I go back to oklahoma city tomorrow

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/8/2009 4:51 PM (GMT -7)   
Hi all well I wanted to give you an update. I have been doing my 3 days a week of physical/pulm. rehab. Tomorrow I have an appt for the first time with the surgeon. He is not the one that makes the decision as to if I get the transplant or not but he is the one that reads all the rest of the drs reports and makes his own decision.
I have to admit I'm scared. Even though it could be quite a while before it happens but the thought of the surgery and being on the ventilator and everything that can happen is starting to eat at me. I'm doing things like making sure all my finances are in order. All those things that a responsible person does that they don't even want  to think about. They still havn't said anything about the Lupus they took me off the steroids but kept me on the plaquenil. I still have 5 or 6 ore drs to see but I guess they usually send you to the surgeon after you have your heart cath.
Anyway I just wanted to ask for prayers my appt is at 10:15 in the morning.
love ya guys
carol
 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, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/8/2009 5:12 PM (GMT -7)   
you will be in my thoughts and prayers.
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, Sj√∂gren's, damaged periphrial nerves 2007, exema
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, cozar


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/8/2009 7:56 PM (GMT -7)   
All the best tomorrow, Carol - I will be keeping you in my prayers. Think how far you've come!
Blessings and a hug!
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/9/2009 9:17 AM (GMT -7)   
Carol,

Call me! I'm anxious to know what the doctor had to say and whether or not you felt comfortable with him. My hubby and I are both home with a touch of stomach flu or I would have been there with you. Hope all went well.

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

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/9/2009 2:23 PM (GMT -7)   

Hi Pat Lucy and redrose, I just wanted thank you for your kindness. I got through the surgeon ok. He was a nice man straight forward shoot from the hip kind of guy. Wish I am glad about. He said I need to lose weight which I already knew. I told him I had already started on the treadmill. He was happy about that. He said I have a 5% chance of not making it thru surgery. I told him I'll take my chances. He also said 50% people with lung transplants make it to 5 years. He did say that since I am so young it might be possible that I can get another transplant if needed.

I have to have a carotid endarterectomy. He wants that done before anything else gets done. I was hoping we could bypass that one but he seems to want it done sooner then later.

Well I had a long day I'm gonna lay down

thanks again and pat thanks for the call and I hope you and hubby get better soon.

love ya all

 

 


 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, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


jojo711
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 6/9/2009 5:23 PM (GMT -7)   
hi okie, get some rest and i hope all else goes well! take care! love and hugs and prayers your way!!
 
joan
dx sle dec 2007, meds-calcium 1.25g 2xday-prednisone 20mg-plaquenil200m 2xday-pepcid 40mg-asprin 81mg-cellcept 500mg 2xday-tramadol 50mg as needed- ambien 10mg- lopressor 25mg 2xday- paxil-20mg


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/9/2009 7:05 PM (GMT -7)   
Hi Carol -

So glad everything went well with the surgeon - hope the next test goes ok as well.

I wish everyone a restful, restorative sleep tonight,
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/10/2009 7:19 AM (GMT -7)   

Hi Joan and Lynnwood, thanks for replying. Yes it all went well but I don't look forward to  having my neck cut open especially my corotid artery. I never heard of them doing it this way. I know they use the balloon and the stint or whatever but the surgeon didn't want to do it that way.

Mostly I wish they would give me my steroids back. I have to type with my two fingers because my joints hurt so bad. My thumbs are swollen and I can't raise my hands over my head. Well I have to get ready for my PT class.

thanks again

hugs


 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, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/12/2009 12:25 PM (GMT -7)   

Hi Carol:

I'm glad all went well with the surgeon about your transplant.  Sorry to hear about the neck surgery, I'd be scared too.  I've tried calling you a couple of times.  I know we've been playing phone tag for the past few days.

I'm sorry I've not been around to much.  I was totally wiped out from being at my dad's and then I had my first dose of remicade which has kicked my butt.  Then we had some bad news about Nikita and I'm trying to be a rock for my child and not give into hysterics myself.  My daughter was told that she may have MCTD and she also has Fibro at the young age of 16.  She's crawled into my bed and doesn't want to get up.  It's been trying this week she had final exams.  They didn't go to well.  So please forgive me for not being there as much as I'd like to.  I'm hoping things will settle down and I'll start to feel better and I'll have more energy for all the wonderful ppl here.

Carol you hang in there and know you're in my prayers.  I wish you the best and I love you too.  Take care and I hope you start to feel a bit better.

Hugs,

Barb


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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/12/2009 8:42 PM (GMT -7)   
Carol sorry to here about all this!! I haven't been on here latley. I'll be praying for you.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/15/2009 2:40 PM (GMT -7)   
Carol, You are in my thoughts and prayers. I'm hoping the neck surgery all goes well.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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