional state to deal with it. They contacted me and said, you know, we don’t want to take you off the list but we’re not going to pressure you at this moment and I said, how much time do you need to have a decision for a date? They said about three weeks, I said okay.
They did transplants Tuesdays and Wednesdays. I said, have it February 14th and they said Valentine’s Day? I said, yup, what’s the best way to spend your first valentine’s day single after seven years than comatose? They said okay, I got approved for my job, mom got it approved to have time off on her job and we never looked back.
[0:22:43.4] MP: How did you feel after waking up from surgery like was there any nature – obviously went through surgery which is you know, going to be a pretty big ordeal but you know, since this has happened, have you felt different, is there anything that somebody who was cautious abort this should know?
[0:23:00.9] WHITNEY: I say I have phantom pain sometimes but I know that’s all it is. It’s more of like an itch than a pain. I’ve gotten pain in my side and well I know it’s not a kidney problem because I don’t have one there. I woke up from surgery, honestly, that was probably the most painful thing because they do a tap lock to numb you. But they did it after they transferred me from the operating table to the bed and that’s when I woke up.
But it was pain for in my mind, five seconds, I really have no idea how long it actually was because I was so drugged up. Slept the first day, best sleep I think I’ve ever had. Kind of like kept waking up multiple times and guess what I did today? What? I gave a kidney. The 7th time, it’s like, we know, you gave a kidney, we got it.
I spent two full days in the hospital, went home Tuesday, went home Thursday. Mom was actually – she came to walk to me which is not the normal apparently but she’s been to surgeries before, she gave birth, this is the biggest pain I’ve ever had to deal with, I will say you know, the first day having to walk to the bathroom from the hospital that it was an ordeal of like 20 minutes just to get there and I’m also stubborn, I wouldn’t ask for help, water bottle and trying to kick it up the wall.
Probably walked to the nurse’s station, can I have help? Can you just pick up my Gatorade? I can’t reach it. Few days home, medication only at night, Tylenol during the day, was able to drive I think 10 days later, went back to work there weeks later. I met someone here at The Spice of Life thing three years ago. She had said, if I had a hundred kidneys to give away, I’d give a hundred more and I’m thinking, you are crazy and now that I’ve done it, if I had a hundred kidneys, I would totally give a hundred away.
My best friend is from North Carolina and she’s looking because she knows someone that needs one, it’s her basketball coach, it’s jersey that coached her entire life and she said, what it make – you think you want to do it, just do it. Look into it, pain is temporary and the gift that you’re giving is remarkable and seeing it in my mother and seeing how she is now than she was when she was on dialysis at her absolute worse is worth it.
[0:25:05.6] MP: And so yeah, tell us how your mom is doing today.
[0:25:07.7] WHITNEY: She’s good. She’s got a couple of setbacks that is unrelated to the kidney but she’s great. This last time in the hospital she’s sitting there and we are visiting her and I’m like, “Are you faking? Because you seem fine. You’re laughing, you’re joking, you’re mad that you can’t get the Hallmark Channel on your TV in the hospital.”
And she called concierge and guess what she got? Hallmark Channel in her hospital room which you know my mother, it would totally make sense. Hallmark Channel and Bravo it’s all she really watches.
[0:25:33.0] MP: I know those people.
[0:25:35.1] WHITNEY: Now she’s doing fantastic and just to see how – it’s like getting my mom back. I remember her before she ever got sick before knowing what it was like and then 2015 is when she first downhill and she was in and out of the hospital for most of the year and it’s awesome. She gave me life and I was able to give it back to her really in all intents and purposes so —
[0:25:58.2] MP: It’s such a beautiful story. Well Whitney, thank you so much for sharing this gift with your mother and for telling everyone about this experience and why it is something to be embraced enough here.
[0:26:08.0] WHITNEY: Thank you.
[END OF INTERVIEW]
[0:26:08.4] MP: While there, I also sat down with Jenna, who has family that works at Forgotten Boardwalk but also thinks it is so important for people to register as organ donors today.
[0:26:17.7] JENNA: So my family has polycystic kidney disease. It was one of the most common kidney diseases. My grandma died when I was actually a little kiddo from it and it is okay. My uncle actually gave my dad a kidney probably about 15 years ago but we’ve all had the genetic testing and we know that is myself, my sister, my twin sister, my younger sister, I have two cousins that both have it, my aunt has it. So it is a 50-50 thing but we keep on apparently getting –
I don’t know if it’s heads or tails on that one but what’s interesting is that the medicine hasn’t actually changed that much from when my grandma was diagnosed with it way back when. You know kidney transplants are still the way to care for it and people develop at a different rate. But we are all a 100% people who are going to potentially be need within the next 10, 20 years of kidneys so.
[0:27:06.4] MP: So what do you do knowing that you are going to potentially need a kidney somewhere down the line like how do you encourage and knowing that it sounds like there is not a lot of options in your family to get them. So how do you handle that, what steps are you taking to be proactive?
[0:27:20.6] JENNA: You know it is really awkward to come up to your friends and ask who is a B blood type but you know I think actually things like these are good opportunity to talk about it because it is kind of weird in day to day conversation but you know, making sure that people hear the story. I think sometimes I will mention things about my dad and people are like, “I have never thought about that.” And it can be an interesting conversation for folks who haven’t thought about.
Like, “Did I check yes on my driver’s license? I don’t know.” And certainly different for different states. So trying to make it a personal thing I think could sometimes help just because if you don’t know someone who needs an organ, I think it can fall by the wayside.
[0:27:58.3] MP: And so are there steps that you can take now to sort of ensure that when you need one or when you are ready that there’s one sort of waiting for you?
[0:28:07.0] JENNA: Keep those B blood type friends close by.
[0:28:09.8] MP: Be nice to everyone.
[0:28:10.8] JENNA: Yeah but also I think again just make sure people are aware that it’s this thing that you can do as a living donor. I think Seth is an excellent story that I know you chatted with him earlier because you don’t need to wait for someone to be so sick that they can’t carry on.
But you know I think even just finding folks who are willing to give as blind donors, it build a base. So it may not be my kidney necessarily that I am getting but it could be somebody helping someone else’s.
[0:28:39.1] MP: Yeah, I mean I was talking to Andrea from the National Kidney Foundation earlier and she was talking about these chains that go smallest for people to as many as 100. So if you know a couple of folks who are willing to donate a kidney, they might not even be a match but they can start to facilitate that for you and so.
[0:28:55.2] JENNA: Yeah and I think that is an important piece of it.
[0:28:57.9] MP: So not only are you here but you have family that works here at Forgotten Boardwalk. So tell me a little bit about your favorite beers that when you come here and what you enjoy.
[0:29:05.4] JENNA: Yes, I appreciate that I have a chance to sample a lot of the beers here. You know the spicy, the Lady Number 8 number aid is actually probably one of my favorites but as somebody who likes a lot of hops, the Pocket Trick. They come out with a new iteration of it in the last year and I love that one. It is not on yet, it is a special release. It is an imperial IPA.
[0:29:24.3] MP: Okay because I was just asking Jamie about the IPA’s and so she’s told me all about it’s like [inaudible] one but that one did not come up in the conversation so.
[0:29:31.9] JENNA: Yeah, yeah, be on the lookout for that one.
[0:29:34.0] MP: I live around the corner so I should be able to get here pretty fast if when that comes out. Anything else do you think folks should know about living organ donations or specifically kidney donations that we haven’t talked about?
[0:29:44.1] JENNA: Just make sure that you know if you are a donor or not. I think that’s step one and then if you are not, take a moment and think about if you can help someone out at some point.
[0:29:55.5] MP: Perfect. Well Jenna, thank you so much for joining us here today.
[0:29:58.8] JENNA: Yeah, thanks I appreciate the opportunity to chat.
[END OF INTERVIEW]
[0:30:00.9] MP: I get it, I get it, hearing this may not make you want to run out and just randomly give away your kidney, although hopefully you’ll realize now that you could if someone in need comes calling but the whole event should also convince you that being an organ donor, checking that box on your driver’s license can save so many. Satara Oberfrank, a volunteer at the Gift of Life donor program dispel some myths about being an organ donor and why there’s really no reason you can’t be one and also why as a living donor, she is just awesome.
[0:30:29.3] SO: There are so many myths around organ donation and I actually love dispelling them with people. One of the biggest myths that I seem to get from people is if something where to happen to me, of course the doctors in the ER won’t save me. Which is absolutely hysterical because I always like to say, you know a doctor in an ER wants to come in and they want the saves at the end of the day. They want to have many, many life savings.
So when something already happened to you, it is actually a very specific type of death that you can donate organs with. You have to have a brain death. So you have to have a trauma to your brain, a stroke something like that to be an actual organ donor. If you come in with a heart death, heart cardiac arrest, you actually aren’t a candidate to be an organ donor. So it really is a specific type of death and there is a long procedure to determine if you can be an organ donor.
They do a test at the time of death to make sure that you are brain dead and then 12 hours later, they rerun the tests over again just to confirm that there is brain death and no life activity.
[0:31:28.9] MP: Right, it is not like you get into a car accident, EMS arrives at the scene and the first thing they look and check the card is the organ donor. “All right, let us just wait this one out folks.” It doesn’t happen.
[0:31:38.6] SO: Which is really awesome because I was an EMT for 13 years and in my 13 years of being an EMT, I never once looked at someone’s driver’s license and I never walked into an ER and anybody look at the driver’s license and say, “Whoa, we’re going to get organs this way.” So no that is definitely not the way it happens. As an EMT I wanted to save people. I wanted to make sure they went home to their families.
[0:32:01.7] MP: So there is very little reason why people shouldn’t be willing to donate their organs. Should they run into this unique and isolated scenario that they would be able to.
[0:32:11.3] SO: Absolutely not. One of the reasons I talk about organ donation is I feel like my little joke with people is I am a pretty awesome person and most people are pretty awesome in this world and we do wonderful things and if something were to happen to me, the best thing in my scenario would be this awesomeness would be able to live on in somebody else. I would love my life to continue and somebody else’s life and they’d be able to do things with their families because of me.
[0:32:34.7] MP: So tell us a little bit about how you got involved with the spice of life event and how it has been good for your organization?
[0:32:41.0] SO: Well for me, I begin to advocate for organ donation seven years ago after I donated my kidney. I realized there were a lot of people out there that were desperately needing organs and there were people who had these misconceptions and these issues of why they wouldn’t register. So I felt it was important to get out and to advocate for everybody so that we could get people to register. I have been doing the Spice of Life event for the last I believe five years.
I started actually it was one of the first events I did as a volunteer with The Gift of Life. So for me, it was a great way to get people registered. It is a great way to talk to people and dispel myths and to talk to people about living donation as well. I think a lot of people are scared of being a living donor. So if they can see me and they can see I am active, they can see that it is really an easy surgery and that it is something that they may possibly want to do.
[0:33:32.1] MP: Well and as you stated earlier, you are pretty awesome because you have donated your kidney to someone else. You’ve donated bone marrow, tell us about that decision to donate your kidney to someone from what, your mom’s church, is that what it was?
[0:33:45.0] SO: Yes, for me years ago I think it was about 15 years ago now I donated bone marrow and that was just getting on the National Bone Marrow registry. It was one of those things that I didn’t think I’d ever get picked because it was so type specific. I won the lottery and was able to donate to a young boy and after that, I had met somebody who is a kidney donor and kind of put it in the back of my head and one day at my mom’s church, somebody said that one of their fellow persons was going to need a kidney.
So my mom basically said, “My daughter will do that.” So she passed my information along and I was a perfect match and honestly, now that I look back, I feel that I have gained more from organ donation than what I gave away. I mean who needs an extra kidney? They are just sitting around doing nothing. So for me I have gained so much more from this experience than probably what I gave.
[0:34:32.5] MP: And as you said earlier and I am sitting here as a witness. There is nothing about you that would say to me like, “Oh clearly this person is down a few organs.” Like this is not the case. You’re a living a healthy, happy, thriving life from doing what you love every day.
[0:34:44.7] SO: Yes and I actually feel at this point in my life from probably a little bit more healthier because I actually go to the doctors every year on my own accord. Just to make sure my blood work is tested. You know one of the things they do talk about is living a healthy lifestyle. We have the transplant games to the Gift of Life and through the National Donate Life Program and it talks about health with recipients and health with donors.
So with those things, I almost think sometimes I am a little bit healthier than I would have been because I probably would never go to the doctor unless I am sick.
[0:35:12.5] MP: Right, this has forced you to think about those decisions that you make every day and you are making healthier and better ones because you sort of have to.
[0:35:20.5] SO: Definitely, yes.
[0:35:21.6] MP: Oh that is very cool. Satara, anything else that you think that we should know about the Gift of Life donor program or Spice of Life event that we haven’t covered?
[0:35:29.7] SO: Well the Gift of Life program, I would just urge everybody to register to be an organ donor. If it is not on your driver’s license, you’re getting to say yes at the DMV. If you go to donors1.org, you can register there or you can go to donatelife.net. You can register there to be an organ donor and the second most important thing I think, I know there’s a lot of people who are already registered. One of the most important things is to talk to your family about it.
I think it is very important for everybody to know that’s your wish that way if something were to happen and they ask you that your family would know your wishes.
[0:36:03.8] MP: Very good and again, that is donor1, the number one or?
[0:36:07.4] SO: Correct, donor1.org.
[0:36:10.4] MP: donor1.org, become a donor today. Satara, thank you so much for joining us here today.
[0:36:15.9] SO: Thank you so much.
[END OF INTERVIEW]
[0:36:16.9] MP: And lastly, I want to make sure we give a lot of props to the good folks at Forgotten Boardwalk who put on this awesome event. Evan Wasilik and apologies if I just butchered his name is the head brewer and talks about some of the special brews made just for this event and a few others that peaked my curiosity. I will share a picture of the list in the show notes but let us start with Lady Number 8, brewed specifically for this event five years ago.
[0:36:38.7] EW: Well, I mean I guess the whole event, the original head brewer came up with that first, the Lady 8, the watermelon, basil and pepper blend. That was Dave and he put up that but then after that because we have multiple heads here working we all like different styles of the beer as well especially when it comes to alcohol beverages like cocktails and whatnot. We play with all of these different ideas of whether it is fruit or spices and we just throw things together and see what sounds like what might be interesting.
You know every month, we have First Workign Friday so we have the same concept once a month, one of our beers, a new fruit or spice or whatever variant that play and learn with new flavors. So everything is always a round table, so to speak and we are always spit balling back and forth.
[0:37:20.8] MP: So what’s your latest concoction that we should all be excited about that we should all come and check out at Forgotten Boardwalk?
[0:37:25.6] EW: Yeah, the new one over there, those are a couple of gin barrels that we have from Asbury Park Distilling in New Jersey and those are obviously spent gin barrel so they gave them to us and what we’re going to do is a series of kettle soured saison beers and then go through a secondary fermentation in the barrels with fruit.
So far we have mango and peach as two definites. The other two we’re working out, raspberry something to that effect but — some barrel age fruited sour saisons. So those are the new things out for the spring.
[0:37:59.4] MP: Very cool, so Lady 8 and I am looking at the list of the beers that are available today, how does this whole lady theme come about? Lady 5, 16 and 17 like what’s that all about?
[0:38:08.8] EW: Ooh, the actual Lady history, I mean Jamie would definitely give you a better answer on that one but just the idea behind What the Butler Saw and how it is based on this voyer kind of looking through the keyhole over the can design is actually like a skirt legging type design if you catch it. So the lady is what the butler saw essentially. That is like the play off of the story, so every lady variant of the beer is what the butler saw, technically.
[0:38:36.4] MP: All right and so I mean since you’re partially responsible for a lot of the beers that are here and it’s like picking your children but what is your personal favorite Forgotten Boardwalk brew that somebody says, “I don’t know if you guys are any good.” Like what is the go-to and you say, “This is the one you’ve got to try. This is our standout.” You know?
[0:38:55.8] EW: Well we do have a lot of really cool beers that we put our seasonally throughout the year but one of my personal favorites might be the [inaudible] the Imperial Stout.
[0:39:04.8] MP: That is the one on bourbon barrel?
[0:39:06.1] EW: Yes, right now. We actually just brew it again this week. It is actually this one bubbling behind you in the tank.
[0:39:11.0] MP: Oh so I shouldn’t taken a look at that directly.
[0:39:13.0] EW: Not yet, it is not quite done. It’s still working but that is one of my personal favorites beer. Big, dark, chocolate, thick roast on the end and it is a full bodied. It is a really nice Imperial Stout for the style.
[0:39:24.2] MP: I am going to have to let my wife know. She is a big fan or any bourbon barrel over here.
[0:39:27.7] EW: Oh definitely, we haven’t had it out front yet, definitely going to try it.
[0:39:30.0] MP: And me personally I am an IPA guy. So talk to me about the Fake Radio War. I feel like that’s a perfect amalgamation of everything, I like IPA and it is even referencing radio which is what I do so I feel like I have to have it.
[0:39:43.1] EW: I mean yeah, it’s all the story of Orson Wells in New Jersey and war of the worlds and everything but the idea behind the beer was drawing inspiration obviously from the west coast and early generation of American IPA’s where it has a little bit more of a bitter edge at least or using some of the more classic ones like chinook, summit. You know it is not here necessarily, super sexy tropical fruit hops because this was also weren’t what they kind of were even five, 10 years ago. Barely a decade and we have a whole new rein of IPA’s nowadays.
But yeah, so maintain some of that resin and some of the piney quality but then the Amarillo hop gives it just little punches of fruit that blends really well. So you know it is what we all came into the craft beer market with, you know not your today’s north east IPA, big juicy ones. So we just wanted to go back to them and draw inspiration and try to go something classic but blending in with those older hops and some of the newer age like Amarillo style hop.
[END OF INTERVIEW]
[0:40:42.4] MP: And lastly but certainly not least, Jamie Queli, owner and CEO of Forgotten Boardwalk on why this charity event is a celebration for her and the entire staff and honestly, the entire community that comes out. Also, why her roots and charitable nature have not been forgotten, no pun intended, I mean all of her success with this company.
[0:41:03.7] JQ: This was an event that we conjured up about five years ago and Seth, our business partner over here and our sales person, donated his kidney successfully to his mom approximately 13 years ago. So what we wanted to do when we celebrated this event was kind of like celebrate organ donation and it kind of feels a little morbid. But we celebrate everybody that has receive an organ donation or is in need of an organ donation.
Just to raise awareness that you can be doing your part. You don’t have to be a donor and give away your organs but just your little part of having your organs being sort of if something ever god forbid happens to you when you are driving, just having it on the back of your license or stuff to that effect.