Nationwide Children's Hospital’s Post

February is American Heart Month, a time to reflect on heart health and the incredible gift of organ donation. For me, this month carries an even deeper meaning. In 2021, I received a life-saving heart transplant due to Arrhythmogenic right ventricular dysplasia/cardiomyopathy (ARVD/C), a rare condition that could lead to sudden cardiac death in an otherwise healthy person. Thankfully, a young man named Nic, who tragically passed away at 21, had registered as an organ donor and expressed his wishes to his family. Honoring his generosity, they gifted eight organs, including the heart that now beats within me. Nic's selfless act gave me a second chance at life, a chance I wouldn't have without countless others like him choosing to be organ donors. Over 2,000 heart transplants are performed each year in the U.S., yet more than 100,000 individuals nationwide wait anxiously for their lifesaving gift. This American Heart Month, I urge you to join me in supporting organ donation. There are two simple ways you can make a difference: 1. Register as an organ donor. It's quick and easy and can happen online or at the DMV. Visit https://lnkd.in/gK3qV9yv to find out how to register online in your state. Remember, one donor can save up to eight lives and improve the lives of many more through tissue donation. 2. Talk to your family and friends about your decision. Open communication makes sure your wishes are respected and empowers them to support your choice. By taking these steps, you can play a vital role in giving hope to those desperately waiting for a second chance. Let's make American Heart Month a turning point for organ donation and honor the heroes who choose to give the ultimate gift. #AmericanHeartMonth #Organdonation #SecondChance #ThankYouNic #hearttransplant #heartmonth2024 #hearttransplantrecipient

**FAQ: Pediatric Heart Transplants** Q: What are the most common heart diseases that require a heart transplant? A: The most common indication for a pediatric heart transplant is cardiomyopathy. The second most common indication for a heart transplant is complex congenital heart disease. At Enduring Hearts, we are the only national nonprofit solely dedicated to funding research to increase the longevity and improve the quality of life for children with a transplanted heart. Together, we will continue to ensure healthier lives for these young warriors. Learn more at [enduringhearts.org] #PediatricHeartTransplants #EnduringHearts #HeartHealth #ChildrensHealth #MedicalResearch #Nonprofit #HeartTransplantAwareness

#NationalKidneyMonth is quickly coming to an end! Please don’t let this critical time pass you by without making your special contribution. YOU have the power to unlock: 🧡 Additional peer support and guidance for patients on dialysis, seeking a transplant or exploring living donation. 🧡 Additional investments in research and clinical trials. 🧡 Large-scale awareness efforts to ensure more loved ones understand their risk and get diagnosed sooner. Our friends at Medtronic will MATCH your special gift – but only if you act fast. Make 4X impact: https://bit.ly/49lXpHy

On a separate note, I hope that someday more refined understanding of the immune system can lead to inhibiting only the mechanisms that reject organ transplants. I'm an editor of biomedical research, and I have extensive experience editing articles on molecular mechanisms. Thus, I can hypothesize that it would be possible to suppress only part of the immune system. Targeted immunosuppression, whereby only the immunomechanisms involved in rejecting the organ would be suppressed. This would be a task for AI, because I feel it would be unethical to test this theory on clinical patients, but it would be worthwhile to save even more lives. Thus, I hope that I am proposing an AI-assisted research to investigate the mechanisms involved in rejecting specific organs, which could lead to a targeted #immunotherapy that targets only those mechanisms without suppressing the entire immune system. #research #medicalresearch

As we approach NF2 Awareness Day on May 22, Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Liene who was diagnosed with NF2 at 19 years old and her tumours were big at that time leading to increased pressure in her brain. "I was advised to get Avastin treatments. I was happy to get that help, because first when I was introduced to Avastin, they were a little bit reluctant because of the side effects on a young person like me. But this would mean that I’d get some more years without surgeries ... I moved to Norway, and was asked if I have plans of starting a family some day, and that was the first time they warned me about getting pregnant while on Avastin because it can cause severe damage to the baby" NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. NF2 is for life, an unwavering companion. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

𝟱 𝗛𝗲𝗮𝗿𝘁 𝗔𝘁𝘁𝗮𝗰𝗸 𝗪𝗮𝗿𝗻𝗶𝗻𝗴 𝗦𝗶𝗴𝗻𝘀 𝗬𝗼𝘂 𝗦𝗵𝗼𝘂𝗹𝗱𝗻’𝘁 𝗜𝗴𝗻𝗼𝗿𝗲! A heart attack can strike unexpectedly, but you can be prepared. Learn the symptoms, which includes chest pain, light-headedness, neck and back pain and shortness of breath. Quick action is vital—seek medical help promptly. Take charge of your heart health through knowledge and proactive care. Do not ignore these signs! Act promptly and seek medical help if you or someone you know experiences them. #CVSKLFoundation #CVSKL #HeartWithHeart #COE #CentreOfExcellence #KLSentral #KualaLumpur #Malaysia #Hospital #cardiology #KnowYourOptions #WeCareForYou #awareness #wecarewehelp #charity #Foundation #unprivillegedpatient #heartattack #educationalknowledge #warningsigns #expertconsultation #infografic #usefulinformation

About December 2022, we started our journey to find a kidney for my love, Harry. We have had evaluation after evaluation, and far too many speed bumps. First speed bump, after fending off dialysis for 2 years, he retained water during an illness in March, and at age 67, he had his very first ever hospitalization. He was discharged, and then in May, he had to undergo emergency CABGx3, after finding out during a transplant final eval, that he had severe blockages. Coming through that with very little issues, we thought we were on the way to clearance for the transplant. Then in July, he got an infection and had vascular issues with his left foot. By August, he had lost his left leg below the knee. I say it all the time. He is the strongest man I know. I almost lost him 4 times during this last stint in the hospital, but now he is home, on no pain medication for fear of the side affects and how they will hinder the transplant evaluations, and going through therapy to learn how to get through day-to-day, and eventually to walk on a prosthetic. It has been a rough journey for both of us. I have kept business moving, but haven't had the time to devote to it myself as much as I should have, and my team has stepped up, but this meant my income was lost, as I am my own employer, so things went south as I tried to navigate being there for Harry, my team, my business, and my financial responsibilities. As I look to the end of this year, I hope to see the end of the evaluations, therapies, and a return to a new normal, while we focus our attention on finding a donor for Harry, and spread information that helps others on the same journey. What a journey it has been. #Considerdonation #Togetherwegotthis

LinkedIn Network! I normally shy away from posting anything personal on my LinkedIn but please join us in supporting my nephew Leo's fight against dilated cardiomyopathy also known as end stage heart failure. Every donation to his GoFundMe page brings us closer to the hope and the fighting chance he so deserves. Read more about his story below 👇 #HelpLeoHeal #StrengthInCommunity"

After a delay from my bout with COVID, I'm joining up on the California Coast Classic tomorrow as the Day 2 honoree https://lnkd.in/gJympbT9 and doing as much of the rest of the bike ride to Los Angeles as I can. Talking about disability is difficult- while there are ADA protections in place, it's still risky to "out" oneself as having limitations. A visible disability like my rheumatoid arthritis is easier to explain than "invisible" disabilities. I can't speak enough to the importance that a good job fit can be for your physical and mental health. Stress and lack of sleep can easily spiral into a bad flare-up for me. I'm very grateful for my current role's flexibility and how kind and supportive my team is. I spend my time now collaborating, leading discussions, and thinking "big picture" about technical and manufacturing topics. I grew up around the mentality of sucking it up and work's work- but in previous competitive high-pressure roles it really wasn't serving me to have the majority of my performance and tasks centered on work that wasn't making use of my strengths. I always wonder if early-career stress contributed to me developing my autoimmune condition back in 2019. Work with yourself, not against yourself. It makes hard times more manageable and good times far more joyful. I'm still raising donations for the Arthritis Foundation: I'd love your support.