world transplant day
On the occasion of World Transplant Day, we interviewed Yolanda Fernández, a graduate in Early Childhood Education, president of the AIRE association and member of the Lovexair advisory group. Today we talk to
On the occasion of World Transplant Day, we interviewed Yolanda Fernández, a graduate in Early Childhood Education, president of the AIRE association and member of the Lovexair advisory group. Today we talk to her to tell her story and that she can help people who are in the same situation as her.
Tell us your case...
I was diagnosed with interstitial lung disease with hypersensitivity to an external factor, which was pigeons. This disease created a fibrosis in my alveoli that worsened as it progressed. The diagnosis was slow in coming. In fact one of the main problems was that they thought that what he had was Asthma. The time that passed and the confusion meant that for 6 years I did not have a clear diagnosis, which caused a decrease in lung function of up to 40%.
The alveoli were already so affected that as soon as the correct diagnosis arrived, they gave me a very short life expectancy: two years. They told me that she would not be able to continue working, that she needed a transplant and that she would not be able to be a mother, which for me was harder than the transplant itself.
I was on oxygen for a year and a half, until the transplant came. I had both lungs transplanted.
What is the greatest difficulty encountered by people with rare respiratory diseases?
The biggest difficulty is that we are alone, since they are very rare. We do not have any type of help, nor any type of accompaniment, neither the affected people nor the families. Neither do transplanted people.
Where can you find support or solutions?
In my case, when I was transplanted, I did not know the process and did not have access to any information about it. During that time, when as an affected person you face alone, I searched for and found the only association in Catalonia that offered support to people in my situation: the Aire association. I've been involved ever since.
What is your opinion about accompanying the patient with the doctor and an online coach?
I think it's super important because it doesn't really exist. When you go to the doctor and he gives you the news, it is a strong blow. At that moment, they give you bad news and the next visit is in two months. The accompaniment of the doctor is important, but it is not daily.
The figure of the online coach is super important, because it really is the worst moment of your life and you may have doubts in your day to day life and you need someone who will answer all these questions. This possibility is very useful and necessary.
What situation does a person who needs a transplant face?
He is facing a very aggressive and very tough operation, in which there is a high risk. It's a reality, it's like that... At first it's the strongest blow they can give you. Then, you have to assume everything you have to do. What did I do? Upon receiving the news, it was a great shock, and the next visit was two months later. As if it were something minor. I faced being told: you have two years to live, you can't work and you have to prepare for the operation.
I thought I had to play sports, but which one? Nordic walking! I learned to do it. I did 10km every day and I prepared myself very well physically and mentally. Although it is difficult, you have to be positive and put your fears aside. People recover from the transplant, it is a more or less long process, but you go out and live a normal life. You have to be yourself, in addition to the support of the family, since it is you who enters and leaves the operation. For a year and a half I prepared myself very well. With the passage of time, I had less and less lung capacity, and I knew that either the transplant would arrive or I would die... That year helped me to contemplate life, and see that I only had this one left.
Can everyone access the operation and treatment?
Not everyone can undergo surgery or undergo transplant treatment. When you go to do the tests, they evaluate if the body is prepared to face and overcome that operation. It may be that the body cannot overcome it (for example if you have other diseases, such as an affected kidney) and then the medical team does not risk it. Everyone has access to treatment, but it is not an easy path either. It may be that you refuse medication after ICU.
Given the possible operation, what preventive measures do you consider necessary?
Above all it is important before the operation. I used antibacterial soap every day with me and a mask often, because if you're sick they don't transplant you and if you have an injury they don't either. It is important to take care of yourself because you have to be 100%. You don't know what day they're going to call you: it's random and if for whatever reason you're not available that day, then it goes to someone else. That is why it is important to constantly take care of yourself.
I spent a year and a half taking great care of myself, I created a routine. Food was also very important, very balanced to lose weight and stay strong. When I moved I used to wear a mask, due to my allergy to pigeons, and also when I entered the subway, because I couldn't get sick. Also, being dependent on oxygen, everything was much more limited, I avoided going out on winter evenings, and that was key to maintaining good health and entering the transplant well prepared.
How does air quality affect the lung health of a transplanted person?
Air quality affects us much more after the transplant since pollution affects us much more than before. It is important to be very careful in public spaces such as the subway where there are many people gathered in a small space. The city environment makes taking care of yourself very important, living outside the cities can be beneficial.
What motivated you to be part of the Lovexair advisory group?
I found out about the Foundation after attending the “I Conference on digital health for professionals and chronic and respiratory patients” and it motivated me because I saw that with my testimony of life I could contribute and help people. I like being able to advise and accompany and give help to people who are going through the same thing I went through, so that they don't feel alone right now. I want people not to be alone, which is why I also got more and more involved in the AIRE association.
Currently, you are the president of AIRE. What are your main projects in 2020?
We want to continue helping people through talks in institutes and schools talking about transplants and organ donation. We have two big projects underway: one of them is a massive Nordic walk this spring and another in Sant Jordi, which is a very important festival in Catalonia. We are also looking for a space to have a face-to-face headquarters.
This year, we will continue to assist the transplant unit at the Vall d'Hebrón Hospital, where we have been volunteering for 15 years. We also want those who need it to be able to have psychology, psychiatry, speech therapy, podiatry and respiratory physio services , at home if necessary.
What role do you think organizations have in improving their quality of life and respiratory health?
Patient associations play a very important role. At Aire, for example, we are dedicated to the patient, the family member and their respiratory health. When they have a problem and need a transplant, they are alone and very lost. Our idea is to give personal support to the affected person and also to the family. We guide you throughout the process.
The quality of life improves with the activities that we organize because they are about socializing, being with people and making available all the services that I have mentioned before. The better your health, the better prepared you will be to better face this situation.
Many thanks Yolanda for telling us your story and many successes for Aire and all your projects!
Read Related Article:
