01-21-2007, 01:29 PM
Hi. My name is Krista. I am 35 years old and live in Cape Cod Massachusetts.I was diagnosed with SLE about 11 years ago after my second child was born. I had not, until recently, experienced any thing more than my rash, and some fatigue. Things were manigable. Life was livable. Things are falling apart now. I'm not handling it well. I don't ike to talk about it to my family as their worry and concerns typically end up making me more afraid and upset. Does that make sense? Some months ago I started having blood in my urine. Genius doctors gave me a hysterectomy blaming the blood on polyps in my uterus. My hyserectomy was on october 10th 06. Things went ok. But to my doctors suprise my urine still had blood and protien in it, ect. So they decide that they are going to do some more tests and find that I have lupus nephritis.. Is there anyone out here who may be able to explain what this is in terms I can understand??? They prescribe some immunosuppressive meds... corticosteriods.. My rash has gotten OUT OF CONTROL. I go to the store and people will say, "what is that on your face?" The nerve of people, I swear. Acting like I had an accident with my blush brush or something.... I swear if I have to hear that question one more time ...... What exactly do you say when some one comments about your face being scaley and maroon.... Never mind that my skin is so raw and it is bleeding sometimes. The wind blows on it and i cringe from the pain. Wow... You all must think Iam such a baby. I am so sorry to let all this out. I dont know what to do anymore. Im so tired and I feel so bad for my family as I am constantly sick now a days. My husband (well we arent married but "boyfriend" just doesnt sound right...) is so supportive and I couldnt ask for a better father for our children, its not him.... Its me . Im afraid. I dont take care of myself, I know that is part of everything too.... Well, I will shut myself up now. I just needed to find a place to get some answers , maybe make some friends... Thank you in advance to anyone who has taken the time to read this.... and should any one reply, please know that I appreciate your time from the bottom of my heart.... :?
01-21-2007, 02:31 PM
Hello, Krista. I am sorry you had to go through a horrible ordeal with a misdiagnosis and unneccessary surgery. You must be scared, and angry too. In the simplest terms, lupus nephritis is a complication of systemic lupus that happens when lupus attacks the blood vessels and tissues that make up your kidneys. Each of your kidneys is made up of about a million units called "nephrons" - inflammation of the nephrons is called nephritis.
The nephrons are made up of clusters of blood vessels (each one called a glomerulus), each of which is attached to the opening of a small fluid-collecting tube called a tubule. Blood is filtered in the glomerulus, and extra water and wastes pass into the tubule and become urine. Eventually, the urine drains from the kidneys into the bladder through larger tubes called ureters. Each glomerulus-and-tubule unit is called a "nephron". So you may sometimes hear this type of kidney problem referred to as "nephrotic disease" or "glomerular disease".
In a healthy kidney, the membrane between the glomerulus and the tubule lets waste products and extra water go into the tubules (where it eventually becomes urine), while keeping blood cells and proteins in the bloodstream. It's a very complex filtering system that lets your kidneys filter about 200 quarts of blood a day, and make about 2 quarts of urine, But when this filtering mechanism gets damaged - by lupus or anything else - it can allow blood cells or proteins to leak out into the urine. Sometimes, it can interfere with your kidneys' ability to process waste products, so they began to build up in your blood. The loss of blood cells and proteins in your urine can also lower their level in your blood. One of these proteins, called albumin, is what helps your body draw excess fluid into your bloodstream so your kidneys can filter and remove it. When the albumin starts to leak out into your urine, there isn't enough in your blood, so excess fluid starts to accumulate, which can cause swelling of your feet, ankles, hands and face.
The good news is there are treatments available for lupus nephritis - several of us here on the forum have kidney involvement, and all of us will be glad to share our experiences, and walk you through anything you don't understand. But it's really important that you find a kidney specialist (called a nephrologist) who is experienced in dealing with lupus patients, and a rheumatologist to help you manage your lupus better. You can do this - lupus kidney diseaee is far more treatable now than it was even ten years ago. I don't want to overwhelm you with too much information right now - I know this is a lot to absorb, but there are many people here ready to listen and help as much as we can.