update on transplant center

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/18/2008 9:52 PM (GMT -7)   
Hi everyone, well I have my first appt with my team on jan 19th. down in oklahoma city. Hey Patty you can go if you you'd like! they want people that will support me to be there.
It's going to be a class that everyone has to go to because so many go there and have no idea what they are getting into. Just because I got this far by no means means that I will be able to get listed. It's just the first step. I got my SIL a month gift certificate for the spa/tanning bed bowflex and all that is available. So I was thinking of getting myself the thing. So I can strengthen up my lungs. actually it's two gift certificates for 50 dollars a month. It has a special lock on it and they give you a number so you can pop the door open and go in even if you are alone. Which is good with some of the schedules around here.
My case worker was here today. She did one of those memory tests on me. and I flunked it but she didn't write it on the paper. Well I think I'm gonna go to bed. I have a lot to try to do tomorrow.
talk to you all soon
love/prayers
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/19/2008 6:20 AM (GMT -7)   
I forgot to mention that my balance has been  off amd they are getting me a
walker with wheels and a chair seat on it. That way when I get winded I can set down. I'm gonna hate it! 
I'm feeling really really tired today.
love
 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/19/2008 7:16 AM (GMT -7)   
Carol, I'm glad things are getting underway for the transplant, but I can only imagine all the emotions you must be feeling about all of this. I wish I lived closer so I could go with you and be there for you.

I know you are going to hate the walker, but it sounds like it's going to help. I know the kind you are talking about. One of my relatives has one and the seat on it is really nice.

You are in my prayers.
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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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 12/19/2008 7:36 AM (GMT -7)   
Hey Carol. I'm glad you're going to the transplant class. At the very least it means they are keeping you in their system which is great. As for the rolling walker, I love mine. The wheels run so smoothly it's a breeze to use and I never have to worry about falling in public. Also if I've been walking a while and get fatigued the seat is right there. You will be surprised at how useful it is in so many situations, such as standing in line. I will say that when I'm going to be walking a short distance I use my cane, but I've also fallen flat on my face in public with the cane. As much as I fall I suppose I should use the rolling walker at home, but I could only use it downstairs. Give it a chance. I think you'll like it! 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
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/19/2008 7:54 AM (GMT -7)   
Hi Carol,
 
Wow, this is the first step. I'm glad you have this opportunity too. You'll learn so much!  Your brain was probably working all night thinking about this, which is why you're tired this morning! I hope you have a good day today. I"m praying for you too!
 
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/19/2008 8:15 AM (GMT -7)   
Carol,

I too am glad they still have you in the running for a transplant, and yes, I'd love to go with you. Just let me know the details. It's at Baptist?

I'll bet you end up loving your walker. When you're out it will be so much easier for you & will give you a place to store your handbag and packages. Plus, having somewhere to sit down when you're waiting in line somewhere sounds like heaven. I hope you don't hate it!

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/19/2008 12:16 PM (GMT -7)   

Patty here's the place

http://www.integris-health.com/INTEGRIS/en-US/

that would be cool to meet ya in person!


 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/19/2008 12:19 PM (GMT -7)   
I'll get back to evveryone when I get home I'm on my way out to find a spiral cut ham that doesn't cost an arm and a leg. Thanks for all the info on the walker. I guess putting my oxygen tank on it would be good to. but I am really tired of all this. I mean if I have to lug al this stuff around I think the insurance company should spring for a really good looking guy to help me.!
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 12/19/2008 4:06 PM (GMT -7)   
ROFL!!

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 12/19/2008 5:10 PM (GMT -7)   
Carol, I looked at the website for Baptist that you linked and found the checklist for potential lung transplant patients. Wow. By the time they're through with you you'll know everything you ever wanted to know about your body and anything that could possibly be going on with you! (By the way, what is the dx from your pulmonologist? Do you have COPD or something else?) And.......they're going to make sure you aren't pregnant!
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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 12/20/2008 7:04 PM (GMT -7)   
Carol,
So glad things are moving forward. The rolling walkers with the seat are great, but can be hard to lift if you have back problems, you are right about the need for a servant! Still, I was so glad I had mine these last two weeks. And sometimes sitting on it rather than in a chair is more comfortable for me because it is higher up and easierfor me to get up and off. I've been stuck in bed, barely able to walk due to my back. No one is doing anything except I'm taking gobs of hydrocodone that obviouslyisn't working. I think I will have to have more surgery. Right now, I'm ready to do it myself. They are sending me to physical therapy and I can't walk. Its stupid. I hurt so so bad. I asked to be referred to pain management but the ortho guy doesn't want me to go till I see him again, then theres the holidays. I'm really doing bad with this. I wonder if it isn't somehow related to the autoimmune, I mean it flared up after I stopped pred and just won't let up.
 
Well, enough about my stupid stuff. I"m hoping you will have a happy holiday. My son broke his toe and he has been driving me to PT. They told me they won't do anything unless I become paralyzed, then I get whatever neuro happens to be on call, otherwise it's months of this.
 
I have the sameproblem as you, they say, use the walker,I can't lift it in the dang car. Then they say maybe a wheel chair butit hurts as muh to sit as it does to stand. I swear, I want to hang upside down. I want to get massage therapy ordered but don't know if medicare will pay for it. Wouldn't that be great?
 
Well, I wish you a happy holiay if I don't get on again, it hurts to ue the computer. I do keep you in my thoughts and prayers and hope everything is going okay with you and weather is not awful and things go good with the docs.
 
 
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 12/21/2008 10:31 PM (GMT -7)   

Thanks everyone, sorry I havn't responded back I  have been really busy or wiped out. I'm in a lot of pain right now so I will keep this short. I appreciate all you guys do for me.I know I can get through anything with your support.

Patty I know it's the season of maricles but if I am pregnant. That would be quite the maricle. after having a hysteretomy plus no sex in so long I can't remember. cry lol.

Yes I read al that stuff and I have dr. say it's COPD but my internist says Lupus lung. my pulm said a biopsy would kill me but the internist said they won't do a transplant without one. She said it would be tricky but it will get done. The things that really have me worried is the 20% of normal body weight. I have to really work on that. The other thing is checking my ANA. They wern't clear as to what a possitive ana would do to the transplant possibilities. But my ANA has never been lower than 1:2000 somthing.  I can work hard and lose weight but I can't change my blood. I did't understand the thing about 50% of 2 to 3 year life expectancy either. I wish they would write in english.

well the joints and big muscles are hurting so I am out of here

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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/22/2008 10:42 AM (GMT -7)   
Carol, it is the season of miracles, and if you are chosen to have an immaculate conception, that will make headlines around the world!! LOL. 
 
I"m sorry you're not feeling well.  You've had a lot of stress about this transplant.  I'll keep praying that the biopsy will happen and you'll be okay.  You need to have this done. Period.
 
You're in my thoughts and prayers Carol. 
 
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

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