My 10 year old son has pulmonary hypertension and pulmonary vein stenosis. He has had lung transplant assessment in august this year. The doctors feel it is time to put him on the active list however are unable to give us a timeline without transplant as they have no way of knowing how quickly he will deterorate further, just that he will. he is currently on oxygen and very restricted activity wise.
We are having a hard time as parents making this decision so thought that it might be good to talk to others in a similar situation or who have gone through this.