Angie’s Story of Lupus

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This is one of my good friends, Angie and her story of her fight with the wolf, or lupus. Please read and learn more about lupus and the things it does to those who have it. Thanks Angie for sharing your story with us! This is her story, in her own words…

Angie’s Story of Lupus

I was diagnosed with Lupus in 1980 at the age of 8. What started as a rash on my face, which my mom thought was poison ivy, would change my life forever. I had no idea at that point what lupus was or what it could do to my body but through the years I would find out just what an ugly beast it would be…

    


My first flare happened at the age of 16. I developed sever swelling all over my body. At first the GP my parents took me to said that my pants were too tight (after all that was the style cause it was the 80’s). So the next time I went in I wore a dress and said “Are my pants too tight now??” I know I am a smarty pants, but I wanted the doctor to take me seriously and make the swelling go away. At that point I was placed on maxide and sent to a rheumatologist.

 
Let the testing begin….he checked me over and decided that I had RA. He took my blood and ran more tests and also decided that I had Mixed Connective Tissue disease. Prednisone would be my next drug that I would be placed on at that point. Prednisone made it hard to sleep and the maxide made me pee a lot. But nothing was taking the swelling away. Next I was off to a Kidney specialist. More tests…I had to give a 24 hour urine sample and more blood. He decided that there was nothing wrong with my kidneys at that point. I was then sent back to the rheumatologist and he placed me on plaquinel. The swelling went down eventually, but we never knew what had actually caused it.
Years past, I married and had two boys even though I was told I wasn’t able to have children. By the time I was 25 the swelling had returned. I went to a new GP (my other GP had passed away at this point). After testing me my GP told me that the symptoms I was having were all in my head. She gave me anti-depressants and sent me home.

This swelling and arguing with my GP went on for a year before I found out what was wrong with me. I had been working, raising my kids (they were 7 and 4 years old at the time) and having a hard time at doing those things due to the pain in my tummy. My family believed it and chalked it up to the fact that I was eating too much and exaggerating my pain. I had enough and had decided not to go back to my doctor. Then one day the pain was so intense that I made my husband take me to the hospital. The ER nurse took one look at me and saw how jaundice I was and told me that I had to be admitted. I was in full blown liver failure and needed a transplant.
So here I am in the hospital and I am thinking…FINALLY!! Someone can help, they finally know whats wrong!!
At first I was relieved that the doctors FINALLY knew what was wrong with me and I could say to everyone “SEE?? I told you I was SICK!!” And then the fear set in…and I started thinking “OMG! I am going to die!…who will take care of my kids?? I am NOT ready to die!!” After all, I was only 25 years old. Then I hit denial, and thought this isn’t real, this isn’t happening, and after a week in the hospital I left AMA!! Maybe it was the high doses of prednisone, maybe it was that I wanted time with my family without being hooked up to IV’s? Who knows, but I knew I needed time to think and clear my head. After denial I was MAD!! Mad at LUPUS..how dare it rear its ugly head in such a way and make me and others around me question my mortality!! I decided to fight and win!!
I was told that the closest transplant center to me was 6 hours away. I made the appointment and found that I had to wait for my insurance to clear it before I could go through the necessary check-ups and psych testing to be placed on the transplant list. After months of waiting I found myself driving to Omaha, Nebraska for a weeks worth of what I like to call torture..the doctors call it “tests”. I was given the green light and placed on the list in November 1998.
Let the waiting and the false alarms begin…
I was given a pager/beeper (I am sure they just call ya on your cell phone now but thats how it was done then) and I had a certain amount of time to call them back. The first false alarm wasn’t too bad..they paged, I called them back and started packing. Before I could get on the road they called back to tell me that they had tested the donor liver and it wasn’t usable. So the flood of emotions that I had felt moments before (panic, excitement, fear, etc.) were reduced to tears and wonder. Would I get the call in time??
The second false alarm…
AS always the beeper went off, I called and was ready to go. But I waited. You could say I took my time getting things in order this time for fear of the let down. During the wait I called a local company of pilots that donate their time and planes to bring patients to other states. From the airport I took a cab to the hospital. I was in my gown, I had my blood work done and AGAIN the donor liver wasn’t a good one. I had to sit in the hospital and wait on someone to come get me and drive me home. 😦
I am sure there was at least one more false alarm but I can’t recall it right now.
Or maybe I could say the third time was a charm?? Anyway, after waiting on the list for 3 years I got the call I had been waiting for. It was around midnight on February 17, 2001. My beeper went off and I thought to myself “I am tired..I don’t want to call back and get my hopes up…” I then hesitated. My mind was racing…what to do?? Should I call them? Should I even bother? Then I came to my senses and gave myself a mental slap in the face..what was I thinking?? This could be IT!! I woke my husband and called. I then realized that I didn’t have a ride. My car had broke down. So I called the first person that came to mind. My good friend Ed. He made a beeline to my house and drove me to Nebraska in record time. Pretty sure if he had gotten pulled over he would of had a whopper of a ticket!! Laying in the backseat of his car on the way there I was praying..please God let this be it…
The transplant…
This was IT alright. I was prepped, taken to surgery and 14 hours later it was over. At least the surgical part was. I was told that I was within days of death and that my liver weighed over 12 pounds!! No wonder I looked pregnant!
The first few days are a blurr…and my doctors and nurses refer to them as the “honeymoon period”. Since things were going well, my husband decided to drive home and get a few more items that he needed and see our boys. He considered bringing the boys back to see me since I was doing well.
After he left my nurse decided to get me up and see if I was strong enough to walk. I guess they need to do this within 3 days of surgery due to the risk of blood clots. Anyway, the last thing I remember her saying was “Angela!! Are you ok??” Everything went black.
The weeks that followed I was in a drug induced coma. I had suffered a grand mal seizure, collapsed lung and brain bleed (I had a stroke). I was allergic to my anti rejection medications. I had to under go plasmaferesis (procedure consists of removal of blood, separation of blood cells from plasma, and return of these blood cells to the body’s circulation, diluted with fresh plasma or a substitute.) and chemotherapy. I would have the plasmaferesis in the morning and then chemo at night. I suffered such high fevers that I had to be packed in ice. It got so bad that the hospital was preparing my family for my death.
My doctors explained to me and my family that its a miracle that I am here today. I was one in 500 million that this would even occur.(so please don’t think for an instant that this is common and will happen to you because odds are it won’t).
After 3 loooong months in ICU and the hospital I was finally able to return home. I weighed about 70 pounds (not able to eat due to chemo). I was in a wheelchair due to neuropathy caused by chemo. I was on oxygen because of my collapsed lung. And I was bald, again due to chemo.
We hadn’t told the kids that I was coming home, I wanted to surprise them. When I got there my oldest had a friend over staying the night and when he saw me he looked at Jay and said “Dude! Whats wrong with your mom??” He and my son are still friends to this day.
So that’s my story of having grown up with lupus. I hope and pray daily that I don’t suffer another flare and watch closely for the warning signs.

 

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