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lexis214
10-23-2005, 06:58 PM
With recent treatments, health care and medications, the diagnosis for patients with SLE have found that 80% to 90% survive ten years.
The above statement is what is written on the home page of this site. I don't quite understand this :? :? . I thought that 80% of Lupies could live a normal life with the advancement in treatments. Does any one know someone that has passed from complications of Lupus? I do not know any one else with this so I am so in the dark. I want to know what kind of things(complications)could lead to death??
I want to give my family accurate information but they get scared when they read something like that that is quoted above. Quite frankly it scares me pretty bad too. Please share your stories with me. Reading from this site is sometimes my only comfort. :)

I hate Lupus!!! It is like a piece of evil that I wish would just take a hike and leave us alone.
Sorry if I sound so angry, just not having a good evening. I haven't felt well all day today. I have this awful pain down very low in my abdomin. Kind of over where my uterus used to be. It hurts with every move I make. It takes me forever to stand up. I have to straiten up real slow..
Well, I will pray for a better day tomorrow.

Hope you all sleep like a baby tonight!!! :B-fly:

Angie

ClaireMacl
10-24-2005, 07:55 PM
Ok, firstly, Lupus is a new disease in terms of discovery, therefore, its difficult for people to tell how long one person will live or not, particularly in light of the very complex complications that a person with Lupus can suffer. I know people with Lupus who are in their 70s personally and although they aren't "well", they are doing ok and trying to enjoy life.

As to whether we know of someone who passed through lupus, well yes, my dad had Lupus from around his early 30s and died of a massive MI aged 51 with no warning. Now that's not to say that's going to happen to anyone else, its just that his sodium wasn't being processed correctly by his kidneys and caused this to happen.

Noone can predict how long one person will live with an illness, even terminal cancer - we've all heard of people who've lived years past the "six weeks to live" prognosis.

Please stop worrying about it and try to do your best to keep yourself well, its all you can do in conjunction with the doctors to make sure your family get a full lifetime out of you :)

Cx

lupusgirl
10-25-2005, 09:39 AM
Hi

Ya i've heard the same thing but like with any disease it's 10% what you have and 90% how you take it, I'm a firm believer in natural and positive thinking, so I think we all have a fair shot at beating it, but I know it can be scary to think of it like that. My advice that's worked for me is not to think about that and not to read to much stuff, try to suround yourself with good positive people like the people here and take things one day at a time.

Take care

caro
10-25-2005, 11:10 AM
angie
i want you to relax about life spans and lupus. i was dx'd at 14. given 30 days to live at 22, and i'm now 42. we all haave a time to live and a time to die and nothing absolutely nothing will change that. not even lupus. i am still here. some of have passed away at way to young an age. saysusie's daaughter was one of those people who left us way to young and because of that she took her grief and started this forum. so something positive came from that grief. please look at the positives in your life and always try to remember .... there is life after lupus. we can and do continue to live. it's how we live thaat matters. help your family live with you not wait for you to die, we don't know when that will be. as for me , i plan on being here at least another 20 years.
caro

lexis214
10-26-2005, 03:56 PM
Thanks for all the good and positive advise. I do feel much better. I got a job offer and am supposed to start tomorrow. I am worried because it is a little bit of a drive(45 min/1hr)and I have such a hard time keeping my eyes open when I get in a car. I will have to alot extra time to pull over if I get to sleepy. I feel that I must take this offer because the drive will only be temporary for a couple of months untill a new construction site comes up closer to my house. I am going into New home sales and have previously(for 14 years) been in the property management industry for apartments. The stress in managing a property has gotten to be too much for me so I needed to make a move.
I guess i am a worry wart with this Lupus diagnosis because it is all so new to me. I have no idea how long I have had it but it has been long enough to damage a valve in my heart. I had unexpected spur of the moment heart surgery in Sept 2004 to replace a valve that wasn't working anymore at the age of 34. At that time I did not know about the lupus or what had caused the damage. I do feel relieved now to have an answer as to why I have been so sick with so many diferent diagnosis for the last 5 years. At least now I don't feel that people are whispering about me all the time like I am some hypocondriac. I am sure we can all relate to that one.
Well, again I say thanks to all for the words of wisdom.
Have a great night with butterfly dreams and angel kisses!!!

Angie
:B-fly:

lexis214
10-26-2005, 04:40 PM
I thought you guys might relate or have some answers for me.
When I try to fall asleep and start to drift away I start twitching.. It is real bad and I twitch alot. It scarred my husband at first but he is used to it now. Sometimes i feel him put his hand on me and just give me a few pats like he is telling me I am allright?? :?:
Anyone else do this or know what makes us do it??? It is a very uneasy feeling and a little scary feeling making sleep that much harder to come by.

Angie

SoleSinger
10-26-2005, 05:40 PM
I get that sometimes... But, not really when I start to fall asleep... Usually, it happens after I have been sleeping and it wakes me up... Like you know when you have a dream that you're falling and you wake up? That's the kind of feeling it gives me... and once I wake up I stop twitching...

Ariel
10-27-2005, 06:17 AM
[quote]With recent treatments, health care and medications, the diagnosis for patients with SLE have found that 80% to 90% survive ten years.


My rheumy told me my diabetes would kill me before the lupus did and my diabetes doc said I would get hit by a bus before the diabetes killed me.

The "10 year" thing has to do with how scientists do longitudinal studies. It doesn't mean ONLY 10 years. It's like the 5 year survival mark for cancer. A statistically significant number in the given population will die within that marker so odds are those who make that marker will not die of their given condition.

An 80%-90% 10 year survival actually means that lupus very likely won't kill you.

Ariel

Missy
10-27-2005, 03:19 PM
This quote is so cute - it will keep me smiling all day (everyone jokes about how anybody, anytime could get hit by a bus):

"My rheumy told me my diabetes would kill me before the lupus did and my diabetes doc said I would get hit by a bus before the diabetes killed me."

catlady4520
10-27-2005, 06:15 PM
I know what you mean about twitching when you're falling asleep. I've had that alot but I also have lupus of the brain and just recently stopped having seizures due to seizure meds and Cytoxan. Can't really give advice other than to say go see your dr and let him know about your symptoms.

Lyssa
10-30-2005, 10:15 AM
My sister had Lupus attack her heart and had open heart surgery at 28 and died of a heart attack at 38. My aunt however has Lupus attacking her liver and is some how doing well on the plaquinal and shes like 50.

Lyssa
10-30-2005, 10:16 AM
My sister had Lupus attack her heart and had open heart surgery at 28 and died of a heart attack at 38. My aunt however has Lupus attacking her liver and is some how doing well on the plaquinal and shes like 50.

Saysusie
10-31-2005, 07:44 AM
HI;

In Re: Does any one know someone that has passed from complications of Lupus?

This site is dedicated to my daughter who succumbed to complications of Lupus in 1999.

In Re: 80% to 90% of people with lupus survive ten years
Like Ariel said, that is a marker. There have been studies on people who have had lupus for up to 10 years and a 80% to 90% of those studied survived up to 10 years. The studies have not been conducted for those of us who have survived 20 to 30 years so far. But, I would venture to say that if that particular study were conducted, it would also reveal that 80% to 90% of us survived over 20 yrs. Basically, the chances of dying from lupus are pretty small - but, as in the case of my daughter, it does sometimes happen!

Peace and Blessings
Saysusie

lexis214
11-01-2005, 06:40 AM
Lyssa-
So sorry to ear about your your sister. What kind of damage did she suffer when the lupus attacked her heart? I had my matral valve stop working therefor allowing blood and other fluids to back into my lungs causing me to have severe shortness of breath.
On a positive note- it is wonderful that your aunt is doing well and responding to the meds.
Saysusie-
I am very sorry to heat about your daughter. Do you have her story posted anywhere? I would love to read her story.
I want to thank all of you for sharing your stories with me!!

I do need to see my Dr and let her know about the twitching that happens when I try to fall asleep.

Have a wonderful day everyone!!

Angie :B-fly:

Saysusie
11-05-2005, 11:35 AM
Thank You Angie -
My daughter's story will soon be posted on this forum. I have been asked my many members to post her story, the administrator is working on it now!

Peace and Blessings
Saysusie