Stacey Fergerson
Age: 26
Pueblo, Colorado
War on Lupus
My name is Stacey Fergerson. I was born in Texas but spent most of my time in Colorado. I am 26 years old, currently engaged and work a part-time job at a locally owned restaurant. I have no kids, and will not be able to (I will get to that with this story). I would like to share with you my own personal story of being diagnosed with Lupus and Rheumatoid Arthritis. I wouldn’t have included the other ailment if the story didn’t have some connection. But trust me, it does.
October 18th 2009
A month after I turned 18 years old, I was diagnosed with life-changing illnesses. My joints would swell and grow incredibly painful. Some days it would be difficult to walk, other days I could barely move, it felt like I was trapped inside my own body. My doctor gave me the news that I have Lupus and Rheumatoid Arthritis. They placed me on heavy steroids to get it under control. At the time, no one really knew what Lupus really was so the medications were for an experiment since each individual was different. My face swelled and grew bright red as a side effect. I never knew at the time how severe it could get.
Every year or every other year afterwards, I would have unusual problems with my organs. Holiday season 2011, I had problems with my gallbladder. I was losing massive amounts of hair which resorted to me wearing wigs to make me feel better about my appearance. Luckily my hair grew back full and strong.
Two years later in 2014, I had costochondritis (inflammation of the ribcage) that took over 6 months to heal. I had to change many habits –
how to sleep, how to hold my purse, to take long and deep breaths to ease pressure in my chest.
As time gradually went on, the symptoms only worsened in different areas of my body. It was manageable, even though I made frequent trips to the emergency room. The moment I told them my chronic illness they would say. “Oh! Yes, it’s the lupus causing this.” Great, how the heck do I do about it? How can I fix it? Sadly, all they really did was give me pills and sent me home. Over time, I’ve overcome those obstacles. But the worst was yet to come…
2016
May, 2016 my body was changing. I felt severe pain around my kidneys. I spent a majority of my days in my bedroom sleeping away the pain and exhaustion. Instead of feeling better, it only got worse. Thursday July 7th, 2016 I spent the entire night puking my guts out. It was an every hour occurrence. I had no energy to function. At the time, I was working for my father at his computer repair store as a technician, and I remember going into work and lying in the back office praying that no one would come in or call since my father/boss had an onsite. When he came back I was free to go home… where I’d eat a small fraction of some type of food or drink a simple glass of water and end up throwing it up an hour later. There was absolutely nothing my body could keep down. I felt as if my parents were frustrated at me for not trying other options which I clearly did but to no avail. I had to seek medical attention. At 4 am in the morning of Saturday July 9th, I checked myself in the Emergency Room. I spent the remaining three days in the hospital where they struggled to get the puking under control. They have concluded that my kidneys were the cause of such problems, but the source was deemed to be my lupus (duh). They referred me to a nephrologist to undergo a kidney biopsy and take immediate treatment to prevent my body from rejecting my own kidneys. Thus, edema and anemia began.
My body blew up like a water balloon. My ankles and knees were swollen by 10 am every day and I could barely walk. I could no longer wear my shoes or pants. I resorted to my dresses and slippers. I was exhausted and required multiple long rests. At work I had to roll around in a chair to get from place to place. I would wake up throughout the night coughing. I felt I was no longer capable of sleeping horizontally but at a 60-90 degree angle. The diuretics I was placed on had no effect, and I had trouble breathing.
My family didn’t really know what was going on with me. It felt as if they thought I was falsifying my behavior. I truly didn’t know what was going on and had no real way of explaining it. No doctor gave me straight answers other than the nephrologist, Dr. Albright. My closest friends had no clue. I kept most of this a secret. I was never one to push my problems on others.
At this point I didn’t think anything was helping. The coughing grew worse to the point where blood would show. I thought little of it after asking a nurse about it. She simply told me that it was normal if I was coughing so much. It was my capillaries popping in my lungs. It was “normal” I often convinced myself. I knew I should have taken it more seriously.
My edema, anemia, coughing and puking became increasingly worse. I would puke so much that it became a daily thing. For a while, I just accepted it and continued to eat. At least I got some nutrients out of it. However, as weeks went on I grew tired and scared. Nothing I was eating was helping. I was losing strength and energy at an alarming rate. I grew fearful and stopped eating all together. The only thing I could keep down at this point was water so that was my only option. But as days and weeks passed, the water was cleaning my system out of all the good nutrients. My muscles were weakening. I couldn’t stand for more than 10 minutes. The extra water weight made everything a challenge. I was no longer eating, so I wasn’t puking at this point.
My father set me aside and laid it out for me. I was rejecting everything, and he told me to eat something. Water was no longer helping but washing everything out. The best thing to try at this point was to eat/drink Pedialyte popsicles. Given his experience working as a C.N.A., I accepted the option. My mother bought the popsicles and I attempted it. Luckily it worked. I would drink those daily, but it still wasn’t enough.
August, 2016: Penrose St Francis Hospital
Saturday morning August 20th, 2016, I woke up at 4 o’clock in the morning coughing uncontrollably. I tried to eat something and take my meds in effort to control it but to no avail. I sat next to the toilet, fearing I would puke up what I ate. The coughing would not stop. And as much as I’d suspected, I puked. But this time was different—blood. A whole lot of blood was with it. I was no longer coughing up blood. I was puking it up.
I felt better afterwards and got up from the toilet. At the time, I didn’t deem it necessary to go to the hospital. It wasn’t that serious—was it? I sat down with a cup of water. I drank it all, feeling relieved at first. The coughing came back. This time, I puked up blood back in my cup. I scrambled to get a large bowl and held it close to my body. I sat back on the couch, hugging it tightly. I knew it was going to happen again. I had little strength now.
It was noon. By this time, I was completely alone. I was exhausted by the heat and constant coughing. I was drowning in my own blood. I was afraid to move, for I didn’t want to stir up my lungs. My phone was a few meters away, the door was locked. I couldn’t keep fighting this. I knew my life was on the line. With little strength I had left, I grabbed my phone, unlocked the door, and then fell back on the couch with the bowl still in my clutches. The coughing came back along with the blood and puke. The bowl was half-filled with what looked like pink cherry coke. I dialed 911, explaining the situation best I can with little coughing so the woman on the other end could understand me.
The paramedics arrived within minutes and witnessed my grisly appearance. I was hunched over my bowl of puke coughing even more. A travel bag full of prescribed drugs was a few feet in front of me. Mind you, I was fully functional and did not take any of the drugs in the bag. After asking me a series of questions, they assisted me to the stretcher to travel inside the ambulance. They stuck an IV in me and took me to Penrose St Francis Hospital in Colorado Springs where I was living at the time.
This was officially the day when my fight for life commenced.
After blood-work, x-rays, blood transfusions, plasma transfusions, they have diagnosed me with pulmonary hemorrhage in both lungs. The nephrologist up there immediately set me on chemo therapy known as Cytoxan.
There are five known stages of Lupus from 1 being the most minor to 5 which could lead to death. My lupus had dropped down to Stage 4—Lupus Nephritis. Lupus Nephritis is a very severe stage, in which you have only 15%-29% kidney function left. The nephrologist at the time measured my creatinine level to be 2.7 which was extremely high. Creatinine is a waste product that comes from the normal wear and tear on muscles of the body. Everyone has creatinine in their bloodstream. The average creatinine level for a person is 1.2. I remained in ICU for the remainder of the day. I was so doped up on pain killers to keep the coughing and pain under control. The following morning, they moved me to a room with another patient. My parents came by to see me. I vaguely remember their faces at the awful sight I was. As my mother described it, I was struggling so hard to breathe that she could see my spine through my stomach. I was on 6 liters of oxygen. After leaving for the night, I managed to get some form of sleep. And I had the most memorable dream.
August 21nd, 2016
I was in a dream. I knew this because I was seeing unfamiliar faces, following them like a heard of sheep. We jumped into this huge lake to the side of a dirt road. But something was off about it. It was pink and red. When I looked around, I found I was the only one there. I couldn’t move. I felt something grab by legs and pull me under. I tried to breathe, for I knew in dreams it was possible. But I couldn’t. I was sinking further. I was panicking—or was I? As I was sinking further, I thought to myself ‘I’m not going to wake up from this.’ I could feel myself giving in as I sunk deeper. I closed my eyes. Then, it hit me. No. I’m not ready to go yet. It’s not my time. I opened my eyes to the fading light. ‘God, I’m not ready to go yet. I have too much to live for. Let me fight this, and I need your help.’ I prayed. At that moment, I felt the grip on my legs loosen allowing me to reach the surface of the lake. Within a second, I was standing over my own body as if I was having an out-of-body experience. I was in a dark room with only one spotlight shining down on my body. I was slouched over in a chair as if I was thinking, wearing my hospital gown. I faded in the distance, hearing the sound of a television. I opened my eyes. I had woken from my dream. I was ready to fight the big fight.
The pulmonology physician greeted me and informed me that I would begin hemodialysis later that day, so I was to be put under for the insertion of the IV. For those of you unfamiliar with that procedure, the clinical purification of blood by dialysis, as a substitute for the normal function of the kidney. Before the first process started, I clenched blue bag a puked up this pure black bile. The two nurses hovered over me, at a total loss of what to do. I had nothing to eat for a day, so it was troubling as to why I threw up. As soon as I had finished, they removed the bag and did their job. The process is long, usually takes up to 4 hours a day. By the end of it, the pulmonary physician greeted me and told me, “We diagnosed you with severe pulmonary hemorrhage in both lungs. I didn’t want to scare you when you arrived, but you only had an 80% chance of survival.” He then patted me on the shoulder. “You beat the beast.”
I smiled when it hit me—that dream I had, the black bile I threw up. I believed it to be God’s way of saying “I got you, girl. We’ll fight this together.”
Due to the insurance I was on at the time, they would not allow me to have treatments while still being able to return home the same day. At the time, I cursed them for it, but looking back on it now I’m glad they didn’t. After regular checks on my heart beat with a stethoscope, they mentioned I had a heart murmur, but didn’t do anything about it. I didn’t even know what that was other than it made a loud sound. I was curious, but never dug into it. I wished I had. After being put on diuretics, I was losing the water weight, the coughing had ceased, and I was able to walk—in a weird way—but it was a start.
My diet was regulated for liquid intake, low potassium and low sodium. But you have no idea how much I craved macaroni and cheese, green beans, and barbequed weenies. My mother was more than happy to make that come true. I even have proof!
When they saw my health improve, they released me on September 2nd, 2016. I immediately started my regular routine in life. What I should have been doing was resting. At the time, I was married to a man who was rather… toxic. Needless to say, I was in an abusive relationship
during this whole situation. He wanted me back up and working, doing difficult activities and keeping the house and animals in check.
During this time, I even contracted a bad infection in my digestive track. I would wake up constantly throughout the night with the urge to poop or even experience accidents that I didn’t catch in time. However, there was no smell, no brown stools, just this white or clear mucus. I had an appointment set up to see a gastroenterologist. Thus, I was diagnosed with acute gastroenteritis.
September, 2016: St. Mary-Corwin Hospital
While the husband was away on his job (truck driver), I was staying at my parents’ house so they could keep a close eye on me. They even urged me to stay home and rest. My stubbornness and eagerness to meet my husband’s standards got the best of me. September
6th, 2016, Four days later after my release, I was checked back into St. Mary Corwin Hospital in Pueblo, CO. What was the cause? I was coughing up blood again. They repeated the same treatments as Penrose with x-rays, bloodwork, dialysis, so on so forth. I was on my third and fourth treatments of Cytoxan. My arms were bruised beyond belief and with the heavy doses of corticosteroids I had what you’d call “Moon face” where the fat is stored in your face. It was appalling. That and both of my arms were heavily bruised from all the needles. It was a struggle finding a descent vein to poke and prod.
My birthday was September 18th and I had to celebrate it in a hospital room. My family surprised me with cake, gifts and their presence. In spite of all the bad that had been going on, that day truly lifted my spirits. I gradually began to improve as a few more days went on and was finally released September 20th, 2016. As much as I urged them to release me, everyone knew I wasn’t ready to. I was still swollen from the hips down.
This time, I listened to my parents and stayed home. My muscles were almost completely depleted. I never used a cane or walker—too prideful for that. I would just muster up enough strength to go where I needed to go. I attempted to take a bath and it took me 20 minutes trying to pull myself out of the tub. Later that day, my parents bought a stool for the tub to help me during showers. My favorite spot to sleep was in my bed upright with a ton of pillows, or the chair in the living room since it already keeps me up at an angle. It was still a struggle, seeing as I woke up frequently throughout the night rushing clumsily to the bathroom due to the gastroenteritis. Just one more week and I’ll have the procedure done to figure out the cause of this issue.
In the end, I never got that test done…
My father dedicated one of his skydives to me to keep fighting lupus (September 17th, 2016)
September, 2016: The Big Dogs
September 22nd, 2016 had arrived. Once again, I woke up early in the morning, coughing up blood again. My parents and I knew this would happen. Like I said, they knew I wasn’t ready to leave the hospital in the first place. By this time, I was up to my shoulders in excess liquid in my body. Everything was swollen at this point. I show up and was immediately sent to the emergency room. They stuck an IV in me with some mild pain killers. After an hour of waiting, a doctor came back in and told me they could not accept me, for they did not have the equipment qualified to take better care of me. They got ahold of University of Colorado Hospital in Denver and they accepted my condition. I was on my way to Denver. The Big Dogs were involved now.
Upon arrival, I was sent to my own room. As weird as this may sound, it was exciting going to one of the top ten hospitals in the nation. I had a lovely view and my room was a descent size. What I didn’t expect was basically being a zoo animal in a hospital full of students. It was like a party every morning to check my vitals by 6 different students. I met knew doctors and nurses on a daily basis. I used to write the names down, but after day 2, I gave up on that nonsense. The entire first two days, I have gone under multiple tests; x-rays, biopsies of my kidneys, lungs, and heart. There was way too much blood in my lungs to really see anything. My creatinine was still through the roof. They put me on a very strict diet: low sodium, low potassium, low protein, and only 1-2 liters of liquid intake a day. Their first objective was to take down the swelling. They injected me with heavy doses of diuretics which made me pee like a race horse. It was improving day by day. I was updated daily on my condition and the doctors’ course of action. They gave me unfortunate news that a dormant virus known as Cytomegalovirus (CMV) of the lungs had awoken. CMV is a kind of herpesvirus that usually produces very mild symptoms in an infected person but may cause severe neurological damage in people with weakened immune systems. I had to go through treatments to deal with that first thing. After that, they mentioned that my heart had a murmur—again with the murmur. Instead of brushing it off like the previous hospitals, they did take the extra step in trying to figure out what was the cause. After an ultrasound, I was told that the left mitral valve in my heart was not closing properly and regurgitating blood flow. They believe the cause was the heavy fluid retention. They would eventually have to schedule a heart procedure, which I was more than willing to go through.
The following weekend, I got a surprise visit from my Aunt Rina and Grandpa Albert. It truly was enlightening. They drove all the way up to Denver from Lubbock, Texas which was a long 9-hour drive. Rina spent the whole weekend with me and helped me through my struggles of bathroom visits, walking around the halls, getting my drinks and going outside to see the blooming garden. It meant so much to me. At first she was mad at me for not informing her of my condition. I was too drugged up at the time to say much to anyone really. That and I didn’t want to be a bother and have others pity me. That’s a pride problem which I strongly have. My father spread word to everyone and I was swarmed with messages from my friends and family via text messages and Facebook. Before that, I didn’t really know who really cared. My mother-in-law and father-in-law were the first to text me in the morning wishing me a better day, and showing their love and support. My mother-in-law, Solange, was truly inspirational because she too has Lupus and had fought it well. She lived in Brazil too. My father-in-law, Welton lived in Florida which I did have the pleasure of meeting. He often called me to offer his love and support. So many people were there for me through my struggle. It makes me cry just thinking about it.
I was still unfortunate in catching other problems. Ladies and gentlemen; meet Methicillin-resistant Staphylococcus aureus (MRSA) of the lungs too! What is MRSA? Most often, it causes mild infections on the skin, like sores or boils. It is a nasty staph infection that can cause more serious skin infections, the bloodstream, the lungs, or the urinary tract. Garden-variety staphs are common bacteria that can live in our bodies. Plenty of healthy people carry staph without being infected by it. One third of everybody has staph bacteria in their noses. Seeing doctors and nurses come in with goofy yellow gowns were amusing. On a positive note, the gastroenteritis was no longer present without any test required. I could actually poop naturally again… for the most part.
I had to go through a seven-day treatment to fight the MRSA back into remission through a two-hour session IV and it held up a lot of time concerning the Lupus. As soon as they were confident that the infection is under control, they began focusing on the true slime ball of a chronic illness. The doctors were hesitant in continuing the Cytoxan treatment, feeling it would risk damage to the heart. As the days dragged on, it became annoying. I felt as if they were keeping me in longer to observe me like a zoo animal for all the learning students. Don’t get me wrong, I’m glad to have contributed to their learning, but my life and my health was on the line. I realized how fragile my heart had become, but I knew I could handle the treatments. This Lupus has to be stopped. I have to beat it. I fought so hard thus far. After all nine doctors came to agreement, they cracked down.
After the first week had gone by, my swelling was low enough to where they could run tests again to check the heart. After another ultrasound, the left mitral valve was still heavily regurgitating blood flow. The coughing up blood had stopped, but there was that fear that it would never truly go away until we did something about my heart. It was either open-heart surgery or another procedure called the “Mitral Valve Clip Procedure”. It basically consisted of the doctor inserting a clip the size of a dime into my artery in my leg, travel up to the heart, make a small incision in the heart and place it on the valve. It is actually a rather interesting procedure. But that was for a later time. Maybe they could fix everything before having to do that. At least, they were hoping.
My sister, Adorea, and her husband at the time came by with my niece and nephew, Kaitlyn and Kaidyn. It was truly surprising, as I didn’t see her for a while. Kaitlyn is the sweetest. She wanted to stay the weekend with me and she got to. Not sure why, since the hospital was limited to accessible things. I guess she really missed me, and I missed her too.
The swelling finally disappeared by the end of the second week. My creatinine level was still concerning but it dropped to an acceptable level of 1.5-1.7 . I had to carefully watch my diet. Everything was regulated and I was ready to go home. We had not scheduled the heart procedure and wouldn’t look into it unless the conditions worsened again. Only time would tell.
I was released from the hospital October 7th, 2016. My muscles were completely depleted. My brother, Farley, came to pick me up in his big Ford pick-up and it was rather embarrassing getting in that thing because—well—I couldn’t get in it. My legs were to week to push up and all my had could do was hold on to the handle on the top door frame. Farley had to pick me up and place me in there. A few days had done by and I started coughing once again. I did not want to for the life of me, return to the hospital, so I would frequently take cough drops and Dayquil/Nyquil to keep it under control. Sadly, my condition only worsened. At this point, I had this urge to give it all up. I didn’t want to keep going on like this, even after all I had fought through to get this far. That’s when I started to type up my will. I didn’t have much, but what I did have, the family could receive after I had passed. I didn’t tell anyone that, of course. I felt so defeated, and depression was sinking in. The swelling came back and coughing worsened to the point of heavy blood would fill my cup at the bedside. I could see the look on my mother’s face. Without telling her anything, she knew. She knew I was giving up. That’s when she spoke up. She and my father took me back to St. Mary-Corwin Hospital on October 14th, 2016.
October, 2016: Keep Fighting
This was by far the worst start to my treatment. Before they were ready to send me back to Denver, they inserted an IV through the vein in my neck. The pain was excruciating. I couldn’t hold back my cries and I clung to my mother’s hand. Tears were pouring down my cheeks and I could not stop coughing. After they finished, they prepared me for the trip. I had my laptop back handy because they knew I would be gone for a while once more.
I made my way to Denver by nightfall. They sent me to the third floor of the hospital which is cardiology. I begged and pleaded the nurses to stop the coughing, to stop the pain. They injected me with morphine in efforts to help. That night, I couldn't stop coughing. I was crying, begging the nurse to give me a pain relief for something to stop the coughs. I began to black out. I was so exhausted, I was ready to let sleep take me over. I then woke to the nurse screaming and shaking me "Stacey! Stay awake! Don't fall asleep!" Next thing I knew, I was on 64 liters oxygen and stayed in ICU. I had caught pneumonia from the Nyquil. That almost took my life the second time. I informed my mother via text the following morning after vitals were normal. Two and a half hours later, my mother surprised me by showing up. The oxygen was really loud so we basically had to yell at each other to be able to hear one another. She told me as soon as the shop closed, my father would be on his way. She told me, “I informed your dad of your text and he told me to go immediately. He would catch up immediately after closing. He said ‘Go and go now’. That was the second time I saw him cry for you. He’s really scared for you, Stacey.” To this day, I had never seen my father cry. Like me, his pride is very hard to surpass. So, to hear her say that he was crying for me… it truly made my heart ache. Then I think back to when I was at the hospital in Colorado Springs. He told me, “If I have to keep fighting, you do too. We have to be each other’s support if we want to keep going.” It kept repeating over and over in my head. My father arrived later in the evening, finding ways to cheer me up. They spent the entire weekend with me, sleeping on the fold-out couch. It looked rather uncomfortable, but I was extremely happy they were there by my side. I didn’t want to face this weekend alone. I hate it. It felt like the depression was lingering in the background, waiting to strike at any moment.
The coughing was under control again, the bleeding had stopped, and they set up the procedure sooner than later. That was their last option. After the final treatment of Cytoxan, they were confident that the lupus was finally under control. Now, I have to fix my ticker. They swelling went away within a week after heavy diuretics in which I would be taking home to keep under control. I spent one last week at the Denver hospital and was released the following Thursday, October 21st, 2016.
After meeting with the Cardiovascular specialist, they scheduled the procedure on December 22nd, 2016. I was eagerly awaiting that day. But truly, I was eagerly awaiting Thanksgiving. Why? Because I got to stuff my face with anything I could eat! I felt like a fat kid, but after being on a restricted diet for so long, you tend to realize all the food you had taken advantage of. I ate, and I ate well, dang it!
December, 2016: The Final Piece
We arrived at the hospital early morning. After an hour in waiting, I was sent to the procedure room. They put me under and began their 6-hour procedure. I awoke to find that the procedure was a success and they had inserted two mitral valve clips. I even have cards for both. Lucky me. My parents could immediately see the difference. I was so full of life. The coughing had ceased, the murmur was completely gone, and the regurgitation of blood flow was at the bare
minimum. I had won. I beat it. I beat Lupus.
I feel like a new person. I wanted to live better and be better. My confidence sky-rocketed. I filed divorce from my husband, the very source of the toxin in my life. I moved back with my parents and continued working for my father. After the steroids were reduced, my moon face faded and I was maintaining a healthy weight. By April 7th, I was officially divorced and ready to life my life the way I want to. Not going lie, the depression was still there. Even though the divorce was the best thing for me, I still felt alone. My parents kept a close eye on me. I posted on Facebook that everything was getting better for me. My health had returned to the good kind of normal.
Their prayers and support truly helped. And then Josh reappeared in my life. I have known Josh since I was 11 and had the biggest crush on him ever since. He is my best friend’s brother, after all. Time was everything for us. We were both single and decided to try our luck. We have been together since July 15th, 2017. I have learning through it all, that if you truly love someone, you would be there for them through thick and thin, through sickness and health. My ex-husband was the opposite. Josh, however, was very understanding. He pays close attention to every detail
which I have never had from a partner.
I still have complications due to my complicated immune system, but he is there through it all. I was on 14 different pills and as of today, I am only on 4 that truly matter. My nephrologist keeps a close eye on my test results and does what he can to keep the meds at a minimun. I was re-prescribed Cellcept to keep my body from rejecting my kidneys and it had been doing its job well. My last appointment with him was April 4th, 2018 and my creatinine had improved tremendously at a 1.2 . My hair is growing back thick and lush, my weight is still healthy, and my strength improved even more. I truly did beat the Beast, but I didn’t beat it alone. I have so many to thank for my success. I wouldn’t be here if it weren’t for them. And God, well, has was there through it all.
I still have complications due to my complicated immune system, but he is there through it all. I was on 14 different pills and as of today, I am only on 4 that truly matter. My nephrologist keeps a close eye on my test results and does what he can to keep the meds at a minimun. I was re-prescribed Cellcept to keep my body from rejecting my kidneys and it had been doing its job well. My last appointment with him was April 4th, 2018 and my creatinine had improved tremendously at a 1.2 . My hair is growing back thick and lush, my weight is still healthy, and my strength improved even more. I truly did beat the Beast, but I didn’t beat it alone. I have so many to thank for my success. I wouldn’t be here if it weren’t for them. And God, well, has was there through it all.
“The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself.” – Mark Caine
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