Hello everyone i’d like to thank you for attending today’s docu-series letters of hope uh welcome to everyone in the room and welcome to everyone participating on our live stream feed at tdx our mission is to provide groundbreaking services to enable our customers around the world to help improve the lives of transplant
Recipients and their caregivers to fulfill this mission we need to do more than just listen to stories we need to actively engage the entire transplant community that includes recipients donors caregivers those on the wait list we need to make sure we understand their perspectives their experiences and their challenges
We have a responsibility as the world’s leading provider of innovative transplant diagnostics to incorporate this understanding into what we do every day this will enable us to continue to have a positive and significant impact on transplant recipients thermo fisher is very proud to sponsor the letters of hope docu-series featuring our patient consultant
Advocate alan kiefer today’s screening and panel discussion allows us the opportunity to learn more about the communities we serve and how we can work together to improve transplant outcomes as the president of our transplant diagnostics division i am thrilled to share the screening experience with you and i am honored to introduce the
Creative force behind letters of hope thank you so much nicole hi everyone and hello to all of you who are joining via live stream i’m so excited for today’s event and it means a lot to have all of you a part of the official release of our letters of hope docu-series
I’ve spent half of my life as a transplant recipient for my first transplant i was provided little to no resources and didn’t know anyone else going through a similar experience for my second transplant i received a binder of information and attended a support group where someone got ill
Twice during the meeting and i left scared thinking that that was going to potentially be my future with this in mind i wanted to create a patient-to-patient resource that i wish i had navigating this transplant journey from diagnosis to post-transplant care i’ve tried to package my experiences in an honest and vulnerable way
To address issues impacting our community there are many chapters to transplantation it is a lifelong journey and can be overwhelming so that is why i wanted to break it down into 12 topic based segments so depending on what stage you’re in you can pick a topic digest it
Come back to another one when you’re ready to watch more this can be an intimate experience watching it alone or with your family and friends i also designed it so you can enjoy the whole docu-series like we’re going to be doing today my hope is that this will educate
Inspire and empower the transplant community i’d like society at large to gain new insight and in turn have more empathy and be able to provide better support to those in need i hope that the medical field will have a better understanding of what us patients are going through
And that these segments will spark meaningful conversations and hopefully lead to positive change within our community this saturday marks my 20th kidney transplant anniversary being a patient advocate is a really important part of my life i’m so grateful for thermo fisher for believing in patient advocacy and affording me this opportunity
To channel all that i’ve endured and learned these past 20 years into creating this evergreen resource for our community i believe the impact and power of storytelling has no bounds our stories connect one another they inspire us they give us hope and they make us feel not alone
I hope after hearing my letters of hope that you will be encouraged to write your own i am thrilled to now introduce letters of hope when you find out that you need a transplant it’s just really scary and overwhelming it never comes at a great time in life that’s not how receiving a
Diagnosis works and i’ve been in your shoes of being so scared and feeling alone and wondering what your future is like and if you’re going to have restored health again i think that we need to be kind to ourselves and give ourselves time to process the news
Change can be really hard on people and when you get a diagnosis and you know that you’re going to be different and there are going to be new normals throughout the way i think the gravity of it can be really devastating i underestimate the power of ourselves mentally and physically and
I think that we underestimate how well we can adapt to change i’ve been living with kidney disease for almost 30 years i’ve been a transplant recipient for half of my life when i was a child i couldn’t see a future for myself i didn’t know anyone
That was living a life that was joyful post-transplant i went through my whole youth with many questions feeling alone and no support except from my parents and now as an adult experiencing what it’s like having a community and a circle of support around me it’s night and day when you’re
Around people that get it that truly get it that you can talk about lab numbers you can talk about the emotions of this journey you really don’t feel alone in it and life can surprise us because i never imagined that i would be healthy and well after receiving two transplants
And i think that’s where hope comes into the picture because we don’t know the good from this we know that challenges will come and that we have to endure a lot when going through a transplant but there’s things that can surprise us along the way like we can
Be surprised by how strong we are and all that we can endure and if we hold on to that hope of the good that can come through all of this it makes the journey a lot easier and sometimes having that hope just helps us get to the next day
Receiving a transplant isn’t a cure it’s a lifelong journey and i’ve been fortunate to get to that other side and be able to experience life post transplant and i’m an all every day by how transformative this journey has been and my wish for you is that with a sense of hope
And surrounding yourself with a wonderful community of others going through the same thing that you too can live a fulfilling and joyful life post-transplant polycystic kidney disease goes back as far as five generations in our family growing up i had no voice i didn’t know anyone else going through our disease except
Knowing my mom had it and i had family members that passed away but the unique thing is we didn’t even talk about it within our family it’s like i got sick and we dealt with it as a child finding my voice could have been if i just saw
Someone else that was going through the same thing and that could have made me not feel alone absolutely so there’s different levels of finding your voice whether it’s seeing commonalities and somebody else whether it’s the ones that are actually standing up on a stage and advocating for the community as a whole
And i think no matter what level it is there’s importance to it when things appeared because they did i i can’t describe how devastated i was in her adolescent years and teenage years i finally go to doctor’s visits and the doctor would say well how is she and i’m like
And then i’d explain how she is like you’d sit there and then or even hurry up she’d go like mom go ahead and answer for me she was my mom my friend and took on the caregiver role i was still the person that answered the questions
Um took the notes for her medicines and everything and you’re dead and he’s he’s a rock absolutely she got her voice from right after she got her transplant and when uh a nurse came in and she told valen the medicines to take and and i’m like okay what’s that and what’s
That and she’s like um no no this isn’t this is valen if she wants to succeed with us it’s your role i actually trusted it because she was by this time on board and she was absolutely ready to handle it now i feel noah being my caregiver it’s more of a
Partnership because i’m an active member and i think sometimes finding your voice could be as simple as seeing yourself in someone else meeting others that walk in your shoes about to go through what you are the comfort in that is huge just that you feel seen and heard and
See somebody that’s post-transplant and say okay if she can do it i can do it and that in itself can give you hope a young york county woman has spent most of her life struggling with an incurable kidney disease now her story is being told valine kiefer she’s a patient
Advocate valine kiefer she’s had not one but two organ donation finding our voice doesn’t necessarily mean it’s speaking and sharing i think it can come out in other beautiful ways for me i learned of my love of writing and that has become so therapeutic i’ve seen many in the community
Who pain and draw and do all kinds of art and that’s just a time for us to escape in a healthy way and get to a positive place and separate ourselves from all that we endure it’s almost like we have this this pen up experiences and and challenges and these emotions that
Build up then it’s like we don’t know what to do with them so they need to come out and we have that choice we can take these dark challenging times and we can turn them into something meaningful and beautiful and help other people you know whether that’s finding our
Voice to share it with just one individual to help them on their journey or many individuals or create something beautiful i think there’s a lot of opportunities to do it and it doesn’t have to be on a large visual scale it can be small and intimate advocating for yourself can feel like a
Full-time job sometimes you’re dealing with your sickness and your appointments and your normal day-to-day life of cleaning your house and making dinner and when you’re navigating all of this you’re doing this a lot of the times not feeling well and it’s hard to find the energy to do everything
Advocating for yourself is speaking up knowing your body explaining how you feel explaining the importance of certain care that you need when i go to the emergency room i advocate for myself by having a spreadsheet that lists out all of my medicines and allergies and surgeries
Having tools like that to be able to help others understand my health history really quickly when i’m in an emergency state and when we meet a doctor or a nurse for the first time and we’re in critical need of of emergent care it’s really important for us to be able to be
Confident to share what we go through in our condition with other people because we’ve lived this journey for so long we know it best we know how we feel we know how our body has handled certain instances like when i had repeat sepsis episodes i knew how my body would respond to that
And it was important for me to be vocal and be able to share that with the doctors caring for me of this is what happened in the past and this is how i usually respond to it and they can’t predict that when they’re just meeting us for the first time
And i can tell you from personal experience how important it is for us to listen to our gut and follow our intuition there’s been instances where i just had a feeling something wasn’t right one of them was when a nurse was changing the bag on my iv pole and the
Room was dark she left and i just had a feeling something wasn’t right so i told my parents to turn the lights on and they turned the lights on and my iv tube wasn’t primed and if i didn’t follow that gut and take action on it there could have been
Severe consequences that i would have had to deal with when i was really sick and kept getting repeat sepsis infections we were doing tests after tests and we just couldn’t find the root cause of them it got to a point where i had suggested getting a
Pet scan done that was the one of the only big tests that wasn’t done yet and everyone said that usually is only when they think you have cancer and i kept saying well let’s just try it and it was my intuition that we needed to just try something else and that determination to
Just keep going and eventually the pet scan was approved and the pet scan results showed that my liver lit up and that’s what led us down the path of looking into my liver which was the root cause of my sepsis infections and if i didn’t listen to that inner voice and
Follow my gut and really push and be an advocate for myself it could have taken longer or we might never have found the reason for my repeat sepsis episode so i think just hanging on to that and not giving up even if it takes a while to convince
Others to listen to you or even believe what you say our voice our patient voice is so important in this journey because it’s our path we live it we understand it better than anyone else and it’s important for us to just continue to speak up for transplant evaluation the time frame
Of it can vary but for us it was a two day long experience about 10 hours each day appointment after appointment starting first thing in the morning you’re getting evaluated to see if you’re sick enough to need a transplant and well enough to be able to endure the
Surgery and this whole time that you’re going through it you’re severely ill When i found out that i needed a life-saving liver transplant when my hepatologist gave her number one suggestion of moving out of state for transplant i instantly said we can’t do that how can we do that like at the time i’m severely ill and to think of just
Uprooting our lives moving out of state it seemed so huge so impossible yeah at this point where fallon’s health is to the point where she is very ill walking down to the to get the mail at the mailbox is a big task and her team throws this option on her to relocate to
St louis and we just don’t know how we’re going to be able to do this as a caregiver you’re looking for the best option the best possible outcome for your loved one and so when she told me that the best option would be to relocate you’re in this state of
You have two choices fight and do everything you can or give up and that wasn’t an option for us and it blew my mind because in that moment i had this almost sense of relief taken off my shoulders and the power of support and what caregivers can give us
Has so much value i think more than they even understand and it was that moment that our journey began towards looking into getting dual listed potentially temporarily relocating and having hope to maybe have restored health and a second chance at life i encourage you to search out the best
Options if that’s getting dual listed finding the best location for you to hopefully have the best outcome and receive a transplant as soon as possible With this journey it’s really challenging to have so many things out of your control and trying to focus on the things that you can control is so helpful being as organized as you can leading into transplant evaluation as you wait for the call as you hope that you get
Listed and find out that you can receive your life-saving transplant it makes us feel like we do have some say in what’s going on we can help the outcome of what’s going to be in our future and that helps keep us grounded through the whole process what i always find interesting about
Growing up with health issues is that i don’t think i ever expected to find someone like noah to be able to step up and and join in on this journey because as you hear when we talk we say we like i even say when we got a liver
Transplant because it feels like we did because he was there every step of the way and i think that exemplifies the power of a patient and caregiver partnership in this journey i feel extremely lucky to be able to not only have had great parents to care for
Me and help keep me alive and keep me going but now having noah as a caregiver there’s so many things that he brings to the table he gives me something to look forward to and i think when you’re when you’re sick you need that joy and even when you’re
Healthy and on the other side of transplant you need still that forward thinking of positivity because you know things can come up really you know the caregiver role is is one that’s always in place i mean it really starts at the moment of of diagnosis and
From an official role as as your loved one is the patient has more health hiccups more hurdles to overcome and you really have to start to fill in a little bit you have to start to help them advocate for themselves to help speak out on their behalf to make sure that
They’re getting the care that they need you might answer kind of how they’re feeling how they’re doing day to day the patient might be like i’m doing fine they might not realize that they’re starting to slow down a little bit that they’re starting to be in pain more often or
Withdraw a little bit more and you’re that independent voice that can say well actually remember you forgot where your keys were or that you couldn’t go get the mail the other day having that perspective and giving the the reality of the situation to the healthcare team is a really important one
It can be really hard as a patient to be navigating being sick and receiving all the support without feeling like a burden or having guilt associated with it being 39 years old and us navigating health issues now for many many years there are times that of course i wish i was
30 some without any health issues would be able to have children and lead a life like that and give noah what i think he deserves and those are emotions that are really hard for me to navigate at times and i have to go through trying to be confident and
Tell myself that i didn’t do anything to cause these issues that i have and just know that i deserve love and care and i think it’s important for all of us to know that and that we need to lean into the fact that we need support and when we do need
It to speak up and ask for it and be willing to accept it and that’s been very hard for me to do yeah that’s an ongoing life lesson or an ongoing progression of of being somebody that has a chronic illness is being able to admit that you need care and accept care
And i know valen it’s something that we’ve struggled with as a team and there’s times where i want you to do less and you want to do more because you’re trying to take some ownership of your of your care but like you said and like i’ve you and i’ve talked many times
This isn’t something that you’d done to yourself this is you know a disease that has caused this issue and you know there’s there’s nothing you could have done to prevent it and in a relationship i think you go through those times of where i think he deserves better and that’s just so
Terrible to think of your self and put that emotion on yourself with everything else that you’re navigating and it’s not easy to sit there and be so sick that you can’t do the things and then you watch him taking on more and more tasks and like i tell valen i mean you know
That’s my role i i signed up for in sickness and in health and that’s what i’m doing i’m i’m here to help you do this and you have to realize your limitations as a as a patient and ask for help from from your caregiver so that you actually
Don’t add more stress to the situation i think that’s why this is a team effort even though he’s a caregiver caring for me it’s important for patients to then know that they need to care for the caregiver as well that’s that’s a necessary thing to do
Because me as a caregiver your loved one is is fighting this this battle and you want to be there to be a champion for them even if it’s just to hold their hand and the reality of the situation is you can’t care for somebody if you’re
Not at least caring a little bit for yourself but in that moment you’re blind to that and you need that other person to say look go get yourself something neat you’re not looking so good like you know go just relax hang out i’m where i need to
Be i’m around the people i need to be around showing gratitude to your caregiver is not only important thanking them verbally but also in the way that you take care of yourself and the choices you make every day because that really shows how grateful you are for all the
Hard work that you’ve done together and showing them that you can live a good quality of life is a beautiful way to thank them That’s all i got when you’re in need of a life-saving organ transplant the wait list is something that we all deal with you sit and wait in limbo for the call when you’re on the wait list you’re in need of a life-saving organ so you’re in a very fragile state of health some
People can sit on the list for a week or several years from my experience i was so sick that i remember a day where i called my health care team to remind them of how poorly i felt because i just wasn’t sure i would survive much longer during that time frame
You have such a close connection with the possibility of death knowing that you’re in a stage that if you don’t receive a new organ you’re not going to survive i wasn’t the strong wife anymore that i wanted to be and i would strive to walk around the
Grocery store with my husband noah and i was so sick that it got to a point that i couldn’t do that anymore and i’d have to lay in the car while he grocery shopped and it was so hard for me to stop doing things like that a moment
I’ll never forget is when i got to a point where noah would be talking to me and he asked me a question and i felt so exhausted that i felt like i didn’t even have the energy to answer his question and communicate with him and at that point i thought i just don’t
Know if i’m going to survive i don’t know if i’m going to make it to receive the call and that’s a really scary place to be and it’s not just waiting for that call but wondering what all is connected to that will i get a transplant would i ever be
A strong wife again would i ever be healthy you just have all of these questions going through your mind every day and that limbo that wondering if you’re going to make it to the next day make it to get the call is such a challenging space to be
In you feel like everybody else’s world is continuing on and yours is just standing still waiting for somebody to save your life waiting in a sense for an organ to become available which means that someone has to pass away in order for that to happen those are really hard emotions i think
You need to separate yourself and realize that someone isn’t dying for you to survive but it’s somebody that their journey their passing away and they made a decision they said yes to organ donation so that they can save other people’s lives when they pass on and i think looking at it from that
Perspective helps because there’s a lot of people that endure survivors guilt My husband and i we would still try and find some type of joy in every day and some type of connection to reality in the outside world because we felt so disconnected at this time we were just kind of suspended waiting for hopefully something to happen to continue our lives
We knew that in order for our lives to continue forward and for me to get healthier and us to have any type of future together would be for me to receive a liver transplant we found a sweet little coffee shop that we really loved and
We would try and go there when i was feeling well enough and i remember that week before transplant my phone is next to me at all times i had a little carrying case that i would carry it with me all the time so it wouldn’t be in my purse so i wouldn’t
Miss a call i mean that’s how important it is if you missed the call you missed the transplant and i remember saying to family and friends don’t call me i didn’t want my phone to ring and have it be anybody else but the call so that’s how vital this time period is
In the transplant journey you’re just so relying on your phone to ring but if we could get a moment or two each day a healthy escape to bring a little bit of peace to ourselves it was helpful i don’t know that we were successful in doing it every day but
I know that these small moments helped just let us breathe for a moment and give us some hope and to just trust the process and that everything would be okay and it was good for us to get out to get some fresh air to feel like our world was normal when
It was the furthest from normal than it’s ever been and i think being able to have that healthy escape was really helpful for us receiving the call is a rush like no other you’ve worked so hard the anticipation you’re waiting and to actually get that call we got it at 1am
I answered the phone and my transplant coordinator said we found the perfect liver for you we checked in and sat down and that’s where it all began kind of go through another mini pre transplant evaluation making sure that you are strong enough to survive the coming surgery
After a couple hours somebody comes in and says okay the organs here we’re going to move you down to pre-op we go down there a whole other flurry of activity happens nurses in and out poking prodding getting iv lines in and literally a thumbs up thumbs down from
My surgeon could change our future all of a sudden the nurse came around gave the thumbs up and it was go time and i remember her wheeling me off and going to turn the corner and i hear her say i hear her say do you want to say bye to your husband
One more time and those moments are really hard because then you do wonder if it’s the one more time or the last time so i remember he came running down the hallway i really just let go and trusted and just hoped that i would wake up on the other side i always
Had this feeling that if i could just wake up after surgery and see noah that everything would be okay remember i was in the operating room and it’s quiet and all i’m doing is watching everybody intently doing their job and i’m thinking okay this is happening so i said out loud everybody’s feeling
Positive today right And um everybody kind of smiles and then a nurse came over to me and she looked at me directly in my eyes and said we all love what we do and we all love being here so my first memory after transplant is waking up and all of a sudden the first
Thing i see are silhouettes of my dad and noah walking in the hallway to enter the room and i thought no way i didn’t the double doors swing open there she is awake not intubated looks fantastic for just going through one of the biggest surgeries your body can endure and
There she is looking around the room and she sees her dad and i so i had a tube down my nose that maybe not be able to talk so i tried as hard as i could and when to communicate so i was writing stuff and i drew
Three stick people to represent noah me and dad and i put this is all i had wished for i’ve been through a lot of operations to know that when they sit you up which they try and get you to move and walk as soon as possible that’s your start to recovery
Just those first steps which are so hard and painful and it didn’t take long until i had to sit down again that’s the moment of recovery and moving forward when you see that you’ve woken up you’re well enough to move again and that was really exciting that was healing
The first time i saw my scar after liver transplant that took my breath away my body really transformed because i was super swollen that i looked pregnant i was like this is my new liver baby so you just have to like roll with things and realize that you’re gonna have transformations of yourself
Physically and mentally after the surgery and just knowing that time will heal it’s your critical healing and recovery when you’re in the hospital and then once you get released you go back to clinic twice a week you get labs twice a week you take you take vitals every hour
You’re taking meds you’re recording weights temperatures blood pressure caring for the incision i mean that was our big thing because nothing can derail a successful recovery like an infection the big thing for us was again trying to control these pieces that we could try to control to feel empowered in in her
Health and in her recovery it’s amazing because life just continues to go on we work so hard throughout this transplant journey to stay well get us to the next step closer to transplant it’s important for us to be able to trust our health care team and trust the process and
Know when we have to work really hard and then know when we have to just let go and put it in the hands of our surgeons and doctors and nurses receiving a new organ and becoming a transplant recipient is a gift that comes with a whole new set of
Responsibilities because now you are embarking on a lifelong journey of being immunosuppressed i think what’s challenging living immunosuppressed is that we look healthy but that doesn’t equal how well we’re doing or how we respond to things and it comes with responsibilities and new normals that we have to navigate
When you receive a transplant it is a new organ and a foreign object in your body so we have to take immunosuppression medicine to suppress our immune system so that our bodies don’t reject the organ that we just received but that comes with not being able to fight off
Colds and illness as well i can get more sick than i would if i wouldn’t be taking this medicine and wouldn’t have a transplant also living immunosuppressed you’re at a heightened risk of skin cancer so i wear sunscreen every day and every six months i get a full skin body
Check for skin cancer our whole world and how we respond to things completely change and we have to respond differently in the way that we care for ourselves and the decisions that we make because of having a suppressed immune system another important part is for us to
Embrace that this is our new world and a big part of this is for us to take ownership and speak up and be okay with this transition in our life and know the importance of us advocating for ourselves every day even though some days it can feel exhausting to continue
To ask if somebody is sick before you go over to their house or to have to re-explain to a family member or friend that you just think by now they should know and understand being immunosuppressed and navigating covid has been really really tough for our community we started out not knowing
If the vaccine was safe or effective for our community and it hasn’t been as effective for transplant recipients now more than ever it has been important for us to take the best care of ourselves and not jeopardize the health that you have i take pills three times a day around 20
Total per day two of the medicines is anti-rejection i also have epilepsy so that’s some of the medicine and when you have a transplant sometimes other complications come from it i have high blood pressure from my polycystic kidney disease and take medicine for that as well so it’s a variety there’s some
Anti-rejection and there’s other pills that come along with receiving a transplant like supplements and things for my overall health i mean these pills are vital for our transplant the longevity of our transplants and it doesn’t limit your quality of life in the sense of travel for me i’m really
Organized before we go out in our rv and go anywhere i have individual pill cases for every day because if i don’t have my medicine i can’t go anywhere it is vital you it’s something that’s a part of every day and it’s the big component of what’s keeping you alive
I know heading into transplant it can seem really overwhelming to navigate all the medicine know the checkups that you have to do but it just becomes a part of your life and i look at it as an opportunity that i have to take the best care of myself and show my
Gratitude for the second chance and gift of life that i’ve been given when you’re starting to date someone or you’re married and get diagnosed and find out that you need a transplant the sooner you can have open conversations the better it connects you in a special
Way to be able to do this as a partnership being so open and vulnerable can seem like something scary to do but it can lead to something beautiful and even if it doesn’t at that very moment you’re giving yourself the opportunity to hopefully get to that point of being
With somebody that you’re supposed to be with the way that valen and i met was through a mutual friend that kind of took us along to a place where her and i first laid eyes on each other he asked me can i can i get you a drink and i said no
Thanks i had a kidney transplant yelling it over the music he was like hey because how do you respond to that and when he first called me he’s like hey you know naturally like what are you up to and i was like oh i’m in washington dc i’m going to speak to the
National congressional kidney caucus tomorrow and she told me yeah i’m not your average girl so if i hadn’t known that already i found that out really quickly on at the time i was several years post kidney transplant and i was thriving i was so healthy i was working full time i really
Found my passion of being a patient advocate it wasn’t even like you looked at me differently it wasn’t as if i had anything or any health issues it’s just something i shared with you about my life and there was no hesitation about any of it six months after being together
He took me out here to california and we planned and saved for two years and decided that we wanted to move cross-country what she didn’t know is that before we left for our cross-country trip i had asked her dad’s permission to marry her and in asking
That he looked me squarely in the eye made sure that i knew that valen was kind of at the healthiest point that he had ever seen her in her life and that there might be other dark days that that come and really just making sure that this was the commitment that i
Wanted to make and that i was sure and steadfast in my conviction to do it and i was you get diagnosed with something you instantly think how do i tell somebody that i’m dating or how do i tell somebody that i’m married to that i’m going to need a transplant and am i
Going to have kids am i going to have a family like these are the real life thoughts that we have when we find out that something is going to impact our lives like transplantation and to to have those conversations and be honest about what this whole journey
Might look like is really needed it’s just open honest conversation because it’s going to be difficult it’s going to make the journey that much more sweet but that much more difficult i think there was only one doctor in this entire journey that sat us down looked us both square in the eye and
Said is having a child important to you because if it’s important to you we’ll figure it out and we’ll make it happen there are a lot of people that just really want to be mothers they’re very passionate about that and that’s a really hard thing to go
Through to think that you might not be one or that you can or it won’t work out and navigating those emotions are so challenging this is something that you really want i believe that there is a way no matter what we’re going through i think we should still strive to seek the life
That we really want to lead and i believe with our determination our health care team the support from the community i think a lot’s possible i think the nice thing with being up front with somebody is that you can learn if they’re a good fit for you if you’re honest and you
Share what you’re going through or what you’re going to go through in the future and you can see that it’s just too much for them then you know that that’s not the right fit for you and that’s okay as hard as that may be you want to find
That right person you deserve that person and that there are the right fit and people out there to care for you and share this journey with you On our transplantation journeys we are bound to hit some bumps in the road there are additional unforeseen health complications i like to call them health hiccups and the more equipped we are to handle them when they pop up the less they will derail us often on our transplant journey we can
Endure hiccups that are related to our transplant or other health issues entirely after my recovery from kidney transplant i did well for many years when all of a sudden i started to get sick again and found out that my pkd had affected my liver and i needed a second
Transplant my family and i were devastated we were blown away that i needed a liver transplant on top of a kidney transplant the reality is that it might not just be our transplants that we have to deal with i navigate being a transplant recipient epilepsy and chronic pain from scoliosis
Sometimes one of those things almost gets put to the side and i can’t even take good care of it when something else is heightened through these health challenges some of my health hiccups can be small like my blood pressure can drop really low or i could have a seizure it
Has been such a variety of health hiccups but regardless of their size they feel very significant i remember when i needed my first liver biopsy after transplant it is quite straightforward but for me i was so concerned that it was my transplanted liver and i wouldn’t have bleeding and i
Had all these questions and it was such a challenging experience because of what i have been through leading up to it and i think a lot of times we have to be kind on ourselves that even if it seems small it’s okay if to us we’re navigating all the emotions of it
Feeling like it has a huge impact on us but i think the sooner we can learn how to be prepared for health hiccups and then how to handle them and be able to move on from them quickly really helps put it in perspective and get through these inevitable little blips that will
Happen in our health journey with health hiccups i think it’s good to take them on day by day and even though we know that there’s likely more challenges to come not to focus on that and get stressed or overwhelmed that we’re going to have to deal with more things in the future
Now i’m used to them that when my blood pressure starts to plummet i know i need to lay down in a couple hours it will pass and then i carry on with my day you all find positivity and hope in different ways for me personally i take
It one step at a time and find something in every day that brings me joy whether that’s going out in nature spending time with my husband having a community to talk to having a circle of support has really been important my wish for you is that you’re able to
Stay close to the people that provide you support and happiness and find things that bring you joy through health hiccups that you may endure because most of them do pass in the transplant community one thing that we all have in common is our scars but the scars that we don’t talk about enough
Are the scars on the inside the ones we can’t see so it’s especially important for our community to shine a light on mental health when you’re receiving a transplant you’re assigned a transplant coordinator but you’re not assigned a resource or someone to go to for counseling support for what you’re going through you’re
Told that resources are available but you have to take the action versus having the support provided and making it easier for you this is a topic that isn’t always easy for people to talk about and it’s not just for the recipient ourselves i think it’s for our
Care system as well for caregivers those who support us like family and friends i remember having a conversation with my mother-in-law when i was getting close to receiving a liver transplant i was on the wait list wondering if i was going to get the call and survive and i asked
My mother-in-law if she thought that noah was thinking that i was going to die when you face death it’s inevitable that you’re going to look at life differently that you’re going to have things to process that you may never be able to fully process i think part of transplant evaluation
Should be an appointment with a therapist a counselor to discuss what you’re going through this is a life and death situation and it would really make a difference in how we’re able to navigate the journey recover and the quality of life that we could live post-transplant
When i was young and i’d see other people without any scars i’d think back to when my back didn’t have any scars or my abdomen didn’t and i think it’s important for us not to look back on our journey and look forward on it and because of these scars we’re able to
Have a future and look forward to things i was the young person that was ashamed of my body and now i’m proud of what my body has been able to go through it’s important for us to be proud of who we are proud of what we’ve been able to
Endure and overcome and embrace this as a beautiful part of our health challenges it’s completely normal to feel scared and overwhelmed and confused about your future when you’re heading into transplant post-transplant the long journey of living immunosuppressed group sessions are really impactful because we can share experiences find common ground
With other people seeing the commonalities between us the variety of our journeys and how many people have gone through similar things and how many people are doing well and living a good quality of life post-transplant and these type of conversations really help us navigate the hard times and give us
Hope to keep moving forward sometimes we have to come up with ways on our own to cope for me before liver transplant every morning i’ve listened to the same song and i’d visualize myself healthy and happy and that gave me something to look forward to and something to work towards
The truth is on this lifelong journey we have to deal with questions and concerns our entire life like how long will this organ last will i need another transplant and it’s important for us to be able to be comfortable to really share what this journey is like and embrace the things
That we have to deal with and i think that’s the importance of us being open about it and having people that will listen and understand to help normalize what we’ve been through and helped give us comfort and that there’s a purpose to this journey and a bigger picture and reason for all
Of what we’re going through i am blown away every day to still be alive it’s still amazing to try and grasp that because of two selfless organ donors i sit here today extremely healthy and happy and their gifts restored my health and have enabled me to live the second half of my life
I met my kidney donor sally when i was in eighth grade and when she found out that i was really sick she stepped forward and got tested to be a donor she felt a calling and like she was the one and she wound up being an extraordinary match and
We would have never imagined her gift would have led to me still being alive at 39 years old today it’s just extraordinary the people that do this that selflessly give of themselves to give someone else a better life i try and show sally my gratitude through action by the way i
Choose to live my life the way i strive to help other people and really just live the fullest life i can and we recently went on an rv trip and i was texting her on the way telling her what we were doing and was excited to be
Going and seeing new things because i can do those things because of her and it’s amazing to continually be able to show her how impactful her decision and her gift has been we get asked questions a lot in life and when you think of going to the dmv
And one of the questions you get asked is would you like to be an organ donor check yes or no there’s a person out there that checked yes and chose to be an organ donor and because of their decision you have something as precious as a second chance and a gift of life
It’s a whole other set of emotions to receive a deceased donation like i did with my liver i don’t know who they are i don’t know who my donor family is but i just really wanted them to know how grateful i am and i’ve been thinking lately about writing
Them another letter to let them know the extraordinary life i’ve been able to lead these past several years because of their loved one ripple effect of good that has come from my two transplants is just beautiful and having that opportunity to become a woman and fall in love and get married
All of those things that we just didn’t even know if they were going to be possible i think most importantly i’ve learned the value of the quality of your life versus the quantity of it because there were a lot of times that i just wasn’t sure how long my life would
Last and now having all of these extra years i’m putting all my energy into making them the best and having the best quality of time that i can while i’m still here i’m so thankful for all of the challenges and the trials that i’ve been through because it’s
Shaped me into who i am today and i’m really proud to be a double transplant recipient and to have a connection with life and the meaning of it that i wouldn’t have otherwise my hope in sharing my stories is that other transplant recipients will see the joyful and fulfilling
And productive life you can live post-transplant show potential organ donors how grateful transplant recipients are and the opportunity they have to give someone else a second chance at life even though it takes some work and we go through some really really challenging times the other side is extraordinarily beautiful
And it’s so worth fighting for this transformation into a new version of ourselves one that appreciates life on a greater level than most others do we come out with more than just the gift of life we come out with gifts that i think only we can feel and experience so
Good afternoon everybody my name is chris lawrence and i lead medical affairs for transplant diagnostics as well as being a practicing nephrologist first of all let me begin by congratulating valon on the letters of doctor series which is an amazing achievement provides an in-depth anxiety for day-to-day realities for transplant
Recipients and i think it serves another round of reports [Applause] for the next 45 minutes or so we’re going to be having a panel discussion uh joining me will be valen of course uh drew beirut who produced the lesson uh doctor series caden hogan who is here with his family
Who’s a three-time chicken transplant recipe and phil shin who’s an la local who probably knows l.a better than most of us having pounded the streets of the l.a marathon not once but 11 times he’s also received a liver transplant from a friend a living donor and it hasn’t stopped him running marathons
The panel’s going to be moderated by my colleague chris mccloskey but we’ll be taking live questions from thor and also online but before we move on with that part of the conversation i’d like to introduce tom moan who would like to share some exciting news with us tom is the
Chief external affairs officer for one legacy which is the largest organ recovery organization in the united states one legacy serves more than 20 million people in southern california and since tom arrived at one legacy organ donation has tripled in 2021 one legacy facilitated 1688 life-changing life-saving organ transplants please join me in welcoming
Tom [Applause] well fallon thank you noah thank you for sharing your lives and stories with all of us with the world and with those who will live because you share your stories you know storyline storytelling underlies everything we do in donation and transplantation now we know that most people going about
Their daily business would rather not think about organ donation it’s when i first got to one legacy we were called the southern california organ procurement center the first thing i did was get rid of the words organ and procurement then but spoke to the more emotive part
Think people really think about which is the legacy the legacy of life that goes on but far too often before hearing a good story people think organ donation is about death and loss but i can tell you and i don’t really need to tell anybody in this room that
Transplant recipients and donor families know that it is not about the loss it’s about the legacy of life taking that first positive step forward of getting control back in your life and making something good come from an event that happened it happened but what did you do to make
Something good come out of it and it’s the stories that they tell and that get that we help share that opens up people’s minds to realize the value of organ eye and tissue donation at one legacy we’ve tried to create opportunities for people to share their stories because that’s the only way we
Will change minds and save lives the to meet to reach the very largest populations balan talked about very nicely there we have our friends at the dmv and the dmv our remarkable act to tell you the truth about sharing stories inviting us to be there to be present
And but it all comes down to millions of people seeing a box they can check sometimes they’re at the dmv sometimes they’re at home doing it on the table getting it in the mail but hopefully they’ve heard a story that inspired them to do this
Um one of the the biggest ways we get those stories out here in southern california and across the nation is through the donate life float in the rose parade when legacy’s put on this float for 20 years is our 20th year coming up and we very much welcome
Thermo fisher scientific as a partner in this ava’s heart our friend ava is here as a partner in the donate life float that’s coming up this year um it is a chance to get the stories from donor families recipients and professionals from across the country and around the world we’ve had
Participants from korea from japan from china from europe as well as pretty much all 50 states and these and these stories are told by donor families whose loved one is honored with a flora graph on the float they’re told by riders who have received a life-saving transplant they’re told by walkers who
Donated been living donors donated a kidney or a piece of a liver or their recipients and prove that you can donate an organ we get transplanted and wake up at five o’clock in the morning when it’s 30 degrees in pasadena walk five and a half miles when it’s 70
Degrees or 80 degrees when you’re done and live to tell about in fact celebrate it and share that story last year we received 1.5 billion media impressions from the the rose parade donate life load alone so it is a way to get the stories out there to a very large world
Of course we also use things like donate life hollywood uh which we have been we were doing some work on the other day and we’ll have the donate life hollywood inspire awards coming up on the 25th of this month if you want to go let me know
And they’ll be held in hollywood as they are and we’ll honor shows that tell the story right the resident tv show actually produced probably the best episode of organ donation ever done in any media and grey’s anatomy made up for all the crappy ones they did in the early years
Before they met us we we don’t we try to be helpful we don’t send too much flame mail we mostly like to work with writers producers directors to get the story right to know that the human story the story that balon tells is far more dramatic than the kidney
That’s stolen out of the ambulance at the stoplight and transplanted in somebody’s garage because we know that happens every day so the these are you know but that’s a way to get stories at the mass and be at the highest level across the nation at the end of the day it’s the personal
Stories of donors donor family members recipients we and all of our organ procurement organization colleagues have ambassadors who go out and share their stories around the communities at large and these are sometimes they may end up on the float and they may be publicized in in media they may be stories of a
Honor walk at a hospital that actually got into a script of a tv show and and and we thank the good doctor for that and a few others for the same sort of thing but it’s the personal story of an individual and our ambassadors are out of grassroots programs everywhere
We had a case recently the first time we were back doing tabling at the inglewood dmv a largely african-american community with a large number of people waiting and the gentleman walked by our table and saw the sign and said one legacy or donate life and he said i’m
Not going to be an organ donor because our people don’t get transplants one of our ambassadors to the table who was also african-american like the gentleman said really because i’m african-american i’m your people and i got a transplant he said really she said yeah what do you get
Well i got a heart transplant and she told her story he said well i’m going to register and 10 people in line joined him well that’s 11 registrations it may not be the 18 million california do a registered but that is a drop in the that’s still stories or drops in the
Pond that ripple they ripple through families they ripple through communities and they ripple because they they ripple so strongly because they speak to that incredibly powerful emotion that is unique to our element our work in the healthcare world that place where the the raw emotions of loss of someone who’s passed away
Or in the potential lifesaving of someone who will pass away without that gift of life and both of those events coming together at the one time and the one thing that we know comes out of that is caring love compassion and gratitude and i will tell you my
Experience of 22 years in organ donation i’m not sure who’s more grateful recipients or donor family members and if we can share those stories we can end the 20 deaths on the wait list every year every day and we can help get the hundred and six thousand people
Transplanted and i will just finish by saying i am i personally and one legacy is incredibly grateful to be partnering with thermo fisher scientific and valon to share these stories and get the message out uh even more broadly in our world so thank you very much for
Inviting me and allowing me to be a part of this and again thank you and congratulations on an amazing storytelling tv shows movies and other storytelling opportunities in the media that promote and share the story well and dramatically in inspiration and this year letters of hope [Applause]
Say that again i can say that again because i thought it was just naturally loud my apologies um yeah i am very very pleased to say that on august 25th um at the donate life hollywood inspire awards in hollywood where they should be um letters of hope with valenkeeper with
The help of our friends at thermo fisher scientific is receiving a donate life hollywood inspire award because what’s more inspiring than what we’ve just witnessed thank you valen for being part of this thank you for making this happen hi everybody i’m chris mccluskey director of business development for the transplant diagnostics business unit
I will be co-moderating our panel today um so let me introduce you chris has already given a nice introduction of valen the creator of the wonderful letters of hope docu-series fallon if you could please come to the stage it would be great i’d like to invite drew beirut the
Producer of the series to the stage a little bit of background on drew he’s an la based director producer and production company owner his work is distinguished by its indie sensibility these are valen’s words and he says it’s been an honor to work alongside valen on the production of letters of hope
Please please give drew a warm round of applause [Applause] i’d like to invite phil shin to the stage phil is a husband father and serious runner from southern california he was diagnosed with a rare hepatocellular carcinoma in 2018 and has been cancer free since undergoing transplant surgery in 2019 in spite of
The health challenges he experienced phil never stopped running and believes his commitment to keep going is what helped him to continue living phil hopes we all find ways to keep living no matter what our health status may be please welcome phil to the panel [Applause] i’d like to welcome kaden hovind who is
A three-time renal transplant recipient who received his latest transplant in 2017 which has kept him healthy and thriving to the panel caden is passionate about educating the general public about issues affecting transplant recipients and those living with chronic disease please welcome kaden to the panel last but not least i’d like to welcome
Dr christopher lawrence a nephrologist and our senior director of medical affairs and business development to the panel [Applause] all right so it’s been a great screening um valen i i want to kick off with you um the docu-series is entitled letters of hope and in the first episode you talk
About the importance of finding hope particularly when faced with a challenging diagnosis why do you think hope is such a critical part of the transplant journey i think it’s from my first hand experience of having none to then experiencing what it feels like to have hope so
Caden holds a special place in my heart because when i was his age is when i had no hope and me sharing my story is striving to help individuals like himself and in his stage and i think we just whether just diagnosed or through the rest of our journey we need that
Something to look forward to something to hold on to because this isn’t you get a transplant and you’re good this is a responsibility um you know a gift that comes with challenges but i think when we have that perspective and we have the hope that we can see through other people’s stories
And that’s why i think it’s important for all of us to share our experiences because we have that visual representation of what our lives can look like and that we’re not alone and i didn’t have that when i was younger and that’s one of my missions of what i’m striving to do today
That’s a really interesting response and it brings me to to drew um as the producer of the series how did you and valen come up with the concept of the docu-series um and what why did you think this was the right format to tell valen’s story
Yeah i think as far as the format of doing it in a film you know um a picture says a thousand words but to me i think a film says about a million it’s just a way to really get across to people and valon is just so natural and elegant
And powerful and radiant on camera that it’s just something that is deeply impactful and i think will resonate with people so we wanted to do a film of some kind but we also wanted it to be appropriate for whomever would be watching wherever they would be along the transplant journey so that is
Why we’ve broken it up into 12 chapters 12 different letters and it’s meant so that wherever you are in your trajectory in your life story you can start wherever it feels appropriate wherever you’re comfortable and some people can do the netflix thing and binge it all if they like like we just
Did thank you all for doing that by the way but that was kind of the thought behind it great valen how did you how did you come up with the content for the series through my lived experience you know it’s like i tried to think of
How to take this huge journey and break it down to main topics of course we could address a lot more and hopefully we will in future projects but um trying to take these different stages and um it came together really naturally actually storyboarded it in a couple
Weeks and my husband had said to me you this is your life you don’t it’s not like i needed to practice or study it and i just really wanted to share that authentic journey so it would come across as patient to patient so that it just felt like you’re watching it and
You’re in a living room with your friend or somebody and it had that feel to it of patient to patient support because i’ve seen the impact of that the weight that is lifted off of somebody’s shoulders my very first speaking engagement the people that came up afterwards and was
Like oh my gosh me too or my dad this or my mom that and just seeing that them looking at somebody that has gone through what they’ve been through or what they’re about to go through just the weight it took off of their shoulders so i really wanted to try and
Break this journey down and make it in a kind of an easy to digest way i’ve gotten through this by taking it one day and one step at a time so i wanted to take that approach when i did the storyboarding of it and it was really important to me to bring along
The caregivers in this journey because i just always go back to thinking at transplant evaluation the only thing that’s in bold and underlying print is that i couldn’t go through evaluation without a caregiver it’s like i wouldn’t be here if it wasn’t for my caregivers i
Wanted to bring that to light and i also wanted the opportunity when assembling the topics is addressing things that i wanted to bring to light that i don’t think are talked about enough either there just aren’t necessarily comfortable maybe conversations for people with dating and family planning and also
Mental health is really important to me and i was really grateful to be able to discuss that and bring it out in the open well that that brings us to my next question which is about finding your voice so kaden this one’s for you in the second episode of the series valen talks
About the process of finding her voice at after her first transplant at 19 and how it led her to discover this passion for writing we know from previous conversations and town halls with you that you have a deep passion for movies in fact you and i share a favorite movie
In almost famous which i think is amazing my question is how have you sort of come around to finding your own voice and what role has transplantation played in that process well ever since i was young my parents were the caregivers so a question was asked and they gave the answer because
I didn’t really speak up for myself and with time i eventually learned how to speak up for myself because not only did i feel that i should but i also felt that i needed to especially because i’m going to college in a few years i will be leaving home so i’ll
Have to take care of myself and know how to do that just like i need to know how to do all my medications book appointments it’s just more something i had to gradually learn but once i got the hang of it i started doing it all the time even tomorrow i have a
Doctor’s appointment and i plan on talking the whole time it’s wonderful valen you dedicated a whole segment of the series to the importance of advocating yourself in line with with caden’s response here and shared your story of persistently requesting a pet scan to identify the cause of repeated sepsis infections when your care
Providers told you it was an unnecessary test as we saw from the screening you ended up being right as a patient why is it important to trust your instincts also how do you remain firm in your convictions in situations like that that can be really tough i we
Know our bodies we know our health history better than anyone and i’ve experienced so many times of going to the hospital and needing to speak up because either the nurse said oh so you you you got two kidneys when you got your transplant and i’m like no you only
Get one so you realize the education that you have to provide to the people caring for you and sometimes that’s really scary the other thing that’s challenging is you’re severely ill and having to find that strength to advocate for yourself so i’ve tried to help myself by i have a very detailed
Spreadsheet because when i would get sepsis i’d have rigers and a fever i’d feel awful sometimes i was even by myself when i called 9-1-1 and they came to the house and i had something to hand them tangible with all of my information knowing that during those situations i
May be too weak to even tell them all of that so there have been so many times that i’ve had to do that it’s made a huge difference but it is hard to to almost get the confidence to do that it it makes me think of
With my back in scoliosis i can’t lift heavy things and i have to ask for help while traveling for people to get my luggage off the carousel and that sometimes you’re just like you have that pause where i’m like okay you can do it just ask you kind of just need to like
Almost encourage yourself and i still even have to today but i have witnessed time and time again that there’s been moments that it’s even saved my life so it’s so important for us to understand this is our journey it’s really important we speak up and just um just trying to almost like support
Ourselves and knowing that that’s the right decision and and there’s been times where i’ve just really had to try and encourage other people to get on board and and you know and trust me you know totally i understand and phil and kayden i would love to hear more about your
Experiences i mean it would be great if you could share sort of an example of how you’ve advocated yourself and some of the challenges that you face when when having to be your own best advocate um okay story time um about two or three months ago i went in for my normal infusion
And i walk in and there’s a nurse i haven’t had before so i’m like okay nothing out of the blue it’s just someone new so they may not know things exactly how i do them we go through the normal uh blood pressure checking weight checking height and i’m like okay everything’s
Going great and then she goes to draw my labs and usually you use the needle in the arm to do um grab vials she decided to use a syringe and i’m like not the best idea but okay she drew maybe um a violent half less than she would needed to
So i’m like okay that’s worrisome and then the next medication i needed alisher she drew about 10 to 20 minutes late and it was with even less blood so i’m like not going great infusion when um she wanted to do pre-meds before and i’m like no um sorry i mean before
We did the pre-med iv and in the end i eventually emailed my doctor and i’m like these things didn’t seem right so i don’t know if the medication is going to come back he emailed me later he’s like kaden you were completely right if anything like
That happens again here is my number you contact me it’s really impressive thank you so much for for sharing that of course thank you phil yeah i uh i have one that was actually quite frightening and very frustrating um well we’re going through this journey
Of waiting for your donor in my case i knew that my only option was a living liver donor transplant so we knew that we had a number of people who submitted themselves so we’re just going through the process of just waiting and i shouldn’t just say just the process because it’s agonizing
Absolutely agonizing because you have no idea when you’re going to get that call it wasn’t until i had always expected that my transplant coordinator would contact me and say hey you’re we’ve matched we found your match and you’re going to be scheduled for surgery this day that never happened but
What eventually ended up happening was that one of my dear friends of over 20 years he sent me a text saying hey what’s the latest with your liver donor situation and kind of random because you know we’re good friends but we never really got deep into you know my health
Issues i knew he cared but i said i don’t know it’s great that you’re asking but i have no idea what the status of my uh donor is and he responded well that’s funny because i was told that i wasn’t allowed to let you know until they told you and
I was confused because this is the first time we’ve ever talked about my transplant and i just thought what are you talking about and then he responded i’m your donor i said wait i i i dropped the phone i was i obviously just went through the full gamut of
Emotions but then i just realized wait i thought my transplant team was supposed to contact me well it turned out that he had been told that he was going to be my match for well over a week and they had his team had thought that my
Team was going to contact me and my team thought that his team was going to con that’s when we just said you know what we’re going to own this we’re going to drive this we’re going to tell you look we have connected this is when we want the transplant we
Established the date and we said you guys need to clear your calendars to make sure that we can get transplanted and that’s when we just take full ownership of the entire process right but again it was just one of those things had he not you know
Been as proactive as to send me this because he was also thinking well maybe i’m not the guy maybe i’m the second guy so but he he was also agonizing in this weight because he wasn’t getting any information so he found the courage to just reach out to
Me directly and let me know look i’m your donor and yeah so if it weren’t for that who knows we could still be waiting right now talk about a fragmented healthcare system chris as a nephrologist treating transplant recipients how do you incorporate patients expressed needs concerns and preferences into your medical practice
It’s a good question chris i was wondering what you’re going to ask me um remembering that it’s in advance by the way i should read my emails more carefully so i you know i i would um i was reflecting on what i would think with valon as my patient and
I i was thinking that no matter how demanding fallon could be and i imagine she could be quite demanding i’d much rather have the full engagement from somebody that i was working with than somebody who doesn’t come to clinic who doesn’t do their labs who doesn’t take their tablets and so
What uh valen’s done here by taking control of her own healthcare and by advocating for herself and by others is really helping that enormously i think the approach that what i call it is shared care i’ve seen a lot of different approaches to healthcare i’ve seen people telling doctors what
I’ve seen doctors telling patients what to do and not explaining why and then wondering why they don’t do it and i think it’s pretty obvious you know why would you do something if you don’t understand why you’re doing it and so my approach has always been to have a discussion and
At the end of the day the patient’s you know in charge they have to agree with the health advice that you give what i’ve found though is that as long as you’re able to have a conversation who’s that as long as you’re able to have a conversation explain why the advice is
The advice that it is and go through the options uh then usually you can find an accord that’s uh you know the the right path and the other thing i would say is that there’s it’s never usually the case that there’s only one right way to do things there’s usually
A way to accommodate people’s preferences or needs and still arrive at the right destination thank you for the response uh phil i had a question for you just to talk about the fact that you had um a very rare procedure um there were more than 9 200 liver
Transplants performed in the u.s last year but only five of these were from uh living donors i wanted to ask you about your experience of being worked up but you already shared a bit of that process for us if you’d like to go into a little bit more
Detail around that i think it would be relevant because i don’t think a lot of people understand the dynamics or the work up around living liver donation as it compares to kidney so maybe perhaps talking um at some at some length about that would be helpful for the room and
Those online yeah thanks chris i appreciate you creating some space to let me talk about because i i do feel that um there’s a fairly gross lack of education when it comes to the opportunity to do be a live liver donor so i’ll confess i had no idea either
I thought my only option was a deceased donor but when i went into the transplant clinic and they informed me that i had to receive a liver transplant they looked at me i’d actually just i had already had a previous liver resection six months prior but my cancer returned and in that six
Months i had actually gone in and run another marathon and um super grateful that i was able to yeah but um my health was actually a detriment to where i was listed i was actually at the bottom of the list my meld score came in at six which is
The equivalent of just writing your name on the sats and for those who don’t know in the room the highest is 40 and the closer you are to 40 the more likely you are to be transplanted right right so when i went in they just said look best case um you’re probably
Looking at three years before you can realistically receive a disease liver donation and or deceased liver transplant well i had cancer right and the liver being a vascular organ obviously there’s higher risk by just sitting there and waiting for three years so um that’s when they shared with me that
Oh you actually have an option for a living liver transplant and that’s when they educated us where on my side as a recipient the process is the same deceased or living you’re you’re listed and you wait right and you you go through the protocols of coming into clinic getting a value just making
Sure that your liver stays stable and again because i was a runner i was fairly healthy that wasn’t really a concern it was really just you have cancer we need to make sure that the cancer doesn’t spread elsewhere meanwhile we had to send out a communication to our network
Of family friends and my colleagues to see if anybody would be interested in becoming my donor so we at that point i kept my diagnosis fairly private so that email that was actually sent by my sister because i just didn’t have the courage or the strength to send
That out myself i joke that you know it’s not like you’re asking for twenty dollars from someone to borrow twenty dollars and for myself i get very uncomfortable just asking for someone to pay me back the twenty dollars so to actually push out a note to say would you
Mind carving some time in your calendar to be my donor it just i couldn’t do it so my sister just took full ownership of that and pushed it out so a lot of people they were just shocked that i had cancer because me as a runner and being
Fairly healthy this is just not what they had expected so later down we had found out that there were 16 people actually submitted themselves to be my donor and that process is uh there’s an online evaluation tied to my transplant clinic and my transplant clinic is uh keck medical center of usc
And they would simply just name me as the recipient and then go through a very long uh online questionnaire that evaluates their physical health but more importantly their mental and their psychological health because those are the factors that i believe weigh most in the evaluation because they want
To eliminate any risk of this person backing out and of course they have every opportunity to back out even up to the point of surgery so so that was that was just uh on my side absolutely agonizing because we’re just waiting meanwhile um on the uh
On the side of the folks who are interested in becoming my donor they’re also kind of in the dark right so they submit individually and they are essentially ranked based on their health their age and their general i think it’s health age and blood type so so based on that everybody’s ranked and
My donor actually ranked at the very top and he never he never backed out he he stayed committed and on his side the logistics of it i was explaining to chris was just enormously challenging for him because one they are discouraged from disclosing themselves as my donor to me so
I’m being handled by my team he’s being handled by a completely separate team but logistically it was extremely challenging for him because he lived in portland i was here in los angeles so it wasn’t just okay drop my name in the hat and then just
Call me when we can have the surgery no they actually had to fly him back down like three times to get medically evaluated and psychologically evaluated and in addition to that again it’s the psychological and the mental evaluation that weighs the heaviest because every single time he was in communication with
Them whether it was in person on the phone or through an email it was like are you sure you want to do this right you know you can die you know you know things bad things can you know happen and things can go wrong
And it got to the point even on the day of the surgery when i got rolled in right uh for transplant they rolled mark in right next to me and i heard them again ask him are you sure you want to do this Because again he has every right to back out right so but no he said i am here to save my friend phil’s life so let’s get this done so um but for him and i just get emotional thinking about how the conviction that he displayed from
Day one of hitting submit on that online questionnaire to booking flights out of his own pocket to coming down booking his own accommodation without telling me once that this is happening it he’s a hero i mean he’s a hero if there was ever a call to action to make organ
Donation living easier i mean this is this is the story to tell so thank you so much for for sharing that experience i think it was really illuminating for all of us in the room um valen there’s a moment of great vulnerability in the series where you acknowledge that it’s sometimes
Difficult to ask for your caregiver support uh how do you combat this instinct and speak up for help when you need it i’m still struggling with it it’s a really hard thing to do because as your health deteriorates you see how everybody else has to chip in and do
Things and all you want to do is to lead a normal life and just coming to grips with your health getting worse and then just feeling that guilt of you know or you know i’m almost 40 but you know we’re a younger couple and to think that this is
The life that noah is living because of my health issues and it’s been um just something really hard but i think the biggest lesson that noah has taught me is that if i don’t ask for help it’s likely going to make the situation worse you
Know it’s like i need to just learn to accept it and and that will not make things so challenging because if i push myself and don’t accept help then i’ll likely be dealing with a bigger issue and then that’s not good on him either but it’s been interesting dynamics between
My parents being my caregivers and then going towards my husband being a caregiver because a lot of times growing up i just kept things to myself and wouldn’t tell my parents because i saw the stress that it put on them and my husband has been able to handle
Things differently than you know they could but i remember i would be really sick and not tell my parents and just drive myself to the emergency room because i knew the stress it would put on them but then in turn that’s not good for me there’s just so many
Dynamics that really need to be discussed and out in the open between you know caregivers and the long-term impact on it and um and it’s just tough to be vulnerable and just you know understand that this is the situation um but noah’s really encouraged me to really understand that
It’s helping the broader picture if i can just ask for help but i feel like i need advice on that well i think your honesty was tremendous and i loved how you referred to the idea of you like we are getting a liver transplant i mean that was a really
Emotional moment for me watching the series because i could feel that and you know i think you have to view it that way so you know it’s incredible that you’ve really built this team dynamic and i think it’s a critical part of your journey and your journey to wellness thank you
Drew i want to turn to you for a moment um the segment on the wait list is such a powerful one you manage to capture the feelings of anxiety and stasis that accompany the weightlift the weight for a life-saving organ as well as the feelings of gratitude and survivor’s
Guilt that can come with finding a match as a documentary filmmaker how do you achieve these moments of emotional truth i think siri siri might have some input from the second row over there um it’s a great question chris i think we wanted to do in the middle of this anthology and at
The end something that was a departure from the setting of the rest which was you know for the most part this is valen’s home it’s very personal it’s very intimate it’s very her and by design it was very comfortable and that was helpful always for you know
It also helps have a relationship which we already had before this project to be comfortable in an interview setting for topic and letters six through and 12 6 and 12 we did something different because it was our third day shooting together we felt like we had some momentum and we
Wanted to take a little bit of a risk as you could see it was like a green screen studio kind of thing instead and we just wanted to get clever on which topics could be best captured in that way and when valen would tell me her story of being on the waitlist is
Like being in this void like prison and being in the dark and being in this gray area of waiting i was like okay i think she’s ready to do something that actually does feel by design a little bit more isolated and there she was she executed it perfectly and we we did an
Interview very well in that context um so that was kind of the idea with topic six uh the waitlist i mean it really came through to to the viewer and and that sort of moves me along to the segment um around living life immunosuppressed and how important it is
To establish a new normal to control risk of infection malignancy comorbidity i’m putting this out there to all of the transplant recipients on on the panel to what extent did the pandemic impact your new normal and caden why don’t we start with you okay um well first off
I like to think that it made me more cognizant like wearing a mask people have started doing it because of the pandemic but i think like germs have always been around and diseases have always been around i just think it made people more aware just like this
Hopefully will make people more aware of transplantation it made us more aware of what is out there what can affect us what danger the world holds for our immune systems and i think it made people are immune to compromise even more scared because our when we suffer it’s greater than
When people that have less health health risks um deal with it phil i’d love to hear from you yeah it’s really interesting um by the time the pandemic had hit i was six months post-transplant and i you know we had established protocols with our family and friends anybody who
Wanted to come and visit that they had to be a mass we actually made them wear latex gloves also i don’t know why we did that but we said you need to be gloved up and we had sanitizer everywhere and then when the steel gate of the
Pandemic dropped i was like wow welcome to my world folks so um but what was really enormous for me was just noticing uh my community they were so vigilant to protect me once the pandemic happened every time we wanted to whether it was just come outside and say hello
Or get together in as you know a nice space group setting they thought of me first okay what accommodations do we need to make for phil for us to do this and that was just really really touching to see that and the fact that they are already kind of like
Pre-educated based on their engagement with me over the previous six months it just felt like my community my people they were they’re very prepared for the pandemic and incorporating you know all these safety measures for them to live their lives and they continue to do so
To this day so i was very grateful for that it’s incredible to have that support valen i’d love to hear your thoughts on this sure so there were like you said phil it’s almost like the rest of the world was getting a bit of a taste of
Our world there were some things that was very common like for wearing masks and washing our hands we don’t need educated on any of that so that was normal to us but it was absolutely terrifying for the community because when you have a suppressed immune system you respond differently we
Can get severely ill from a cold if i’m vomiting i can’t keep my medicine down it’s going to the emergency room a fever is emergency room right away because that’s different for us than a normal person and this was all new so there wasn’t a lot of information and it was really
Hard for our community because they didn’t have a place to go to understand this we had no direction of what to do and still to this day our transplant community were receiving different information from our doctors and we talked to each other and have no idea what we should do then and so
That’s been really challenging i was apart i’m still am a part of a research study to test the effectiveness and durability of the vaccine and that was something that was really concerning for our community because we weren’t a part of the studies so we didn’t know how we would respond if it
Would be safe so being a part of that was the only place that i was getting reliable information from and still to this day like i think as transplant recipients we just have to be adaptable you know even you know well before covid and that’s something that
We have to continue to have to do i was telling chris that um through recent trips with thermo fishers just my first sort of exposure to broad audiences and more people but i’m still like i did a recent trip with them and then i go home and i
Live really careful and secluded and all of a sudden i’m like out in the world and i’ll go back and live really secluded i get getting these weird you know kind of experiences but even on trips i’m not responding like traveling like a normal
Person my goal is to be able to do the engagement healthy and get home healthy so yesterday i stayed safe in my room i ordered dinner in i’m here masked and hope to just get home safe and celebrate my 20th anniversary you know it’s like our lives are constantly um
Different than others but that’s why i think it’s important to talk about it so we can normalize our experiences well speaking of seclusion and isolation i think all of us in the room can attest to the impact of two years of quarantine and social distancing and the strain
It’s put on our mental health we know that incidence of depression and anxiety is up and i’m curious you know you talked about in the documentary that as a transplant recipient there’s a lot of focus on your physical health and managing yourself physically but that often comes the neglect of mental
Well-being so what are some things that you do to make sure that you’re checked in to your you know mental state and that you’re you’re not just managing your physical health but you’re keeping yourself strong and mentally well i think that’s an area that’s really lacking support for our community and
We’re like during transplant evaluation when we’re dealing with so much and being so sick that unfortunately some things can get pushed to the side if we don’t have easy resources or it’s not easily accessible to us and i think that’s one of the aspects because we’re navigating
So much and while that should be at the top of the list if we don’t have means to be able to get the support and help then that unfortunately might not happen i feel like for my overall mental well-being it’s not one thing it’s a combination of things i’m fortunate to
Have a really good support system i think being passionate about something is really important and my patient advocacy fills that and i also think having a healthy outlet kind of like caden talks about movies and for me writing and doing something to channel what we’ve been through i really believe that
Talking about things has been really helpful for me because it helps to try and process it and you know create something meaningful from all that i’ve been through because this is really traumatic experiences for both the recipients and the family at large so i think it’s really important for us not
To hold things in i did that all through my youth until my 20s and realized oh my gosh i can’t believe i didn’t talk about anything and so i really hope to encourage other people to find outlets and other people and just really you know positive ways to be able to
Get what we’ve been through out and kind of like i shared in the video is that doesn’t have to be up here on stage like we’re doing it can be you know something like artwork or something quiet like watching a movie or writing i just think it’s important that we bring this topic
To light hopefully be able to provide more resources and that it’s something that is like preventative care not something that we’re doing after the fact of going through everything i’d love for it to be that you find out you need a transplant and that’s immediately part of the process and support that
You’re given so i want to talk about uh health hiccups with respect to preventive care and and this again is posed to the three transplant recipients and we’ll start with you caden and work our way uh down back to valen how do you prepare yourself for the inevitable health
Hiccup physically mentally what are some things that you consider um first off i know there’s always gonna be health hiccups so it’s not like i’m naive to them i know they’re coming i just don’t know when um i try to prevent myself by staying on top of my meds which i’m
Always the best at which i need to get better at um i go to my doctor’s appointments i try to listen so that i know what like my lab levels are um i try to understand my condition and like uh i bought grey’s anatomy the book because i’m like i’ll look up creatinine
And they’ll give me a more a better definition than the internet well and just looking up the terms helps me understand better that’s great phil yeah this is a tricky one um because you asked for both mental and physical and i think on the physical side it really is just
Maintaining that level of vigilance and self-advocacy so if you’re not feeling well or i’m not sure why they allow the patients to see the lab results before your doctor but sometimes i’ll take a peek and i’ll see you know something in the red saying that i’ve i’ve reached an
Elevated level of something or other um being able to pinpoint that and call it out and speak to my transplant team immediately about it i think that’s critical because it’s your transplant team and your primary care physician is going to kind of talk you down from that ledge so
Um doing that and having an open honest conversation not only with your medical team but also with your family is super helpful as well as with your community because it’s also helpful for me to like reach out to my transplant community to see hey have you had this experience and
Being able to bounce those experiences together on the mental side i become i i feel like i could teach a master class on reframing so i’m constantly battling through every mental challenge that velen beautifully expressed in the in the documentary survivor’s guilt is a big one for me
I’m sure valen and cayden can probably attest to the challenges of having being so open and vulnerable you make these connections and they’re beautiful connections but oftentimes these people they don’t see the same outcomes as we have and i have to deal with that i’m honored to carry that weight
Of what they’re experiencing but it’s weight right so having to navigate through the mental and emotional challenges that come with that is it’s it’s still challenging i don’t have an answer other than working with valen and the transplant community to um find ways we can navigate through
This together because it is a shared experience thank you it amazes me that the metrics for transplant is one year after transplant and seeing how well people are doing and just the we’re not actually um we’re not just data we’re human beings and we’re not at often asked how we are
Like it amazes me that i’ve gone back for clinic and they look at my numbers and you look great get out there and live your life there’s so much more to that and nobody actually asked me how i’m doing like not just how i’m feeling
Physically how am i doing and if we did that more often we’d understand more and then we’d know what resources are provided and maybe if we had more education like caden said on taking medicine and why it’s important then maybe transplants would even last longer because we were more empowered you know
I think it would be amazing at like six months or a year they’d ask you know an appointment so i’m like how are you doing with your medicine you know do you understand all that you’re taking do you have any questions even ask the person to let them know what medicine they’re
Taking um there’s just so much to this that to me it’s it’s like how can we how can we think that we’re just going to face death and then just be okay and integrate back into society and be normal like there’s just so much like phil said and caden For health hiccups it’s a heavy weight to know that there’s always going to be something else that will come next that’s really hard when i was getting daily iv antibiotics and needed a transplant every day i wondered if i’d wake up and have sepsis again like that’s a huge thing to always
Have on your mind of like okay i feel great now but when’s that gonna fall off that type of thing so the importance of trying to be present and not think too much big picture and just today and all of those different lessons like those are things
That that like there’s there should be programs and and opportunities to be able to help patients um they never they never get easier you know well i think that segways nicely into my my final question and then we’ll open it up briefly to the the audience here so i think it’s really
Poignant that you chose to conclude the documentary by honoring your donors and i want to ask this to everybody on the panel um what do you think that we can do as thermo fisher to help raise the profile around the importance of organ donation and the importance of improving longer-term
Transplant outcomes i’ll start with chris and then we’ll work our way back down to uofl i think um the most important thing that we can do is help to amplify the remaining challenges in transplantation we you know you and i have often talked about where we see the gaps in
Transplant diagnostics and in particular in post-transplant care which is an area that you and i are particularly interested in and obviously tdx has got a huge um sort of investment and legacy in the pre-transplant matching and tissue typing and antibody detection side of things already and our direction of
Travel has been to continue to support and improve that whilst developing new products and new advances in post-transplant care um and i think that um that hopefully the contributions that we’re making to diagnostics will help with the question of long-term graft survival but i don’t think you can do that just with
You know a magic tablet or a magic diagnostic i think the you know the advocacy that we’re embarking on that we’ve we’ve always put the patients at the center of everything we do at one lambda transplant diagnostics but i think having a more formal program engaging with the uh
With the opo’s engaging with the transplant community engaging with policy makers and just continuing to work together as one community one step at a time advancing the needle a bit by bit and improving the experience of transplantation and through that hopefully improving outcomes and i think
I think valen hit the nail on the head there is i’ve often said what what why would people be interested in what your one-year graft survival is or your five-year graft survival what you want to know is how are you going to be in 20 years time
And what sort of life you’re going to need what’s it going to be like how are you going to do things that are going to improve your experience of life and how you rather than just a metric rather than just a a dot on a chart
You know that that i think is something that we should all work towards agreed kaden would love to hear your thoughts i don’t have that much to say as much as that that’s okay i think engaging and informing um not just adults but especially teenagers who are starting to get their licenses
And can click the box and be like yes i want to be an organ donor if something should happen to me i think that is really important because there’s millions of teens out there driving and it increases every year so i know how terrible this is but that
Means there’s more people that are organ donors so if something happens to them there’s more organs that can be used for transplantation and i think also not just having them check the box but also knowing like the lives that they will impact if something should happen to them and the life that
Can be lived if they get an organ it’s a really profound well-considered response thank you thank you phil um i think we all know that um organ transplantation it’s it’s not new it’s been around for decades um obviously the technology and the medicine has been elevated thanks to time and investment but
I really do think that it’s education and obviously anybody can pick up a pamphlet or a leaflet and read that oh hey you should become an organ donor because you have an opportunity to save up to eight lives we all know that but there’s something about the power of
Voice and the power of story with that voice that really lays the foundation it’s that connective tissue where people connect and that’s when you spur meaningful education right because so many people have come to me and say look i had no idea that i can donate a
Part of my liver right and i’m not you know and they’re saying look maybe i i can’t do it but now i have now i have the education because i know your story i know valen’s story i know caving story so because of that i can now
See someone’s need and draw a connection it’s a there’s an opportunity here where someone can actually save your life and we if we could continue to create these amazing partnerships with one legacy and with with thermos fisher it i think we can get there because again i transplant
It’s not new it’s been around for a long time but i think it’s just by expanding that education and really just that connection that human connection that’s how we can get there yeah there seems to be a theme in the responses about incorporating the transplant community voice into the story storytelling
Education i think that that’s really critical drew your thoughts on this yeah exactly my response is really similar actually i think thermo fisher could really continue to help with this cause by just broadening the aperture of the spotlight on stories like balance um i think you can really turn ripples into
Waves when you make it more than just spotlighting one person but having valen be sort of the uh the leader in opening it to a much larger community getting people who are also comfortable on camera to impart their their tales and their stories and just make this all feel
Um something that you’ve pointed out has been going on for decades but is sort of left in the dark still in a lot of ways all make it feel more familiar normal and something that is absolutely needed and that would be my hope going forward that
We can just do a little bit more and make it more about the entire community to broaden it and balan obviously we want to conclude with you given that i know this is your mission and you have some really profound things to say about it oh thank you um
I’ve spoken to high school students before so i wholeheartedly agree with what you said caden i love our community it’s important for us to gather together but we need to figure out how to get outside of our community for education and we can do that by creating really amazing impactful projects that are
Going to be shared beyond our community speaking to high school students i mean i think back in high school i didn’t understand organ donation so how do we educate them how do we also make this a an okay common conversation for at home that families can talk about this
Families that don’t have any personal connection to organ donation but they saw a video they saw our series or docu-series it encouraged them to have the conversation and then they’re making educated decisions and by doing that they need to see the visual representation of the impact that
Their decision will make and i think we can do that through storytelling i there’s the deceased donation and then the living donation so by the education we’re encouraging um deceased side to check yes for organ donation but something that’s been on my heart is the living donation side so i’ll be
Celebrating 20 years this weekend harold how many years for you 22 years congratulations harold harold is a living kidney donor and i want to tell stories like harold’s i want to tell stories of people that are far out from living donation so that we can hear the impact it’s had on their
Life excuse me goosebumps because i feel like you see videos of a donor meeting a recipient shortly after and it’s amazing but let’s talk to them years after so we could be like harold how has this impacted your life 22 years and then all of a sudden the viewer will be like oh
My gosh i have the opportunity to do that so we need to see yes the impact on recipients the amazing life we can live and like i said i want to i want to show how rich it makes our lives yes we have a lot to deal with but
We’re different changed people in a beautiful way and so i’d love to share a different side of living donation that we haven’t heard yet and i know of people that are on dialysis and aren’t educated on transplantation i know people that are scared of taking immunosuppression medicine because they’re not sure what
Their life will be like those are the people that we need to educate and we will have an incredible impact if we can reach these different audiences and i know we can do this meaningful work i i completely agree and you know we at thermo fisher are not just committed to
Telling the stories of transplant recipients but also the donors particularly the living donors who have supported access to transplantation so you have our commitment to amplifying that voice and on that note valent we would love to congratulate you i know nicole wants to say a few words to wrap us up on your
20th year anniversary which is really a major milestone valen just on behalf of everyone in this room online and all the people that you have touched with your story we just want to celebrate your anniversary and just say thank you thank you you are truly an inspiration and i just feel honored to
Have the opportunity [Applause] everyone um we’re running up against time i don’t know if anyone in the room has like critical questions they’d like to ask a valon um we have a pro about five minutes we also have some light refreshments here and now it’s out in
The foyer you can grab them you know uh we have the space until 5 30. so does anybody in the room have a question jen not really good with mike’s thank you for being here all of your stories are really inspiring so just one thought as a medical device
Manufacturer um how can we help you i know you guys say that you don’t like to ask for help it makes you uncomfortable but if you can say this is what we need right now from what we can do and give or amplify what would it be i think
First off the less scarring the better so if a biopsy can be less invasive um such as i had a biopsy in which a special needle was brought out and it was so small that there was barely any mark left and that was just the best because it
Was the least painful biopsy i’ve ever had and i still remember it because of that so if you can keep making stuff that improves medical technology to make it less evasive and that would be amazing um really good question i don’t know why but when i was recovering from my
Transplant i remember just trying to get breathing again and i still have just sweaty nightmares about that spirometer that i had to breathe in so um but that’s obviously unnecessary but um if there’s a way that we could somehow streamline and simplify the lab draw i’m still going in um
Every other month for after all and i it’s it’s it never gets easier it honestly doesn’t and um i don’t i’m not expecting uh you know major breakthroughs on that that doesn’t involve like fraud like theranos but you know at some point i would love to see a much more simpler
Way to to draw your labs injections of infusions would also be great yeah i’ve gotten labs done at least once a month for the past 20 years and it’s amazing the stress that still comes with it like i get the email for the results and i literally am like
Okay it’s like these numbers need to be good and if they’re not good my whole day is going to totally change and my doctor’s going to call and then something’s going to happen and this is the spiral of mental things that go through our mind and then it’s amazing
Because when i see the good numbers i instantly scanned a creatinine and alt for kidney and liver they’re good and i’m like okay now i can slowly go through all the rest because it’s like you know it’s just so much stress surrounding it but when i’ve been a part of this um
Research study during covid they i take my own blood from home so i know that we can’t do that for labs that requires a lot of tubes but making it so easily accessible for me to do that and again it was almost an empowerment i
Was excited it’s like well i can do this myself and i was able to package it up and they picked it up on my front doorstep it kept me completely safe during the heightened time of covid that i didn’t need to go out and i think if we can
Streamline things and make them a bit easier so that we can incorporate them and feel like we live more of a normal life because we want to have the best quality the most kind of normal life of if we can work full-time and do all these things so if
If it cannot feel like tests and things like that take up so much of our time and feeling just different than other people i think just um that would be helpful kind of like the urine test right now that um instead of doing like biopsies things like that because my experience with the
Liver biopsy was extremely traumatic so i agree with that type of thing so i think just um just making things a little bit easier for us in the form of testing i think would be really helpful well thank you everybody for coming we really appreciate your time and attention and commitment to the
Transplant community please feel free to uh take some light refreshments you know some of us will be around for q a if you want to grab us and chat more than happy to stay until 5 30. and again we really appreciate you being here and supporting letters of hope so thank you [Applause] You
