Impact of the disease on relatives

Question

Hello, I have two young children who live every other week with their dad, who just started a relationship with a woman with cystic fibrosis, waiting for a lung transplant. He decided to introduce her to my children, and I want to know the psychological risk for my children. I only know that she is 35 years old and she is on the transplant list. What are the chances for her to have the transplant in time? Is transplant proposed only at the terminal stage of the disease? I have a lack of information and their dad is not looking for information, because he does not want to face reality, but this involves my children so I would like to have answers, before exposing them to life with this disease. thank you

Answer

Dear questioner,
Lung transplantation is considered when lung function deteriorates significantly. It is the last resort therapy to prolong the lives of patients whose prognosis is engaged. Transplantation, if if it is an adventure not without risk, remains nonetheless a hopeful solution for many patients. Advances in surgical techniques, anesthesia and treatment against rejection and infection are ongoing, allowing for long-term success and a significant improvement in quality of life. Today, the benefits of transplantation on life expectancy and quality of life are undoubtful. It will further increase.

When someone with CF develops severe lung disease, the CF care team may discuss the option of lung transplantation with the person. Most CF care teams will begin discussing transplant as an option before it becomes necessary. By necessary we understand a severe deterioration of lung function.

If the father of your children has a relationship with a woman with CF and if he wants your children to meet this woman, it seams difficult to not give your permission.
If you don’t allow it, it may put your children and their father in a more complex situation then just meet a very sick women.
It is true that living with a sick person, who’s life is threatened, may cause anxiety and also raise a lot of questions. The fact that the father of your children is living this relationship puts him in the very mediatised universe of the CF patients. He probably knows a lot now about the stake around CF and maybe that is what he wants to protect your children from. However, when your children will meet the woman who their father is dating, they will probably see that she is a bit different, that she is very thin, that she walks very slowly, that she needs oxygen, that’s she coughs a lot, that she swallows a lot of drugs… It sounds then difficult to say nothing about all of this. Not talking may produce a lot of fantasy, which is probably more insidious that the truth itself. Therefore, telling the truth to the children appears essential. But it doesn’t mean telling everything. You’d rather use simple words to tell them what is going on with the young woman. She would probably know how to explain them what is CF and she could do it better then anyone. Patients with chronic illnesses are used to talk and explain what kind of disease they have and what they are going through. Their words are usually the right ones. But, being able to prepare them may also help them to hear what she will probably tell them. You could also encourage them to ask questions and try to answer them with no dramatization and no overflow of emotions. It is not easy, it may even be difficult, but your children, because they have kind and living parents, will understand, at their level, what is going on in the life of their father and his partner, as well as in yours. They will also feel allowed to ask you, if needed, some other questions. For children, it is often complicated to ask questions but not feeling free to do so can be worrisome.
The psychological impact will depend on the way the facts are going to be talked to, or not, in both houses. We think that it is important that the parents adjust the way there are talking to they children.

We hope that this answer will help you to set the best solution for the well-being and the balance of your families. Please note that you can always rely on the member of the CF organization near-by. They will know how to answer your questions regarding the CF and will be able to share their experiences, as patients or families, with you.

Maya Kirszenbaum

10.01.2013