Home from Hospital

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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/26/2008 11:27 AM (GMT -7)   
I just got home after 11 days in the hospital.  I thought I was going in just to have some fluid removed and wound up having surgery to have dialysis fistula placed, a temporary dialysis port and a femoral/arterial line placed.  I then went in to an adrenal/Addisonian crisis.  My blood pressure went to 50/20.  They figured out that I needed IV steroids and turned things around.  I did start dialysis in the hospital and will continue tomorrow at the clinic;  and every Tues. Thurs. Sat. thereafter.  So much has happened.  I am so tired now.  I am about to crash for a while.  I will update and read threads more later.  Love you all, Judy
 
P.s-  The day of my surgery my grandmother (81) was diagnosed with cancer!  Please pray for her. (Odell Mason)

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/26/2008 11:40 AM (GMT -7)   
I am so sorry about your grandmother. I would be devistated if anything happened to my grandma. I am glad you are home and doing somewhat better though. Get as well as possible as soon as possible. I will keep your grandmother in my thoughts.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/26/2008 3:04 PM (GMT -7)   
Oh Judy!!  Oh my goodness, my friend ((((((((((((((prayers))))))))))))))))).  What a time you've had.  I'm so sorry.  did the adrenal crisis happen during the surgery or afterwards?  Did you stay conscious?  Thank the Lord for steroids....  We hate them, but they save our lives.
 
I'm so glad you're home.  What kind of recover time do you need?  Do you have help?  Please keep us posted okay. I'm praying for you right now.
 
Prayers for your grandmother as well Judy.  What a time you're having.... 
 
Love you lots,
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/26/2008 6:09 PM (GMT -7)   
((((((((((((((Judy))))))))))))))) You've been on my mind ever since you said you would probably be going into the hospital. I'm worried about you - it sounds like you are really flaring pretty badly. You must have been really sick for the docs to have kept you in the hospital so long. I knew you had some serious kidney issues, but didn't know you were needing dialysis. I'm also really sorry to hear about your grandmother. You are both in my prayers. Love and hugs. Please take care of yourself.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/26/2008 6:43 PM (GMT -7)   
Everything happened pretty fast. I went in and they discovered I had congestive heart failure. I lost 35 pounds in the first four days. Then my kidneys just completely shut down. My vein are so horrible they put the femoral line in while I was awake and then put me to sleep for the fistula and the temporary double lumen cath in my left chest wall.

The adrenal crisis happened after the surgery (immediately). It was horrible. My blood pressure was soooo low for two days. They thought I was having a massive heart attack. I did lose conciousness twice. It felt like someone slowed turned my lights out. I suddenly couldn't hear or see and then my brain felt real fuzzy and I went out. Steroids are truly amazing! They started giving me iv steroids and within minutes my pressure and heart rate started coming up.

They were seconds from coding me when my doc figured it out! God has been truly merciful to me. The dialysis was a surprise. I knew it was eventually coming, but not this soon. I really thought I was just going in for a couple of days and geting some fluid off.

They are having to do the fistula surgery in two parts. So, I have to go back in one month for the second half. They will pre-dose me with extra steroids this time!

I feel a little traumatized, but i'll adjust. I go to dialysis tomorrow.

My family is so insistent that I get a transplant, but i'm just not feeling like that's what I want to do right now. Please pray for us. We've got so much going on.

Sorry this is so long. I've had you guys on my mind the whole time. I appreciate your support and care. I pray each one of you are okay.
Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/26/2008 7:53 PM (GMT -7)   
Oh Judy.... This is not good.  I am so thankful that you came through it okay, but you have some serious stuff going on now.  I will definitely be praying for you and your family. 
 
I'm just so glad you're home.....
 
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/26/2008 9:18 PM (GMT -7)   
(((((((((( Judy ))))))))))))


AHHHHHHHHH!!! SO much all at once!! It was a true domino affect !! *phewwwwww* I hope they've stopped the tailspin. I bet your ooooughie is ouchy with the fistula and repair blush I hope it isn't too awful for you. Keep us posted sis!!

Prayers, hugs, 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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/26/2008 10:52 PM (GMT -7)   

OMG! I wish you would have been able to let someone know so we could have been keeping up on how you were doing. All though I'm sure we would have all been horrified every step of the way. I can think of better ways to loose 35 lbs! Thank God they figured it out. Souns like you are in good hands. As for the transplant you should probably get some rest and then really think about it. It can take a long time to get listed and than to find a match it could be quite a wait.

I will keep you and your grandma in my prayers.

bless ya both

love ya carol


 
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 
 Did you ever know that your my hero?
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/27/2008 7:03 AM (GMT -7)   
Judy, you really amaze me at how you are handling all of this. You said you were a little traumatized...I would have been totally traumatized by all of that. You went through a lot of scary stuff. Thank goodness the docs figured out the adrenal failure and gave you IV steriods. You and your family continue to be in my prayers. Love and hugs being sent your way.

P.S. If you want to e-mail me maybe we can figure out a way to keep in touch if you end up in the hospital again. My e-mail address is in my profile.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/27/2008 8:03 AM (GMT -7)   
Judy,

Traumatized is a good word Judy. I think we're all a bit shellshocked at what you've endured over the past week and a half, and I, for one, feel bad that I didn't realize the extent of your kidney problems. I'm so sorry about your grandmother, and I hope that the stress of knowing she's ill doesn't hinder your recovery.

I hope you have someone to talk to, plus a good support group, as you struggle to deal with all of this. There are a lot of people here who care for you and we'll be praying for you. As your strength allows, let us know how you're doing. We're worried about you.

Hang in there,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intollerance.
prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/27/2008 7:36 PM (GMT -7)   
Just giving you a shout to see how you are doing.
praying for ya
carol
 
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 
 Did you ever know that your my hero?
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/28/2008 9:55 AM (GMT -7)   
I love each one of you and appreciate your help and support! Wish I could hug you. I went for my first dialysis out patient treatment yesterday. It's not that bad, just time consuming. The reality of my situation and my grandmothers kind of hit me last night (I was extremely tired) and I had a minor break down. (cry session) I felt bad, because the rest of my familly is facing alot also. I think i'll be okay. I just feel so utterly exhausted! Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/28/2008 11:04 AM (GMT -7)   
Oh Judy,
 
It's okay to let those taps open and just let it all out.  Traumatized is a very good description of how you feel when your body is attacked to such an extent.  I'm still dealing with my own nightmares and flashbacks from over a year ago when I was in the hospital.  I know what you're dealing with, sis.  I hope this weekend can bring you the rest you need.
 
I'm sorry about your grandma Judy.  I want you to know I've been praying for you all, every day.  Love you!
 
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/28/2008 4:01 PM (GMT -7)   
Thank you so much. My heart feels like it is breakin into a million pieces right now. I'm so, so tired. I need to get myself together. Judy

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 9/28/2008 4:07 PM (GMT -7)   
(((Judy and your Grandma)))
 
I'm glad you are home from the hospital. Good luck to your Grandma!!
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

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