LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
I just saw your post, so please forgive the delayed reply.
We've had patients with ports for years. They don't seem too bothersome.
As for the scheduling, some hospitals tend to be big, slow and inflexible, even when the insurance cooperates. The insurance shouldn't dictate the schedule, since they will cover the infusion every other week, it should be possible to hold onto the dose for a few days in one direction or another. I would try to avoid missing doses but moving the infusion date a few days or even a week should be doable on occasion. Maybe Onesource can help with the insurance issues- that's what they're there for!.
We often referred patients to a small, private hematology office, where they were able to be more accommodating to patients' schedules, and there was less wait time. Hematology nurses are used to giving infusions, so they may be more comfortable with enzyme replacement therapy than other specialists. If you have a genetic counselor he or she may be able to help locate a smaller doctor's office for the infusions until home infusions are an option...
Please feel free to message me if you have any questions about LAL-D or ERT. I see the messages!