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Thread: Lupus Soul Survivor

  1. #1
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    Default Lupus Soul Survivor

    Hello, I'm Brian, 25. I've had Lupus since 17. I've overcame some obstacles w/the wolf. I'll tell yuh all about it, if you lemme.

    Right now I have my own apt, (finally) no job and am still on Social Security.
    When I was seventeen I had a job working with my ex-stepdad doing carpet cleaning using the two-step method. (scrubber, extractor) I was a workaholic - 14-16 hour days in the hot AZ sun.
    It came to a point. After treating my body like sh**, with a, 'I'll sleep when I die' attitude, my arms and face started developing the trademark Lupus rash, and quarter-sized puss legions. Later came the joint pain. Of course to me it was normal, even when knob-turning wasn't possible at some times. I couldn't keep up with my ex-stepdad, so I started working with the owner. When he saw that I was slowing down in my work, and not being as progressive as he thought I should be, he threatened to fire me. My choice was to work over the pain. [Even to this day I don't know how I did it.] Till it came to a day that when I urinated (excuse me ops: ) it came out pink. I went to tell my boss that I thought I was peing blood. His remarks were... (So, :x .. what do u want to do?) I said, well, I think I need to go to a hospital.
    My first two flares were just a test/practice for the big one. With flare #1, the only thing that went wrong was when I was put on 500mg or so of solumedrol. -I was only about 125 lbs. at 22 yrs- I became overdosed on steroids, and I got to see the true poison that steroids are. I was extremely angry.. throwing anything at anyone for no reason.
    After being rejected from the same hospital I've been going to since the beginning. They told me my insurance budget was over the limit, and had to send me to another hospital. (forget about continuous care huh?)
    It was at this hospital.. I got the worst care, and of course, as I'm sure most of you experienced, the doctors knew nothing about Lupus. In most cases here at this hospital, I had to inform the doctor (over and over) certain instances of Lupus and even what pills do what.
    My first near-death experience was sometime in later '02. I had gained over 50 lbs. in water. Which is inevitable when ur being fed saline the whole time for no reason, and lasix and i.v. lasix, and add the fact that my kidneys aren't working.
    So it came to to the point my body was filling up on the inside with poisonous urine. Here's a weird feeling.. I was lying flat in my hosp. bed
    when it looked like I was under water. The retentionous water was under my eye. (sry. :shock: ) Anyways, my lungs eventually collapsed one night due to excess water retention. Then went to ICU to have air forced into my lungs to open them back up. I was also then placed on ER dialysis.
    Things got better for awhile 'till summer '03, back in the hospital. This time it seemed as if Lupus really wanted to finish me off.
    One day I started having seizures (none of this I remember, I was informed from doc's and my mother who was always there. One day, I guess my doctor told me that I could go home today. He was trying to boost my mood or whatever, then, I guess my lab results came in, then he told me I couldn't go home. I was pissed (mostly medicinally.) After I knocked down the drip stand, I went into the bathroom, the nurses heard a loud thump and came in. I was lying on the floor unconcious. That's when I went into coma for about 3 days.
    After released from the hospital this time, I went to regular dialysis for about 10 months untill my loving sister let me {borrow :lol: ) her kidney.
    Now ladies, don't get me wrong here.... even though there are a few men who get this illness, we do get it much harder and stronger, and is harder to control.
    I have always maintaned a humurous additude about/with my condition. Today, ... still healing.... always. I have a strong love to help anybody with this illness as I've been through and seen alot. SHOUT OUT TO MAYO CLINIC/HOSPITAL, AND THE #1 RHEUMETOID SPECIALIST, DR. PAUL HOWARD M.D.
    thx for reading. if ur still awake

  2. #2
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    Hi, Brian - welcome. Thanks for sharing your story. I hope you and your sister are both doing well post-transplant. I'm glad she was a match. We do have other men on the forum, including one of the moderators, but he is seriously ill right now and unable to particpate much. But hopefully some of the guys will respond on the men's forum. Again, welcome.

  3. #3
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    Hi Brian!

    Welcome to the Forum!

    Thanks so much for sharing your story with us. I am SO sorry that you have been going through such a hard time...

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    Keep well and God bless!

  4. #4
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    Default Thx

    TY, TY

  5. #5
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    i have to ask ,, how bad was the dialysis????
    Fair Oaks California

  6. #6
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    Well, I was 23 or so when I was on dialysis. I hated it. I was the only one without white hair.
    First they put a central line in my chest. (one artery, one vein) They also, at the same time, put a catheder/shunt/fistula, -haha- in my arm. I had to use the central line the first 2-3 months so that the c/s/f could heal.\
    {A shunt is basically a flexy straw they put in your blood vessels. They also connect your artery and vein together so that they can become much bigger. That way you can get more blood filtered. The filter looks like some kinda hepa car filter or something.. Weird.
    Anywayz.. you sit in a hospital recliner chair, along w/about 25 other people. You are scheduled to come in; for me it was 3 hours, 3x's/week.
    Then, now that your artery/vein is huge by now, they stick a needle about 3x's larger than a standard needle. One needle going towards the shoulder, and one down towards the hand. The tech then turns on the machine, and the blood is filtered through the filter of the machine.
    So, basically your blood is filtered to remove excess water when ur kidneys don't work, but it also removes important stuff too, like vitamins nutrients, etc. So when ur done w/dialysis; u get up and ur dizzy, and very weak, cuz you've done been filtered. All you really want to do is sleep. Thx for askin'

  7. #7
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    Welcome Brian,

    I am glad you found us and doing much better. What a blessing to have your sister there as a willing match.

    I too used to be on dialysis (thank GOD I am off) and I know how you feel. Some days it was very draining and just when you begin to feel better then it's time to go back to dialysis but i wasn't all so bad, I had a good group of techs and nurses.

    I pray your health continues to improve.

    p.s- like that Tu Pac picture

  8. #8
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    Thx Pink, same to u.

  9. #9
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    Wow Brian you have been through hell and back. Glad you are back on track! Now just try to stay there!

  10. #10
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    haha, it aint no thang, thx, and-uh, i think i'll remain ok. They say after transplant the Lupus is in remission :?: But my body did go thru a lil beatin' , especially from 'roids, which i'm dealing w/now. Which beats the hell outta the hell i was in before :lol:

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