Half of families refuse organ donation in MS – Cities

In 2024, 559 people will wait in line for a transplant in Mato Grosso do Sul, a wait that generates even more anxiety when the patient is faced with a statistic that is difficult to combat. In Mato Grosso do Sul, last year, out of 106 potential donors, in 59 cases the families did not authorize the removal of the organs. This means that for every 2 donations, at least 1 is not made due to rejection by relatives who refuse to sign the documentation.

In each life lost, there are several organs that can be removed to save others, but this idea does not convince everyone. The denial also occurs even if the person has declared their desire to be a donor during their lifetime. Today, there is the possibility of registering this wish for free at a notary’s office, but without legal power and, in the end, the family decides.

CET/MS (Mato Grosso do Sul State Transplant Center) is responsible for coordinating the process of notification, procurement and distribution of organs. To be able to save someone’s life, the work also involves raising awareness, daily searches for possible donors at Imol (Institute of Forensic Medicine and Dentistry), the SVO (Death Verification Service), UPAs (Emergency Care Units) and CRSs ( Regional Health Centers).

At the head of CET/MS, Claire Carmem Miozzo says that the refusal of family members is something that occurs in all states, but in the case of Mato Grosso do Sul, the scenario is worse than the national average of 42% of refusals, due to different why.

“There are several reasons that families claim: they are unaware of the donor’s wishes, delays in delivering the body, they want the body intact, the family member was not treated properly in the hospital, family members do not accept brain death or have never heard of organ donation. Anyway There are many reasons, but the main one is that they are unaware of the desire to be an organ donor for the person who died”, he explains.

Despite the high number of denials, the coordinator explains that there are ways to transform a no into a ‘yes’. “When families are welcomed and interviewed appropriately, they are more likely to say ‘yes’ to organ donation,” she states.

As the organ donation process is carried out in hospitals, teams are trained to provide reception and family interviews. Claire Carmem emphasizes that in the end, the relative’s word is the last one that counts. “If the family does not authorize the donation, we thank them and explain the next steps for the delivery of the loved one’s body,” she says.

In addition to the role of CET/MS in reversing the denial, Claire highlights the importance of people speaking openly with their family about their desire to be an organ donor. “People need to talk to their family members and make clear, during their lifetime, their desire to be an organ and tissue donor. When the family knows the truth about the person, the chance of saying yes to the donation is greater,” she says.

In Brazil, organ donation is made by two types of donors: living and deceased. The first covers those who wish to donate and can carry out the procedure, as long as it does not harm their own health. The second is the deceased donor who, even though he was authorized during his lifetime, will only have the organs donated with family authorization. Release can be granted by a spouse, father, mother, sibling or grandparents.

Transplant queue in MS – According to data from the SES (State Department of Health), of the 559 on the queue, 376 need a cornea transplant and 183 a kidney transplant. Despite being significant, the number does not fully show how many people in Mato Grosso do Sul need one or more organs to continue living. This is because, in addition to those mentioned above, in Mato Grosso do Sul only bone marrow and skeletal muscle tissue (bone) transplants are carried out.

This year, the State has already carried out 112 transplants, with marrow transplants leading the list with 92 procedures carried out. Next comes kidney (13), skeletal muscle tissue (4) and marrow (3).

Soon, the State will be able to perform liver transplants. The Ministry of Health and the National Transplant System authorized the Hospital do Penfigo main unit to carry out the procedure. Even with authorization, the CET/MS coordinator explains that the Municipal Health Department still needs to contract the service with the hospital for this type of transplant to be carried out.

As soon as the measure is taken, CET/MS will refer patients who need the donation. “The team will evaluate the patient, request tests and if they really have an indication for a liver transplant, they will be placed on the queue and wait until a compatible organ appears. When we have a donation, we will offer it to the transplant team, which will evaluate the organ and the recipient’s situation so that we can carry out the transplant safely”, he explains.

‘Giving is love’ – The list for transplants is unique without giving privileges to patients from the private network or the SUS (Unified Health System). Once the patient enters, all that remains is to wait and this wait can last longer than the sick person has to donate. In Campo Grande, three men know from experience that the decision to be a donor saves lives.

Carlos Henrique Brittes Taveira, 57 years old, found a donor within his own family. His sister was the one who saved him in 2015 when he needed a kidney. Nine years ago, Carlos saw everything happen quickly, from diagnosis to surgery just a few months later.

In March of that year, he felt muscle pain after a football match and it didn’t take long for him to find out why. “I went to the doctor and it was found that I had kidney failure. The doctor said he would prepare me for hemodialysis and I went on a zero salt, protein, potassium diet,” he says.

After a month, hemodialysis was suspended and until June Carlos focused on healthy eating. With reduced rates, such as red blood cell counts, he was sent to the transplant queue. At that time, the sister underwent a series of tests to test compatibility, which confirmed 100%. With the ‘green light’, she needed to lose nine kilos for the surgery, which was carried out in December of the same year.

The transplant was a success and, according to Carlos, that made all the difference. “She saved my life, because if she hadn’t donated I would automatically have gone on hemodialysis. I was sticking to my diet, I thought the kidney would come back, but it didn’t. I was blessed”, he highlights.

Geison Rezende Salgado, 58 years old, has a separate story as a receiver. The businessman received, in different years, the donation of corneas and kidneys. The first experience was in 1986 when he received a right-sided cornea transplant due to a diagnosis of keratoconus.

The disease, which is considered rare, caused Geison to lose 60% of his vision. At the age of 20, he says he entered the operating room without knowing if the procedure would work, as the transplant was still new in the Capital.

“The biggest concern was about the result of the transplant, as there is a risk of losing vision due to inflammation. If I’m not mistaken, mine was the second cornea transplant in the city,” he recalls.

The transplant was a success, but in 2021 the businessman faced the queue again. This time, he needed the same organ, but for the left side. Just like the first time, everything went well and to this day Geison continues to be monitored by the same doctor responsible for both surgeries.

The story could end like this, but in 2014 Geison received two alternatives: dialysis or a kidney transplant. That year, the man from Campo Grande went to São Paulo, to Hospital das Clínicas, for treatment. The sister was the one who donated the kidney, which ended up being refused by the businessman’s organization.

“Everything went wrong, I had hemorrhage, thrombosis. I didn’t die for God. Afterwards, I underwent two years of dialysis and in 2016 they called me to Hospital do Rim in São Paulo”, he comments.

This time, Carlos received a kidney from a deceased donor. “The transplant was perfect, it’s been going on for eight years and I’m following it here in Campo Grande in São Paulo,” he says. Save for donating organs more than once, the businessman hopes to one day do the same for someone else. “I am a giver. I usually say that there must be something that will be of use to someone. I hope it helps and I think this (donation) is very important,” he says.

In Campo Grande, Carlos Alberto Rezende, ‘Professor Carlão’, is a well-known figure in relation to raising awareness of blood and organ donation. In 2015, he was diagnosed with severe bone marrow aplasia and the following year he received a bone marrow transplant. Since then, the Biology and Chemistry professor has drawn attention to this cause in Mato Grosso do Sul.

Creator of the Sangue Bom Institute, he and other volunteers work in the areas of health, education, sport and culture based on the importance of being an organ, blood and bone marrow donor. The professor emphasizes that it is essential that those who feel the desire to donate organs talk to their family members about the topic, as regardless of this desire, it is the person responsible who will authorize the procedure or not.

“It is very important that this awareness reaches families. The Sangue Bom Institute, with my lecture, ‘Stories of a Transplant’, tirelessly provides this information. This way, we not only raise awareness, but also make people aware of the importance that this small gesture of love has in the lives of others”, he explains.

Despite the pain of losing a loved one, the professor says that the decision is still a gesture of love for others. “The most important thing about adoption is that we do good without seeing who it is and without expecting a response, because living is a gesture of love. Therefore, awareness is very important”, he concludes.

In Mato Grosso do Sul, organ transplants are performed in the following institutions:

• Kidney transplant: Santa Casa (SUS) and Hospital da Unimed (private and health insurance);

• Autologous bone marrow transplant: Hospital Cassems (private and health insurance);

• Transplantation of skeletal muscle tissue (bones): Unimed Hospital (agreement and private);

• Corneal transplant: Santa Casa (SUS), São Julião (SUS) and several private clinics perform cornea transplants.

Criteria – The waiting list for an organ works based on technical criteria, in which blood typing, weight and height compatibility, genetic compatibility and different severity criteria for each organ determine the order of patients to be transplanted.

When the technical criteria are similar, the chronological order of registration, that is, the order of arrival, works as a tiebreaker. Patients in critical condition are treated with priority, due to their clinical condition. When a patient needs a transplant that is not performed in Mato Grosso do Sul, the patient will be sent to another state with a team and establishment authorized to perform the transplant.

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