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Om3
09-17-2009, 09:35 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, 10:08 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, 10:42 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, 10:45 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! :D

RCOSSIO
09-17-2009, 10:52 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...:eek:

RCOSSIO
09-17-2009, 10:56 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.

Sangye
09-17-2009, 10:57 AM
You're a hilarious crazy Cuban. Some of the things you say make me laugh for days. Like the time I didn't know what that abbreviation meant....:D:D

RCOSSIO
09-17-2009, 12:51 PM
Yes...i remember..."milf"...oh gosh the memories.

jola57
09-18-2009, 02:14 PM
Sangye, all I can get you is a cookie, but one with a smiley face, and smarties for eyes, and frosting for hair and...:)

jola57
09-18-2009, 02:15 PM
Richard where did the time go?

Doug
09-18-2009, 02:33 PM
Richard- I had to Google "milf" to find out what it was. My face was like this::eek:. It's an interesting concept, but one I hope doesn't preoccupy our young boys too much! The difference between you and me is I pretended to know what it was until I could check it out on the internet!:D (P.S. Cuban is good! I love Cuban music and food and people, to the point I've ever known any, and they respect mothers!):)

jola57
09-18-2009, 02:43 PM
:oYou have me there, now I am embarrased - had to look:o Richard say it aint so and it means something else

Doug
09-18-2009, 02:47 PM
Yeah, you come to North American from Poland, an innocent lass, and you pick up this filth from the bad boys (and girls!), and the only thing that saves you is they still think you're nice in Poland! And that's all that counts!:D

M-atrons
I-nterested in
L-ayered
F-abrics

Now it does. End of crisis for us all!

jola57
09-18-2009, 03:09 PM
yes, that does it for me. Matrons indeed LOL

Sangye
09-18-2009, 11:47 PM
Doug and Jola, you both must have missed the posts a few months ago where we discussed this abbreviation. I had decided to refer to my Wegs using it, having NO idea what it really meant. Luce and Richard couldn't stop laughing and had to explain it to me. It still cracks me up to think I was so unaware!:D:D

Doug
09-19-2009, 12:55 PM
Doug and Jola, you both must have missed the posts a few months ago where we discussed this abbreviation. I had decided to refer to my Wegs using it, having NO idea what it really meant. Luce and Richard couldn't stop laughing and had to explain it to me. It still cracks me up to think I was so unaware!:D:D

I used to think I had one small spot of decency left in me! Until I looked up ~ gulp! ~ MILF! Layered Fabric indeed!

RCOSSIO
09-20-2009, 03:53 AM
Yes Sangye...I was LMFAO.....it was Classic. Anyway I inlcuded a link for all those who are Acroynmically Challenged...Is that a word?????? hmmmm....anyway here is the link NetLingo The Internet Dictionary (http://www.netlingo.com/)

good luck to all my BFF's

RCOSSIO
09-20-2009, 04:00 AM
Ok Jola and Doug need to speed up with the program here....you really have to read the post Sangye did when she refered to it.

Doug
09-20-2009, 07:02 AM
Except \for two transposed letters, a reasonably explained away typo, "acronymically" strikes me as a vey good word to explain the challenge some of us have! (Not to word, Jolanta! I can create nice versions for us to use, and Richard and Sangye can just go their way, L-ing their FAO!) Thanks for the link, Richard!:D

(Jolanta- I decided to humor our jokester friends and actually check out the link. What do you know, but I found a perfect acronym for you and me: AAAAA! See link below.)

http://www.netlingo.com/word/aaaaa.php

jola57
09-21-2009, 02:16 PM
Doug u r briliant:p

jola57
09-21-2009, 02:17 PM
By the way my youngest is out of the hospital it was food poisoning and he is now OK

Sangye
09-22-2009, 01:08 AM
Glad to hear that. Must have been a really bad bean.

RCOSSIO
09-22-2009, 11:26 PM
OMG!!!!!...need spell check..oh brother!!!