This interview holds a special place in my heart, and not only because Jacob is my brother, and my living donor. It’s a unique insight into the experience of an organ donor, one I, as a transplant recipient, cannot fully understand. I am one side of the story, the donor is another, and together we come together to create the transplant community.
Jacob is a university student, currently working towards an English degree and minoring in theology and communications. His hobbies include working out, playing sports, reading and watching movies (He lists Lord of the Rings, Star Wars and the Chronicles of Narnia among his favourites).
As a donor, he underwent surgery to remove 60% of his liver and, despite challenges along the way, he describes his recovery process as fairly easy and straightforward. This may not be what everyone would say, but he credits an amazing medical team for his recovery, and upon entering the transplant centre, I can confidently say he is still more popular than me. Young, physically fit and the most generous guy around, Jacob quickly became the topic of conversation all around the hospital, and he is still an inspiration to doctors and nurses today.
Going back to the basics and relearning how to walk post surgery was an enlightening and oddly enjoyable experience, says Jacob. As a busy college student, he was also forced to rest and recover, giving him an entirely new perspective on life.
His sense of humour kept him going through the bumps in the road, from asking his doctor when he could hit the gym again after waking up post surgery to shrugging and saying “You win some, you lose some” when it came to his near death experience overdosing on pain medication while on the recovery floor.
Throughout the whole process, with all it’s complex losses, Jacob says it is beyond worth it. He draws his inspiration from people who are doing what they love, living life to the fullest.
Jacob is passionate about living life and loving others. And I am beyond proud to be his big sister.
(Jacob would also like me to add he is currently single and now accepting applications for potential dates)
I’m Ashley! A newlywed, mom-to be, and creator of things. I love creating hospitality experiences geared towards entertaining in your own home and making my guests feel like family. I’m originally from Tulsa, OK and currently reside in Houston, TX. As a type 2 diabetic, it’s important that I find balance in the kitchen to support a healthy lifestyle that I love.
Mike Veny loves working with leaders who are tired of bringing the same old textbook presentations on mental health or Diversity & Inclusion to their events. If you are looking for a compelling speaker who will connect with, entertain, and engage your audience—all while educating and uniting them around improving wellness—you’ve come to the right place.
As a Certified Corporate Wellness Specialist®, Mike’s presentations move past simply educating an audience to providing them with actionable steps they can take to change their lives and work environments. His reputation as a dynamic speaker provides confidence and peace of mind for meeting planners everywhere.
The mission of his company, Mike Veny, Inc., is to support you in receiving the gift of emotional wellness through unique learning experiences designed to empower your personal and professional growth. The International Association for Continuing Education and Training has awarded his company the prestigious Accredited Provider accreditation for its continuing education programs.
Mike’s Story Mike’s path to becoming a speaker became evident at an early age. He convinced the staff at psychiatric hospitals to discharge him three times during his childhood. In addition to being hospitalized as a child, he was expelled from three schools, attempted suicide, and was medicated in efforts to reduce his emotional instability and behavioral outbursts.
By the fifth grade, Mike was put in a special education class. Aside from getting more individualized attention from the teacher, he learned that pencil erasers make great sounds when tapped on a desk. He had no idea that drumming would become his career or his path to recovery. As an adult, Mike spent many years facilitating drum workshops for children with special needs, teaching them to channel their energy by banging a drum while also learning how to listen, focus, work together and succeed through teamwork. The project was such a hit that he continued to expand his drumming program, first to adults in recovery and eventually into the corporate setting.
A few things you may find of interest
* His bestselling book Transforming Stigma: How to Become a Mental Wellness Superhero and The Transforming Stigma Workbook have become valuable mental health resources for people of all ages.
* As a 2017 PM360 ELITE Award Winner, he is recognized as one of the 100 most influential people in the healthcare industry for his work as a patient advocate.
* He has presented for audiences in the corporate world, healthcare systems, K-12 education, professional development for teachers, colleges, and universities.
* He has delivered keynote presentations for Heineken, T-Mobile, Aetna, Salesforce, Sanofi and CVS Health.
* He is proud to be a member of the Society for Human Resources Management (SHRM), National Diversity Council, Meeting Professionals International, the National Speakers Association and the Rotary Club of Wall Street New York.
* His presentations can be customized to fit the needs of your event and deliver the results you’re looking for.
Alexandra Muskat was first diagnosed with Type 2 Diabetes at 19 years old. As an attorney and social media manager, she spent the last few years learning more about Diabetes and endeavoring to educate the community at large by sharing her story on social media.
Work Activities: Medically retired due to Rheumatoid Arthritis 2008 Westfield Washington Schools 1997 to 2008 Director of Business and Finance* Marion Community Schools 1993 – 1997 Director of Finance City of Kokomo IN 1982 – 1993 City Controller Development Director Planner Responsibilities included: • Chief negotiator for complex labor negotiations, • Building construction oversight including over 600 million dollars of new construction • Public meeting presentations • Setting policy for the school system • Budget of 60 million dollars per year. Academic credentials BSPA Indiana University 1979 MSPA Indiana University 1989 Ed.D. Nova Southeastern University 2012 Diabetes activities • Contributor at TUDiabetes.org since 2013, including more than 200 blogs • T1 PWD since 1974. ( I was diagnosed at DisneyWorld 😊 ) • Author owner of www.RADiabetes.com • Member of FDA Patient Engagement Collaborative • Patient speaker at 2019 IDF summit in Korea about the history of diabetes technology Arthritis Activities • Local Arthritis Foundation board member • Member of Arthritis Foundation Patient Engagement Council One heck nice guy, most times
The first thing I noticed when I sat down with Amanda was her friendly and easy going personality. I recognized the tiredness that comes along with fighting for your life etched into her features – it was the same look I had worn for so many years – and yet she was eager to engage and converse with me. Her goal, she said, was to help people.
We’re living in the middle of a pandemic and this, Amanda reminded me, will only add to the number of people receiving organ transplants. She has a wonderful support system but not everyone has received the same support she has, and Amanda said if she can be part of the village to someone else that she has created for herself, it would make her entire experience worth it.
Amanda received her first heart transplant at 15. While other kids her age were worrying about prom and which boy liked them, Amanda had bigger things at hand. Taking multiple immunosuppressants a day, avoiding germs, staying compliant with her treatments, it all made Amanda fit in less with her peers and more with the adults in her life. Transplant causes one to mature, quickly, and this is something Amanda experienced firsthand.
When talking about her experience with transplant, she was quick to reveal that one of her biggest struggles throughout the entire process was that of dealing with her mental health. The entire body is analyzed prior to and post transplant and yet mental health is an area often overlooked.
“I knew I needed a therapist, so that’s when I got one,” Amanda states, and it’s a sentiment I fully agree with. Transplantation is a process that takes a toll not only on the physical body but also the mental one, but there is little to no support for this invisible battle. And Amanda says she feels there should be greater emphasis put on the mental health journey following transplant.
She is currently back on the list, this time for a new heart and kidneys, despite doing everything right. She was compliant with her treatment, took all the medications prescribed to her, and yet the blow of knowing this failure of her organs took place as a result of the medication prescribed to save her life, she says, is her current stand out moment of the entire process.
Despite current struggles, Amanda looks back on her transplant as the biggest gift. Her overall experience has been incredibly positive, and her heart provided her with the opportunity to graduate high school, attend college and study abroad for a semester. She is an amazing chef who has worked with transplant patients regarding their diet and in hospitals hoping to make a change in the hospital menu we all love to hate. She works with her local organ procurement center, is the spokeswoman for the national heart association and records an amazing podcast called ‘Unfiltered survivors”.
I asked Amanda what inspires her to keep going and she said, “Why not?” It’s as simple a sentiment as they come, and yet those two words leave a profound impact. Amanda’s desire to help others penetrates through all that she does, and she says it is the driving force behind her fight.
“It’s all worth it,” Amanda told me, even in the midst of her current struggles. The pain, the struggle, the agonizing waiting period and the unexpected weight it imprints on both the mind and body, it’s worth it. Life itself is the most beautiful gift, a reminder I, too, find myself in need of often. It can be so easy to get swallowed up in your own journey, and I admire Amanda’s ability to keep sight of the bigger picture.
As our meeting together winded down, I asked Amanda if there was anything else she wanted to say while she had the floor. She said she credits TransplantLyfe to a lot of her success, and if this was available to her years ago she might be in a very different place now. “Put it all out there,” She said, “And use all the resources available to you. We have created this village that is so full of love and support, don’t hesitate to lean into it.”
You can connect with Amanda on TransplantLyfe: https://transplantlyfe.com/profile/ChefAmanda
Find her on social media: https://www.instagram.com/chefwithaheart/
Or listen to her podcast: https://unfilteredsurvivors.com/episodes/
Damian Washington is actor from New York City and has appeared in over 30 commercials and voiceovers for brands like McDonalds, AT&T and Planet Fitness. His YouTube channel NoStressMS, about life with multiple sclerosis, has over 5,000 subscribers and won a 2020 WEGO Health Award for Best In Show. Viewers say the channel helps bring levity to the often grim topic of autoimmune disease.
In 2017 my life was saved by a stranger through the miracle of organ donation after my liver was destroyed by an incurable autoimmune disease called autoimmune hepatitis type 2.
This wasn’t the first time I had come close to the edge, though. Depression and mental illness have been part of my battle and journey to survive after being given my life-altering diagnosis at 17.
A doctor told me I had an incurable disease that had caused stage 4 cirrhosis (end-stage liver disease). I would be on medication (including steroids) for the rest of my life. I would never be able to have children. I would never be able to get life insurance. I was told not to drink, and by 30, I would need a liver transplant, or I would die.
This diagnosis devastated me. The life I had planned out was now obsolete due to the medication I would be on. The chances of me having a family and an everyday life were gone. So as I left the hospital that day, I decided I would try never to have regrets. ‘Carpe Diem – Seize The Day – Live every day as if might be your last, became the force that kept me going through the years that followed.
The symptoms of the disease combined with the side effects of the medication led me to massive weight gain and the onset of anxiety and depression. As my liver was unsavable, I decided to embrace life and lived a rather hedonistic existence, not caring if I lived or died. I believed I was intrinsically worthless, broken and a failure.
I wasn’t worth saving, and so a transplant wouldn’t happen for me. I didn’t deserve one.
But by 15 years later, at the age of 32, I had started to change my mind, and I didn’t want to die. I realised that I shouldn’t have been told what I was, the way it was. I should have had support. Things could have been different. I wanted things to be different. I made a vow.
I will not stop until children grow up knowing about organ transplants, and organ donation is the norm, not out of a legal law, but out of choice.
“My life was saved by a young lady who died of brain stem death. I don’t know if she had chosen to be an organ donor or her family made that decision. But I have a rare blood type, and without their choice, I could quite easily be dead.
I can never thank her or them.
Instead, I will aim to help reduce the shortage of organs available by working to improve education.”
My first children’s book, available on the Kindle is called, ‘Lucy’s Liver Transplant – A Story About Organ Donation’ and is now in 8 languages.
I’m Tina B and I was born with heart disease, pulmonary hypertension and other problems. The outlook for my future wasn’t a positive one. My parents were told that if I managed to live to be a teenager it would be a miracle. I am now well passed my teens and living an incredible life! As the longest living survivor in Africa to have had a heart and bilateral lung transplant, I have looked death in the eye and defeated it! With my proven strategies we can get you to your most incredible life too!
Who am I?
My name is Daniel or Dan and I have type 1 diabetes. I was diagnosed at the age of 10 on 17 August 1996. I live just outside London.
Where am I from?
My family are from the Caribbean however I was born in London and have lived in the UK all of my life.
What do I know about type 1 diabetes?
I’ve been living with type 1 diabetes for over twenty years and have first hand experience of the highs, lows and very lows the condition brings to a persons life.
What’s my diagnosis story?
Everyone who experiences a type 1 diabetes diagnosis has their own story. You could be the person with type 1, their parent, sibling or grandparent. You have your own individual story. Here’s mine.
It was the summer of 96 (enter a poor Summer of 69 joke here) and 10 year old me was enjoying the summer holidays. It was a ‘hot’ British Summer and the Ribena was flowing so I kept drinking and drinking and drinking. It was hot so nothing was thought of it by those around me. This all changed on 16 August. I was on a family trip to the cinema and we had to leave early due to me being unwell. I continued to be unwell for the rest of the day.
Fast forward to 1am on 17 August 1996 and I was still unwell. The emergency doctor was called. After he arrived, tested my blood sugar levels he said, you need to take him to Accident and Emergency. Now!
I didn’t know what was happening but when we reached the hospital, I soon realised. I remember needles and lots of poking, prodding and waiting around. It was early morning now and a doctor sat me down and said, ‘You have Diabetes’.
I don’t remember what was said after that but those words and the image of the doctor still stays with me until this day.
I stayed in hospital for a few days, the highlight being interviewed by a news channel about my diagnosis. Then I was off continuing my journey of living with type 1 diabetes and navigating this thing called life.
I’ve come a long way since then and overcome many challenges. I’m still on my journey and if I can get through it then I know you can.
Finally, as you have read I’ve had type 1 diabetes for a number of years but I am not the following:
– a ‘perfect’ type 1 diabetic (This does not exist!)
– an expert in managing the condition
– a healthcare professional.