My niece was diagnosed last year

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
<br />That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?

 

[WorriedAunt]

Here's an update: my brother and his wife decided to move my niece to another CF-clinic (from Groningen to Utrecht). They are so happy they made the change because the treatment is night and day difference! They have one doctor there with 2 assistants and they have weekly meetings to discuss all their patients. All patients are in their own separate rooms (in Groningen they would put more kids in one room with different diseases, which Utrecht found really strange as they said you should never put sick kids together in a room especially not one that has CF). But the main thing: they could ask questions without feeling stupid or made feel like it is all their fault. They received information about CF and my niece's diagnose they hadn't heard before plus they took her off the antibiotics she was on!! They actually did some tests and found out the type of antibiotics they had given her in Groningen were not working on the infection she was having. So this is a lot of good news <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[WorriedAunt]

Here's an update: my brother and his wife decided to move my niece to another CF-clinic (from Groningen to Utrecht). They are so happy they made the change because the treatment is night and day difference! They have one doctor there with 2 assistants and they have weekly meetings to discuss all their patients. All patients are in their own separate rooms (in Groningen they would put more kids in one room with different diseases, which Utrecht found really strange as they said you should never put sick kids together in a room especially not one that has CF). But the main thing: they could ask questions without feeling stupid or made feel like it is all their fault. They received information about CF and my niece's diagnose they hadn't heard before plus they took her off the antibiotics she was on!! They actually did some tests and found out the type of antibiotics they had given her in Groningen were not working on the infection she was having. So this is a lot of good news <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[WorriedAunt]

Here's an update: my brother and his wife decided to move my niece to another CF-clinic (from Groningen to Utrecht). They are so happy they made the change because the treatment is night and day difference! They have one doctor there with 2 assistants and they have weekly meetings to discuss all their patients. All patients are in their own separate rooms (in Groningen they would put more kids in one room with different diseases, which Utrecht found really strange as they said you should never put sick kids together in a room especially not one that has CF). But the main thing: they could ask questions without feeling stupid or made feel like it is all their fault. They received information about CF and my niece's diagnose they hadn't heard before plus they took her off the antibiotics she was on!! They actually did some tests and found out the type of antibiotics they had given her in Groningen were not working on the infection she was having. So this is a lot of good news <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kitomd21]

So glad to hear that her treatment has improved...we were in a similar situation with our daughter a couple of years ago. Switching clinics has made us feel a lot better as well.

 

[kitomd21]

So glad to hear that her treatment has improved...we were in a similar situation with our daughter a couple of years ago. Switching clinics has made us feel a lot better as well.

 

[kitomd21]

So glad to hear that her treatment has improved...we were in a similar situation with our daughter a couple of years ago. Switching clinics has made us feel a lot better as well.