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)
Hey y’all! I’m a liver transplant recipient, wife, adoptive mom, and chronically ill human, blogger, and podcaster. After a diagnosis of autoimmune hepatitis in 2005, I received a life-saving liver transplant that same year. I love talking with anyone in the transplant, mental health, or chronic illness world and help communicate their stories. I use my platform, The Bonus Years, to help bring hope to the hard. I can’t wait to connect with you!
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/
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.
Manish is a 28-year-old PhD researcher and lives in India. He suffered from FSGS/Alport Syndrome, that led to progressive chronic kidney failure. Thankfully, Manish had a kidney transplant in December 2020 after his father donated his kidney to him. The suffering finally culminated into a blessing! He is enthusiastic about creating awareness and support as well as educating rare disease, kidney disease and transplant communities. He is an avid health blogger and has recently started Doting Beans, an online awareness and support blog/platform for kidney disease patients and transplant recipients. Manish also supports initiatives such as organ donation and mental health awareness. He is associated with the Organization for Rare Diseases (ORD) India as a rare disease advocate and Zifcare, India as a mental health ambassador. In addition, he is a patient ambassador at Alport Syndrome Foundation, USA and research network volunteer with Kidney Research UK. Through his journey, Manish has realized the importance of accurate & timely diagnosis and need to develop effective methods for treating rare and chronic kidney diseases. He envisions to implement this through his prospective plans of a research career in the field of Bioengineering.
After a lifelong struggle against a rare, metabolic disease, Alisha received a liver transplant in 2020. Immediately she saw needs in the system and desired to give back to the community that gave so much to her.
Thanks to the generous gift of life from not one but two donors, Alisha has begun what she calls the beautiful second life. She is the creator of the radical transplant movement, empowering patients to live out their radical truths as they live with illness. She is a certified 200hr yoga instructor, a trauma and grief doula, writer, speaker and embodiment coach living near the Rocky Mountains in Alberta, Canada with her family.
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.
Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth’s health began to decline during her sophomore year of college, causing her to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog, Tucker. Double-lung transplant survivor with cystic fibrosis. Public speaker and advocate. Keeping it salty 24/7 while showing the good, the bad, and the ugly with sarcasm and humor.
Doctor Mark A. Hardy is Auchincloss Professor of Surgery, former Vice Chairman and Residency Program Director of the Department of Surgery, and Director Emeritus and Founder of the Transplantation Centre, Columbia University College of Physicians and Surgeons and NewYork-Presbyterian Hospital in New York City. His professional scientific career has revolved around transplantation and transplantation biology, with a major interest in alteration of donor immunogenicity, antigen presentation, and islet transplantation. He is a former Director of Vascular Surgery and Founder of the Transplantation Program at Albert Einstein College of Medicine in New York. In addition to his work in transplantation, in the earlier part of his career he made several contributions to the development of prosthetic vascular grafts and the development and study of biologic function of thymic hormones, both experimentally and clinically. He is on the Scientific Advisory Board of Hallym-Columbia International Surgical Education Fund, which he helped to create to support international exchanges of faculty between underdeveloped and developed countries.
Besides being a very busy general, vascular, and most recently primarily a transplant surgeon, he continues basic research in immunology trying to achieve tolerance to organ allografts in swine. Among his many honours and almost constant support by NIH funding for his studies, Dr. Hardy was President of the American Society of Transplant Surgeons (ASTS) in 1994, served three terms as Councillor of the Transplantation Society (TTS), and was an Editor of Transplantation for 15 years until 2015. He has published more than 380 articles and edited Xenotransplantation 25 (First International Xenotransplantation Symposium) and another book on Organ Replacement in Diabetes Mellitus. He is a member of numerous surgical and scientific societies including American Surgical Association, Society of Clinical Surgery and American Association of Immunology. He has received a number of prizes for his work, including the NIH Scholar Award early in his career.
He has been awarded Honorary Doctorates at Hallym University in Korea and at Warsaw University in Poland and was named Distinguished Alumnus of Albert Einstein School of Medicine and of Columbia University Medical Center/NewYork-Presbyterian Hospital. He has received numerous awards including the ASTS Pioneer Award and Francis Moore Mentorship Award, and The Shustra Prize in Immunobiology from India. He continues to focus on issues in surgical education and international health care, in addition to his research in tolerance induction.