Had my pulm appt. really feeling down.UPDATE

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okie
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   Posted 9/3/2008 11:49 AM (GMT -7)   
I'm not even sure why I feel depressed but I'll tell ya what happened. First my lung function used to be 23% now it's up to 29%. I was thrilled. He was not. cry He said I need a lung transplant. I have to go to hospital tomorrow for a ct scan of my lungs. He said if there is any lupus or scleroderma or anything in there he will see it. He's trying to hook me up with a transplant team in OKC Oklahoma city. He said that they may or may not except me because I have been on steroids and my bones are thinning. He said I would always have to be on autoimmune supressants if I got the transplant and if I have bone problems already it might cause them to think twice. Also he said my heart has some stiffening because of the blood trying to push into my lungs. I have to go to physical therapy every day. I don't have a clue where there is a place to get that around here. cry . I don't know. He really didn't tell me a lot of what I didn't already know but I just got really depressed over it.
Please either pray or send good thoughts. What ever your beleif system is that at least they don't find lupus in my lungs.
Thanks for listening
love and prayers
carol


 
Possible scleroderma.  stage 4 COPD,  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?
 
 

Post Edited (okie) : 9/4/2008 7:02:10 PM (GMT-6)


elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 9/3/2008 11:55 AM (GMT -7)   

Carol,

I'm sorry to hear your bad news.  I do pray that they find no lupus in your lungs, and that if you need a transplant, you get it taken care of sooner rather than later.  I completely understand why you would feel down about that--but the good news is that your lung functioning is up to 29%, from 23%.  Perhaps in the overall scheme of things, your doctor was less than impressed, but we have to take our victories as they come.

My mother was in a similar situation, so even though I don't know firsthand what you're going through, I can identify with it as a sympathetic observer.

You and your family will be in my prayers.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/3/2008 12:30 PM (GMT -7)   
Oh Carol ((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))),
 
I just had a good long prayer and talk with God for you.  I do pray that you receive good news tomorrow.  I'm so sorry sweetie.  It's natural and okay to feel depressed and anxious about this. To not feel that way would be unusual to say the least. 
 
El said something very wise. We have to take our victories as they come.  I agree with her. The fact that it's not getting worse is a victory.  Maybe that means you don't have lupus in them!  We'll pray that you don't. 
 
As for the physio, I'd ask your doc for some recommendations on where to go. Use their resources to the max. Get as much out of them as possible.
 
I'll keep you in my prayers Carol,
 
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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/3/2008 4:21 PM (GMT -7)   
(((((((((((((((((( Carol ))))))))))))))

Hugs, prayers 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


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 9/3/2008 4:24 PM (GMT -7)   
((((((((((((((Carol)))))))))))))))))) Please know that you are in my prayers. I'm on my way to church tonite and will say a prayer for you! He is in control! Love ya, Judy

mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 9/3/2008 4:27 PM (GMT -7)   
(((((((((((((((Carol)))))))))))))))

My thoughts and prayers are with you.
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.


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/3/2008 4:34 PM (GMT -7)   

Hey Carol,

Prayers from my house to yours.  I agree that there is a victory there if your lung has improved.   Hope that things will go well for you in your physical therapy. 

Please keep us posted as to what is happening with you, and how you feel about it.  Sometimes if we can just name a feeling and tell someone, it helps.

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 daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 9/3/2008 5:11 PM (GMT -7)   
((((((((Carol))))))))

You have a right to be depressed, Carol, and my prayers are with you and your appointment tomorrow. Please post right away so we'll know what you found out. I agree with others who said that we have to take our victories as they come and we should always look for the silver lining, but that must have been a real shock to the system to hear that you need a lung transplant. Well, you know where I live, so if you end up in the hospital in OKC, you have a friend right here.

I'll call you tomorrow, though I imagine you'll be at the hospital for a good part of the day, probably all morning. I'll keep trying till I reach you. Hang in there girlfriend. If you can handle living with your brother and SIL, you can handle anything!

You have a lot of support and love here and don't you forget it. Get a good night's sleep, but not before having a nice hot cup of tea ala Rosie. I'll talk to you tomorrow.

Love,

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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/3/2008 7:46 PM (GMT -7)   
Oh, Carol, I wish I was there right now to give you a hug in person and to help you through all of this and help you find a place to get physical therapy. I certainly understand why you would be depressed after hearing all of that. Even though you already knew it, it makes it really real to hear it from your doc. I pray that things are good enough with your lungs that they can do a transplant.

Please call me if you need to talk. I wish I lived closer. I'm always here for you though - all of us here are. Take care of yourself. Since you already have Rosie's tea, I'm sending you some fudgsicles.

Lots of love and hugs,
hippo (oops, I mean hippi, even though I am as big as a hippo)
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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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/3/2008 8:22 PM (GMT -7)   
OH!! tongue Hippy! Hahahaha.... You're too funny. I think Carol will appreciate the humour in your typo.... We love you Carol, hope you get a restful sleep tonight.
 
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


diinIndy
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/3/2008 10:35 PM (GMT -7)   
Okie, are you sure it's COPD that you have? If you have scleroderma, it could very well be pulmonary hypertension (NOT the same as your normal everyday hypertension), and there are several drugs used to treat that, none of which appear on your list. Sildenafil (yes, Viagra), is a first string treatment, or a similar drug, Cialis, is taken only once a day. There are other SQ and IV drugs that are used in more advanced cases and given via a pump, something like an insulin pump.

RN4kids
New Member


Date Joined Jun 2008
Total Posts : 18
   Posted 9/4/2008 5:28 AM (GMT -7)   
I'm sending happy thoughts your way!!!!

Dx- Corrected Tetralogy of Fallot. open-heart surgeries 1982, 1983, 1984, 1985, 1987.
Hypertension, Hyperlipidemia, Anxiety, Horner's Syndrome
Currently playing diagnostic limbo but looks to be Lupus and Dermatomyositis

Meds: Plaquenil, Prednisone, Tramadol, Lipitor, Xanax, Atarax


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/4/2008 6:41 AM (GMT -7)   
Hi RN,di,(welcome to the group),Ginny,Hippi, Pat, Hester,Robin, Judy, Rosie, El, I hope I didn't miss anyone. I wanted to thank everyone for the thoughts and prayers. It really helped me last night. I did go to chuch last night but I had a hard time concentrating. My CT scan isn't until 1:30 but the doctor office wants me to go in early for an alpha 1 test. I think i alredy had that and it was neg. but I'm not 100% certain but hey what's 1 more blood test right? LOL.
I think yesterday bothered me most because I had already been told I had 8 yrs. Well 8 yrs could be a life time. I think what scared(scares) me is what if I do get this transplant and somthing goes wrong? I could be dead 6 months from now. I kno I shouldn't think that way. And somtimes I'm so sick it almost sounds like a welcome thing but when push comes to shove it's scarey.
Well I'm going to lay back down for awhile. These tests are taking it's toll. and I have to leave in 2 hours. YIPPY.
I'll let ya know when I get back. I'm sure I won't know anything. It'll probably take a few days.
Love ya all
Carol
 
Possible scleroderma.  stage 4 COPD,  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?
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/4/2008 4:15 PM (GMT -7)   
(((Carol))),
   Bless your heart sweetie! I hope your appointment went well today and the news is better than you expected. I'm so sorry your lungs are in such poor shape....(((Hugs))).
   Please let us know how your appt went and know that you are always in my thoughts and prayers. I haven't been around much lately, but I pray for all of my healingwell family each day.
  Take care and hang in there.
                                                                 Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/4/2008 6:14 PM (GMT -7)   

Ok update, I got the spiral ct scan done it was a piece of cake but the blood thing was a little worse. it took 4 tries to get a vein with anything in it. Not that that is uncommon for me. He finally took it out of my hand with a butterfly needle. rolleyes

So I feel better today. thank you all so much for your love prayers and support. Even you hippo! tongue I won't know anything until probably monday. I will let you know though.

I do have to share an experience I had today with you though. Iwas running out of oxygen at the hospital. So they brought me out some. It was liquid oxygen which is not what I use. So when I went in the back I sat down while the lab tech was trying to explain what was going to happen. I had the o2 on my lap. All the sudden I felt what felt like burning on the inside of my thigh. I jumped up real quick! For those who don't know(like me) liquid o2 is like dry ice. The tech started laughing once she knew what happened. It didn't burn me or anything it was just that sudden jolt and not knowning what it was. So anyway You know when you are standing outside in the cold and the breath looks like smoke coming out of your mouth? As she starts explaining to me again what's going on I have this smoke coming up from between my legs for about 5 mins. blush She couldn't even talk while I'm setting there trying to fan the smoke away from me. It was somthing I will never forget!

anyway thank you all again for your love and support

Carol

 


 
Possible scleroderma.  stage 4 COPD,  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?
 
 


diinIndy
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/4/2008 8:38 PM (GMT -7)   
Hey, Carol. Have you ever had a cardiac cath done to measure pulmonary artery pressures? Sounds like you've had a lot done, so maybe that's already been done. I'm just wondering if anyone has looked into secondary pulmonary arterial hypertension (SPAH).

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/5/2008 8:01 AM (GMT -7)   
Carol, I'm glad that's finally behind you, and I'm not surprised that you found something to laugh about. That's our Carol. I hope you have a restful and pain free weekend. We'll all be anxious to learn what you find out on Monday. Hang in there and stay away from that crazy SIL and brother of yours!

((((Hugs))))

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, 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 9/6/2008 11:38 AM (GMT -7)   
Hi Di, No I have not had that done. I have never even heard of it but I will check into it. Thanks. Why don't you post a (new member) post so everyone can say hello and get to know ya? Thanks for the support.
Pat it's kind of hard not to laugh with smoke coming up from between your legs. I'm just glad the tech was a woman! LOL.
love ya
 
Possible scleroderma.  stage 4 COPD,  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?
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/8/2008 4:10 PM (GMT -7)   
Carol,
   You gave me a good laugh just trying to picture your experience with the smoke..... tongue . You always make us laugh even when you are going through a rough time.....((Hugs)).
   I hope you find out something soon. Take care and keep us updated. You are still in my thoughts and prayers.
                                                                 Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 6:03 PM (GMT -7)   
LOL Carol!!! (about the smoke/oxygen)

I hope you are feeling a bit better today!

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 9/8/2008 7:16 PM (GMT -7)   

Hi ya Bab's and Rosie, thanks for replying. Yeah it was pretty funny. I was hoping to get my results back today but I havn't heard anything. CT scan on thursday, tech said monday but shakehead . Oh well I'll call them tomorrow and see what is going on. I'm just going to believe that no news is good news. Than maybe I can get some more info on the hospital in OKC since I forgot the name of the place.

love ya guys, hope you are doing well

 


 
Possible scleroderma.  stage 4 COPD,  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?
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 7:42 PM (GMT -7)   
Thanks for the update Carol . . . . * sigh * Waiting for the good news can really use up one's limited energy, eh?

Will be watching for results.

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

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