organ involvment

Organ involvment?
6
never had any - 37.5%
9
yes being treated for it - 56.3%
0
yes will need surgery - 0.0%
0
yes there is nothing they can do for it - 0.0%
1
being tested for it now - 6.3%

 
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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/17/2008 8:44 AM (GMT -7)   
Hi everyone, I've been doing some studies and not trying to sound like the dreaded poor me but I see that between 10 and 15% of lupies or simalar auto immune diseases are fatal.Which considering it used to be about 80 % that is pretty awesome
Anyway, I have been talking to Barb lately and she said that if I have lupus lung than the transplant is out of the uestion. I went to see my internist last week and told her that my pulm. said he couldn't do a biopsy because I wouldn't survive it. My internist said there are ways to get it done. and that they won't give me a transplant without a biopsy first. I would  be out of it of course and they would have a chest tube and all kinds of stuff ready in case my lung collasped. they wouldn't need a big piece to biopsy but from what Barb said it isn't a pleasant experience. but none of this is so it can't be any worse than a transplant. So anyway now that all this tests have been done the verdict is in. My doctor gives me a whopping 24 months to live. It usually takes more than that to get a lung plus I can't even get approved for the list until I go through all the tests like the biopsy and and God only knows what. The thing is I can't have even been around a smoker in the past 6 months before they will even test me. A couple of months ago I took a puff on somones cigerettte. (it looked so good plus I didn't know about the transplant). Anyway I told my internist and she told me to lie to the transplant team. Because my time is so short. She said there is no way they can tell the difference. I know she's just trying to help me I mean that's her job. I just don't feel comfortable doing that. I'm not planning on taking up smoking and I could just kick myself. I just don't know what to do.  I have probably smoked 5 cigs. in the past 2 years. Just because somone was smoking it in front of me at a weak moment lol. I'm trying to have a good attitude and I'm doing pretty good right now. but I would like to know if you have had or do have any type of organ involvment and what was/is being done about it.
thanks
love ya



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/17/2008 10:24 AM (GMT -7)   
I agree with your internist - it doesn't seem like a single puff or an occasional exposure to second hand smoke would be that big an issue. What they want to weed out are the people still smoking or the people that get secondhand smoke every day. I'm not sure I'd even consider that a lie, to tell you the truth.

Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/17/2008 4:44 PM (GMT -7)   
Hey Carol,
 
I'm sitting here reading your post feeling totally frustrated that this entire dilemma is so stressful and taking so much time to get done. I'm so sorry.  We all wish we had the magic potion to help you.  I don't think smoking 5 cigarettes over the course of 2 years is going to hamper your efforts.  The lungs regenerate themselves so quickly.  I would take that burden off your mind right now.  I agree with Lynnwood. 
 
I've had organ involvement. My heart valves.  Prednisone took care of that issue for me.  I've been pretty fortunate to not have much more than that.  My lupus has mainly been a problem with attacking my blood.  APS being the biggest outcome.
 
I'm praying for you Carol. How are you feeling with the knowledge of the timeline that your doctor gave you?  Are you upset that they said that to you or were you wanting that kind of feedback?  What's the next course of action going to be?
 
 
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/17/2008 5:11 PM (GMT -7)   

Thank you so much Lynnwood and Ginny, I think I will wait until after the new year and make an appt: Patty Latty lives down there so I know she will be a huge support for me.

Ginny how are you feeling? I hope you aren't over doing it. You asked how I felt about this time line. It's kind of strange but I actually feel someone releived. My health care worker keeps telling me now Carol there is nothing stamped on the bottom off your foot that says you only have so much time. lol. Of course she is referring to a commercial on television for cancer treatment centers of america. I don't have a death wish or anothing but living hooked up to machines and spending so much time in the hospital. The only thing I don't want to do is suffercate. That thought scares me. I just don't want these doctors to play games with me. Just spit it out ya know? My husband was my age when he died. I don't know what God has planned but since I am a christian I'm not praying for healing. I'm praying that he gives me strength to make a diffrence in someones life while I'm still here. But I plan on laughin alot and telling jokes and having christmas tree lights up and bake cookies. and enjoy my friends and family. I'm sorry if I'm making anyone uncomfortable I really don't mean to. I'm sure not all days will be good days but I'll take what I go one day at a time. Wow I'm really tired all the sudden so I think I'll get some rest.

Your blood problems don't sound to good to me. but I have to admit I will have to read up on itto really understand. is it inflamation in your heart valves that you took the pred. for?

just remember phil.4:11

thanks again ladies. I hope you don't have any more problems pop up on ya. totally praying for ya!

love ya guys

carol


Prayers,hopes and dreams!
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 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/17/2008 5:48 PM (GMT -7)   
(((((((((((((( Carol )))))))))))))

I'd rather know the whole prognosis too. I always say that I can deal with anything if I know what to aim at.

Carol, I'm so sorry this all sound so bleak. I hope they find out they've made a big mistake and you have something treatable.

I agree with your stand on wanting your life to have significance to others and to our Creator. Thank you for sharing that . . . its so settling.

Keep us posted on your progress with the doctors, ok?

Prayers, hot tea, hugs, 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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/17/2008 9:06 PM (GMT -7)   
((((((((((Rosie)))))))))))), thank you sweetie, Hey who knows maybe we will all be gone in 2 years. Besides it will end my suffering over those trivia questions!!!! I have an IQ of 141 and feel like a dang idiot doing those things. Maybe I should wait to take my meds until after I answer those questions.
love ya
carol
Prayers,hopes and dreams!
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 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 1:16 AM (GMT -7)   
*holds Okie's hand and the two walk along, chatting as they go*

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/18/2008 8:33 AM (GMT -7)   
Carol,

I'm so angry at your doctors. Hope and a positive attitude are so important to healing and they slapped you in the face with this information and took away your hope. If they are that insensitive, maybe they are wrong. Please don't let one doctor take away your hope and gentle nature. I know that we are all praying for you, and you know you have a lot of good friends here who will do as Rosie said, and walk with you. Don't give up Carol. I know you can beat the odds!

Love,

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/18/2008 10:45 AM (GMT -7)   
Carol, they gave my grandpa 2 months and he lived anoth 2 years. On the other hand they gave my cousin 2 years and he died 6 months later when his first grandchild died- it broke his heart and he gave up. So ignore numbers and time lines, doctors are giving it their best guess.

I have neurological involvement, had pericarditis, and my liver gets in on the act every so often. I am currently being treated for the neurological involvement. I feel like a moron after trivia and my IQ was 172 in 2nd grade. I haven't had it tested since. I had too many problems in school because they stamped my IQ on the front of my records for everyone who saw my file to see. You have no idea the expectations they have for you when they see numbers like that. All I wanted was to be normal.

Now I might get my wish if we can't control the neurological involvement.
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, now cellcept


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/18/2008 11:17 AM (GMT -7)   
Carol, I am so impressed with your attitude and gentle, sweet nature. I have kidney involvement and am now on dialysis,hoping one day to have a transplant too. I, like you, pray for God's will and not necessarily healing. And I have also decided that I need more laughter and pure fun in my life! The Bible speaks of the healing power of laughter and scientist have proven it! Carol, I hope you have at least one good belly laugh every day! God is in control of your life, not doctors and when He's ready for you what a sweet homecoming it will be! You are in my prayers! Love, Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/18/2008 2:40 PM (GMT -7)   
Hi Carol,
 
You know, what you said in your reply to me yesterday about feeling okay with all the information you've been given; really made me stop and think.  I've been thinking about my own life, death, where I'm going when I die. (and I know where that is, and I can't wait!!) What you said about praying for an impact in someone's life here instead of praying for healing, was profound to me. It is so true that if God wants you home, no amount of praying for healing will change when that happens!  I think you have a very healthy outlook on your future and the present.  You want to be productive and make positive changes in people's lives.  Well, guess what?  You already have. Here on this forum. In my life.  In the lives of the men and women here.  You are making a difference Carol. A profound one. I haven't been able to stop thinking about you and how much peace you have.  It makes me pray differently. Gives me new hope and peace in my own situation.  Thank you. ((((((((((((((((big bear hugs)))))))))))))))))) I'm going to take life one day at a time too.
 
To answer your question.... Yes, it was inflammation in my heart valve that the prednisone took care of.  Didn't take long either. Eh, well my blood issues are what they are!  Hehe... It's the APS that is so serious for me.  But I don't mind taking rat poison the rest of my life. Whatever! Hehe... I guess I have a similar feeling about my issues as you do about yours.  They are what they are, right! 
 
Yes, keep Phillipians 4:11 close to your heart Carol.  I'll do the same.
Praying each day 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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 3:21 PM (GMT -7)   
A little phrase that helps me get through the hard times. This is the Gospel according to Rosie. God does not cause illness . . . but He does allow it. . . and when we give Him the opportunity . . . He really can use it for good.

I hope that didn't offend anyone . . . its just a way of looking at things. . . and Carol, you have managed to make the most out of a bad situation. Thank you for sharing your insight with us!!

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 11/19/2008 5:46 PM (GMT -7)   

Hi everyone, I would love to speak to each of you seperately but I'm having a tough time. I can't get on the list while taking predisone. I guess when you get a transplant they want you to not have osteoporosis because you will be put on anti rejection meds to take your whole life. which of course causes bone thinning. I already have osteo but it's not bad and it can be reversed in some cases. So that's what I'm shooting for. Anywa it's been three das off the steroids. I noticed this morning my knees were starting to hurt. by tonight I have a serious back ache. I take vicodin and it is doing absolutely nothing! I would get more out of an aspirin. I'm setting at the computer and worrried about when I stand up I know my tailbone is gonna hurt! I asked my doctor if she could give me somthing instead of pred. like methodrexate or whatever. She said those meds do specific thing in specific areas and they are not good for the lungs. rolleyes Well I just wanted you guys to know that all of your messages to me have touched my heart and I wish I could get together with each one of you. You are all so special to me.

Hang in there all

love ya

carol


Prayers,hopes and dreams!
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 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2008 8:34 PM (GMT -7)   
((((((((((( Carol )))))))))))

Thanks for the update. It was a good idea to check about the MTX. Sorry it isn't an option. *sigh*

Hot tea for you!!!

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/19/2008 10:18 PM (GMT -7)   
Hi Carol,
 
Well, I guess it was a good idea to at least find out what your other options could have been.  I'll continue to pray for you my friend. 
 
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/20/2008 9:49 AM (GMT -7)   
I just wanted to chime in about Rosie's comment ..."God doesn't cause illness He allows it.." I whole heartedly agree! I think if we could ever totally grasp that concept (speaking primarily to self) it would change our outlook completely. I have been so impressed with the attitude of many of you and it has helped me improve my attitude immensely; especially you, okie! I think a major hurdle for some of us, at least, is the attitude or perception of other people about our chronic illness. Has anyone else found that to be true? (sorry, I think I veered a little from the topic) Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/21/2008 8:11 PM (GMT -7)   
Judy . . I agree . . . attitude is EVERYTHING.

"We can't control the waves, but we can learn how to surf!!"

LOL!!

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 11/21/2008 8:46 PM (GMT -7)   
thank you ladies, you are so sweet. Yesterday a shark went an took a bite out of my surf board. I was talking to barb on the phone walking to the store. it's 4 blocks away. After the first 2 blocks I had to hang up. by the time I got to the store I had to stand and catch my breath. I had my cell phone and called my bro. He was there in 2 mins. to pick me up. He said I wish I had known we needed pop! I'm thinking I wish I could walk a lousey 4 blocks! mad I didn't stay upset though. I kind of make the best of it. My health care worker is always saying there is no expiration date on the bottom of my foot. So today I was so tired I said Oh come on there has to be an expiration date some where! tongue . You know I lost my best friend to the honta virus in my 20', my brother to suicide in my 30's, my husband in my 40's. I hope my folks go before me. I don't think they could handle burying another kid. I don't want to be responsible for that. I hope you don't mind me talking about this stuff. I don't have anyone else. Everyone is in denial. My bro and sil will say God will heal me right to the end. My son I try to avoid telling him everything. It's just funny the things you think of. I always figured if I was gonna die I would want all my family around to feel bad for me. (stupid). Now I don't even want them to think about it. I mean I know it's possible to get a transplant but I also know the time constraints and frankly it looks like I'm gonna run out of time. Shoot with my luck I'd get a perfectly great set of lungs and walk out in front of a bus or somthing. tongue . I am so happy to have you guys for friends. Even though I could pass you on the street and not know who you were it doesn't matter. I know who you are here. You make me laugh, you make me smile, you make me cry, you make me a better person then I used to be. I'm learning to have compassion for other people. You guys are all so different but all so the same. Sometimes I thinka higher power that I choose to call God knows just people can deal with chronic illneses .Who knows maybe that was his plan in the beginning. Life may not seem fair but if what we are going through has a possitive impact on someone elses life then I say it's worth it. Good Greif I'm writing a book!
Okay let's get down to the serious stuff now. I should have done this first because you guys probably fell asleep by now. Ok the thing is next month is christmas and no one has asked me what I want yet redface   So here are my sizes just in case it was an over sight! I need a little black dress size 4 (I wish). If you have a significant other that has a sibling you could put a bow on them and send em first class to oklahoma. If you have neither of them walmart has a gift card. Feel free to be generous. turn
 
Oh ok I wanted to tell ya I spoke to Barb just before I got on here. They put a cpap on her so we couldn't talk. I couldn't understand her. her 02 stats were at 84 (not good). I told her to get a approvalfor a home oxygen as long as it's below 90 her insurance will pay for it. She won't come home until it gets up there though..
Pray she gets a good nights sleep
love ya guys
carol


Prayers,hopes and dreams!
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 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/22/2008 3:23 AM (GMT -7)   
Carol . . . I'm actually encouraged by your post!! The fact that you "thought" you could walk 4 blocks and set out to do it is amazing! I would have been surprised if you said you had walked one block with all that your body is going through. I hope you are able to continue doing some walking. It has helped most of my issues in some way.

I see how you could fear for your parents' emotions. That is a lot of grief. I've experienced the death of husband, sister, brother, parent . . . but not my children. My mom handled the deaths of my sibs so gracefully . . . she said "God gave them to me and if He wants them back, they were His first!". I've learned that I never had the grace to deal with things ahead of time . . . but as each day comes, I receive what I need to get through that day.

I don't think anyone is equipped to deal with these struggles . . . again, I think we receive the strength/grace to deal with it a moment at a time.

You are right Carol . . . no expiration date! We worry about folks who have chronic illness or terminal illness and then next one to go could be the healthy one sitting next to you who goes next. We just have a "heads up" to prepare for it . . . LOL.

You (and others here) remind me to enjoy all the little things that we normally take for granted.

I'm glad to hear you were able to take at least a little walk!!

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/22/2008 8:40 AM (GMT -7)   
Carol,

I hope you woke up to a sunny morning feeling more hopeful. I hate to hear you sound so depressed, but you have a right to be down. Hang in there. I find that reading uplifting books and listening to good music is a way to forget about my troubles, if just for a while.

Take care of yourself, friend.

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/22/2008 9:49 AM (GMT -7)   
Sweet Carol, I'm also impressed that you walked as far as you did! You go girl! I'll send you the little black dress, but if I find a guy worth keeping, sorry sistah, he wont be coming to Oklahoma! ;^} Hang tuff! Judy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/22/2008 9:14 PM (GMT -7)   
Carol-
So sorry to hear this. I have been there and it feels, well, unreal, like things cant be real must be a dream.  I was given 12 months. With a four year old and being a single mom, that was just not possible. Yet here I am, like so many others who passed all expectations. I agree with Lynnwood and your internist. As she said, there is no damage from that amount of use.  Also, on the bx, don't worry. I haven't had a lung, but I've had four livers and they are bad. I've been stabbed in the head. And I was nearly lung biopsied when I nearly died from pneumonia the last time. I just go with it and let God sort things out on the what will happen bit.
 
You know they do all kinds of junk now they used to couldn't do. Remember your condition pushes you to the front of the line and gets you  the best organs.  THese centers operate on "success rate" and they are very determined for your treatment/transplant to be a success.  I know you are strong, Carol, and that things now seem near hopeless, but with the half empty "truth" of the glass, there is also the half full. We each have our own destiny, and you don't know what yours is yet. It's so important for you to realize how important you are to everyone who knows you and how much we care and cherish your friendship. I know this is way hard, harder than what I did, and I can only tell you how I got through.
 
First off, I was horrified and sad by my family's reaction. They just didn't want to believe it and acted like I told them I was changing my hair color or something. It was an equivalent to "that's nice dear".  They just can't process it, don't want to believe it, and were kind of selfish about it. So what, it's their problem. I certainly had enough of my own. But it made me feel so alone.
 
Second, I went with the dizzy, unreal feeling like it was a gift from God. And I think it was. I fell apart time and time again, but the dizzy unreal feeling from the news I was given forced me to only think about the here and now and really mundane things, it disarmed me from my speculations, which were often grim.  By the time I was in bad shape, I had convinced relatives to deal with the technicality of a will and custody. But until then, and it was a long 12 months, I just was a good soldier for the doctors. I lived it one day at a time and was a little more selfish about doing a few things I wanted, like spending as much time as I could with my sons or just being lazy. And I wallowed when I wanted, and it helped me. I was careful about driving and dangerous activities since my mind was stressed on this natural buzz the good docs had given me by turning life upside down in a relatively casual way,I thought.
 
Third, having gone ahead with the torture and surviving it against the odds, I realize that my life after treatment has had some meaning and it was worth me getting treatment, however guilty or scared I may have felt, I was meant to go on for a reason I couldn't see back then. You have been led to help and help offered for a reason.
 
Now for the joke my bf told me:
A man was stranded on top a building in a hurricane. A guy came by in a boat and asked him "do you need any help?"
The man replied, "no, God will save me."  The storm raged all around and the man became afraid.
Then a helicopter appeared, and someone called down to the man, "we are coming to get you."
"No!" the man called out. "God will save me."
The pilot on the helicopter argued with the man but had to leave as the storm suddenly got worse and a great wave came and swept the man away.
The next thing the man knows, he's at the Pearly Gates, and he calls out to God, "why didn't You save me?"
And God replies, "I sent you a boat, a helicopter, what more did you want?" ;)
 
Love to you Carol, and I hope you laughed a little. I know you will make it through this, and things will work out, I just know. I am able to be on the computer more now due to pain med increase *sigh* if you need me. Try to float down the river of Denial for a while, and do what you need to do. You deserve tiptop treatment and a good outcome. You have a destiny you may not know now. But I can look back and be glad I fought, though sometimes it didn't seem worth it, or I felt others were more deserving. We don't get to make that choice, I believe God does and it is my job to reasonably try. I don't mean to sound preachy, but there is some even sort of random method to the madness of life, even if things seem completely random and meaningless now.
 
Know I'm so sorry about this news and the "number" they gave you. There is more to you, me, anyone than that and they are nearly always wrong in their estimates, since they operate on worst case. I have faith in you and know I'm praying for you and Barb and I know that things will get better, you both have helped me so much. I just hope you go through the motions, they wouldn't be pushing if they didn't think it was worth it. I hear about so many post-liver transplant patients who were down to their last bit and things came through, and they are doing way way so much better, amazingly better, like some going back to athletics and stuff.  Please know I'm here for you whenever you need a leg up, in horsespeak! ((((hugs))))
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

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