View Full Version : LUPUS AND DEATH!!
05-03-2005, 01:04 AM
Hi there everyone, I know this is an extemely tough topic, one that i think has to be addressed
nonetheless. I will be graduating from university in a couple of months, But what i can not shake is the mere thought of "succumbing" to lupus. Does anyone know the life expectancy of lupus sufferers, do we have a chance, or do we succumb to our diseases eventually. Please Please!! :?: :?: :?
05-03-2005, 02:10 AM
About 35 years ago, a study at John Hopkins University found that only half of all lupus patients were alive four years after diagnosis. However, by the late 1970's, 80-90% of all lupus patients were alive after 10 years. Do not be dismayed by these numbers. They DO NOT mean that Lupus patients only live for ten (10) years, what they mean is NO ONE HAS STUDIED LUPUS PATIENTS BEYOND TEN YEARS- but there are very many of us!!
So, this shows the dramatic improvement in the survival rate for patients diagnosed in the sixties and seventies. Today, the survival of lupus patients has improved even further. Several factors have combined to cause this remarkable improvement. Earlier diagnosis, recognition of milder forms of the disease and better use of tests have all helped.
While the treatment for SLE has improved and long-term survival has increased, it remains a chronic disease that can limit activities. Although severe sickness can occur, this usually results from the most serious forms of the disease. More often, quality of life is compromised by symptoms like fatigue and joint pains, which are not life threatening. The best way to control lupus is to be very careful to take all your medications as prescribed, visit your physician regularly, and learn as much as you can about lupus, your medications, and your progress. Be proactive in your care, be aggressive with your doctors and aware of your body.
Do not over stress yourself ....this will only serve to complicate your symptoms.
I, personally, have lived with lupus since 1985!!
I hope that I have given you some peace of mind and comfort
Peace and Blessings
05-03-2005, 03:38 AM
Thanx saysusie, that really was a big help. The reason i became so worried is cos i found out that a friend of the family died of lupus a couple of years ago!! :cry: Anyway, as always thank you for the the support and guidance, you truly are an inspiration to me :D
Peace, happiness and prodperity.
bye for now :!:
05-04-2005, 05:55 PM
My mother died of lupus at age 60. She was diagnosed in her mid 30's. She told me over her lifetime that she is sure she had lupus while she was in college in her 20's. So I'd guess my mother lived with lupus for 35 years or more. She was always careful to rest everyday and not over do it. I learned a lot about living with lupus from her. We can not do what other people do. We have to pace ourselves and avoid stress if we want to live to an old age. Still, this is no garantee that we won't have complications and have a much shortened life.
My Dr told me if I take care of myself that with new meds etc I should live atleast a min of 5 years longer than my mom. Here's to 65! ha ha
I have a secret hope that my kids marry and have children in their 20's so I can see their big days and enjoy my grandkids.
Take it one day at a time!
05-10-2005, 02:48 PM
i found much help and comfort from a famlie friend of mine. she was told she had lupus when she wasin her 20's, she is 76 now and doing good.
there are alot of things out there to scare us, i try to stick with the good news.
05-10-2005, 03:21 PM
I must admit I had a fear the Lupus or Sclerdoma will eventually take my life, but then again I didnít believe last year I would be alive today. I was on oxygen 24-7 and cytoxan was not working like doctors expected. I was in so much pain I stayed in bed 75% of the day. But now I up and out almost everyday and I only wear oxygen to sleep (it's called oxygen therapy) Through it all I realized we are all going to die of something but if we worry about Lupus taking our life we will never enjoy life. So now I live everyday to the fullest and don't take anything for granted.
Another inspiring story the woman who started the Sclerdoma Foundation was only expected to live for two years but twenty years later she is still here getting the word out about the disease.
I am 51, Lupus cost me my job but I do not even think about it ending my life. We must enjoy every day because nobody knows what is around the corner.I suppose I am lucky getting Lupus at an older age. There is less chance of major organ damage in older sufferers.
I intend to live for a fair while yet, just not as mobile as I used to be.
06-06-2005, 08:24 PM
My grandfather on my father's side died of the disease in the 60's. My whole family is terrified of my recent diagnosis because of this (especially my dad, who was there by his side) but after doing research, I was able to placate them somewhat with some of the stats cited above. So, I totally understand how scary it is to have a family member who has already succumbed to the disease - but we have to also remember that we are not them and we are not necessarily doomed to repeat history. I have no intention of following in grandad's footsteps in that regard! Be well!
08-20-2005, 01:24 PM
I think this is a great topic, as it is something we all have thought about at one time or another after diagnosis. In a way I feel blessed to have been diagnosed with lupus young, because no matter what happens to me, I really appreciate each day, and feel in a lot of ways a lot happier than I did before (maybe because since I have more perspective now, it takes less to make me happy!) I don't take things for granted, like many of my friends and most people in their 20s do. In this way, I think I'm getting a better quality of life, even if my quantity is shorter in the long run.
08-20-2005, 04:57 PM
This is a bit of a sad topic, unfortunately, I have something to share as well.
I'm a nurse, so I know that statistically, Lupus sufferers can survive into their 80s just like everyone else, its just that noone has studied it yet!
My dad was diagnosed with SLE after 10 years of illness when he was 41. He unfortunately succumbed to the illness, dying of an MI secondary to Lupus when he was 49.
I'm currently under St Thomas' Lupus Clinic myself awaiting a diagnosis and to be honest, my dad's story doesn't make me even slightly more scared about a pending diagnosis, infact, quite the opposite. We are all individual, as is Lupus... I plan to fight it with all my will :D
08-20-2005, 07:22 PM
Just like lil_ magic99 said, there is potential for any number of illnesses to get us. I don't think lupus is any more or less frightening than cancer for example. I just recently lost a childhood friend 40 years old to cancer. Also, another friend of mine in his early 50's is very serious with cancer of the stomache which has spread. I guess there are no guarantees in life, but from all I've read, those with lupus can live a very normal life span. I do my best to keep a positive attitude. It's less wear and tear on the tired lupus body!
08-21-2005, 01:05 AM
I have been having the same concerns... And though, I KNOW that people can and do live long lives with Lupus, just the prospect of this thing literally taking my life, (Though somedays all I say is "I want my life back") scares me to no end...
Hit me with a bus, rob and shoot me, ANYTHING else, and death really doesn't freighten me... But, for some reason, the thought of dying from this TERRIFIES me.... And I know that it shouldn't... THAT'S the weirdest part... And no matter how many people tell me how many facts about how long people live with this, the fear is still there... For me anyway...
Anyway, I am very glad you brought up this topic... Thanks!
08-21-2005, 05:38 AM
This is a really interesting topic. I can't imagine that there are any of us who have have lupus that hasn't been scared or wondered if we are going to die because of it. I think about it most when I am in a really bad flare. When lupus seems to take over my whole body and I am in misery I can't help but think that someday this thing is going to take my life. On the other hand, the statistics can be comforting, knowing that most people with lupus can live a relatively normal life span. I have an aunt who was diagnosed at a young age and she lives a fairly productive and normal life (she has been in remission for a while).
For me, by the time I was diagnosed it was urgent because I was, in fact, dying. My organs were shutting down, and it seemed to be over. The fact that my spiritual life had always made me able to handle illness and death without fear meant that the need to immediately make my peace with dying at 40 was much easier than it might have been for someone else. After I did so, it was important to get well not to avoid death (someone no one can manage to do!) but to stabilize enough to once again enjoy life, even though my life was altering daily from a sort of "super-woman" type of life to a quiet, more restricted type of life. I had to stop doing things I'd just reached my peak of proficiency at--making films, for instance, my great love, about to go from short films to features, and to give that up was painful and hard to bear on a day to day basis. How I gradually did so was by allowing my path as a Healer, which had been secondary to my life as an Artist, take precedence, so that I was able to find great satisfaction in something else. Then I began working in other media, so my creativity well has never gone dry. What's worse for me than the thought of death is the thought of a useless life. I have been of use to others, in service to others, all of my life, even as a director (there are many ways to be that in any job--mentoring others, giving others the chance to do their best work, doing work that is, in itself, meaningful, which as a filmmaker means making films that aren't empty excercises in style, nor cloying "message" movies, but ones that illuminate the process of being human so that your viewers/actors/crew all grow through the process of doing the work or watching the work). To die is easy. To live a useless, self-obsessed life is hard, at least for me, so that is my goal--to find ways to keep giving whatever I can to whomever I encounter.
Lupus is weird, in that there are things that can kill us quickly--the pericardial sac filling with fluid and stopping our hearts, severe kidney disease, which will kill anyone who refuses transplants (or accepts them, then rejects the kidney). It can also hang around, limiting but not killing us (even on those days when, admit it, we sort of wish it would), for 40 years. So as an Indian, for me it's always "a good day to die," and my best advice to those grappling with this is to try to really feel that way too, because it will come someday, somehow, so it's always a question of "when," not "if."
Making your peace with it doesn't mean succumbing to the disease, just to the fact that we live on the physical plane, and that one of its laws is that all living things die. We have choices about where, and even how if it comes to that. For instance, I have decided that I absolutely will not die in a hospital. Unless my being there means that I'll be able to go home and live in a relatively well state, I won't stay, but will go straight home and meet death as gracefully as I can. I will not be an object filled with tubes and hooked up to machines surrounded by strangers and an atmosphere of barely-controlled hysteria. I have been at deathbeds, many of them, and I know there's nothing to fear, so I'll be in my own bed, in my own sheets, under my favorite quilt, and try to have as many loved-ones with me as can manage to be there. It may be only my cat at my side, but still, I'll be at home. That's a choice that helps one to feel in control of those things that are controllable. Making a living will, and an actual will, also helps, as the knowledge that your affairs are in order and that no one will have to make last-second, difficult choices for you, or will fight over your grandmother's gold locket, is a comfort. And for anyone so inclined, please don't indulge in revenge when making your will. I know so many who have, and at the last second have regretted it, only to have it be too late. Also, leave a copy someplace where someone else can't use it for revenge--my own step-mother burnt my father's will while he lay in the hospital, just dead, so that she could finally do what she'd always wanted to do--cut my sister and me out of my father's life, leaving her sons and herself rich and the two of us with nothing. Because he trusted only her, she could also dispose of the copy in the safe deposit box, so think of a disinterested party and take no chances if there's money and any bad blood in your family. I had feared it, but was certain my Dad had, too, but he always believed her words, rather than actions, so take care (a little cautionary tale), and a quote from Lord Peter Wimsey, "There's something about the words, 'I devise and bequeath' that brings out the worst in some people." Actually, that may be a paraphrase--I'll check later.
So make your peace, make your choices, do what you need to do in the paperwork department, take a deep breath, and then...
...just go on with your day.
08-21-2005, 09:14 AM
That was inspirational, comforting and educational; but mostly - inspirational. I truly love your attitude about living and about making peace with life and death!
My daughter was 24 when she died from lupus complications and I think she had some idea that she was dying. I do believe that she made peace with the idea (even though her death was sudden and unexpected).
We have the capacity to do that for ourselves and some of us, as witnessed in the forum many times, even hope for an end to our pain. However, it is our loved ones who need to be comforted and assured.
When I was diagnosed in 1985, I was very, very sick and told that I was not going to live to the end of the year. I looked at my life and prepared myself to go with no regrets, until I looked into the face of my children and realized that my death involved more than just me! That was an eye opening experience.
So, my irony is that I have lived many years with this disease and my beautiful daughter died! So, I am very conflicted about the entire issue, wishing that I had died instead so that she could live out her life and reach her potentials!
Therefore, I truly appreciate your spirit, your wisdon and your faith. I can see that YOU are going to be a great comfort to me!!
THANK YOU SO MUCH
Peace and Blessings
08-21-2005, 01:58 PM
what an inspiring thread this has been.
I too worried when I was first diagnosed - "will I be dead a year from now?" that was a few years and a lot of reading ago. I also learned that 80% or so of us live a "normal" lifespan now days, as treatments have gotten better.
I've learned not to take a day or a friend for granted. Each day is precious and holds mysteries that we need to uncover and treasure. Each person I meet is a unique and special addition to my life.
Like Awi, I've realized that if we live fully and mindfully, any day is both a good day to celebrate life, and a day in which I could accept dying.
Thank you all for sharing your thoughts and stories. We all grow and learn from each other - and I have certainly learned from you in this wonderful thread!
08-21-2005, 09:39 PM
After reading all the replies everyone has posted, I feel ashamed of myself for thinking of lupus as an obstacle on my path to promote in the business world! I know work is important but to me, I get obsessed with it. I recently left a job I really enjoyed to take a new opportunity. I had been commuting and as our son just left for college, I was afraid to be over an hour away if my husband had an emergency (he's a diabetic). I took the new job to be able to work where I live and also to slow down a bit due to the seizures with lupus.
When I started having seizures, I had no idea why. My rheumatologist was out of town on vacation so I got in to see a neurologist. He determined that these were indeed seizures and not just panic attacks like my PC told me. I got on seizure meds and was finally able to get in to my rheumatologist. She ran tons of tests and then 3 days after I started the new job, she called me and said I did not have MS (like she initially thought) that I have lupus of the brain. She said very few lupus patients have this and she only has a couple in her practice. I told her I did not have time to deal with this right now, that I was training in AZ and had to fly back and forth for 7 weeks. I wanted to know if this could be treated with prednisone until I get back and have time to deal with the problem. She said "You don't understand. This can kill you and you need immediate treatment". Of course I tried to argue and she said the seizure meds just cover up the problem but my brain is extremely inflamed and I must start cytoxan therapy immediately.
After being in shock a few days after receiving this call, I started doing research. I did start cytoxan last month and my next treatment is next Sat. I haven't lost my hair or gotten sick. I do have almost constant headaches and sometimes they are so bad, I want to scream but I know I can overcome this. I'm taking one day at a time and listening to my body and resting when necessary.
08-22-2005, 12:31 AM
This is truly inspiring! Reading these posts have given me a little peace. I am so sorry about your daughter, Saysusie. My heart is with you. All these life experiences that have beenshared on this thread have given me some hope. With my daughter just being diagnosed 2 months ago at the age of 12, I wanted to ask her rheumy what her life expentancy was but to affraid to hear the actual words come out. Bringing it out here, feels safe, I am not as affraid. Thank you one and all.
Hugs and prayers to all of you very courageous people. :angel:
Wow. I had no idea someone could get this at such a young age. I'm so, so sorry. How did she get it, did anyone have an idea? No one seems to know why we get it, but I'm wondering, in one so young, was there an obvious cause? How is she handling it? If you're worried about life expectancy, does that mean she's terribly ill already? Perhaps, since they've caught it so young, you can help her with things like diet, accupuncture (including a good Chinese herbalist), alternatives to heavy medicine. For so many of us, we don't get a diagnosis for so long (7 yrs. is average), that by then we're so sick we need the big guns right away. It would be good if her youth meant alternatives worked, as they often do on young people.
I wish you both all the best, and hope that she's strong and can stay hopeful. Lupus plus puberty. What fun...
Good luck to both of you, all of you in the family; I hope this site helps.
08-22-2005, 03:46 PM
Awi, thanks for your good thoughts. As I am learning, lupus attacks for no particular reason. To answer your questions though, there is no family history of lupus. A cousin of mine was diagnosed with MS about 6 years ago, he was 30 at the time. There is arthritis, but that's about it. She doesn't fit into the common categories for lupus.
She was gravely ill about 2 months before the diagnosis. She had 1gram pulse treatments of Methylprednisolone (sp?) for 3 days then put on 40mg. of prednisone, 200mg of plaquenil, 1500mg. calcium, 400IU of vitamin D , 1 mg of folic acid, 81mg aspirin (she has the anticardiolipid antibodies. Her myositis has been diabilitating at times, but she is improving. She hasn't been at school since the begining of May, and is looking forward to seeing friends once again, as she is starting high school next month.
I just want to thank you for your genuine thoughtfullness.
Hugs, and prayers, mommymc :angel:
My wife was diagnosed with Lupus when she was 16. She just made it to her 30th . She wasn't happy to turn 30, but she did. She has been doing pretty well lately. She won't let this disease win. Currently she is working full time as a nurse, while on a mild dose of chemo. (Not the strong stuff yet.) Hope this stuff puts the Lupus away for a while. Has anyone tried any type of Chemo for their Lupus? Good results ???
11-03-2005, 11:08 AM
Morpheus...do not worry. I have had lupus since I was about 10. Diagnosed at 24yrs. It took a long time before I felt sick. I am 41 now and I started having problems 4 years ago. I did not take care of myself because.......I didnt think I was sick. What I mean is...I had no symptoms so why not burn the candle at both ends. Take care of yourself...do not party all weekend and not get your rest. Even when you feel good ...take care. You will be around for a very long time!
11-03-2005, 08:10 PM
Wow !!! You give me hope, kkgadro!! Athough I hate hearing about anyone being dignosed, at any age with Lupus, I love hearing about people who have (I hate to sound rudeor offend here, sorry) lived longer than the 10 years after being diagnosed with it that I keep reading about in books.
It makes my spirits rise and my hear flutter to hear this, especially lately. I seem to battle the grief, and negative thoughts about not seeing my daughter turn 14 etc. I fight hard to get the negativisms out with 'happy thoughts', but at night in bed the 'bad dream' guys, get a hold of me.
Thanks for inspiring me !! You are wonderful!
11-04-2005, 10:07 AM
This post continues to draw me back to read it again and again.
Mommymc, I have no children, so I can only imagine the heart-pains that must come with a child being ill. My heart goes out to you, in comfort and in hope - for most of us, lupus is NOT a death sentence. It is a condition we live with. Some days comfortably, some days not so much.
This post reminds me to live each day for what it brings me - happiness, pain, joy, sorrow. Right now I'm dealing with more recurrent brain fogs than I'd experienced in the past, and my pain level is a bit high. My rheumy has ordered an MRI, but until that is done and read, I'll just do what I can to get my rest and not worry. Life brings what it will.
Thank you, every one of you, for this post. It is a reminder to live mindfully and with gratefulness for each day of life we are granted.
11-04-2005, 11:11 AM
Thank you all for your words of encouragement and hope. I, too have been just trying to dismiss my new diagnosis and pretend that I don't have time for it. My family just doesn't understand and when I say I need help around the house or I am too exhausted to do things they look at me like I am crazy.
I have always been the dooer of the family. Sunday dinners. Kids and grandkids continually. Even minor holidays are celebrated with gusto. My house has always been clean and welcoming.
Now I get up and look around as I try to talk myself into doing the cleaning or the laundry when I am so shakey and exhaused that I have to hold on to the counter. Neighbors and friends can't figure out what is wrong so they all just seem to want to think that my old back injury is "kicking" up again.
The few friends that I have told about my Lupus diagnosis just have looked at me strangly. One said "oh, I only knew one person that had that and she died". Then they go back to thinking I should just be "me" again.
A few weeks ago I printed out Solesingers letter from a lady in Florida
"What you should know about me". It brought me to tears as it seemed
like I had written it myself.
I passed this letter on to family and friens and some seemed to get a teary eyed look others just blank like "yeah so"
My adult children are the hardest to understand. I realize this is a form of denial on their part but they look at me when they come over and go-
what's wrong-you sick or something. Or wow--you didn't even get ready for Halloween. Maybe their denial is connected to my own denial.
Sometimes I feel like this is a bad dream that will go away.
Other times I am so grateful to have the diagnosis as trying to pretend everything was ok all the time was so exhausting. Now I can just tell myself that it is ok to not be able to do what I once could.
Thanks for all of the love, warmth and encouragement that you all give to each other. Reading your posts lets me know I am not alone.
11-05-2005, 10:50 AM
One of the most important reasons for me to have this board is make sure that we all know that we are not alone: That there are so many who understand what we are going through, what we are feeling, why we are confused, angry, depressed or frightened.
I, personally, want to thank each and every one of you who support this forum and who have taken the time to be kind, informative and supportive to one another. Each day, I come here and read the posts and I am brought to tears by the overwhelming kindness and caring that I find here.
I wish you all the best!
Peace and Blessings
12-22-2005, 12:25 AM
just adding my two cents worth.
I was dx'd at the age of 9, I'll be celebrating my 32 birthday next month. Going through a bad flare now, but fighting through it! 22 years and counting!
12-23-2005, 01:40 PM
I am 42 and was diagnosed with SLE around three months ago. I do realize that there is no cure to the disease; however, we can die anytime. That is not a concern of mine. I live each day like it was my last and the thought of dying does nothing but make me realize that there is a God. One that loves me and is here every day that I go to him praying for strength and endurance. I knew several people who have passed from Lupus, however, I only concentrate on the ones like us that are living with it.
I thank you all for the support and just knowing that I have a supportive husband, family, friends on and off line, only makes my journey easier.
12-25-2005, 09:26 PM
I look at it this way, take it as you will. God put me "here" for a reason, and who knows for sure why. I just never ask "WHY ME" or "HOW LONG DO I HAVE". That bothered my family and friends for a long time, but then I told them...hey, I could be walking accross the road and get hit by a car tomorrow!!! If we spend all of our time being scared of death and when and how we will die, we will never truly live!!!
I hope you all had a very Merry Christmas!!!
12-27-2005, 07:03 AM
I have two small children and their dads have split, I don't want to think about it, but sometimes I just want to get it over with. If its gonna kill me I don't want to go through the daily pain that I go through. I hurt.