Cystic Fibrosis, Lung Transplantation

Question

My nephew suffers from cystic fibrosis since he was born. In the meantime he is 40 years old. He suffers from respiratory troubles, diabetes and is terribly plugged with mucus continuously. Meanwhile he can only live with supplemental oxygen supply. His weight has fallen to a mere 56 kgs. His doctor in charge has confronted him with the question to have a lung transplantation. My nephew already had a preliminary talk in the university hospital in Hannover. The appointment at which he has to decide in favour or against a transplantation is getting closer.

Now, I read an article in a doctor's magazine that I quote here:

New lung rather does harm

Transplantation in case of cystic fibrosis raises mortality risk

SALT LAKE CITY (eb.). For most children with cystic fibrosis a lung transplantation rather raises the risk to die young, this is what researchers of the University of Utah in the USA report. In the scope of the analysis of 248 minor patients who have been lung transplanted during a period of eleven years the scientists asserted a clear benefit through this therapy for one single patient only.
For 162 others the transplantation raised the mortality risk – in some cases up to sevenfold. For the 85 remainding children a clear advantage or disadvantage could not be identified. The authors of the study strongly request to select candidates for a transplantation very rigidly.

Also in my nephew's interest it means a lot to me to learn about how you assess the situation. Are you in the position to write a comment on this or, if not, – who should I contact in your opinion?

Answer

Hello,
don't let yourself be irritated: The data mentioned by you are referring to children. Analyzing the benefit-risk-evaluation demonstrates again and again that for adult CF patients there is without a doubt an evident mean survival advantage after the transplantation compared to patients on the waiting list – especially regarding the quality of life.
As a matter of course, the benefit of a transplantation is the more advantageous the worse the condition before the transplantation is. However – and this is what makes things so complicated – one has to know that complications and difficulties increase when the starting conditions are worse; i.e. for example that an evident underweight is a risk factor for a worse result of the transplantation.
But please note: all this are statistic figures, averages, etc. There are always patients where all this applies, for others it is worse for others again it is better. An individual prediction what will happen or how well or badly it will turn out cannot be given.
Since things are so complex it is indispensable to discuss all questions frankly with the doctors of the transplantation team – even if you have to ask for a new appointment for that.
Best wishes
Prof. Dr. TOF Wagner

25.12.2007