“Living”: Patients living with invisible disabilities want to live with dignity

In commemoration of World Kidney Day (March 13), the Lithuanian association “Gyvastis”, which mainly unites patients waiting for a kidney transplant, people living with a transplanted organ, contributes to the slogan of this year’s day, “Kidney health for all”. This day aims to draw the public’s attention to vital an important organ – the kidneys and their diseases. Statistics declare that kidney diseases affect 1 in 10 adults. One of the most common diseases of this organ is kidney failure. Symptoms of this disease are fatigue, lack of appetite, shortness of breath, difficult to control arterial blood pressure, heart rhythm disorder. Patients with end-stage renal failure, when their own kidneys are no longer able to perform all their functions, undergo dialysis procedures.

The president of the association, Aušra Degutytė, says that the association must actively work and suggest ways to improve the current system: “We are happy that in our country we have all the means to treat chronic kidney disease – medications, kidney transplants, dialysis, but because of all these measures – and because of the drugs compensation, and the availability of dialysis services, emphasizing the inaccessibility of peritoneal dialysis, we constantly make suggestions, explain, discuss and ask to take into account the arguments of the people who receive these measures and who know them best.”

Institutions adopting legislation invite representatives of patient organizations to participate in the consideration of these documents. The members of “Gyvasties” who submit proposals and participate in discussions are particularly active in the preparation of medication reimbursement documents, patient transportation to dialysis and treatment facilities: “Chronic kidney disease patients receive little income, which is why the medication reimbursement mechanism is very important to us: medications cost a lot, there are simply no more funds left for other areas of life, – says A. Degutytė. – In order to reduce premiums for necessary daily medicines, we fight together for a more dignified life for patients – to have money left over for better food, so that they can even go to a concert or the theater once in a while.”

The patients themselves also consider educational activities to be the permanent work of “Gyvasties” – thanks to public awareness and acceptance of organ donation, the number of donors increases, and at the same time, the chances of patients receiving a kidney transplant increase: “In our association, there are both children and adults who have been suffering from serious kidney diseases for years, are undergoing dialysis and are waiting for a kidney transplant, – explains A. Degutytė. – We do not underestimate dialysis as a life-sustaining procedure, but thinking about human well-being and quality of life, we aim to shorten the waiting time for transplantation, which means dialysis time, and dialysis itself to be less traumatic and cause potential side effects. Therefore, we strive to increase the availability of peritoneal dialysis, currently this type of dialysis is not sufficiently available. Out of 1,400 dialysis patients, peritoneal dialysis is applied to only 60, i.e. only 4%, while the European average is about 30%.”

Aquila’s childhood: could not eat strawberries and chocolate due to kidney disease

Akvilė Juškauskaitė, a student from Alytus, knows what dialysis is, because she has had a chronic kidney disease since she was a baby – from the age of 8 months, dialysis procedures were started when the girl was only 10 years old. “When you have to go to dialysis every other day, it’s like you get used to such a routine, but the bad feeling during dialysis and the restrictions in everyday life were really tiring,” says Aquilė, who is now an adult, about her illness. – During dialysis, I felt nauseous, I was very weak, I had no strength at all. Between dialysis sessions, it was very difficult to endure thirst and not get drunk, I could not eat my favorite strawberries and chocolate, or drink juice. The hardest part was when I saw my peers eating things that I couldn’t. And that catheter in the chest is a big inconvenience that I had to live with.”

Aquila’s childhood was completely atypical for children of that age: “I started dialysis in the summer, its days were deleted from the week: I rarely met my friends due to my poor health, even though it was vacation time. When September came, I started to attend the fourth grade, but I stayed at school for only 8 days and returned to school only after the transplant – in the fifth grade.”

Now Akvilė has been living with a transplanted kidney for 10 years, she is actively involved in the activities of “Gyvasties” – when she was a schoolgirl, she participated in educational lectures, told the story of her illness and recovery at donation publicity events: “Kidney transplantation changes life fundamentally – it is a priceless gift from the donor’s relatives . I feel and understand that very well, which is why I encourage everyone to think about organ donation, so that neither children nor adults have to suffer from diseases that are cured by a transplanted organ.”