Barb is having a rough time

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/19/2008 10:07 PM (GMT -7)   
Well it's 11pm and I just got off the phone with Barb. Yes she is in hospital. She has fluid in her lungs and can't breath. They have her on oxygen. I know how scarey that can be. I wish I could take it from her since I'm used to it. Anyway I told her I'd call her in the morning. She has her cell phone with her and she can have calls where she is. She needs lots of encouragment so please don't forget about her.
ok I'm trying to get some sleep now
God Bless
carol
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2008 10:14 PM (GMT -7)   
Thanks again Carol . . .

((((((((((((((((((((( Barb )))))))))))))))))) Prayers for you sweet sis!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/19/2008 10:15 PM (GMT -7)   
Hi Carol,
 
Thank you for letting us know how Barb is doing.
 
Barb, we're praying for you and hope you are comfortable tonight and have a better day tomorrow.
 
Lots of love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


auntkay
Veteran Member


Date Joined Apr 2004
Total Posts : 1199
   Posted 11/20/2008 4:44 AM (GMT -7)   
Hi Carol,
Thanks for being such a good friend to Barb, and keeping us updated on her.I knew something was wrong last night when i didn't see her or hear from her. Barb bless your heart (((((hugs))))) i knew you were feeling very ill again . I'm glad you got Bill to take you to the hospital please know your always in my heart and prayers. Take it easy and i'm praying you feel better soon love you Barb!
Kay

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/20/2008 9:39 AM (GMT -7)   
(((Barb))) So sorry your suffering so much. You are in our thoughts and prayers! Love ya, Judy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 11/20/2008 11:51 AM (GMT -7)   
Barbara is really, really feeling poorly. Worse than her hospital visit last week.

It took them 25 sticks before they were able to get a bloodline in -- ended up with a pediatric sized needle on the back of her hand between ring & little fingers.

She's been running a fever 101-102, hot then wet and clammy. Worse in the am, which is odd. Breathing issues, pain issues, possibly UTI, but probably something else is going on that symptoms are being masked by the immuno-suppressants.

At least they got the line in and are able to give her nutrients and morphine. No idea how long she'll be in the hospital.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 12:21 PM (GMT -7)   
Oh man that is horrible. I hope she gets better soon. Its so awful to have to suffer like that!

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/20/2008 3:40 PM (GMT -7)   

Thanks Lynnwood, I just got off the phone with her. The dr. came in so I told her I would call later and see what he has to say. She said she does indeed have a uti. rolleyes . I guess about an hour ago one of the PA's came by to say ello and woke her up. She was completely soaked. So they had to change all her clothes and bedding. Of course itss much more difficult when you can't breath. They gave her iv salumdral (sp). which figured out to be 100mg. shakehead . She hadn't really expected to see the dr. come in so she was surprised when he showed up. I'm a little concerned about that. Hopfully they at least have some answers for her.

We were talking about how each of us should write a chapter in a book with a ficticious name and tell everyone about a battle with this crappy disease.Ya know life just ain't fair is it? anyway I imagine the dr/ is gone now so if anyone wants to give her a call I imagine she would appreciate it/ I need to run to the store before I do anything else.

well that's all folks!

love carol


Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/20/2008 4:29 PM (GMT -7)   
Carol, thank you for updating us on Barb and for being such a great friend to her!

((((( Barb )))))) you are in my thoughts and prayers. I pray you feel better and get to go home soon! Love ya
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/21/2008 8:51 AM (GMT -7)   
Barb just called and talked for a while. Her rheumy told her that she's in a mega flare and has been giving her iv prednisone -- 75mg every eight hours. That's over 200mg in a 24 hour period. They are worried that she has so much inflammation that her organs could be damaged if they can't control the inflammation. She's also having difficulty breathing when she walks. After a stroll through the ward her blood oxygen was 84. Pretty low. She didn't tell me how they plan to treat that, but she does have fluid in her lungs, which I suppose could be the cause.

She sounds pretty low. Her husband is worried because he sees her continuing to fail. The good news is that her cancer is not causing this.

So she needs lots and lots of prayers. I don't know how to get a card to her but we should put our heads together. I know that getting a batch of cards from her HW friends would do a lot to cheer her up. Any ideas?

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 11/21/2008 9:12 AM (GMT -7)   
I have her home address & can collect & send if ya'll want. Email me & I'll tell you how to send things to me.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 11/21/2008 9:18 AM (GMT -7)   
Hi Barb. All this sounds like more than any person could stand. I'm so sorry Sweetie. Like everyone else, I'm worried. I'm praying for you. I doubt you have much strength, but please try to fight this flare. We are all right here for you. You're such a dear person! Love you. Butterflake

Dx: SLE ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien, flexeril, multi vit, C, flaxseed oil, acupuncture    Donna
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 11/21/2008 12:21 PM (GMT -7)   
Barbara is at the National Naval Hospital in Bethesda, MY. Her phone number at the hospital is 301-295-0996. She does have a roommate, so make sure to call at reasonable hours and ask for Barb.

She said she's starting to get that prednisone "jumpy" feeling....I guess at the high doses she's on that would be unavoidable.

Email me if you want an address to get cards to Barbara.

Barbara & Everyone else who is suffering today --
Hang in there!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/21/2008 1:32 PM (GMT -7)   
Thanks Lynnwood, Carol and Patty . . . what a blessing you must be to Barbara!!

((((((((((( Barbara + Hubby + Nikita ))))))))))))

You have all been through SO much! I just wish you could all get a break. Praying for you and your family!!

Hugs, prayers, hot tea, and. . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/21/2008 4:11 PM (GMT -7)   
Barbara, we're praying for you and hope you're doing better.  We all miss you and know that when you're better we'll hear from you.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 11/21/2008 5:24 PM (GMT -7)   
Thanx for letting us know how Barb is doing. Let her know we are all thinking about her!!!

Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/22/2008 8:55 PM (GMT -7)   
Well I spoke to Barb a couple of times today. Yesterday she went for a walk around the hall and her o2 stats were down to 84!. That is not good. Today it was back up to 92 but that still isn't where it should be. It should be up to 98 99 100. She's on so many steroids of course her stats will go up but I'm concern about what happens when she gets out. Having low stats like that are not good for your heart. I was real busy tonight trying to make a bunch of mexican food for after church dinner. Some how I got nominated. Well it comes from living in arizona for 25 years. Anyway that's beside the point. I don't want to call because if she has a room mate in there I don't want to bother anyone. So if you heard anything please let me know.
thanks
hugs
carol


Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 
 

Post Edited (okie) : 11/22/2008 8:59:24 PM (GMT-7)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/22/2008 9:39 PM (GMT -7)   
(((((Barb))))) I keep you and your family,caretakers and health care workers and docs in my prayers so they make some kind of breakthrough here and get you well and home soon. For some reason, the past week or so has been extremely stressful for so many people and I hope things settle down. I miss you Barb and always think about you. Even though I couldn't meet you, my thoughts and prayers are always with you. My son got hit in the head with a hammer and is having some other serious problems and is in the hospital. His nervous system and brain are just degenerating, and he's only 20. I'm glad that there is some improvement and you are so strong and fight so hard. I wish I could do it for you and give you a break. Actually, I wish I could just make you well. I hope and pray the docs give you more help and get you back on track and actually fix a few things!

Thanks, Carol and Pat and Lynnwood and the Mexican dinner sounds good...
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/24/2008 12:56 PM (GMT -7)   
Hi All:

I just wanted to let you know that I'm home from another 6 days in the hospital. So therefore, I was in a total of 12 days this month. They've established that my oxygen levels drop when I get up and move around. It appears to be steroid induced myopathy and I'm darned if I do and darned if I don't.

Sigh this all is just really getting to be way to much anymore. Hope you all are doing better than me, and hopefully I'll be up to posting more in a few days.

Thanks for the hugs, blessings, etc.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


mrs mac
Regular Member


Date Joined Nov 2005
Total Posts : 163
   Posted 11/24/2008 1:33 PM (GMT -7)   
hi barb and aunt kay, been a while since i've been here, but back now!!!!

barb sorry to hear you've been in hospital again, hope you are ok??

Aunt Kay, how are things with you

hope to chat with you guys soon

Sandra xx

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/24/2008 2:55 PM (GMT -7)   
(((((((((((((( Barbara )))))))))))))

I hope you laugh 5 times this evening!! And sleep well tonight. So sorry things are so rough (still).

Hugs, prayers and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 11/28/2008 9:43 AM (GMT -7)   

Hey Barb,

Glad that you are out of hospital.  this is a good sign.  Hopefully you will be able to recuperate better at home.  I always do better at home.

many prayers to you this day, and to someone's son who got in the head with a hammer.  Many many prayers and hugs.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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