The lack of kidney donors has kept many end-stage renal disease patients waiting for so long, sometimes in vain. A young kidney transplant recipient encourages everyone to give the gift of another life with organ donation
By Gelyka Ruth R. Dumaraos
In 2014, Julie Nealega, then 23, was having the time of her life. She was in London to pursue her Master’s degree in journalism, a field she has been passionate about since college. Already a budding journalist, Julie was inclined to learning more about investigative reporting in the UK, which she hoped would equip her to create more meaningful documentaries when she came back here.
But as she started her studies abroad, a different kind of journey was also about to unfold. That same year, Julie was diagnosed with kidney failure.
Severe kidney failure, or the end-stage renal disease (ESRD), is the last stage of chronic kidney disease (CKD). The kidneys fail due to diseases such as diabetes, high blood pressure, and other health problems including autoimmune diseases such as lupus, genetic diseases, nephrotic syndrome, and urinary tract problems.
According to United States National Kidney Foundation, 10 percent of the population worldwide is affected by CKD. It was ranked 27th in the list of causes of total number of deaths worldwide in 1990, but rose to 18th in 2010, as reported in the Global Burden of Disease study. In the Philippines, the National Kidney and Transplant Institute (NKTI) says that at least one Filipino dies of kidney failure every hour. CKD has also been included in the top 10 causes of mortality in the country.
Kidney transplant journey
There were subtle and nonspecific signs and symptoms which Julie didn’t pay much attention to. She had on and off fever, rashes all over her body, and swollen ankle. Her eyesight was affected badly, too.
Intently focused on her studies, she ignored these symptoms, believing they were not due to anything alarming.
“I don’t think I was able to comprehend all the things the doctor told me. At 23 years old, I was in London to study my postgraduate and not nurse whatever disease I have. I kept my cool and relaxed,” she says.
But when laboratory results came in, her creatinine level had shot up to 900 mmol/L against a normal level of less than 100 mmol/L. She had end-stage kidney failure and she needed to be put on peritoneal dialysis.
After hopping from one hospital to another in London to tide her over, Julie finally got back to the Philippines and was admitted to the NKTI, the premiere kidney institute in the country. There she met her nephrologist Dr. Romina Danguilan who guided her on her transplant journey.
Julie realized that kidney transplant was the only way for her to continue her productive years. She says, “I wouldn’t want to see myself chained into dialysis in my lifetime. The longer I am not given my second lease in life through transplant the longer I’ll be of burden with my family.”
Her first options for donors were her immediate family. But much as her parents and siblings would want to donate, they, too had significant medical issues like high blood pressure, making them not ideal donors.
Her relatives came in next. Her uncle was tested but results revealed they were not matched. Her first cousin on her mother’s side, Jonar Lavapie, then 32, who also had type blood B+, turned out to be a good match. The two then underwent a series of tests and counseling prior to the surgery.
While in the medical side of things everything went smoothly, Jonar had changed his mind a few times in the process, which Julie understands.
“There was a push and pull with his decision because of family consideration. I understand how hard it could be to give your organ to someone,” she says.
Fortunately, on July 27, 2015, Julie’s second lease in life was given to her. “Looking back, it feels like everything has been easy,” she says.
Kidney disease burden
However, not all are lucky to have kidney transplant. In fact, only a small percentage of patients on dialysis undergo kidney transplantation due to lack of donors.
“For patients with ESRD, a kidney transplant is often the only hope for survival,” NKTI Executive Director Dr. Rose Marie R. Liquete explains. “The number of patients with ESRD in the country is increasing. Unfortunately, the number of kidneys from living and deceased donors remains dismally low.”
Dr. Liquete adds that based on 2016 data, there are about 37,000 patients on dialysis in the Philippines. Every year, about 20,000 new patients start undergoing dialysis. In 2015, barely 500 transplants were performed out of more than 30,000 cases of patients, according to the Philippine Renal Disease Registry.
Gift of life
This has sparked inspiration for REGALO or Renal Gift Allowing Life for Others, an organ donation advocacy campaign which raises awareness on organ and tissue donation and transplantation in the Philippines.
REGALO encourages organ and tissue donations from both living and deceased donors. Committee Head Dr. Romina Danguilan explains that living donors are individuals who can donate while they are still alive while deceased donors are individuals who are pronounced ‘brain dead’ due to accidents, cardio-respiratory arrests following heart attacks, or strokes. The circulation may just be maintained by life support.
NKTI says that an organ and tissue donor can save up to eight people who are suffering from end-stage organ failures.
Now working as a digital strategist for the REGALO organ donation advocacy, Julie encourages kidney failure patients to not be afraid of the unknown.
“Kidney transplant is the best lifesaving treatment for kidney failure,” Julie says. “Dialysis can only do so much.”
She advises to find a donor with your family, relatives, and friends. If no one is available, enlist yourself with organ procurement organizations. Seek for the right information from the experts and those who have experienced the transplant journey.
“Always believe that there’s hope,” she says. “Things might not be as easy at first but you just need to be stronger than ever. Your family and friends will always be there for you if they see that you are also helping yourself. In the end, embracing your illness is the key. You have to become a better version of yourself in order to deal with it.”
Julie also encourages everyone to give the gift of life to other people by being a donor. One who wishes to donate organs or tissues after death can fill up the REGALO organ donor card.
Now that she was given her second lease on life, Julie is putting her health on top of her priorities.
“I always say that after my kidney transplant, I’m in my happiest and healthiest,” Julie says. “After kidney transplant, I changed my lifestyle totally. From the unhealthy journo I became a sort of fitspiration.”
After her transplant, she lost some weight, maintained a balanced-diet, enrolled into a gym, and tried Crossfit which she has been doing up to present.
While she cannot go back to the hectic, fast-paced everyday lifestyle of a journalist which she had back then, Julie, now 27, still does various types of documentaries.
A co-founder of Postcards From Disasters (PFD), Julie has taught Yolanda survivors in Tacloban photography and storytelling to fight for their human rights since 2016.
She has also launched her own production house Passion Fruit Productions which supports advocacy campaigns and cause-oriented initiatives.
“For now, it’s really just me,” Julie quips. “As a multimedia journalist too, I can do almost everything from writing, photography, videography, video editing and the like. I’ve been collaborating with different communities and advocacy group so that this venture will thrive.”
Julie has indeed come a long way in her journey with her kidney problem. Although she’s now in stable condition and fairly good health with her new kidney, her journey continues as she advocates for others who were in a similar position she was in. And in her heart, she hopes every patient with ESRD, can also be given the gift that has given her a second lease on life.