Living Life With Lupus Nephritis

The beginning of hardship: the final...I hope.....

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The nice kidney doctor gave me some scary news; I needed a kidney biopsy. I never had this type of procedure before so it was pretty scary to me. I had to be admitted to the hospital for the biopsy and because my potassium was incredibly high. Also, I wasn't aware of it until the end of my uncomfortable stay in the hospital, but I needed a bone marrow biopsy as well. During my hospital stay, the doctor who prescribed me Prednisone increased the doseage to nearly 60mg from 50mg. I promise you that this increase in Prednisone changed my life for the worse to my mind and my body. Unfortunately I had to celebrate my 21st birthday in the hospital back in 2010. Only a few of my family members brought in get-well cards and balloons. I was very pleased but I wish that more of my family could have supported me in those desperate times.

I was finally released after the bone marrow biopsy procedure, which was the most incredibly painful thing I ever felt. Strangely, I was discharged to one of my sisters instead of my Mother. I asked myself, "Why didn't Mother come get me from this crazy place? Doesn't she still care about me?" But now that sister of mine, who didn't before, plays a huge role in my life along with her highly dedicated husband. When I returned home my body was far too swollen to fit any of my shoes sitting in the closet. My sister(the one who took me home with her for a night) generously gave me a pair of her own shoes but sadly, I could not fit into them because I was so swollen.

Suddenly, EVERYTHING had hidden meanings to them. I thought I heard my favorite brother's voice from the kitchen as I lay there on Mother's couch, in her house alone, trying to sleep. I hadn't slept in a week. I looked like I got into a street fight. I tried "remedies" that one of my aunt's suggested to me and Mother but I began to feel more insane until one day I totally went mad and had a type of psychotic episode in Mother's bathroom; I tore off all of my clothes,screamed at the top of my lungs, and crawled on all-fours like a deranged lizard! Luckily, both of my sisters were there and one of my uncles to help my Mother get a hold of me. They honestly thought I was possessed by a demon! I was taken away to a psych ward where a received mental treatment for my mind.

After that I was in and out of hospitals for my body and getting innumerable tests done until the doctors finally came to the conclusion that I must have SLE(Systemic Lupus Erythematosus ). I also noticed that I began to literally leak fluid from my belly and legs. Mother was so frightened that she did not know what to do. My sister(the same one who came and got me from the hospital after the bone marrow biopsy) brought me into the hospital, along with her husband, and was told that I could not be admitted.

So I ended up leaking all the time, wetting all of my clothes, I could barely walk, and most of the time I was at home alone. Mother was grieving for the loss of her own mother and she could not stand the sight of her youngest daughter(me). My sister decided to step in and let me stay at her house with her husband and four children. I was so relieved to be among other people. I had to go in and out of hospitals again though. Then I was told I had acute renal failure, after, yet, another kidney biopsy.

My sanity began to return to me and once again I could do simple things like bathing and clothing myself. About a year ago I had suffered from Grandma seizures three consecutive times as I was taken to the hospital. My own estranged father flew from Florida to come see me! I was thrilled. At this point, a female doctor, with such a concerned voice that I have never heard before, told my father and sister that I WILL die if I do not receive dialysis treatments right away. There was not even time for tears, maybe except for the ones I shed as the surgeon implanted a catheter in my right thigh. Then it was moved to my neck. Now I have a fully developed fistula in my left arm(its so unsightly now).

I'm just 23 and I've come so far. I now go to dialysis three times a week; monday, wednesday, and friday at Riverwood Davita. The dialysis technicians there treat me like family and my new kidney doctor truly cares about me. I could not ask for a nicer bunch of people. (Even though my own personal dialysis technician is a bit pushy sometimes. :[ )


P.S. Always take your prescribed medications. If you experience side-effects, TELL YOUR DOCTOR! I am not trying to frighten patients who are prescribed Prednisone. I am just letting people be aware of my own personal experience on it. I currently am taking 15mg of Predisone and its helping a bunch. So continue your fight against lupus, comrades and farewell.....for now......
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Comments

  1. A. G. Moore's Avatar
    You are brave and that is good advice. Medicine, no matter the side effects, has to be taken to fight this ruthless disease. I think it's great that you are not just concerned with what happens to you but care to use your experience to help others. I admire you.
    A. G. Moore
  2. serand4's Avatar
    Dear Survivor, so much of your story mirror's mine. Right down to the psychotic break. The blessing of family is sometimes unbelievably reassuring. I'm with you, fight until your doctor listens. My bladder shut down about a month ago and I was so sick I didn't even notice the lack of urine for nearly a week. Instead of leaking from my limbs, I simply cried nonstop. I couldn't say boo to anyone without breaking into tears. I had to get the fluid out somehow, I suppose. I have my liver biopsy coming up as well as other studies. SLE is an evil and deceptive disease. All the more reason to fight dirty! I'm in it to win it. Thanks for your story!
  3. bless's Avatar
    Dear Survivor,

    Thank you so much for sharing your story.I've just gained new energy upon reading it. I have lupus too, I had it when I was 18.Now I'm 29 and I will be 30 on Oct 26th.I'm living a normal life but I'm still complaining about my condition.Now I've realized that I have no right to complain.
    Be brave.Take care!

    Bless