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UPDATE.....major lupus flare......near death

Started by season, January 10, 2012, 10:15:11 PM

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season

January 10, 2012, 10:15:11 PM
It is with sadness and a heavy heart that we were told that my niece would die shortly from this lupus flare.

Her body has swollen so much that she covers the whole bed. It is so hard to look at her swollen body and not see the beautiful person that I know. It rips my heart to pieces to hear her children beg her to please wake up.........but she doesnt hear them.

She has encephalitis. Her brain is swollen and MRI shows no brain activity.

She has been having seizures, blood clots, problems with bowels and kidneys.

Her long beautiful hair is now falling out in clumps from the chemo.

So many meds have been given to her in a last ditch effort to save her.

Her doctor said that he would remove the ventilator soon. We don't want to let go but it is so hard to look at her.
We were told that she has the rarest form of Lupus and that no one has ever lived long with it after being in a major flare. She has known that she had Lupus for around 2 years but her doctor now says that she wasn't under good care for those 2 years.

My heart is sad. She was always a happy person.

BonusMom

#1
January 10, 2012, 10:37:39 PM Last Edit: January 11, 2012, 06:50:55 AM by BonusMom
I'm so sorry to hear of your niece's condition.  It saddens me greatly that her doctors didn't have this young lady on meds to control her symptoms/disease. 

genko_b

#2
January 10, 2012, 11:21:29 PM
Dear Season:

So sorry to hear of your niece's suffering. A very painful passing for everyone involved. My thoughts and prayers are with you all.

Take care,

Genko

stephL

#3
January 11, 2012, 12:33:49 AM
I'm really sorry Season!  :(
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

smallfry

#4
January 11, 2012, 03:11:18 AM
Dear Season
I am so very sorry to hear of your niece's condition, My thought are with you and your family during this very difficult time.

Cheryl

Jenny

#5
January 11, 2012, 04:35:13 AM
I'm so sorry for you and your family. This is the hardest time of all!
65 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
Maloxicam, Lisinopril, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015 & 2017 Need knee replaced.
4 hand surgeries

mshistory

#6
January 11, 2012, 05:42:13 AM
I am so sorry. I'm in tears for her poor children  :'( Many prayers for your family during this difficult time.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

Jellyb

#7
January 11, 2012, 05:45:08 AM
Oh Season, my heart breaks hearing this. I am so very sorry.....

LizPetillo

#8
January 11, 2012, 06:02:40 AM
You will be in my thoughts ...

(I really HATE these diseases!   >:(  )

A66eyroad

#9
January 11, 2012, 06:13:00 AM
Season, my heart is broken for you and your family. Thank you for sharing with us, and for giving us the opportunity to pray with and for you.

Holding you in the light.

A66ey
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

gold55

#10
January 11, 2012, 06:17:22 AM
My prayers are with you and your family.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

vacumme83

#11
January 11, 2012, 06:34:39 AM
I am so sorry. My heart goes out to you and your family!

Iris

#12
January 11, 2012, 06:58:02 AM
I'm sorry, Season.. I'll be praying for you and your family..
Sjogren's Syndrome, fibromyalgia, essential tremor, RLS, degenerative disc disease, gastritis, Ischemic colitis, heart disease.
Lisinopril, Pantoprazole, Ranitidine, Plavix, Diltiazem, Simvastatin, Magnesium, Aspirin, pain meds, serum tears, fish oil

Cheryl

#13
January 11, 2012, 07:08:32 AM
My thoughts and prayers are with you, Season.  Your niece would want you to take care of yourself through this.  Don't forget to eat, rest, etc.
Cheryl
Chat co-host on Thursdays at 8:00 Eastern time

shevonne

#14
January 11, 2012, 07:09:00 AM
My thoughts and prayers are with you!
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