|
topcow,
Your son has a tough pair of health problems to cope with. I understand your concern and I would definitely get a couple of opinions from different doctors.
When you have a port, one issue is self-care. Some 15-year-olds would be more likely than others to be sufficiently careful with a port, keeping the area clean, not touching it, washing hands regularly, handling sterile supplies, cleaning the caps, flushing the port if you're in charge of doing that, and making daily checks at shower time to identify problems right away. It's worth considering where you think your son lands on the scale from hopelessly careless to dependably careful. Infections can't always be avoided but a lot depends on proper care of the port. Fifteen is an age when levels of responsibility vary widely.
If your son had a BMT so you know who the donor would be?
If the doctor decides to agree that it's medically appropriate to go straight to transplant then you might want to double-check if your son's medical insurance company is going to cover a transplant for PNH without prior treatment with Soliris. Presumably it should be covered but both choices are expensive (an insurance company's least favorite word) so finding out for sure might avoid problems later.
|