Butterflake aka Donna

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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/15/2011 4:45 PM (GMT -6)   
Hi folks,

Donna is a long-time Lupus Forum Member, and she has been in the hospital a couple of weeks now. She developed an ulcer right where the stomach dumps into the small intestine, and somehow during the post-surgery period she contacted pneumonia which has transformed into Acute Respiratory Distress Syndrome .

She is currently sedated with a endotracheal tube. Please keep her in mind, this can become a life-threatening situation very quickly.

Thanks,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 2/15/2011 7:29 PM (GMT -6)   
Thank you Lynn for updating us on Donna! She will deffinatly be on my mind over the next few days! Please keep us updated when you find out more information!!!
Amy
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 2/15/2011 11:24 PM (GMT -6)   
oh wow lynn thanks for keeping us posted.. i will be praying for her thats for sure.. keep us posted..

amy

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 2/16/2011 12:21 AM (GMT -6)   
lynnwood,

Next time you're in touch with Butterflake, let her know that I've been keeping her close in my thoughts and in my heart. I just happened to pop in and see this post tonight...so glad you knew about her. I often wonder about lots of the other "old timers". Hope you are doing well.
Take good care,

emmie

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 2/16/2011 9:04 AM (GMT -6)   
Thanks Lynnwood for letting us know.  I definintely will be keeping her in my thoughts and prayers that she is able to quickly recover from this. 

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/17/2011 11:00 AM (GMT -6)   
Sending prayers of hope to  Butterflake.  I truly wish her a full recovery.
 
Kindly,
Kitt

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 2/17/2011 11:19 AM (GMT -6)   
thanks and I will keep her in my prayers...

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/18/2011 3:46 PM (GMT -6)   
I have just learned that our member, Redrose77, died Dec 12 from complications related to her lap band surgery. I have no further information and will let you know if I find any.

I just checked in on Butterflake (Donna) and she is still sedated & on the ventilator. However, they have been able to decrease the amount of oxygen - that's what happens as you are slowly weaned from the ventilator. So she is in slightly better shape than earlier in the week.

Please, please,please, no matter WHAT the doctors say -- DO NOT HAVE THIS SURGERY DONE - with our illnesses the risk is very much NOT worth it.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 2/18/2011 6:06 PM (GMT -6)   
yes i have seen this with lupus patients... its just not worth it do it the hard way.. my mom and sister both had this done neither one has lupus but its a rough recovery
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/18/2011 9:16 PM (GMT -6)   
Praying for Donna and her recovery and for Redrose family..... how devastating it must be to her family.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Atenolol, Prednisone, Levoxyl, Folic Acid, Vit D and Talwin (as needed for pain).

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 2/19/2011 12:23 PM (GMT -6)   
Thank you for the news, Lynn. So very sorry about Redrose... And guarded hope that Butterflake is turning a corner.

emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 2/23/2011 4:39 PM (GMT -6)   
Thank you Lynnwood for sharing that Donna is making progress, I hope she is still on the recovery path.  I will continue to keep her in my thoughts and prayers.
Dx: IBS, Diverticulosis, Idiopathic Acute Colitis, SLE, Sjogren's, Localized Scleroderma, Raynauds
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Topamax 100mg/day, Lodine 500mg/day, Protonix 40mg/day Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/26/2011 12:36 PM (GMT -6)   
I just talked with Tim, Donna's SO. It seems to still be touch and go with Donna - Monday evening they told him they didn't think she'd make it thru the night. But she did and is improving a little - enough so that yesterday they put in a trach tube. Donna is still on the respirator and sedated.

Please keep her in your thoughts.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 2/26/2011 12:41 PM (GMT -6)   
thanks for the update lynnwood... i pray she pulls through
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/9/2011 2:48 PM (GMT -6)   
I've been a little afraid to call and ask about Donna, but went ahead and called today. After 3 weeks of sedation on the ventilator, she came off of it about a week ago and is slowly getting better. Tim says she can smile, but not talk and not squeeze his hand - the doctors tell him that the sedation & other meds just take a while to get out of the system and that she is doing well.

They are looking into getting her into a rehab center...after 3 weeks you loose a great deal of muscle strength and she will have to work her way back from being so weak. Hopefully Tim will remember to call me when she can communicate & I'll be able to update more. I let him know we are continuing to think of her & support her as best we can.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 3/9/2011 5:20 PM (GMT -6)   
I'm so glad to know this.. I have thought of her every day.... thanks for the info...

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/24/2011 5:16 PM (GMT -6)   
Wow, it's been a long time since I got an update on Donna. Not sure how time slipped away from me like that.

Donna has been moved to a rehab center, and was finally up & walking just a couple of days ago. I think today's high point was being able to make it to the bathroom on her own. Tim didn't see her today as he wasn't feeling well himself and they are being very precautionary against infections, etc. So far as we know now, only family is permitted to visit. Tim says she's talking, but seems very confused. He thinks that her main issue now is a huge Lupus flare, but also seems a little unsure about that.

Donna still needs our thoughts and prayers!
Thanks everyone,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 3/24/2011 6:29 PM (GMT -6)   
Thank you for the update!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 3/24/2011 8:56 PM (GMT -6)   
Thank you Lynnwood, will continue to keep Donna in my thoughts! I'm glad to hear that she is in rehab and that she can get out of bed and now talking, that is so great considering where she was the last time - sounds like progress.
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/25/2011 5:54 AM (GMT -6)   
I have been checking but scared to ask! Thank you for the update! She will continue to be in my prayers.
Amy
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril,Norvasc, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/29/2011 12:29 PM (GMT -6)   
Praying for her health and her family

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 3/29/2011 11:47 PM (GMT -6)   
Thanks, Lynnwood. What an uphill battle she has in front of her. My prayers and good thoughts are with her as well.

Hope you are doing well. I'm just waiting for this cr*ppy winter weather to turn into the spring it's supposed to be! No, it's not making me crabby or anything! Had a few too many infections this winter so I am more than ready for warmer weather. But not toooo warm, because then I'm hiding out from the sun. Hmmm...Picky, picky, picky. And I really don't mean to be. None of us do, it's just the nature of the beast.
Take care all. And keep cheering each other on!

emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/5/2011 4:58 PM (GMT -6)   
Good News!

Donna has been talking for about a week now, and was able to call me this afternoon. She has a LOT of rehab in store - everything from speech rehab to writing to walking, etc. Now that the lung emergency has passed they are trying to find a surgeon who will deal with the constriction in her small intestine.

Donna is in good spirits and is able to see visitors at last! I hope to make it over there before the week is out!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/6/2011 10:03 AM (GMT -6)   
Wonderful Lynnwood! Thank you so much for giving us this great news! I'm sure Donna will be so happy to see you, please be sure to give her our love and wishes!!
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/25/2011 2:49 PM (GMT -6)   
I talked to Donna a few minutes ago. She is at home now, and is receiving daily physical therapy and being fed thru a tube. Today was the first time she navigated the stairs on her feet since the end of January. She is seeing daily improvement, but they won't even consider doing surgery to correct the blockage issue until after she is *much* stronger.

Donna is very weak from being on the ventilator (respirator?) in an sedated state for almost 2 months, but she is very optimistic and is able to see daily improvements in strength and function. And finally her infections and vulnerability have passed and she can see visitors!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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