Saturday, October 16, 2004

Lupus Survival

      Today I am providing you with the FACTs that most of us with lupus worry about on a very regular basis. Lupus used to be considered a "death sentence" because the prognosis was so dismal.
       The survival rate for systemic lupus has greatly improved over the past two decades. 
      What statistics fail to reveal is the quality of life issues that people with lupus must face.
      No matter what the level of severity of the disease... you brush up against mortality much sooner than most folks. And you really can not start thinking about your death in a very real concrete way without being changed.
      Here is something you may not be aware of. The systemic lupus that I am living with is considered mild. Yes, M-I-L-D. But, as you may have noticed... it is disabling.
      "Mild" systemic lupus simply means that my major organ systems are not under attack... thank God! "Mild" is not a reflection of the actual toll that lupus can take on someone's life. I have lupus in combination with several other health problems that makes my situation a bit more complicated than "mild" systemic lupus.
       Yes, I do know people with lupus who work. What the statistics fail to show is that (at least with the people I know)... work is about the only thing a lupus patient is able to do... there is no energy for anything FAMILY, SOCIAL LIFE, RECREATION, TENDING TO YOUR HOME, HOBBIES... quality of life issues.
      So many people with lupus who push and push to work... suffer greatly.
      Some people with lupus are able to find the balance by maintaining part-time employment... but, once again with lupus being so unpredictable, it makes it really hard to be consistent the way a job requires one to be.
       I had to stop working when the lupus effected my ability to concentrate, think clearly, multi-task, and a car. I got in a car accident driving home (exhausted as usual) from work one day. I was in several near misses and actually was pulled off the road twice by concerned drivers who informed me my driving stunk.
      Thank you so much lupus.
       And I will stop here for now, so you can read the prognosis stuff. I just had to throw my two cents in before we hit the numbers.  

Prognosis of Lupus
About prognosis: The 'prognosis' of Lupus usually refers to the likely outcome of Lupus. The prognosis of Lupus may include the duration of Lupus, chances of complications of Lupus, probable outcomes, prospects for recovery, recovery period for Lupus, survival rates, death rates, and other outcome possibilities in the overall prognosis of Lupus. Naturally, such forecast issues are by their nature unpredictable.
Prognosis of Lupus: Normal lifespan possible for many patients. Remissions and relapses common. 5-year survival about 97%; 10-year survival about 90%. (NWHIC).
Prognosis for Lupus: The prognosis for lupus varies widely depending on the organs involved and the intensity of the inflammatory reaction. The course of lupus is commonly chronic and relapsing, often with long periods of remission. Most patients with lupus have a normal lifespan with periodic doctor visits and treatments with various drugs. Many of the more serious problems do not affect most patients. Death is usually caused by renal failure or infection. 1 ... The good news is that with the correct medicine and by taking care of themselves, most lupus patients can hold jobs, have children, and lead full lives.
5-year survival rate for Lupus: It is estimated that 97 percent of individuals with SLE live at least five years
10-year survival rate for Lupus: 90 percent live at least 10 years after diagnosis
Complications: see complications of Lupus 1

Complications of Lupus
About complications: Complications of Lupus are secondary conditions, symptoms, or other disorders that are caused by Lupus. In many cases the distinction between symptoms of Lupus and complications of Lupus is unclear or arbitrary.
Complications list for Lupus: The list of complications that have been mentioned in various sources for Lupus includes:
Complications of Lupus: The following systems in the body also can be affected by lupus.
  • Kidneys: Inflammation of the kidneys (nephritis) can impair their ability to get rid of waste products and other toxins from the body effectively. Because the kidneys are so important to overall health, lupus affecting the kidneys generally requires intensive drug treatment to prevent permanent damage. There is usually no pain associated with kidney involvement, although some patients may notice that their ankles swell. Most often the only indication of kidney disease is an abnormal urine or blood test.
  • Lungs: Some people with lupus develop pleuritis, an inflammation of the lining of the chest cavity that causes chest pain, particularly with breathing. Patients with lupus also may get pneumonia.
  • Central nervous system: In some patients, lupus affects the brain or central nervous system. This can cause headaches, dizziness, memory disturbances, vision problems, stroke, or changes in behavior.
  • Blood vessels: Blood vessels may become inflamed (vasculitis), affecting the way blood circulates through the body. The inflammation may be mild and may not require treatment or may be severe and require immediate attention.
  • Blood: People with lupus may develop anemia, leukopenia (a decreased number of white blood cells), or a decrease in the number of platelets (thrombocytopenia). Some people with lupus may have abnormalities that cause an increased risk for blood clots.
  • Heart: In some people with lupus, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it (pericarditis), causing chest pains or other symptoms. Lupus can also increase the risk of atherosclerosis. 
TODAY: November 2011

I was reading through more updated prognosis statistics last night on the internet.
 Since I posted this entry in 2004, the rate of deaths from lupus have increased in the African American population in the U.S.
The 20 year survival rate for lupus patients is 80%.

And as for myself, I now have moderate to severe lupus. The lupus has attacked my lungs, blood, and central nervous system. 



derasta said...

Thanks for adding all that information about lupus...many times unless you are suffering from a certain disease yourself you do not know about the details of what some diseases I appreciate all this information to understand what you are going thru...

As far as the movie you asked what I thought about...I found it thought provoking..

mzgoochi said...

Thank You Loretta, that was very kind of you to mention me.


zydekosue said...

Thank you for all the useful information. I thought I must overreacting to my Lupus diagnosis when people said, "you can work when you have Lupus." and "people with Lupus can lead very full lives." While I felt like I was already dead before my work day was half over and my kids got cereal for dinner. I notice the entry I'm replying to it quite outdated and look forward to reading more current entries.  Susan

lrttklly said...

Hi Susan,

Thanks for visiting my blog!

I wrote that entry just a little under four years ago. I had entered my second year after receiving a confirmed diagnosis. I was VERY depressed and grieving deeply. That being said... I meant every word of that entry... and still do.

No, you are not over reacting.

I believe that medical professionals try to stay upbeat; positive thinking and keeping your fighting spirit up do help to meet the daily challenges lupus throws at us.

But, when you are dealing with the shock of the diagnosis, and the subsequent grieving that must follow...

well, people usually fail to realize that they need to validate one's feelings.

Saying "people with lupus can still work..." can really feel dismissive when one's suffering is so tremendously.

I am wishing you a special blessing today, and I thank you once again for helping me by posting a comment.


Loretta Kelly