Ruslan from Vilnius still remembers the unexpected start of a serious illness: only one way can help him recover

Ruslan (30), a Vilnius resident currently living in Lentvaris, recounts his medical history in an incredibly calm manner. A man who can no longer leave the house, but who does not lose optimism throughout the conversation, in a single sentence pretends that there are moments of weakness, but there are no moments that doubt that this is temporary. Only until a suitable lung donor is available.

SAM’s National Transplant Office invites you to learn about Ruslan’s story and reevaluate the great significance and value of organ donation, the invaluable hope it brings to seriously ill patients.

Unexpected appearance of the disease

Ruslan remembers perfectly the day his life took a different turn: in the summer of 2012, while doing physical work, he felt like he was short of breath. The twenty-one-year-old found it strange and consulted a family doctor. A few days later, after doing the necessary research at the VUL Santara clinics, Ruslan went home. However, as soon as he left, he received a call from a doctor to come back, because the test results were received, which were not promising, and he was hospitalized for even more detailed examinations. After a week of various examinations, doctors were able to make a diagnosis of stage I sarcoidosis.

Ruslan was prescribed a drug, but it had no positive effect, only the side effects of the drug were felt: he gained 25 kg of weight in a month, and his stomach was damaged. Then he underwent even more sophisticated examinations and, after an open biopsy, an additional diagnosis was made: pulmonary alveolitis, during which the sarcoidosis progressed to stage IV, the most severe. With these two diagnoses, Ruslan lives to this day.

The only hope is a transplant

Significant 2015 in Ruslan’s life: at the beginning of the year, after a few years of friendship, he married his beloved Jolita. However, finding happiness in one area of ​​life began to deteriorate in another – health was deteriorating. In that year the disease progressed, he had to quit his job, he continued his treatment at LSMUL Kaunas clinics. Here Ruslan was waiting for a lot of research again, but there was no cure for his disease, only a way to make breathing easier was found, every 2-3 months. Lung dilators are given after 10 to 14 drops.

In late 2015, six months after the wedding, Ruslan was rushed to the hospital; The results of the investigation showed that the situation was getting worse and the condition of the lungs was clearly deteriorating. Therefore, in February next year, seeing that the situation would not really improve, Vilnius’ own neighbor asked to be included in the waiting list for lung transplants. However, Ruslan has been waiting for a suitable lung donor, which happens 1-2 times a year, for 5 years.

“Already ill and spending a lot of time in clinics, I read various information about my illness, cases of such illnesses. In the clinics, I met other patients with whom we talked about the treatment, I listened to their experiences, I asked the man, where did you find out about the possibility of a transplant? Says the man. – Finally, in the Kaunas clinics, I met a person who lived successfully after a lung transplant. The story he told inspired me to hope that the transplant would also help me. “

Rescued by an oxygen apparatus

2018 as the disease progressed, he became a regular visitor to the clinics and now visits them almost once a month. She has regular CT scans every year, which show her lung condition is getting 2-3% worse.

In order to feel good, I used to have 1 to 2 hours every day. Breathe oxygen. However, as his health deteriorated, he had to purchase increasingly powerful stationary oxygen devices. You are now permanently connected to said device, 24 hours. per day. This restricted the man’s movement and today he leaves home only when he goes to the LSMUL Kaunas clinics.

Ruslan recounts what it means to be constantly connected to an oxygen device: “In order to be able to move freely at least around the house, I have a 12 meter long hose connected to the device. Since we live on the fifth floor of an apartment building, it takes me so many meters to go down to the clinic if I need to go down to the first floor. “

For this reason, when asked if he does not want to go outside while at least sitting on the bench next to the stairs, he replies that given the effort it takes to leave the house, any desire ends soon. “If I want to take a walk, I go out to the balcony and” walk “under the patio,” Ruslan seems to say without a voice in his voice.

Unexpected attacks due to oxygen deficiency

When asked what his day is like today, the man confidently teaches: “I have a schedule every day and I follow it. I do it for the family to eat, if I feel good, I change the bedding, clean the dust. Twice a week I clean the closet, my wife is already laughing at me. I’m tired of watching TV and surfing the Internet for so many years. “

From such a narrative, his days seem very simple, but he quickly returns to reality telling about the oxygen deficiency attacks: “Such attacks come unexpectedly. My lips and hands start to turn blue, my limbs melt, my throat seems to be pinched and I can no longer breathe, and I immediately clarify that I am used to such attacks as much as possible. – For the first time it was really scary that I no longer inhaled or suffocated. Now I know how to act, what position to take in order to breathe more air ”.

You feel great support

Ruslan is happy to have a wife and other relatives around him during his illness who are fully supportive and helpful. “It happens to me, to the optimist whose hands are bent, I tell him that I am tired and I can no longer, but my wife and others close to me motivate me not to give up in those moments. The support is wonderful, from family and relatives ”, says the man.

“I am also very grateful to the doctors, nurses and all the clinic staff. I have no complaints, they all do a great job, communicate very well and are kind, I receive a lot of support from them”, the young man kindly responds to the doctors and says he understands that there is simply no other treatment for his illness.

Waiting for the right lung donor

Earlier this year, Ruslan received the first call from doctors that a suitable lung donor had appeared and invited him to come to the Kaunas clinics. Unfortunately, as sometimes happens after the start of organ explantation (removal of the donor’s body), already in preparation for the transplant operation, a call was received from the operating room that the donor’s lungs are not yet suitable for surgery. transplant.

“I reacted coldly to that message. The hospital staff was surprised that I was the first patient to react so coldly, but I take this position, it is as it is, I think the right lung will arrive,” he explains. – Although I have been waiting five years I don’t lose hope. I calmly wait for a call and don’t stress myself out with thoughts like “maybe today, maybe tomorrow, maybe this month. I’m determined that the right lungs will still be left, and when not for me.”

Future plans are in the hands of other people.

When asked how he envisions life after transplant, what he would plan then, Ruslan assures himself and laughs: “My plans are already in place, we just have to wait a moment to fulfill them. And in the plans, first of all, work and children ”.

“The most important thing for me is that when I have healthy lungs, I can move freely again, go somewhere, go without an oxygen device. I miss it so much. That is why, first of all, I would like to travel around Lithuania,” he smiles. the man of only 30 years.

The possibility of implementing these plans depends little on Ruslan at present. Everything is in the hands of the donor loved ones who decide whether to donate the organs of their relatives for donation.

“If readers of my story had to make that decision, think that you are still losing your loved one. But you can still save 7 other people! I understand that the decision is difficult, but on the other hand, I think it is a comfort for the family to know that somewhere a person is walking with the organ of their loved one and they have helped that person to prolong their life.

The solution in the hands of loved ones

Ruslan is currently one of six people awaiting a lung transplant. Lung transplant operations are performed about once or twice a year. This is a very complex operation; According to doctors, donor lungs have higher compliance requirements than other organs. Anthropometric data and blood group matching are very important for lung fitness.

“In the Republic of Lithuania, this type of transplant is performed only at the Health Sciences Hospital of the University of Lithuania at the Kaunas Clinics. They are performed by specialists – cardiac surgeons. Donor selection is a careful process that pays attention to the smallest detail: donor and recipient blood groups, anthropometric data, functional status of the donor’s lungs, if no evidence is found, the decision is made to perform a transplant lung. Lung transplantation requires a high degree of precision between donor and recipient, so these transplants are rare and operations are complicated, ”said Andrejus Bura, nephrologist and senior transplant coordinator at LSMU Kaunas Clinics.

But first of all, even before assessing the condition of the lungs, it is necessary that there are donors from whom the lungs can be removed, which is already in the hands of the loved ones of the deceased who have the last word.

Any adult can express their support for organ donation by signing an agreement that their organs can be brought in for transplantation after death. The consent can be signed online at https://ntb.lt, medical institutions, Eurovaistinė pharmacies. It is very important to discuss that decision with your loved ones.

It may be necessary for each of us

Organ donation is an extremely important medical opportunity that saves when no one else can help the patient. As Ruslan’s example shows, any of us may need an organ from a donor: One day, a healthy twentysomething in his twenties suddenly became a patient and constantly opened the hospital door.

Unfortunately, we only think about it when faced with it. On the other hand, as everyone may need it, as well as everyone can save someone else’s life by accepting organ donation for their noble decision. SAM’s National Transplant Office calls for indifference and deliberate participation in the donation process.