Organ Donation Day: “It allowed my husband to see his daughters grow”

Physical education teacher Ramon Lima, 43 years old, dreamed of being an athlete, but his dream was postponed after being diagnosed with a chronic kidney disease called focal segmental glomerulosclerosis (FSGS), in 2008. After 10 years of treatment with corticosteroids and Taking care of his diet, he had to join the waiting list to receive a new kidney, where he remained for two years while undergoing peritoneal dialysis.

Now, four years after the transplant, he has become a transplant athlete and participates in national and international competitions.

“Since I was little, I dreamed of being an athlete and never had the opportunity. The transplant can provide me with this. Today I am a transplanted athlete and I use sport as a tool to promote organ donation in all the spaces I am involved in”, Lima tells CNN .

His story is one of those impacted by organ donation. The practice, which can be carried out by both living and deceased donors (with family permission), is responsible for saving thousands of lives annually. In 2023 alone, almost 26 thousand organ, tissue and bone marrow transplants were performed, according to the Brazilian Association of Organ Transplantation (ABTO). Between January and March 2024, around 6,700 surgeries took place, more than 1,300 of which were related to the kidney.

Despite this, the number of families who refused to donate organs from dead relatives grew in 2023, according to ABTO. In 2019, between 42% and 44% of relatives refused to donate organs from dead relatives. In the first half of 2023, the number reached 49%. However, the decision can transform lives, like that of Ramon, who received a kidney from a deceased donor.

“It was the decision of the donor family, at a very difficult time, that allowed my husband to continue accompanying my daughters’ growth and, more than that, to have quality of life”, declares Inês Silva, 40, Lima’s wife, the CNN . “Eternal gratitude for this family and for several others who say yes. And they end up allowing their relative to save lives and change lives for the better. I don’t know what the story of my husband’s donor was, but for us, she will always be remembered as an angel”, she says.

Singer Michele Mabelle, 41 years old, was on the other side. After the sudden loss of his father to a stroke, he transformed mourning into an act of love by saying yes to organ donation.

“Facing death is an immense challenge, but, after talking to the organ procurement team at the hospital where my father was hospitalized, I began to see the situation with a new perspective. As the song we composed expresses, the donation is a life that is reborn and, in every heart that beats, my father’s legacy continues to live”, shares Michele, who is a volunteer at Hospital Universitário Cajuru, located in Curitiba, Paraná.

Pediatrician Maria Márcia Nasser, 66 years old, decided to donate a part of herself to those she loves. Her husband has a hereditary and progressive kidney disease called polycystic kidney and needed to receive a new organ. “As a family, we and our children made the decision that, if possible, we would have the transplant before the need for dialysis. This way, we started my exams to determine my compatibility”, he says.

The result was positive: she became a donor for the kidney that is now in her husband. “Our lives, as well as those of our children and grandchildren, have become infinitely better. We were able to enjoy trips and family outings, which were quite limited due to my husband’s clinical conditions”, she tells CNN .

How does organ donation work in Brazil?

According to the Ministry of Health, Brazil is a world reference in the area of ​​transplants and has the largest public transplant system. In absolute numbers, the country is second only to the United States as the largest transplanter in the world.

In Brazil, the donation of organs and tissues from deceased people is only carried out after family authorization. Therefore, even if the person said in life that their desire was to become a donor, if possible, only family members can make the final decision. If the family does not authorize it, the organs will not be removed.

In addition to consent, for a deceased person to be a donor, brain death must be identified (victims of head trauma, stroke or anoxia), or death caused by cardiorespiratory arrest. After that, the family is interviewed by a team of health professionals to inform them about the donation and transplant process and request consent for the donation.

The deceased donor can donate organs such as: kidneys, heart, lungs, pancreas, liver and intestine; and tissues: corneas, valves, bones, muscles, tendons, skin, cartilage, bone marrow, umbilical cord blood, veins and arteries.

Donation can also be made by a living donor, who must be of legal age and legally capable, healthy and consent to the donation, as long as it does not harm their own health. Furthermore, according to Brazilian legislation, relatives of up to four degrees and spouses can be donors. The donation of organs from living people who are not relatives of the recipient is done with judicial authorization.

A living donor can donate one of the kidneys, part of the liver, part of the marrow or part of the lungs, blood compatibility is necessary in all cases. To donate an organ while alive, the doctor must evaluate the donor’s clinical history and previous illnesses.

What are the criteria assessed for an organ to be donated?

According to Alexandre Bignelli, nephrologist and coordinator of the Renal Transplant Service at Hospital Universitário Cajuru, the evaluation process for an organ donation from living people involves several steps, starting with checking the blood type, which must be compatible with that of the recipient. .

“This happens in a similar way to blood donation, with O donors being universal and AB recipients receiving all types”, he explains to CNN . “The next step is to check HLA compatibility, which can influence the choice of medications, although transplantation is possible even with differences in this system, as long as the ABO system is compatible.”

After confirming the donor’s compatibility and eligibility, according to legislation, several tests are carried out to assess the donor’s general health and whether he is suitable for donation. Although legislation allows donors over 18 years of age, clinical practice tends to prefer donors over 30 years of age, considering life expectancy and health status at the time of donation, according to the expert.

In the case of a deceased donor, after family authorization, he undergoes surgery and the organs are distributed to patients on the waiting list, controlled by the State Transplant Centers, according to Bignelli. “Distribution priority is given based on urgency criteria, such as for critically ill patients with liver or heart problems, while kidneys are allocated based on compatibility or prioritization, such as children and patients with no longer access to hemodialysis,” he states.

Communication between doctors, family members and patients is essential

“Clarification about the possibility of becoming a donor is essential. This is because in life we ​​are more likely to need an organ than to be potential donors”, says Bignelli. The doctor can enter this scenario.

“It is up to the professionals involved in the selection process to inform families about the diagnosis of brain death and the importance of family authorization for donation, which can benefit multiple recipients on the waiting list”, explains the specialist.

Furthermore, communication must also occur within the family. A person who is interested in becoming a donor, whether in life or after death, must communicate their wishes, even if the final decision belongs to the family. “Families should think that donated organs can bring new life to the families that receive them! I myself am signed up to donate my corneas. My family members are aware of this”, reflects Nasser.

For children, it is also important to clarify what is behind organ donation and transplantation. It is in this sense that Inês Silva decided to write a children’s book about her husband’s experience of receiving a new kidney: “Daddy has three kidneys!”

“When Ramon joined the waiting list for a transplant and started undergoing peritoneal dialysis, we had to talk to our daughters and tell them what was happening and what would happen. We have two daughters, aged 6 and 3 at the time”, he says. “We had difficulty finding materials on the topic of transplantation, organ donation and dialysis, aimed at children. It was there that the idea for the book began to emerge.”

Silva believes that taking the book can demystify organ donation. “In addition, the book talks about family support, resilience, themes that are so important throughout life”, he concludes.

This content was originally published in Organ Donation Day: “It allowed my husband to see his daughters grow” on the CNN Brasil website.

Source: CNN Brasil