nessa
11-20-2011, 06:05 AM
~ my story~
i was diagnosed when i was 18 1/2 yrs old. i was getting horrible ear aches i was sick all the time and every doc that i went to see could not give me a reason why all this was happening to me. until one night where i couldnt take it any more i was throwing up blood i had a fever and i felt like i was literally dying. my mom called 911 and they took me to a near by hospital which the docs there told my mom you have a very sick child here. hearing that made me even more worried well the next day they took into to surgery where they put tubes in my ears and cleaned out my sinuses. i had to stay in the hospital 2 weeks until my results came in and there is when they told me i had wegeners. its was one of the worst days of mine and my moms life when they told us what it was and what it can do. i just remembered thinking my life is over. after that i began mtx and prednisone which i guess wasnt strong enough because i relapsed again after a month of being on it. so my doc switched me to cytoxan soon after that i discovered that i was pregnant so i had to stop all meds instead of the prednsione. my pregnancy went fairly well acutally and i gave birth to a healthy baby girl on oct. 7 2007 she weighted 4 15 oz which was small but they said it was due to the steriods. for two years aftter that i was in full remission. then in early 2010 i started getting sick again this time it hit worst then anybody could imagine i had to stay in the hospital for two months i had too get half of my right lung removed my hearing decreased so much i starting getting a saddled nose i was throwing up blood all this due to me relapsing. my doc ordered me to get rituxan chemotheraphy during my stay at the hospital for a month. which did wonders for me i felt like my old self again so now all though the damage on my nose in my ears and on my lungs have been done im feeling alot better... i just taking it day by day now, i see my rhemotologist at the end of this month so we will see what he says this time im just greatful to be alive and to have my daughter and my mom by my side cuz thats what keeps me hanging on.. =) nessa
i was diagnosed when i was 18 1/2 yrs old. i was getting horrible ear aches i was sick all the time and every doc that i went to see could not give me a reason why all this was happening to me. until one night where i couldnt take it any more i was throwing up blood i had a fever and i felt like i was literally dying. my mom called 911 and they took me to a near by hospital which the docs there told my mom you have a very sick child here. hearing that made me even more worried well the next day they took into to surgery where they put tubes in my ears and cleaned out my sinuses. i had to stay in the hospital 2 weeks until my results came in and there is when they told me i had wegeners. its was one of the worst days of mine and my moms life when they told us what it was and what it can do. i just remembered thinking my life is over. after that i began mtx and prednisone which i guess wasnt strong enough because i relapsed again after a month of being on it. so my doc switched me to cytoxan soon after that i discovered that i was pregnant so i had to stop all meds instead of the prednsione. my pregnancy went fairly well acutally and i gave birth to a healthy baby girl on oct. 7 2007 she weighted 4 15 oz which was small but they said it was due to the steriods. for two years aftter that i was in full remission. then in early 2010 i started getting sick again this time it hit worst then anybody could imagine i had to stay in the hospital for two months i had too get half of my right lung removed my hearing decreased so much i starting getting a saddled nose i was throwing up blood all this due to me relapsing. my doc ordered me to get rituxan chemotheraphy during my stay at the hospital for a month. which did wonders for me i felt like my old self again so now all though the damage on my nose in my ears and on my lungs have been done im feeling alot better... i just taking it day by day now, i see my rhemotologist at the end of this month so we will see what he says this time im just greatful to be alive and to have my daughter and my mom by my side cuz thats what keeps me hanging on.. =) nessa