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sumsum5587
08-06-2009, 12:49 PM
Hi Im Summer. Im 22 years old. I have 2 kids. My little boy will be 5 in Oct. and my little girl will be 2 in Sept... I have always been a heathy person up until about... well i guess its been a little over 1 year ago now.. i was laying on the bed one day and my ear kinda poped and started bleeding. It wasn't hurting just bleeding a little. well Me being a single mom i didn't have the money to just go see a doctor so i didn't i just let it go. well about a month later i started loosing my hearing a little.. and as time went on it started hurting. so i went to the ER. they said i had an ear infection, gave me some meds and sent me home. Well the meds didn't work and i kept loosing more hearing and kept hurting more and more. after about 3 or 4 trips to the ER and alot of meds that didn't help any..
i completly lost my hearing had to go to a ENT to have tubes put in so i could hear and they still told me it was just an ear infection.. i think i had the tubes put in around May of 2008 i think...lol

After that i was ok for a while... up until about Nov. or Dec. i started having sinus problems. which i have never had problems with before other than nosebleeds and i've had them all my life. well i couldn't afford to go to the doctor so i let it go on and on... until i couldn't stand it no more and my eyes swole up to where i could barly see and i hurt very bad.. so back to th ER.. they said it was a sinus infection this time, gave me some meds and sent me home... well the meds didn't work and i ended going back for the same thing jusst like i did with my ears 2 or 3 more times.. i was also hurting in my legs at night mostly.. and was tired all the time and i never felt good and i got dizzy alot.. then finaly on Feb. 20th i was getting ready for work and coughed up a little bit of blood and felt like i was going to pass out so i went to the ER AGAIN... This time they kept me. they did x-zays on my chest and said i had phumonia(spelling??) they put me on iv antibiotics.. then everything started going crazy my fever jumped to 105 my lungs were filling with blood and my kidneys were starting to fail and they had no idea what was going on so they put me in ICU. i had to on dialiasis for about a month and a half but im off now!! They also started giving me high doses of steriods to through iv at some point... and this is just a small hospital (Easley Hospital) Anyways After being there for 9 days they said that they were almost sure that it was WG but didn't have the Docs to tell me that there so they transfurred me to Greenville Memorial Hospital and i stayed there for a month and a half. they did a kidney biopsy. they wanted to do a lung biopsy but they said i was too weak and sick. they also ran the tube thing down into my lungs to see where they were bleeding from. they also did alot of blood test that i really didn't and still don't understand..lol.. they also had to give me blood.. 5 times now... they put me on cytoxin and pred in march. i got out of the hospital i guess the end of march or the beging of april. i went home and endend up back in the hospital in 2 weeks with phumonia again. i had to stay two weeks that time. then i went back home and about 2 or 3 weeks later i started having sesrurs... back to the ER... stayed 8 days i think 4 in ICU... WG WENT TO MY BRAIN!! so they sent me to the Cleveland Clinic back in june to run some test to make sure that that is what is wrong with my head.. and it is... and when i went there they changed my meds and said my steriods were too high and changed my cytoxin to meth. i've been on it for 5 weeks tomorrow. it makes me feel real bad. real bad. and the pred i taper 5 mg a week.. im down to 25mg starting tomorrow... my doc stopped my meth for two weeks cause my blood counts i start back tomorrow... they are testing me for luekemia .... i go to my remuy in the morning.

Cindy M
08-06-2009, 01:48 PM
I am so sorry to hear about all of your medical problems. I have learned that we really need to listen to our bodies and not take anything for granted. I sure hope you have alot of help with your two young children, this disease does not leave you with much energy and to have two small children, my heart goes out to you. I wish you all the best and my thoughts and prayers are with you. I have two teenage daughters and know the demands of a family, they have a hard time understanding this disease I can't imagine what your children are experiencing. Take care.

Jack
08-06-2009, 04:23 PM
Summer,
Sorry to hear your story, but it is all too familiar on these pages - lots of different problems, all put down to infections and treated individually rather than someone looking at the whole picture. One of the characteristics of Wegs is that there is no distinct pattern to its progress or the organs affected. This makes it difficult for the docs to tick the boxes and come up with a diagnosis.
There also seems to be a problem with lack of urgency and commitment with initial treatment. In my own case, I was treated the day after diagnosis with 1000mg (yes!) of Prednisolone, IV Cyclophosphamide and a course of Plasmapheresis. This must have wiped out most of my immune system, but made me symptom free within days. Still too late to stop the damage though. :(
Hope they soon get some of your problems sorted and you start to improve. There can be a good life with Wegener's!

Sangye
08-06-2009, 11:28 PM
Hi Summer,
I'm sorry for what you've gone through and very glad you wound up at CC. You can trust what they tell you, at least.

Wegs in the brain is always a possibility, but is not very common. Did they change to meth and lower the pred because of your blood counts being too low, or because they have the Wegs better under control?

I encourage you to learn everything you can about this disease, your drugs, tests, etc... (I posted a list of ways to help you do this. I think Andrew made it a sticky or something?) It's important for you to know what's going on with your body and why they're making the decisions they are. If you get stuck or overwhelmed with the medical lingo, many of us on here can help you decipher it. Take good care of yourself. :)

sumsum5587
08-07-2009, 03:49 PM
i think they changed it cause of my blood counts...

capabayan
08-11-2009, 12:57 AM
Summer - I left a msg on your wall, but in case you don't see it... I am also from the Upstate, though closer to Spartanburg (but we still make it into G'ville occasionally). I have had WG for about 3 yrs now, about 2.5 since I was officially diagnosed. If you need any advice on finding good doctors, I have some really great ones I can recommend. Or if you just want to chat or whatever... let me know :)

jola57
08-11-2009, 02:59 AM
Summer, it seems you have been hit hard by our BFF. I am sorry it has been such a trial for you and you are a very brave girl. Your children I hope are in good hands while all this is going on. I truly hope you go into a good and long remission soon.
Here's hoping

sumsum5587
08-11-2009, 08:23 AM
thank you so much!! yall are so nice on here! My little boy Elijah stays with me and i stay with my mom now so she can help me out.. and my little girl Natalie stays with her dad most of the time now... but hopefuly ill be well soon and she can come home... i see her whenever i feel good but its stil not the same... i still miss her

sumsum5587
08-11-2009, 08:26 AM
cool...yea thats not far at all... maybe we can meet somewhere someday..?