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aliconti 05-14-2009 06:49 AM

at wits end, no help, someone help!!
my name is ali, i am 35 years (young) lol and have had lupus since 96
run down of my past:
stroke in 99 (i have aps too)
kidney failure (class four lesion) in 07
cerebral hemorrage april 08 (six month hospital stay)
subdural hematomas in 09
new problem..(isnt there always a new problem with lupus?)

i have avascular necrosis of the right hip. probally between the million rounds of pulse steroids, but also saying because of something called "bone infarcts"
my hip has collapsed and that means another summer in the hospital. the pain is excrutiating. i could rip this hip out myself it is so bad.
has anyone had the same problem with the hip?
as a result of this, i have to start dialysis, and because of all my past troubles, they say i may not "make it" i am petrified.

any help would be appreciated. the bone infarcts and bleeds were caused by increasingly dropping platlates.

please help. anyone..are you out there? i still work, but how can i keep going like this??
some inspiration would be appreciated as well.

love to all,

sophie56 05-14-2009 04:42 PM

Re: at witts end, no help, someone help!!
You are in my prayers. Do you have family or friends that can help you emotionally?
Sophie 56

Angel MJ 05-16-2009 10:43 AM

Re: at witts end, no help, someone help!!
hi ali ... welcome to the board ... angelique 33 dx 2003
it is usually unfortunate circumstance that has us meet but then i believe that everthing has a reason.
so very sorry to hear you are having such a horrid, terribly awful time :(
dialysis can be scary but if it is going to offer you healing then i say GO FOR IT! ***hugs*** don't let anyone tell you what you will or wont make!
i'm finding my 30's most difficult so far - hormones go nuts, body goes nuts.
i read your post and was trying to find stuff re: lupus + hip replacements but not sure where i seen it ... sorry ... brain fog :o and i am scared to mis-quote anything. if i find it will post.

[email protected] ... out here ... most of the time!

Angel MJ 05-23-2009 10:07 AM

Re: at witts end, no help, someone help!!
hi ali ... hope you doing okay ... did u start dialysis yet? you are often in my thoughts. A

aliconti 05-24-2009 07:10 AM

Re: at witts end, no help, someone help!!
they have decided to not do dialysis. they say it may be "too much"
they are winging it. and yes, that is the word used. winging it..ookk?
my ins co has denied my pre op hospital stay to come off the coumadin, and want me out of the hospital three days after surgery..
girls, is this a sign or something? how am i going to ever walk in three days after a total hip replacement?
i am not doing it unless someone fixes this. i am scared, my husband is frustrated, and i dont have a good feeling.

will let you know what happens.


Angel MJ 05-24-2009 09:30 AM

Re: at witts end, no help, someone help!!
ali ... is it not up to the doctor how long you need to stay post-op? surely the med ins company cannot decide this ... can't you discuss this with your doctor!
man ... makes you want to pull your hair out hey! but then hairloss is already an issue ... frek!
hang in there!
what are the no-op options?

mindy1974 05-26-2009 05:34 AM

Re: at wits end, no help, someone help!!
its so scary but i can tell you that i have read so very many posts about people with problems like your and even worse, and they make it! they pull through. they beet the doctors wrong and there body heals. dont give up, dont stop hoping!

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