Granddaughter Has WG

[Sangye]

Oh, Cindy, this has me in tears.

As I read your post last night I thought that was the case. It's not as obvious as you'd think to have the kidneys shut down. On the plus side, there are many people (I know they will chime in here) who had their kidneys shut down and the kidneys recovered.

It's good that they're getting docs from all over, but they must have a Wegs specialist. I bet you need something to do today to keep from worrying. Please give VF a call and see if they can help you get hold of a VF doc who could advise Katie's docs right away. I can assure you her parents are not able to do this. They're bombarded with doctors coming and going, nurses, procedures, info--all this happening to their little girl so fast. They don't know that Katie's doctors don't know.

You can email me if you want to talk and I'll send you my phone number. Please don't wait to call VF.

[Grandma2Katie]

Sangye,

Will call VF right away. I am pleased though with how assertive Laura and David are being with the doctors. I reminded Laura to keep notes on treatment. She has gone back to Forest City to get clothes and necessities and make phone calls. She seems to be holding up pretty well considering how fast all of this has happened.

Thank you again..... will check in here off and on today.

Cindy

[coffeelover]

All I can say is I am so sorry! I hope the transfusions and cytoxan helps quickly. I will be praying for her recovery!
Lisa

[crackers]

cindy as quickly as the symptoms have progressed they can be halted with the proper treatment and medication which hopefully she is now receiving.everyone here has katie and all the family in our thoghts.
john

[andrew]

Hi Cindy...
Sounds similar to my situation. My kidneys shut down and my lungs were almost full of blood (small section in the top of my right lung was clear). With the correct, aggressive treatment, kidneys and lungs came good. My kidneys are now just a pinch above normal and I can wee like an elephant.

It's good that she is getting a heap of attention too. I and my parents (who are probably reading this) will prayer for a quick turnaround in Katie's condition.

[Grandma2Katie]

Thank you all. I just spoke with my daughter and son-in-law. Katie is being air lifted to Baptist Hospital in Winston-Salem where the specialists are waiting for her. Her kidney function has improved some and her dad said she is looking better. I will be able to visit her perhaps tomorrow because she will be only 40 minutes away. I am relieved that she will be in a hospital with doctor's who have treated this disease before.

Cindy

[andrew]

W00T!! Doin a happy dance That's good news both that she's responding to treatment and that she's going to be closer to you. That hospital looks like a good one too from my 'Googling'.

[Sangye]

Very good news!!! Please keep us posted. I've discovered a lot of hospitals have computers you can use, so maybe you can update us from there also.

(Hey, what's WOOT? I see it all the time, and think WHAT?)

[andrew]

(Hey, what's WOOT? I see it all the time, and think WHAT?)

It used to be 'cool, daddy-o', but now it's w00t. I say it to sound more modern and hip and oh so groovy yeah baby.

Urban Dictionary: w00t

[Grandma2Katie]

News is worth at least two woots! So, Woot, Woot!! :-D Lastest news, more procedures tomorrow. They are going to do a kidney biopsy and filter the kidneys. Sorry, I don't know the correct term but it is similar to dialysis. There is blood in the lungs but she is breathing on her own and they have her on oxygen. The prednisone was started this morning. She was sleeping when I spoke with Laura a little while ago so all seems well for the night.

Thank you all for getting a frantic and frightened Grandmother through the longest day of my life. BTW, Sangye, the Vasculitis Foundation called me today and offered any help we might need. Thank you for the suggestion.

Blessings to all,

Cindy