In 2016, my brother received a liver illness diagnosis that necessitated an organ transplant. He lacked health insurance, but because to my advocacy, he was able to have a transplant in 2018. He’s been doing great since since, thank goodness. Here’s what I discovered as a result. Morning Brew is read by more than 3 million people; you should too! In 2016, my brother was identified as having primary sclerosing cholangitis, a liver illness brought on by the inflammatory disorder ulcerative colitis. Without a liver transplant, the disease worsens and leads to liver failure. Thankfully, he had a transplant on July 8, 2018, and has since been doing well.
However, getting him a transplant was a difficult and enlightening procedure. I assumed I had seen enough medical dramas to have a rudimentary knowledge, but of course, things are never as straightforward as they seem on television.
Rare is the diagnosis for my brother. about one in every 10,000 people is thought to have the disease, despite the fact that the precise incidence and prevalence are unclear. It was really tough to watch his health worsen, but in the period between his initial diagnosis and surgery, I acquired the necessary knowledge to advocate for him.
HIS ORIGINAL DIAGNOSIS AND A TESTING OF AN EXPERIMENTAL DRUGS In Brooklyn, New York, a county hospital provided the initial diagnosis for my brother. He received his liver transplant at Mount Sinai Hospital’s Recanati/Miller Transplantation Institute, which was recommended to him by the doctor at the county hospital.
He had no health insurance, and our family was lower middle class, so it was left unmentioned that he would never be able to get there without assistance.
I scheduled an outpatient visit for him with a Mount Sinai-affiliated gastroenterologist. We paid cash because I just needed to get my foot in the door. He was enrolled in a treatment trial at the hospital because transplantation was the end aim and his health had started to rapidly decline three months after diagnosis.
He had a negative reaction to the medications in the trial, but that turned out to be for the best. The director of the transplant unit was the same medical professional who oversaw the medication trial. It was really beneficial to have the director on my side because he was able to carefully assess my brother’s candidacy for a transplant because he had already met and treated him.
HOW MY VOCAL SUPPORT CAUSED MY BROTHER’S TRANSPLANT We realized we’d need funds from another source to pay for my brother’s transplant operation due to his lack of insurance and the astronomical out-of-pocket expense of such a treatment. Aside from his deteriorating health, the only thing that changed between the time of his diagnosis and his transplant was the amount of advocacy he was getting as I stood by his side.
I had the information I needed to ask the correct questions because to my considerable research of his condition. I questioned the doctors’ decisions to prescribe particular drugs and carry out particular treatments in light of the findings of earlier lab tests and operations. Doctors soon stopped giving me prefabricated responses and started involving me in the creation of treatment regimens.
Through his tenacious campaigning, medical professionals and social workers assisted us in navigating the complex world of health insurance and pushed every possible lever in our favor, earning him a seat on the donor list. However, not every patient has a supporter as close by as I was, and joining the donation list isn’t a simple procedure.
There are numerous obstacles to receiving a liver transplant, and those of color face much more. generally high success rates is present in liver transplants, however only about 9,000 transplants is performed annually nationally. It is crucial to have an informed and proactive advocate because there is intense competition for these organs.
Contrary to what you might see on television or in movies, organ transplantation is not as quick or simple as that. It can take a while to get included to the organ donor list, and if you do, it may be some time before you are matched. Although they’re far from perfect, Organ Procurement Organizations ‘s organ donation policies include various measures aimed at leveling the playing field.
Affordability and fulfilling the requirements for getting included to the donor list are two significant obstacles. Not everyone who needs an organ is eligible; you must demonstrate your ability to pay for both the transplant procedure and any necessary post-op treatment.
Furthermore, since organ transplantation is such a major process, getting support during recuperation is crucial. Medical specialists frequently claim that having the financial means to pay for the procedure and survive the initial transplant is one thing, but they won’t give it to someone they don’t think will be able to care for themselves afterward.
A significant factor is also racial injustice. Race and genetics also have an impact on a person’s capacity to obtain an organ transplant, in addition to social determinants of health . Black individuals have an higher rates prevalence of chronic diseases like diabetes and high blood pressure, which are known to raise the chance of organ failure, as a result of health and racial inequities.
Throughout this process, the dearth of contributions in the Black community really stood out to me. Even while race isn’t the main factor in determining how well an organ will match its recipient, having a donor and receiver who share the same race increases the possibility that the organ will match and lowers the risk of rejection.
Even though they make up 28.5% of the waiting list , Black individuals made up only 12.9% of organ donors in 2020. Lack of knowledge about transplantation, cultural or religious mistrust of the medical profession, fear of medical abandonment, and racism can all be obstacles to donation.
We now understand that socioeconomic determinants of health and implicit prejudice in healthcare providers can prevent full discussions about health with people of color, making it more challenging to make educated healthcare decisions. This was true in our circumstance because nobody gave me any advice on how I might specifically assist my brother. It was my responsibility to gather all the information required to speak up on his behalf and preserve his life.
I gained a lot of knowledge about the value of health literacy, navigating the convoluted health insurance system, having access to preventive screenings, and what it means to be an living donor , which is someone who donates an organ or a portion of an organ for transplantation in another person. Before my brother had a transplant, I wasn’t a donor. Organ donation was something I’d considered solely when it would come up in a “Grey’s Anatomy” episode, but it was never something I actually did. I’ve now registered as a donor along with my entire family.
On July 8, my brother’s four-year post-transplant milestone was reached. This is his new birthday, which we honor. He is currently in excellent health, back at work, and living his best life with no post-transplant issues. Summertime trips to water parks with our children are a joy for us; prior to his transplant, ordinary activities like going to the mall or playing with his sons were difficult. I am eternally glad that he defied the odds, and I continue to be in awe of how much better his quality of life is now than it was four years ago.
