Mom recently diagnosed with Wegener's

[Sangye]

Cindy, they should do an echocardiogram since Wegs can affect the heart. That's the diagnostic imaging test of choice to rule out Wegs involvement.

If her lungs are full of fluid, her heart will be under greater stress. I know what you mean by the weekend docs. It can be awful sometimes.

[elephant]

I agree with Sangye re: echocardiogram. Sounds like they are trying to figure this out, but I know on weekends you can get different docs...but some of them could be pretty good.

[Nancy]

Have you called back to Dr Abdou's office and spoken with his nurse Cindy? She will let him know what is going on - it sounds too much like WEGS and the oxygen level at 90% is worse than low prednisone and the cytoxan... My fingers are doubly crossed for her..and you and your father.. I am so sorry that this is happening...with so little information..

[Cindy R]

Thank you Nancy. I called Dr. Abdou's office this morning and talked to his nurse. She basically said we can't do anything unless the doctor that she is under now agrees to call Dr. Abdou himself and we can only suggest that they do this.
Hospital called this morning and said she is now critical, that her breathing is more labored. They are wanting to increase to 100% oxygen, but they don't know if her lungs can handle it.
I think the only thing that will bring her out of this now is God himself. I don't know what else I can do. This is so hard, I just want to yell at the doctors to do something, but I'm sure they are doing everything they know of to do.

[DEE]

Cindy you will be in my thoughts , thinking of you and your mum and family DEE x

[chrisTIn@]

I can understand that you want to yell at the doctors!
This is so frustrating, to get the feeling that you cannot do anything...
Is n't there a way you can convince the doctor she's under now to consult the WG specialist?

You are in my thoughts too.

[Brooke]

Cindy - you and your family will be in my thought and prayers. I hope your mom can fight this and I hope you can get her other doc involved. I can't even imagine the frustration you are going through right now.
Take care and GOD bless

[elephant]

I'm so sorry Cindy, thanks for letting us know.

[JanW]

I'm so sorry Cindy. I know that our nurse/patients here will know much better, but is there anyone that you can go to in the hospital when you need to go "over the doctor's head" to get results -- essentially a patient advocate or something? It seems crazy to me that if they know she has WG they will not consult with one of the leading specialists on her case!

[LisaMarie]

cindy,
sorry to hear about ur mom...i have been out of the loop because i was just on the hospital for 14 days and am now home on o2....i had pnuemonia resp failure and fliud around my lungs...i was lucky that when i crashed i was placed on bipap and not a vent....if u can find a patient advocate do so....Dr Abdou needs to be involved...my WG did not have privalges at the hospital i was at but the pulmonaty doc keep him informed....i had infectious disease also help in my treatment....o had a bronchoscopy with no sedation...also had lots of fluid on my lung....the only drug that helped me feel better was an antifungal ...i hope i mom pulls out of this....o know my family never wants to go thru it with me again will keep u in my prayers