More bad news/ not much left to try

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/17/2008 7:36 PM (GMT -7)   
I hate to dump this on you but I am so upset I just want to say this and get it out and over with. My appt was today with the pulm. He said I had more than 2 spots on my lungs. once looks like a small area that has collasped but nothing I would even feel. I also have one very close to my heart and one very deep. My head was spinning and I wish i had not been alone because someone needed to be able to ask questions and remember answers. He show me the paper that was approved by the plantsplant team that they would take a look at me. Than he hit me with the rest of the story. They will not even try to get me listed with spots on my lungs. because what if it's somthing that will attack my new lungs. Than he told me that any biopsy would have to be done from the outside because of where they were located. Unfortunately even if he could find somone that was willing to do the biopsy my chances of living through it were very low. cry He told me that because of where they were my lungs would probably (drop) whatever that means. and as bad as my lungs are it would take 30 mins. to repair and he would give me 60 seconds survival rate. The only thing left to do is a PET scan. I have to have that on monday. Even a pet scan won't get rid of the spots but I'm just doing what ever I can. He said that even if we can prove they are scar tissue or something that the transplant won't be hurt by they still won't take me but they will just come up with some other excuse. So basically I walked out being told I am gonna die and there isn't any thing that can be done.
I didn't even know how to write this and I will try to hang in there and do what I can. I just feel so bad for my son. He's 28 and already lost he dad when he was 19. I hate to be a drama queen or a downer I just felt I needed to let everyone know what was happening.
Love ya guys
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?
 
 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 9/17/2008 8:18 PM (GMT -7)   
(((OH Carol))) I'm so sorry to here this ... what a terrible thing you have to deal with hopefully the scan will help some or maybe other options are out there. Believe me I would feel the same way as you, and no you are not a drama queen. My throughts and prayers go out to you and your son.
(Hugs) 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.     
 
 
 
 


honorablemention
Regular Member


Date Joined Sep 2008
Total Posts : 26
   Posted 9/17/2008 8:43 PM (GMT -7)   
Sorry you have to go through this, but don't give up.

I'll keep you in my thoughts.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/17/2008 9:13 PM (GMT -7)   
Okie, I am so sorry you are going through this. I hope there will be other options available to you.
Holding you in thought and prayer....
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


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/17/2008 10:29 PM (GMT -7)   
This sounds like the most frustrating thing in the world. You are very strong. I hope that everything works out. Best of luck to you and your family. Be persistent and don't give up!
24 yr old female. Diagnosed with Crohn's in 2006, but had symptoms since 2005 (currently in remission). Undetermined Lupus Diagnosis. Severe migraines. Medications: Nexium 40mg 1x daily, Pentasa 500mg 4x daily, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. Past medications... too many to list! I follow a mostly low fiber, low residue diet.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 9/18/2008 3:07 AM (GMT -7)   
((((Dear, Sweet Carol)))) I can't even begin to tell you how badly I feel for you. How can you say you're a drama queen when you received some of the worst news anyone can get? I bet you hardly slept last night. And you sure are a great mom to think of your son right now. I know this is extremely rough for you. From what I understand of PET scans, it will only tell the doc what the spots are- hopefully scar tissue. If the size of the spots haven't changed over time that would be a very positive sign. I know it sucks to think that the transplant team won't consider you, but I'm praying the spots are nothing serious and you will live comfortably for years with just your O2. Hey, I don't know if you remember this funny, old thread, but you don't want the transplant team anyway because they work at the Bates Motel. I love you Carol and I'm sending prayers and lots of positive energy your way. Try to rest today. Love, Donna

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
 


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 9/18/2008 4:16 AM (GMT -7)   
(((((Carol))))) I'm sorry you are going through this. I will keep you in my prayers. sad
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.


momtothree78
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/18/2008 6:54 AM (GMT -7)   
I am so very sorry to hear the news.  You are not even close to being a drama queen, you have every right to feel the way you do.  I also have Lupus and was wondering the COPD you have, is that from the Lupus or from smoking?  I smoke and am very determined to try to quit because of the complications with the lungs and with Lupus.  It is that it is such a hard habit to quit especially when you are  stressed out and nervous!  I will be saying many prayers for you and your son, try to hang in there.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2008 8:50 AM (GMT -7)   
((((((((((((((( Carol )))))))))))))))

OH NO!!! OH NO!! OH NO!! Oh Carol . . . I am SO sorry you got SUCH difficult news. I'm absolutely breathless.

Carol, I know that you are a believer . . . I hope that you will feel the prayers being offered on your behalf from each member here who is also a believer . . . I pray that God will give you peace. A peace that will absolutely bathe you in warmth. There is a little saying that I tell my grand when she is terribly frightened by a thunderstorm . . . .

"Sometimes God calms the storm . . . but sometimes God allows the storm to rage, and He calms the child."

Carol. . . you are such a blessing to so many on this forum. I really want you to know that we are praying for you sis.

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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/18/2008 9:33 AM (GMT -7)   

((((Carol)))),

    Sweetie, I'm so sorry to hear this news. Hopefully the spots are just scar tissue and there are options for you.

    Rosie had some wonderful words of wisdom to offer and I agree completely. Hang in there and don't give up hope. You are in my thoughts and prayers.

                                                                 Love you, 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.


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/18/2008 9:54 AM (GMT -7)   
I didn't even know how to write this and I will try to hang in there and do what I can. I just feel so bad for my son. He's 28 and already lost he dad when he was 19. I hate to be a drama queen or a downer I just felt I needed to let everyone know what was happening
 
I do not even know what to say.  To me you are holding up pretty good with such bad news.  Thinking of your son instead of just yourself, tells me that you think of others before you think of yourself.  But you know what they say about crashing in an airplane.  give yourself the oxygen mask first, and then place one on your baby's face.  You may have to do something similar to this.  Today you have been given news that anyone in the world would be devastated by.  It would have me so devastated that I probably would be speechless, thoughtless, and emotionless.  I would probably find myself with a mental shutdown.
 
I am so sorry for this news.   And if anyone in the world has the right to rant, it is you.
 
Please keep us posted as to how this progresses.  Will send prayers your way.
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
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/18/2008 4:18 PM (GMT -7)   
Carol,

I know you're in shock and how could you not be. I still think it's a good idea to get a second opinion and I'll see what I can do to find someone down this way. It will be interesting to hear what your PCP has to say next Wednesday. One thing's for sure Carol, your pulmonologist's bedside manner wins the award for the worst I've ever heard of! You also deserve a little compassion from your brother and SIL. Well, girlfriend, you're getting a lot of it here. We're all with you and we'll always be with you. Sorry you've run out of your pain meds and I hope you can get some sleep this weekend. Hopefully you'll get some good news after the Pet Scan on Monday and learn that the spots are scar tissue so that even though you may not be a candidate for a lung transplant, you can still go home and continue to live your life.

I'll be praying for you too, Carol,

Love you,

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


alexsal
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/18/2008 5:03 PM (GMT -7)   
I have found out that the people on here really do care for everyone on here whether they know you well or not. Carol your not being a drama queen your being a person who is scared and needs someone well I don't know you well but I am here to listen if you need someone..You are in my thoughts.
SYSTEMIC LUPUS,ASTHMA,DIABETES, DEPRESSION ,MIGRAINS , ANIEXTY  HEART PROBLEMS.  ALEX
 
DON'T MAKE ME APPOLIGIZE FOR WHO I AM!!!!!!!!


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/18/2008 11:30 PM (GMT -7)   
Dear Debbie, honormention,lucy,alex,Pat, Rosie,Hester,Bab's,Robin,momtwotree,Donna,and meowese,
I am so greatful to have to many friends here. You really all lifted my spirits.
I have appt mon.tues. and wen.next week. Maybe somthing will come out of them. I did tell my brother and SIL that they needed to take off work to be at my next appt. I figure if they are going to try to tell me how to act and what to feel than they need to be there to hear what the doctor is saying to me. Besides I couldn't remember much of what he said to me after he said most of it was bad news. rolleyes .I spent the majority of the day feeling sorry for myself. The weird thing is if it is lupus or sceraderma I will probably never know because I can't get a biopsy. Strange the things you think about when your life flashes in front of you. I'm sure some of you have gone through that feeling.
Patty thank you for calling me today. That was so sweet with all you have going on. Thanks to those who emailed me too.
Rosie, thank you for your words of wisdom. I do beleive and I will continue to pray for peace.
Hester I hear what ya said about the plane. I will keep it in mind.
mom2three, I did used to smoke but since my lungs started being a problem in my 30's the doctors don'tbeleive that smoking was the real cause. Yes is it a hard habit to break but the have some pretty good things on the market these days that will help. Do yourself and your family a favor and try as many times as it takes until you get it. Good Luck.
Donna, LOL I do remember some about the Bates hotel. I gotta look that one up and refresh my memory. I know everyone was crackin up about it. LOL
And to all of you thank you all so very much for your prayers. I'll let you know when I know more. Right now I'm out of pain meds and I am having a rough time of it so I'm heading back to bed.
love you 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?
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/19/2008 7:31 AM (GMT -7)   
((((((((Carol))))))))) I'm sitting here in tears for you right now. I wish I could be there with you to go to your appointments with you for some moral support. I like Patty's idea about a second opinion. You are certainly not a drama queen. You are such a wonderful person and very loved by people who have gotten to know you on this forum and we will always be here for you. I hope you can feel all of our positive thoughts and prayers that we are sending to you. Lots of love and hugs,

hippi
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
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/19/2008 8:26 AM (GMT -7)   
Carol, my friend.... I'm in tears.  Can I pray for you?  Is there a support network set up for you?  You need some guidance and support right now.  We love you all so much, and you're such a bright loving pixie in our group!  Please let us know how we can best support and help you, okay?  If I can pray for you, and if others can do that please tell us.  Prayer is powerful and amazing. 
 
(((((((((((((Carol))))))))))))))). I wish I could just run on over to your place in my p.j.'s, with a tray of hot tea from Rosie, and some funny chick-flicks, and we could just hang out.  smurf
 
Love you Carol.  Keep us posted on how you're doing and any news okay?
 
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/19/2008 1:14 PM (GMT -7)   

Hippi and ginny, I'm sending you huge hugs! Thank you so much for your friendship and for your prayers. Yes please continue with your prayers. I hate to say this but I am afraid. I just need to figure out how to deal with this better than I am. The dr. called today and they rescheduled my pet scan for the 29th because they said they couldn't get my insurance taken care of in time. So now I have to wait an extra week. I have a dr. appt on the 30th but I don't know how long it takes to get the results of the pet scan done. Well I am notthinking to well right now so I'm gonna go. I am just so greatful to have you all to help me get through this. if there is anything I can do for you please let me know.

love ya

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?
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/19/2008 7:05 PM (GMT -7)   
Carol, you're such a selfless woman.  Amidst all this terrible stuff you're going through, you still want to help us out if we need it.  The best thing we can do for one another is keep the prayer chain going.  I know Judy would be all over this too!  I'll keep praying for you Carol.  When you have that fear, take it to God. Let him know how you're feeling and what you need......
 
I hope your doctor appointment works in conjunction with your pet scan too.  Hmmm, hard to say when it's the very next day isn't it.  Maybe they can put a rush on reading the test? 
 
Have a restful night Carol and know how much you're loved.....
 
XOXO
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/19/2008 7:30 PM (GMT -7)   
Hi Carol,

I hope you're making it through these days ok. Are you sleeping well without your pain meds? I know it's going to be a long weekend for you till your scripts come in on Monday and I'll be thinking about your more than ever.

It's really lousy that you're going to have to wait another week before you go in for your pet scan. You'll get the results as soon as a radiologist reads the scan and writes his report. I hope he doesn't waste any time. Wat is the appointment on the 30th? Was that already on the books or do you suppose that's to give you the results of the pet scan.

Hang around here Carol and let us be here for you. Let us know how you're doing and how you're feeling. I'll call you this weekend

(((((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 9/20/2008 1:15 AM (GMT -7)   
Hi Ginny and Patty, Ginny yes yes yes, please keep me on your prayer change. I'm a pentecostal and you know how we are! LOL. Diffinently beleive in the power of prayer. I love you so much for your kindness (((((((((Ginny)))))))).

Pat I thought of one thing you could do for me if it isn't asking too much>>>>>>>>>>>>>>>>
You could take up a collection for me so I could winter in the bahama's! LOL. If you can't collect enough for that maybe just the sunscreen and I'll work on the rest a little at a time. Seriously though give me a call if you find a good pulm for a second opinion. Maybe we could hook up down in OKC for the afternoon. Yes the appt on the 30th in with the same doctor. It was actually made before my spiral scan. Not thinking they would find anything. Than of course when they did he had me back sooner. Now we just kept that date because of these other tests. Plus the did an alpha 1 test that takes about 10 days to get the results of. well you know the saying. Life is great if ya don't weaken. I hope you get moved into your new place soon. and that you have lots of help doing it.
love ya lady
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?
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2008 3:19 AM (GMT -7)   
((((((Carol)))))))
I'm so so sorry about this news and your lungs. It is awful to hear that kind of news. But docs can be wrong. They gave me year to live in 1993. Hah! but they did really mess me up by misdiagnosing me and giving me the wrong treatment, thinking I was dying.

I hate to say it, but your doc had no right to say such negative things to you and make assumptions about what the team would do. YOU ARE APPROVED! That IS GREAT! It means you get a whole new level of really really good care you never knew existed. You will be surprised about what they can do. These are docs that like a challenge!

He's probably just jealous. He sounded very negative as if he were trying to discourage you from even being evaluated. Maybe he'd rather have you rack up bills and expenses with him and believe he is the be all and end all, but you need to do that evaluation and start dealing with those docs and ditch this guy as soon as you can. How awful to say that to you. It's not over till the fat lady sings. After all, what was your doc planning on, waiting to see you after you got rejected for the transplant and telling you "see, I told you so"?

Sounds like mind games. Maybe he just wants you to be really happy when they agree to do it so you follow all the rules and don't goof up. Who knows.

Maybe when you see the transplant surgeon like I did, I had one evaluate me--they totally went against a lot of things I'd been told by my other experts. They are really good. They have to be. They may just say that your old doc was full of crap, you never know. Your doc might have just been having a bad day, maybe his wife left him and he took it out on you. I just can't imagine a doctor telling a patient what a transplant team will say before they have even evaluated you!!!!!

I would definitely want to hear this news from the transplant center, not from him. The way Mayo does it is you contact the transplant center directly and they do all the evaluation, not another doctor, because the transplant surgeons know what they need. Also, different centers have different requirements based on their expertise. Mayo for example prides itself on being able to use alot of donor organs that less skilled surgeons couldn't use and they do a really thorough scan and test and procedures. So one center might say no while another may say yes, once they figure out what it is and if it is a problem. They have much better equipment and they are the ones to make the decision. Remember that if they can do a transplant, they may be better at doing difficult biopsies or other surgery.

I go to a liver transplant surgeon for my liver now, and I don't need a transplant. but as my disease progresses he will be fully aware of my situation, and my liver.

My dad has a collapsed spot on his lungs. He is seventy and runs five miles. They are watching it. It hasn't grown or changed for years. He did smoke for a long time in his youth and worked around chemicals and pollutants. They don't know what it is, but it isn't changing. Possibly it is a scar from a past infection that is resolved and will not come back.

Lung pictures are not real clear, they make mistakes all the time, and without knowing what it is, how can they know if it is something ttreatable. Also, people with hep C get liver transplants all teh time. They know the virus will attacke the new liver. But sick people have a right to life too.

Please don't give up, Carol. There is a way. Docs have made mistakes before. Let them do their evaluation.

I'm so sorry I'm so bubble headed, Carol. I'm just all mad and sad and worried for you. But I know you will get to the transplant place and be okay.

I feel so bad this is happening to you and you deserve a big chance to cave in and realize what's going on and to deal with your feelings and I wish I could be there to comfort you or try to make a joke to make you smile but I'm half "duh" right now if you can't tell by this post.

Here's another (((hug))) and if you are interested, email, I know alot of people online who have had liver transplants and are sick with all kinds of diseases that are killing the new liver, but they get some time out of it. And there's no "what if" when it comes to this stuff. They WILL find out what it is on your lungs, its their job. I know you will worry, but try not to think the worst yet. You will be surprised about how cool the transplant place is. They'll find your lost car keys and everything. Just try not to worry.
I'm praying for you and all that stuff. Let me know how the transplant place is and anything else.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/20/2008 7:14 AM (GMT -7)   
((((( Carol )))) I am so sorry to hear this news. You are such a blessing to me, don't give up sis, hang in there and lets fight this together. I will be lifting you up in prayer every day and praying for healing and that God will wrap you and your family in his loving arms and hold you tight and give you peace, strength and comfort during this difficult time. Hugs and love to you!

Maybe we can set aside a specific time each day to pray for Carol and one another (i.e. 7pm est)?
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)

Post Edited (jhmom) : 9/20/2008 1:36:26 PM (GMT-6)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2008 7:19 PM (GMT -7)   
I'm there, Stacie. Sending you good vibes Carol. I'm so relieved you are approved for the evaluation. This is such good news. Much love to you Carol. I'm rooting for you. You'll get through this.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 9/20/2008 8:23 PM (GMT -7)   
Carol, your in my prayers. I've really found everyone to be very supportive. It really amazes me the support shown and I haven't replied that much. I think together they can get just about anyting taken care of.
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.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/21/2008 6:58 AM (GMT -7)   
Marji, Stacie, Oldrebel, Thank you all so much. Marji you really said alot of things I really needed to hear. Thank you for sharing you experience and your strength with me. Stacie and OHR, thank you for your prayers and kindness. Please also prayer that I can find another place to live really face. If I stay in this house I will go absolutely nuts. My SIL and I got into a real ugly fight again yesterday.


 
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?
 
 

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