Tuesday, February 26, 2008

Lupus Vasculitis and My Daughter

Systemic Lupus Erythematosus (SLE or just lupus) is a devastating, systemic, autoimmune disorder in which the body's immune system literally attacks one's own cells. It is incurable and in some cases unmanageable. It can attack any part of your body, from skin to the heart, or multiple systems at once. My mother had it. My sisters have it. My best friend has it. My daughter has it.

One of the many kinds of manifestations is vasculitis. The body can actually be allergic to the lining of the arteries and veins. It can actually attack those vital highways of oxygen and nutrients. The intestines are rich with veins and arteries, and artery/vein junctions. My daughter's intestines are in trouble. She has lost nearly 4 pints of blood, and counting. She is being closely watched, and I wouldn't be surprised if she's moved to ICU. My gastroenterologist is seeing her. The surgeon who took care of me after my intestinal bleed is taking care of her, too. They are preparing to do more films and blood work before deciding what course of treatment to take.

The Lupus Foundation of America's site has this to say about possible outcomes for vasculitis:
There are various outcomes for people suffering from vasculitis.

1. For many patients, vasculitis, especially if confined to the skin, may be annoying but never life-threatening. For those individuals, life can be normal-or close to it.
2. On the other hand, a small number of people have severe vasculitis involving major organ systems. In these cases, damage can occur so rapidly that treatment does not have time to work or the condition may be resistant to treatment. An attack of vasculitis can be fatal or permanently disabling for affected individuals.

For the vast majority of people with vasculitis, treatment is very effective. However:

* the vasculitis may disappear only to reoccur later and require treatment again OR
* the vasculitis may be suppressed but never really go away, so that some ongoing treatment is always required.

She could develop gangrene in the diseased section of her colon. She's already lost a foot of it due to intussuception (in which a section of her small intestine randomly telescoped and released over and over). She's only 24. Have I told you that?

I'm just glad that I moved her back in here last week. I'm glad she's seeing the best doctors I know. She has no insurance, though, so this tab will just be added to all of the other ones. If we're lucky, the doctors will rule that she is disabled, and I'll be able to put her on my insurance. If not, well, they won't get paid at all I guess. What can you do? This damned non-healthcare system we have in this country leaves people like my daughter to fall through the cracks.

Lupus has so many ways to express itself, like an overly creative evil genius. My daughter has skin, mouth, heart, kidney, and now gastrointestinal involvement. All of this at her age doesn't bode well. I am scared. My husband is scared. I guess we needed our little recent getaway to prepare us for this.

Please keep her in your prayers, if you pray, in your thoughts, if you don't pray.

Despite all of our ups and downs, she's our daughter and we love her dearly.

I'm off to cook dinner and head to the hospital. I want to sit with her and watch old episodes of Law & Order. I want to talk to her about nothing. Who knows what tomorrow will bring.



david mcmahon said...

My children are my most precious parts of my life, so I know what you mean. I'll definitely keep your daughter in my thoughts and prayers.

Thank you, too, for the generous comment on my blog.

Coal Miner's Granddaughter said...

Oh. Wow. Hon. I'm so sorry that your daughter is having to go through all of that. You are all in my thoughts and prayers and I hope she recovers.

Love, Me

Momma said...

David, thanks for your prayers for my daughter. Hopefully she will pull through yet another horrible situation.

CMGD, I will definitely keep you posted. She's having a colonoscopy today, so I'm probably going to take off early and head to the hospital.

Peace - D