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tv   Caucus New Jersey  PBS  September 30, 2014 5:30pm-6:01pm EDT

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hi i'm warren geller at englewood hospital and medical center we believe that all citizens need to be informed about the healthcare issues that effect their lives that's why we're proud to support the caucus educational corporation and their partners in public television. the gift of sharing next on caycus new jersey funding for this edition of caucus new jersey has been provided by td bank berkeley college englewood hospital and medical center health republic insurance of new jersey njm auto insurance homeowner's insurance and more with a focus on safety and financial stability the russell berrie foundation and by choose new jersey our mission is attracting companies to the garden state promotional support provided by the star ledger powering and by njbiz all business all new jersey
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[music playing] [music playing] did you know that more than 120,000 people in the us are waiting for a life saving organ transplant? and nearly 5,000 are living right her ein new jersey new jersey sharing network's mission is to save and enhance lives through organ and tissue donation. [music playing] [music playing] you can make a difference and save a life today hmm powerful stuff welcome to caucus new jersey i'm steve adubato as you just saw nearly 5,000 new jersey residents are currently waiting for transplants joining us here in the studio today to talk about the personal experiences with organ and tissue donation we have dorothea duffy who is a kidney transplant recipient a caucus veteran she was back with us last year and at the time she was waiting
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for that transplant and we are so thrilled... happy to have you with us and you look fabulous thank you thank you so much we also have vito pulito who is chairman of the board of the new jersey sharing network our partner in this very important public awareness initiative luis fernandez is a cornea transplant recipient and the family support coordinator at the new jersey sharing network and finally a wonderful friend we have with us a new friend patti jackson is a mother of a 13 month old organ donor named zoe zoe was run over in an accident several years ago yes in newark and donated her heart her liver and kidney when zoe was lost and you made that decision to do that because? just felt like it was the right thing to do i mean what purpose would it have served for me
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to just bury her with those organs when she could have saved somebody elses life i mean she helped three other mothers not have to go through what i'm going through right now so 13 months? 13 months you have a... i know bob morris our great director we'll get a shot of a beautiful button you have on a beautiful picture of zoe you wear that? every day every day? what did she bring to your life? happiness she brought the whole family closer together she was just an amazing little girl what did she bring to the other people that she donated her organs to including a young boy by the name of abel who received zoe's kidney who was 13 at the time and now he is? 17 we're gonna show a picture if we can jacquelyn our great producer if you could now tell us who we're looking at right there? that's abel his mom carmen my daughter parker myself and mary ellen from the sharing network are you family now?
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of course how does that happen? you know what? we met in this past november that's at my house and we've just been in contact constantly we were together for his anniversary in april we were together for his birthday he came to the 5k this year big 5k we'll talk about that go ahead i just spoke to him yesterday he was on vacation in miami [laughter] zoe um continues to give life yes vito is that why you do this? yes it is talk about it yes it is i mean i my background is totally totally finance i got involved with share network through joe roth the ceo yep at an outing one day and we started talking and coming from first generation italians very lack of knowledge regarding organ donation transplants... asking... talking to joe that whole day at the end of the day he asked you know what about joining the ard and i said i don't know if i can do it. you know i don't know if i really have the knowledge base i thought it had to be all medically driven and i joined and six years later
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i have become i believe a champion of this process eally think it's the right thing to do and i honestly must admit that i did not check the box until i joined the network i didn't know anything about checking the donor box it's been a rewarding experience to me to be part of the network i mean i walked into that uilding and it was like a family that's come together what does that mean? they all know each other they all have the right direction the vision the mission of what they do every day i mean it's so important to them it's a thing that they do that they want to do and describe one... describe that mission mission is to save and enhance lives through organ and tissue donation i mean you have to say it slowly to really let it sink in and digest it's powerful there are 5,000 people waiting 5,000 people in new jersey waiting for organs and when we partnered with the sharing network it was very simple i'll
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be very clear our objective was not only to increase public awareness but to encourage people to do what they need to do if they choose to to donate to try to reduce the number of people on that list and one of the people i want to talk about is dorothea duffy now you're a kidney transplant recipient yup you got the kidney when? january 27th of this year january 27th on 2014? 2014 you were with us on this set of caucus new jersey do you know when? september of 2013 september 2013 at the time as part of this ongoing initiative of public awareness called the gift of sharing you talked about what it was like waiting how long we're you waiting? um i was on dialysis it would have been this april four years so about three and a half years at that time when i spoke with you your life has changed just a little bit [laughter] just a little bit um why don't we take a look at
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dorothea duffy on caucus new jersey just a while back and her life has changed an afwul lot this is dorothea on public television you have a very rare autoimmune disease that effects your vascular and respiratory system correct on a transplant list for that period of time a couple years, um you're waiting for a kidney waiting for a kidney i'm listed in two clinics ne in pennsylvania in philly and one in st barnabas now on dialysis? 'm on dialysis three days a week and what's that like? um kind of um i understand exactly what denise said you accept your life as it is for now right and you make the best of it um it's something i know i have to do and one of my main goals is to stay as healthy as i can so i'm ready for that kidney when it becomes available
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go ahead so it finally became available by the way what was it like seeing that? seeing that...? do you recognize that lady? [laughter] yeah i know who she is and how much different do you feel today than then? well one thing i feel like i lived up to what i just said i kept myself ready for that day when i finally got the correct call for that kidney and it was offered to me um i don't have to go to dialysis i have i actually i... my recovery has seemed to move along pretty quickly now that i look back when you're going through it it doesn't seem like it's fast enough how's your quality of life today? it's very good can we show a picture of you from the sharing network 5k 5k sure which is a great fundraiser for the organization yes and our great producer jackie tricarico is up there and did a great
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producing job of putting a package together there you are team dorothea mm hmm you had a team there? i had a team what's up with that? i do that's my team and my shirts and my team wow we had 25 of us how proud? how proud? just the support and the love from my family and friends wow just it's overwhelming it's just been great so you're off that list? i'm off the list so that's the point folks we're not gonna turn this into a pbs telethon [laughter] or a begathon [laughter] or however you... or pledge or you know all those things are good because we love when you support public broadcasting but i'll tell you we are gonna turn into an opportunity for you to find out more about how you can become someone who gives the gift o life and that's why the sharing network information is on the screen you're off the list too many people are still on the list that's right you were on the list waiting for? a cornea transplant a cornea transplant in your...? in my left eye
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what was going on? what could you see and not see? well um yeah i remember when i was 17 trying to get my lisence everybody asked you to take the eye exam and you know i ok it and i did not realize that you know i had missed a whole column and the guy said well you have to go to the eye doctor i can't give you your driver's lisence and that's how i found out that i had a disease in my cornea that was you know i wasn't able to see right and um and there are you know just going through the process usually gives you a contact lens but you know i'm i was aware that eventually i was gonna need a cornea transplant so one day after about ten years of being diagnosed i couldn't see you know it was this cloudy this white and my doctor told me you need that cornea transplant so from there on i got involved with the sharing network you got involved? yeah um i became a family support coordinator
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and our job is to be there with the families you know like patti to be there with them in the moment they... to be with them? explain that because people watching right now think oh i have to go through this alone right? no? yeah no when um we're trained and our heart our passion is to see families being supportive in this time it's so hard what do you do for them? what do you do for them? sometimes it's really what the family needs in that moment sometimes they just need somebody to be quiet and next to them i'm personally a spanish speaking so sometimes families just need a translator um if we don't have one so we'll try to get one we'll try to advocate for them if it's needed um but helping them through the process and it's important for people to know if they donate or not we're working with them we're with them throughout the process you know we're not just about um well if you become a donor then we're compassionate towards you you just lost a loved one that's a big deal
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and being involved with that process of supporting families and honestly i would say the darkest moment i realize how precious the gift that i was about to receive was there's people who probably have a cornea transplant where tissue a tissue transplant this helps with so many things and we call it enhancing their lives but for some people you really just saving well they saved my life well actually you got the cornea mm hmm when? i got it march of 2013 last year new baby? the baby came this year january 15th 2013 you mind if we show a picture? there it is no not a problem of course who is that baby? [laughter] that's james levi that's... that's james levi? hat's his first bath so you know i was very excited and he obviously was very excited too [laughter] you were able to see james levi in a way that you would never ave been able to see james levi? yeah i don't need... you know in the mornings when he wakes up and he hits my face you know [laughter] it's an amazing feeling just to see him you know obviously
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i have to watch for my cornea i always protect it [laughter] but um he's a blessing and it's amazing to be able to receive this gift and be able to see him better it is a blessing really um patti i want to ask you you know you're doing an extraordinary public service by being here you're did even more of a... public service doesn't do justice to what you did and what your family did with zoe it's just such an understatement you gave life why are you here today? to spread the word about organ donation. if you can just reach one person and change their mind about how they feel about it and they sign up to be an organ donor hmm it... but you haven't stopped? you speak to doctors you volunteer you do all these things why? why that? isn't it enough that you did no what you did with zoe? no that's not enough? it's definitely not enough i'll repeat again for those who are just tuning in on public broadcasting zoe... you lost zoe 13 months old she was killed in a tragic
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accident yes her heart her liver and her kidney we're looking right there at a beautiful picture who is that? that was baby madison and she was killed...? in august 2011 and that's a friend's? well we didn't meet till after the fact but... did you help this? no we didn't meet until maybe december 2011 but i had heard so much about this story we had so many things in common and we met and that's another new family member to... what do you mean another family member? like her grandmother her father her mother i'm friends with everybody in the family now your family has expanded through this experience? definitely how so? everybody just gives in... cause this kid abel who's 17 now you sound like you family's with him... he's walking around with a part of zoe in him? yes 17 now 13 at the time? family? that's... mm hmm... but not blood? not blood but close enough might as well be i love everybody at the sharing network
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they're an extension of us if i walk in the sharing network i might not recognize the patients with it's always hi patti you're zoe's mom you're zoe's mom? [laughter] [laughter] that's it. mm hmm. everybody knows you? everybody knows me it's crazy to say this but i'll say it anyway in many ways though zoe's not here on this earth but is she ng in... is her spirit living in other people? definitely definitely? you believe that? without a doubt and you're shaking your head too i do too because i really sense without a doubt that it's not having being a donor or a recipient i really sense that walking into that building that there was such a connectivity across everyone hat there is this family feeling t's powerful i mean i witness it and i shake my head it's really phenomenal to go through then why are we so far behind? yup we have your story to tell which is extraordinary the fact that we have you back i mean is so terriffic for us as producers in public broadcasting to see a success story like that is wonderful
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for us but obviously more importantly for you to tell your story for you to... you know... we were... i was telling... i was talking to our kids the other day about the difference between being a victim and something very tragic happens and what you choose to do with it if you want to turn it around what you did is the opposite of that and you're such an inspiration for so many but i ask myself then why are there 5,000 people waiting today? well steve you know we lose 18 people a day cause there's not enough organs to transplant say that again? 18 people a day we lose because there's not enough organs to transplant but the sharing network is i don't want to turn into a commercial for you guys ither but you're doing all kinds of puclic awareness efforts you have thes psa's on the air you have these events e're doing this 18 people a day? 18 people a day and i think stemming from that it's what a lack of knowledge like i encounted. i get... you were the chairman of the board and you said what at the beginning? that...? how can i do this? i don't know how can i do...? that's right i don't know and i think
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that's very critical in this process we... education is lacking... i think the younger generation needs to be brought up to speed what this gift of life really... what do you mean the younger generation? the younger generation i'm saying for let's say 42 high school students to know what the gift of life can be given um it's there it's the opportunity is there we need to just educate people there's a tremendous amount of lack of knowledge or myths about what transplants mean let's go back to the myths again okay because we do it every show so yeah no there's one i'm a minister myself so there's a lot of things people connect alot with faith they believe that the faith is against organ donation and the fact is that every major religion every major religion i'm talking about catholic protestant muslims you know jewish they all agree that organ donation is the ultimate gift that anybody can actually give. all those religions? all the religions and it's you know someone says oh for my eligious... my religion doesn't
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believe in this you say? well a lot of people do say that but in reality you know they just they're probably not informed they're probably not informed you know that a lot of religions have either leave it up to the individual to make the decision or they actually say they support it openly so and in your situation mm hmm was there a lot of support for you or did you do this alone? no i had a lot of support where did it ccome from? um friends and family but new jersey sharing network but how did you find them? did they find you? i was always confused about that my friend who received a kidney transplant speaking to him and he said he was going to be doing this the first 5k and i was a year out from being from when i had gotten sick and i wanted to challenge myself i wanted a goal and so i set my sights on doing that first 5k and i did it with
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my brother just the two of us and then the next year team dorothea appeared [laughter] and i have had at least 20 to 25 people each year... who are they? friends? family? who are they? friends and family committed to you? to my... yes... committed to my cause my journey is it a cause? 's a... well it's a committed to the solution of what i was going through and then thankful for what i've received so here's my question someone says well you're done now you're good why don't you just walk away? no why not? it's my purpose you got your kidney you're good it's my purpose i feel it's my for what? purpose in life to spread the word that this is an important thing to decide for yourself but to give them as much
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nformation as i have to let them know why it's important it's not enough that you have this kidney no that gives you... the story is... my story sorry to interrupt go ahead my story has just evolved in such a way that it it's just gotten better yeah and the support and the information that i keep trying to educate myself the more i'm learning is to learn more about tissue and you know transplants like that let's go back to the mission again because one of the reasons i got particularly interested in this and i've told joe this story and uh my wife told it was okay to say this my wife donated her kidney um and beforehand we were concerned about and confused about all kinds of issues as to what the implications of that would be and you know she wanted to get pregnant could she get... what would be the implications of that and
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what was the recovery time? and all sorts of issues and we were so wrong about so many things and because we had such terriffic people it was before we even knew about the sharing network but we had good folks at a particular hospital who were relaly helpful to us and she did what she needed to do and she's great now but the point is it's almsot like you have to go through it or you have to hear someone who goes through it firsthand to just realize wait a minute? i've got a lot of bad information mm hmm so some of the myths out there about recovering time well she's like well i have this one kidney what happens now? and she functions quite well you know so there are a lot of myths like that right? there are. there are. and going back to what we were talking about before is that the impactful part is people that have experienced it gone through it really can drive the message home and i think that's what you're hearing today is that they've experienced it they've gone through it and that's the message we need to get out there's also you know the fear of talking about death i mean that's people don't talk about it talk about that part of it which one? the death part? yeah people don't want to talk about
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death. you know when you're ill there's concern about you know i'm gonna die i'm gonna die and that's it but there's ways there's opportunities i'm gonna die and that's it i'm gonna die and that's it so when you want me to talk about what am i doing with my eyes yup you want to talk about what am i gonna do with...? when i'm dying when i'm dying 'm dying and you want me to talk about those things yup now here's the question are we advocating because you actually had... am i wrong on this? that you were involved and interested in this area before things happened with zoe? long before i was... long before so long before anything happened with this tragic accident 13 months you were into this question you don't know this for sure. if you had not known as much as you had known and cared about this issue to the degree you did you have any idea what you would have done? i probably still would have donated you probably... [laughter] you still think you would have done it? mm hmm so here's the thing while you're not dying and you don't know when it could happen cause tragic accidents and things happen all the time isn't now the time to talk about it? yes yup
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get informed now isn't now the time to talk about it? go ahead ah i tell my family all the time everybody knows my wish is tissue bone whatever you can donate what do you tell them to do? make sure you know i want my organs donated how do people do it? you go online you on the website there it is right there yeah new jersey sharing network you go on the website what do you do? click the box say you want to donate click donate live tissue oh that sounds complicated you can also do it through faceboook... everything it can't be that easy it can't be that easy it can't be well it is that easy and i think what's so important to patti is that you have to also talk to your family yeah you know a lot of times you encounter people that have their wishes known they have checked the box and at the moment like you just said, tragedy happens at any moment you know it's just we just don't know and it's important for the families to be aware and it's it makes such a difference for the family when they are in the darkest moment and the person made that decision it's like whoever saves one leaves decision to make the families what do you mean? when somebody passes
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unfortunately there's so many decisions to make where the how the funeral home and there are so many things there to take care of and if you know that that family member wanted to do this because it was compassionate because you were giving it... you see the faces of the families just a relief to know that they're doing the right thing hmm and this is what the new jersey sharing network is there to help their wishes come through and i mean so they can continue living that legacy it doens't make it any easier that you have this tragic loss of zoe at 13 months but at some level it's gotta give you a sense that you know she's done so much and you'vve done so much right? this is the best thing to come out of it this is the best thing to come out of it yup final words? i agree with what she's shared with us i mean i come home from the sharing network after spending a day meetings or whatever with the team there and dinner table we talk... i talk about it right i talk about it and my daughter
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final seconds yes and quickly i mean my family checked the box i mean and they're proud to say pass the message right? check the box check the box folks just check the box thank you very much the preceding program has been a production of the caucus educational corporation celebrating over 25 years of broadcast excellence and thirteen for wnet njtv and whyy funding for this edition of caucus new jersey has been provided by td bank berkeley college englewood hospital and medical center health republic insurance of new jersey njm the russell berrie foundation and by choose new jersey transportation provided by air brook limousine serving the metropolitan new york new jersey area caucus new jersey has been produced in partnership with tristar studios hi i'm peter rooney in 2006 i lost my father to renal disease. he was on the aiting list for a new kidney but did not receive one in time
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unfortunately so many like my father have lost their lives while waiting for a life saving organ. at new jersey sharing network we're committed to saving and enhancing people's lives through organ and tissue donation and by informing people about this important decision. because you can make a difference and save a life
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captioning sponsored by macneil/lehrer productions >> woodruff: the head of the secret service in the line of fire of tough questions from lawmakers over failures to secure the white house and protect the first family. good evening, i'm judy woodruff. gwen ifill is away. also ahead this tuesday. tens of thousands of protesters continue to peacefully fill the streets of hong kong, calling for more freedoms from china and defying government demands to disband. then, violin virtuoso joshua bell returns to perform at a washington, d.c. train station, but thim


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