Help! Need information on end stage CF

[pedsRN121]

Hope you can help, I need to find some information about nursing care for end stage Cystic Fibrosis. Unfortunatley, on my floor we do have a lot of great CF patients that we all get to know and love. But they are not always that healthy and some do end up leaving us forever.

We have dealt with it the best we can. But I am wondering if there is any information about nursing care and end-stage CF, I could not find much when I googled it.

If anyone can help, I know I would appreciate it and so would my coworkers. We love these kids and want to help them however we can.:redpinkhe

[leslie :-D]

i've had a couple of these kids in hospice.

they were primarily given moderate to lg doses of morphine.

one opted for mechanical ventilation, but only for a couple of days (she was 17).

prophylactic abx, steroids, nsaids, o2, expectorants, were all part of therapy but in the end, they did little.

morphine is what kept them comfortable.

as for psychosocial issues, please remember that a sibling could also have this disease, and to monitor for their response.

heartfelt prayers to this young patient and her family.

leslie

[lpnstudentin2010, LPN]

.......

as for psychosocial issues, please remember that a sibling could also have this disease, and to monitor for their response.

heartfelt prayers to this young patient and her family.

leslie

Yes this was so with a case in my town.

There were these two twins. They both had CF. They were both in need of lung transplants though one more then the other. The one who needed it most got one, the other did not. The one who did not get the transplant ended up dieing.

It was probably hard for her on many levels.

1. It was her twin

2. She has the same disease that took her sisters life

3. she got a transplant and lived, her sister did not and died.