Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor.
The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live donor to a young patient in Japan and for her information on the PH association she is the President of, PHA Japan.
Mrs. Murakami has been the President of PHA Japan since 1999.
Noriko and her husband each donated a lobe of their lungs to Yukiko, their daughter, who was diagnosed with PAH in 1996 when she was only 14 years old. The transplantation surgery took place on 5 th of January, 2001. Her mother says Yukiko’s health is as good as any other person of her age. She was married 5 years ago and has a baby boy. She has had a full time job since her graduation 15 years ago.
Regarding the attitude of a parent towards a child with a health problem, Mrs. Murakami, with her experience, believes each case is different and that the situation depends on the child.
Finding a donor is extremely difficult in Turkey and is also a major problem in Japan. Finding a donor from a live person and the legislation concerning organ donation are very strict in Turkey, as indeed in Japan.
In Japan transplantation surgery for young patients is not very common, and even less so those those from a live donor. It is possible if a member of the family wishes to donate one of their lobes. It all depends on the particular case says Mrs. Murakami. Similarly donation from the deceased is limited.
According to Mrs Murakami there does not seem to be very a great improvement for lung and heart surgeries in Japan in past years. Mrs Murakami believes that having a surgery is a good choice provided the family accept it. Following the surgery there do not seem to be many activities the patient should stay away from. As in Yukiko’s case, after a certain period of time, the patient goes back to her normal life.
When Yukiko was diagnosed as a PAH patient in 1996 there were no medicines or ways to save her in Japan, so Mrs Murakami with her husband decided to take her to a hospital in the USA to have (epoprostenol) Flolan therapy. The lack of treatments in Japan triggered her to set up an association for patients suffering from PAH. Although setting up the association was not difficult she says maintaining it is. For her it is very important to have a patient association to exchange information and ideas with others. So far they have 120 members who are all patients. They do not have any volunteers. The work carried out by the association is both centralized and decentralized.
Awareness activities organized by the association include the national PH conference, Hokkaido (Northern part of Japan), and PH Seminar, Kyushu (Southern part of Japan). The activities are organized only on national level, but unfortunately are not covered in the national media. PHA Japan, together with other associations, sometimes participates in scientific meetings and meetings with pharmaceutical companies. On-line seminars are held to improve awareness of the illness.
The association receives a small funding from a few pharmaceutical companies but they have neither financial nor psychological support for patients. Regarding relations with other associations, they are independent.
We were honoured to have had the opportunity to interview Mrs. Murakami, a person who has given a new life to a child. What is more, she is dedicating her energy to facilitate the lives of other PAH patients in Japan. May she and her family live in good health.
Interview courtesy of PAHSSc
Photo: Yukiko and her parents