Here for my daughter

**Om3** · 09-17-2009, 10:35 AM

My daughter became sick in August of 2007. She had gone to the emergency 7 times and they sent her home with drugs. On December 22 she went again, and they told her she had pneumonia. I met her there and stayed in the emerg with her overnight. She started coughing up blood and I kept taking it to the nurses station and they told me that they would show it to the Dr. To make a very long story short, Shannon my daughter who is 26 now was in the hospital for 6 months. I stayed with her and slept in a chair, and the Dr. said if I wasn't there she probably wouldn't be here either. Both her lungs were full of blood. I had to shout to the Dr. that I wanted her in ICU NOW, then they finally listened. She was put on a ventilator and put into an induced coma for 6 days on Christmas day of 2007. Her kidney's were also attacked. Right now her kidney function is only 17% and she will be going on pertinial dialysis on Oct. 7.

My main concern is trying to find a drug besides chyclophosmamide to help her fight the Wegeners. It makes her so sick that she just keeps throwing up. She also went from 135 lbs up to 240 lbs from the steriods while in the hospital. She now is back to 138 but her poor body is covered with stretch marks.

I feel so bad for her and all the people who have to suffer from this terrible disease. If you were diagnosed early, you are one of the lucky ones.

My thoughts about Wegeners is that it does happen in younger people but they just think they have a cold, or did something to make their joints hurt.

I would like to see more Dr's made aware of Wegeners so it could be diagnosed earlier.

Good luck to everyone, be positive, and enjoy life everyday.

Om

**Maestra** · 09-17-2009, 11:08 AM

How is she doing today? Mom's are amazing supports, she is lucky to have you.

I agree more doctors need to know.

**Sangye** · 09-17-2009, 11:42 AM

Hi Om,
I'm glad you found our group. We've just had a huge number of new members under the age of 30 lately--most are under 25 even.

You get Mom of the Year for getting her into the ICU like that! Way to go!

You have to get her to a Wegs specialist. They're the only ones skilled enough to know how to handle her treatment, and to use other drugs besides ctx if possible. She shouldn't be throwing up the chemo-- that should be easy to stop. I couldn't take 150 mg all at once as my doc first instructed-- tore up my stomach terribly. So now I split it into 3 doses throughout the day and don't have stomach problems at all. It doesn't matter to him, he said, as long as it all gets in during the day.

Where do you live?

**Sangye** · 09-17-2009, 11:45 AM

Hey, that last one was my 1,000th post on this forum! Do I get a prize? Or maybe I should get a "time-out" instead, since I obviously can't stop talking!

**RCOSSIO** · 09-17-2009, 11:52 AM

Sangye...your advice is always welcomed whether is 1000 or one million....if not all u get is this crazy Cuban from SO FLA talking...

**RCOSSIO** · 09-17-2009, 11:56 AM

...and Om sorry to hear about your daughter...fortunately for me as soon as I arrive at the hospital that Sunday a pulmonary doctor suspected Wegeners and by Tuesday after the Biopsy it was confirmed by the Rheumy...he calls it a textbook case" quick disgnosis. However, I did experience lethargy and pains 3 week prior to the diagnosis. The coughing of blood that Sunday was the key indicator to get to hospital QUICK!!!!!

Hoping for your daughters good health.