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My results from pet scan  
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Posted 10/8/2008 10:53 AM (GMT -6)
Well he is 95 % sure it's not cancer. yeah . He said we will do another ct scan in march and see what happens. In the mean time I spoke to the transplant center in OKC. They told me not to listen to the pulm. thatthey will not turn me down because of the spots on my lungs. So it will be about 2 months before I can get going on the tests for a transplant and it will be very very stressful but I am hoping to try to get in the best shape I can to get ready for it. such as lose some weight, get some PT. all that kind of stuff. Hopfully I can get through this stuff without getting to sick and getting set back. The respitory guy is coming over soon to get me fitted for my cpap so I guess I should make my bed or somthing.
I'll be back when I have more time.
God bless
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?
 
 

Posted 10/8/2008 11:39 AM (GMT -6)
YES!!!!!

I'm so glad about your news Carol !! *phewwwwww!* You've had such a long, hard road, sis. I'm glad you got some good news for a change.

You are absolutely right!! Take control of the things that you DO have control over!! It will empower you in a very large way.

Keep us posted with your updates!!

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

Posted 10/8/2008 11:49 AM (GMT -6)
Okie,
I'm so thankful for your good news! I know you are relieved. I'm also trying to lose weight so I can go for my kidney transplant eval. I'll be praying for you. I know your battle isn't over, but thank God for some good news! love ya, Judy
Posted 10/8/2008 12:13 PM (GMT -6)
Okie, so glad you got good news. Sometimes I think just waiting for results is a lot harder than the problems the illness causes. I wouldn't worry about making the bed. My bed is made only when I put clean sheets on it. Otherwise the blankets are just pulled up. I can still see my mother shaking her head at me. That was not how I was raised. Even when her cancer was really bad, she had that bed made.
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.

Posted 10/8/2008 12:52 PM (GMT -6)

Yeah, Carol!!!

I'm so glad you got such good news! smilewinkgrin

Robin
 
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
 
 
Also a wife and mother of three.

Posted 10/8/2008 1:48 PM (GMT -6)
Carol!! That is fantastic news!  I'm so relieved it isn't cancer, but that they're being cautious and testing you again in a few months.  That is good care.  And the transplant!!  WOW.  Were you surprised when you were told all this?  It must have been a wonderful, shocking thing to hear!
 
We'll keep praying for you 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),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

Posted 10/8/2008 2:28 PM (GMT -6)
I am so glad you had good news.
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, 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

Posted 10/8/2008 2:41 PM (GMT -6)
I am happy you have a new chance at transplant!!!!!!!!!!!!!! Mazel Tov!!!!!
Posted 10/8/2008 3:55 PM (GMT -6)

thanks eveyone! Yes I do have a much better attitude today. I must admit I do let the what if's creep in but I'm trying to not let it settle. There are some problems with having autoimmune disease and the meds for it that can eliminate you from the transplant but they are not as stringent as they used to be. Your right Rosie, I need to focus on what I can do not what I have no control over. Plus I got God on my side smilewinkgrin .

Judy maybe we should do a little on the side transplant encouragment. I know we have to be in good shape besides the obvious problem. So if you want to email me any time to remind me to eat a bran muffin instead of choclate cake I'm all for that. LOL.

Ginny when is your date with the surgeon?

Redrose, how are you feeling girlfriend? I know you have been having a rough time.

Oldhippi, You mean you are suppose to wash them too? shakehead redface I knew I forgot somthing lol.

Chaya and Robin thank you so much! and Mazeltov! back at ya wink

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?
 
 

Posted 10/8/2008 5:36 PM (GMT -6)
Carol!  You're so sweet to be asking us how we're doing.  You're such a good friend tongue .
 
I met with the pre-op doctor last week.  Everything is a go.  I got the green light. I did have some blood work to do and did that a few days ago.  I haven't received any phone calls, so I'm assuming I look like a healthy person with no issues!  HA!!  Right.  I'm trying to get an appointment with my surgeon (who is also my gyno), before the surgery.  Just to ask a few questions and give myself some extra encouragement.  Not sure if I'll be able to get in with her though. Might be a last minute talk with her as I'm laying on the table with my feet in the stirrups!! 
 
My lupus is very quiet right now, which is an absolute God send.  What isn't quiet is my Fibro.  What I need to emphasize most of all with the doctors is pain control.  I'm going to be very sore....  Might have to go the narcotic route, which is something I really don't want to do, but I don't want to be losing my mind with the pain either.
 
I'm just so glad that you are getting the green light for your transplant surgery! You and I both have to eat lots of bran muffins!! I'll remind you, if you can remind me!! Hehe..
 
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

Posted 10/8/2008 6:31 PM (GMT -6)
Carol, I'm breathing a big sigh of relief for you right now. I was worried about the results and am so relieved that they don't think it's cancer. That's also good news about the transplant. What a rollercoaster ride this has been for you!!!! Lots of 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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Posted 10/9/2008 11:25 AM (GMT -6)

Amazed I am again, considering all that is wrong with you and you still remember different names with different problems for each name.  I think this is one of the things I have to accept.  For whatever reasons my short term memory almost doesn't exist.

I can respond to you however as you send posts to the forum. If I was able I would create a perfect island where all of us could visit sometime, and be free of all pain and all sickness for a few days at a time.  where we could jump and run, and give our children birthday parties without it making us so sick and in so much pain.

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  

Posted 10/9/2008 10:17 PM (GMT -6)
So happy to hear your good news!!! Am keeping you in my prayers, and hoping the next few months continue to go really well for you!
Lucy
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Posted 10/9/2008 11:12 PM (GMT -6)

Hi Carol. I'm so relieved it's not cancer. And you also got good news from the transplant team! I'm sending you lots of postive energy to stay well (and get buff). You're such a great friend to all of us. Love Ya, Butterflake

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

Posted 10/10/2008 2:00 AM (GMT -6)

Hey Ginny,Hippi,Hester,Lucy and Donna!

thanks guys I really appreciate you all. I'm sorry I didn't respond sooner. They gave me a cpap to help my breathing and so far I think I've slept about 20 mins. lol. They gave me the wrong one so they have to send out the right one that only covers my nose. this one cvers my whole face and is uncomfortable.

Hester, I'm sorry you are having such a hard time with your memory. I think a lot of us have suffered with the short term memory problems. Somtimes mine are worse than other times. I think it's my meds more then anything else. They scaned my brain and like my dad would say "they didn't find anything" LOL. The island sounds wonderful. I would love to be able to run and jump again. Plus I could chase all the native men around. tongue

Hey Donna, thank you so much I knew you'd be praying for me.((((Donna)))).Do you use a cpap too? How the heck do you sleep with it!

Lucy, thanks hun, hey I love your quote lol. so true!

Ginny I was thinking about having a bran muffin with ice cream and choclate syrup. It's the only way I can stand them! I hope your fibro gets better soon. Does it hurt worse in the cooler weather? That's one thing I don't have Thank God!

Hey Hippi, I havn't seen you as often as normally. I was thinking your flare was getting the best of you. I hope you are getting some rest. Don't over do it this weekend. Love ya!

Thank you all so much for your love prayers and encouragement

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?
 
 

Posted 10/10/2008 7:23 AM (GMT -6)

Hey Carol. I'm currently not using my cpap. Every so often I take it out, brush off the webs and strap it on. I have the kind that covers my nose. I have to say that when my breathing is labored I'm glad I have it, but the moment I feel better that puppy is stashed in the closet. I hate filling and cleaning the thing and I'm pretty good at ignoring my docs when they nag me. BTW there are many different styles of masks. Also the rate the air is adjusted makes a big difference. The temperature not so much. My BF was looking over my shoulder one day while I was online and he thought it said "The CRAP Shop." That sums it up, huh? turn   Love Ya Sweetie. (((Hugs))) and prayers, Butterflake

 

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

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