Headed for oklahoma city in the morning

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/18/2009 11:22 PM (GMT -7)   
Hi everyone, well tomorrow is the first day of classes for a possible transplant. They are going to be six of us going. (my support group). I finally get to meet Patty Latty! yeah . It's hard to beleive we are only two hours apart and known each other for two years and never met. But I'm certainly looking forward to it. We are meeting for lunch before hand since the appt isn't until 1:30. That will give us 2 hours to go to a BUFFET and pig out! turn .
I'm sorry I havn't been around much. I am just so stresed out right now it's better I avoid people when ever possible. I feel like a pit bull on steroids half the time.
I give a shout tomorrow night if I'm not completely wiped out and let you know how it went.
wish me luck even though it's only the beginning.
love ya
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, and so fulfil the law of Christ.
Galatians 6:2 KJV

 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/19/2009 7:36 AM (GMT -7)   
(((((Carol))))) My thoughts and prayers are with you as you head off for your classes. I'm so glad you get to meet Pat - I wish I could be there too. I think it's so great that she can be there with you. Make sure you eat enough for me at the buffet too :)

I don't blame you for being stressed out - I would be a total basket case. I'm sure the whole thing will be exhausting, so make sure to get plenty of rest when you get back. Let us know how everything went when you are feeling up to it. Lots of love, prayers and hugs.
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

 

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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/19/2009 8:38 AM (GMT -7)   
(((( Carol )))) You and Pat have a great time, try to behave yourself..... on the other hand never mind, you two cut loose!!!! tongue

I pray you all have a safe trip there and back and that all goes well at your appt. Hang in there sis, Love ya ~
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, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/19/2009 5:19 PM (GMT -7)   

Hi all, well I'm home. Wow information overload! I learned alotand probably missed alot more than I learned. I got to meet Pat and she got to meet my family lol. Lucky Pat! She was great and I was so happy to finally meet her. There was one point I was ready to blow my top and she kept me down to a mild rant instead of a full blown one. Like they kept saying at the meeting. Transplants pre and post are very stressful. I gave the ok to do what erver has to be done to get things rolling. Surprsingly they only have a waiting list of about 31/2 months! Wow. Who ever heard of such a thing. That of course is if you get on the list. I am hopful but cautious. There are still a lot of unanswered questions that can only be answered by the dr. So anyway they should be starting my appts. by the end of the month and we will see how it goes.

Thanks everyone 1 tired puppy here.

love ya

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

 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/19/2009 5:57 PM (GMT -7)   
It was great meeting you in person Carol! As I told you, I would have known you in a crowd. They did give you a lot of information, but a transplant is a big deal. I was real impressed with what a huge team they have, and it was obvious that those nurses know what they're doing. I especially loved the post-op nurse & know she'll try to keep you in line, but she'll have to work overtime to do any good with you.

I'll bet you really are tired tonight. With four hours on the road and the long meeting, that was quite a lot. Get some rest and let us know how you feel about all this tomorrow after you've had a good night's sleep and time to process everything you heard today.

Again, I just loved meeting you! Hope to see lots of you when you get your transplant.

Love,

Pat

P.S. I now need a lung transplant myself, having sat for close to 2 hours next to the sweet old lady who wore volumes of powerful cheap perfume. No wonder her poor hubby needs a transplant. You owe me one.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Post Edited (PattyLatty) : 1/19/2009 7:33:08 PM (GMT-7)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/19/2009 8:41 PM (GMT -7)   
Hi Carol & Pat,

So glad to hear the meeting went well and you all didn't get in too much trouble! I hope somebody was taking notes for you guys, I can just see you too probably sitting there giggling about the poor little old lady's perfume!

Get some rest, look forward to hearing about the meeting when you all are rested!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/20/2009 4:30 PM (GMT -7)   
Carol I hope that while I'm writing this you're getting some rest. I'm so happy to hear the transplant list is only 3 1/2 months! You're in my prayers Sweetie. Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS 
 CellCept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin,
actonel, tylenol arthritis, neurontin, phenegren,
flexeril, multi vit, C, flaxseed oil, acupuncture    Welcome to lupus where the strange is ordinary and nothing is normal :Donna
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/20/2009 5:16 PM (GMT -7)   
Carol called today to tell me that she has already gotten a call from the transplant team advising her that they would be sending out a 'schedule of events' right away. I have to say, I was very impressed with the presentation and the team. And of Carol in person too!
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/21/2009 10:55 AM (GMT -7)   
Hi everyone, thank you all for your response. Donna, thank you so much for your prayers keep them coming please. I'm trying to keep possitive. I ust pray this isn't lupus or scleraderma in my lungs. Otherwise I might not get a transplant. With a 1:2560 ana somthing is going on somewhere. and a nucleolar pattern screams of scleroderma. Ok i'm nt gonna think about that anymore. (I hope). It doesn't do any good to be negative.
Mel, Were we supposed to take notes? lol. All I remember is 20.000 for the work up. 350 thousand for the transplant 45 thousand for surgeons 15 to 20 meds for life at 3000.00 a month. and post transplant is 40 to 60.000 per year.
They recomend if you get on the list to have find raising for whatever the insurance doesn't pay and to have a blood drive. Like I said A lot of information!
Hippi, love ya, bo we havn't talked much lately one or the other has been sick. How are you feeling? I have been worried about ya. You have a tendency to over do it. Thank you for your prayers and support I know you are alway there for me.
Stacie, actually Pat was the wild woman. I was quiet and reserved. We plan on getting together again when I go down there and have lunch at the cafeteria. We can blow spit balls accrossed the room. LOL.
Pat??????? what do you mean you ould have known me anywhere? Do I look like I sound? I'm the fat one that wonders around with a ? mark over my head lol. I am going to wear somthing really flashy next time so I'll look cool in your car. You guys should see her car! Oh yeah next time I buy lunch. How's the dollar menu at mc donalds sound lol. Yes you are right. I do owe ya. That woman took a bath in that stuff. Five more minutes I would have been an inpatient!
Anyway I'll keep ya all up to date as things go along. thanks again everyone
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

 
 


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 1/21/2009 3:43 PM (GMT -7)   
Carol & Patty, you have to let me know next time you guys meet up.  I'd love to meet both of you.  I'm only about 20 miles from OKC.....and I don't mind cafeteria food. tongue
Jeannie 
RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin 1500mg (PCOS); Loestrin BCPs (Endo); Imuran 75mgs(RA); Metanx 5mg (RA); Humira (RA); Protonix (GERD)


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/21/2009 3:51 PM (GMT -7)   
LOL Carol, I can't imagine you being quiet and reserved, lol! I wish I lived closer and we could all sit and blow spit balls across the room!!! (((( Carol )))) I'm glad you're in good spirits, keep it up. You continue to be in my thoughts and prayers. Love ya
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, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/22/2009 11:11 AM (GMT -7)   
Jeannie, that will be cool! the more the marrier. But Stacie isn't allowed. She'll get us kicked out LOL . It seems like we got lots of okies around here. Anyone else want to go? Jeanie I'll be the 1 with oxygen and Pat will be the one with the horns protuding from her head!
thanks ladies love ya
carol (the 1 with the halo)
 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

 
 


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 1/22/2009 2:40 PM (GMT -7)   
smilewinkgrin  Got it.  I'll be the one in the tshirt that says "Carol's Groupie".
Take care and I'm totally serious, I would love to meet both of you.
Jeannie 
RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin 1500mg (PCOS); Loestrin BCPs (Endo); Imuran 75mgs(RA); Metanx 5mg (RA); Humira (RA); Protonix (GERD)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/23/2009 9:55 AM (GMT -7)   
When Carol comes down for her transplant she's going to need a large troupe of groupies!
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/23/2009 10:01 AM (GMT -7)   
Carol and a halo.... hmmmmmm not so sure about that ,LOL!
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, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/23/2009 11:25 AM (GMT -7)   

I just want to say thank you guys for helping keep things light. I need that right now more than anything. Yes Good willing I get on this list the more people the better. If you don't have a good support team they won't even consider you for a transplant. Ijust keep praying I don't have and autoimmune disease in my lungs. So please keep the prayers and best wishes coming.

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

 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/23/2009 2:22 PM (GMT -7)   
We're praying for you Carol. You can bet on that. But how can we be around you and not keep things light.

Stacie, believe me, there was NO halo anywhere in sight on Monday.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/25/2009 9:34 PM (GMT -7)   
Carol--
So glad you're doing so well and got to meet Patty and have as much fun as possible in the class! I'm just so happy for you and just know things are going to work out for you, you are so strong.

I've been sick and weak and sleeping alot so not online much. Just still trying to get through the TB medicine, two more refills to go, one refill due next week. So the end is near, I keep telling myself.

Well, know I pray for you and wish you all the best and just have faith things are giong to turn out great for you.
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/26/2009 11:33 PM (GMT -7)   

Oh Marji, bless your heart. I'm sorry I havn't been much of a friend lately. I have been so preoccupied. You sound absolutely awful. What exactly is that stuff and what is it doing to ya? How much do you have to take? Is it helping? If you ever want to talk please let me know. You have my email addy. I'll be praying this time goes by quickly and you have thes med behind you.

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

 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/28/2009 4:29 PM (GMT -7)   
Carol ((((((hugs))))))))),
 
I've missed all this incredible news. I'm so glad it went well for you! Amen!  If you need references from us for the support team, just say the word! I'm sure all of us would put together a letter and mail it to you to send on!  Or you could tell the hospital team about HW!  Let them read everything!
 
Even though I've been away for a bit, I have kept you in my prayers and thought of you daily. Lots of love and encouragement my friend!!
 
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
 
Moderator for the Lupus and Fibromyalgia forums

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