The Story of My Tragedy, Part One
*This story was originally shared via my sister's blog in June 2011.
Hi everyone, it's Caroline. My story is confusing. And honestly pretty sad. I'm not quite sure where to begin. Usually stories have a beginning, middle and end, but mine seems to blur all together. I'll try to be as coherent as possible, but we think it all started here:
A really awesome sunburn. In October 2010 Mr. Big (sorry Carrie Bradshaw, I'm name stealing) and I traveled to Athens to watch UGA take on someone in football. Our awesome friend Byron was in town as well, even offered me sunscreen, which clearly I didn't take. After the nasty sunburn came a nasty sunrash that lasted a few weeks, then it went away and I thought nothing more of it.
Fast forward to January 2011, my wrists start bothering me, and again I ignore it. Here comes February and my right elbow won't straighten all the way. Then Big and I travel to Hawaii to visit his college roommate with some friends and yet again I get a sweet little sunburn.
March is pretty uneventful, until the end of the month. Then, after 4 1/2 years and 2 years of living together this happens:
Big leaves me for his coworker. I lose 10 lbs. I go to Georgia for 2 weeks to try and get myself together. My elbow still hurts. Family friend drains elbow. I go back to DC. I start feeling even more crummy, not just emotionally now, but physically my body is just going bonkers. My wrists and hands start hurting so severely that I'm scared to try and hold Speight or Winlon for fear I'll drop them. Then this happens:
Swollen feet. This is the picture I sent my Uncle (who happens to be an internist in Atlanta) asking him if I needed to see a doctor. Obviously he said yes. It was his response that led me to go to the ER the first time, and in essence changed how I will now and forever know my life.
18 Days to Lose Your Soul, Part 2 of my Tragedy
Thank you for being patient while I share my story. It's sort of long and complicated so it might take me a few somewhat long posts, and as you can imagine it's a *tiny* bit emotionally hard to tell, so bear with me. (And obvi, the tiny is totally sarcasm.)
After I spoke with my Uncle I decided I should probably see someone. I had my roommate/coworker take me to an Urgent Care on Wednesday, May 25th to see if they could figure out what was wrong. They did some tests, drew some blood, took a urine sample and told me they'd call me within 24 hours to give me my results. They also said that my kidneys were fine. That night I stayed with my Saint of a friend named Tabitha and just started feeling terrible. I woke up the next morning sobbing over Big and my body aches and how my neck hurt and my feet were so swollen. Tabitha says she wishes she'd just driven me to the ER right then. I insisted on going to work to wait for Urgent Care to call. I get to work around 8 and am FREEZING. My coworkers always jokingly gave me a hard time for having my space heater on under my desk, but this particular morning I had a quilt AND my space heater on AND a jacket and I was still shivering. No word from Urgent Care and it's 9am.
I call my parents. I start sobbing again (totes inapropro in an office environment, I know ya'll). My mom says to wait until 10 am and if Urgent Care hasn't called that I should call them. I agree. 10am comes and goes so I call them and the lady who answers the phone says it will be another 24 hours for my labs results. I start crying again. Mom says go to the ER.
Saint KM in my office offers to drive me to GW Hospital. We get there around 11am. By 1pm we're back in the ER and they're running some tests. They figure out something is wrong with my kidneys. A nephrologist (that's a kidney doctor for those of ya'll not in the medical know) who I will come to know very well (Dr. Collins, he's legit) comes to see me. He wants to run some more tests and says he's probably going to admit me. He says that my kidneys are wonky but he's not sure why. He says worse possible scenario I'll have to get a kidney biopsy the next day but he doesn't think that's going to happen. I hear biopsy and start freaking out. Saint KM has been keeping my mom updated. She says she'll stay with me til they put me in a room. She reminds me Dr. Collins said he didn't think it would come to biopsy. They take me off to do an ultrasound on my kidneys. I get back.
Saint KM and I are calmly chatting. Dr. Collins comes back with a very tall, very handsome Indian doctor, Dr. Patel, who is the head of nephrology. He explains that my kidneys are spilling protein and they don't know why, but he's definitely going to do a kidney biopsy in the morning. I am flipping. More tears. KM lets my mom know. Mom hits the road to Atlanta to catch the first flight to DC she can get.< I finally get moved to a room around 9pm. They say my biopsy will be in the early afternoon on Friday, the 27th. I have awesome awesome awesome coworkers come visit me that evening. I have a moaner for a roommate. I am scared.
They wake me up 2 times that night to do vitals. I wake up at 730 am, Saint KM is there at 8:02 I think. (They allowed visitors from 8am-10pm). We sit. She helps me order breakfast. My friend Michael Venet from Moultrie comes by. He sits with me. My mom gets there around 11am. KM is still there. They decide to do my biopsy early. KM goes down to sit with my mom. Dr. Patel talks to me through out the whole biopsy. (He's so nice, I really do love him just a little bit, I feel like he saved my life.) I head back to the room.
The next 2-3 days are pretty much the same. I can't pee. Biopsy results slowly come back. They say it's not cancer, lupus or diabetes. I breathe a sigh of relief. They release me on Sunday. They say to watch the swelling. Try and eat. I still don't feel great, but my mom and I head home to where I've been staying in DC. Obviously that's not the end of my story, the end of my hospital stay or the end of my battle. That's only Day 4. I realized during the past few weeks that it's absolutely possible to lose your soul. It only took me 18 days to lose mine.
The Diagnosis and ICU, part 3
Thanks for bearing with me as I tell my story. Hope you're sitting down, this one is kind of long.
After getting discharged I knew something was off, but I was hopeful. I still didn't feel quite right, but I wasn't sure if I was sick or if I was still down on myself about Big. I guess I need to back up a little for a minute, because the whole Big thing ends up playing into me getting so sick. When Big and I broke up I was absolutely devastated, and if I'm going to be completely honest with all of you (which I told myself I would be) I still am really. I thought I had the perfect life. Amazing friends, an awesome awesome job, a wonderful family that I didn't get to see enough of and a loving boyfriend and roommate who I thought I was going to spend the rest of my life with.
I will never forget one night shortly after we broke up that I'd gone back to our old apartment to get some clothes. I was upset and Big wasn't, he said he must be heartless, and I looked at him with tears in my eyes and said, "Am I just not good enough for you?" He looked at me with absolutely no feeling in his eyes and said, "No, I guess you're not." I didn't find out about him already being with his coworker until a few days later. As you can imagine it made me really down on myself. Not good enough. I kept repeating it in my head. What could I do to be good enough? What was wrong with me? How could I fix it to make him love me? I would stress over it night and day. Add in the new girlfriend and there went part of my soul.
Stress.Stress over Big. Stress over friends who seemed to be taking sides. Stress over being pretty much homeless. Now here I am, fresh out of the hospital and still not feeling that great. Something is off still, but I take the medicine they'd prescribed.
Wednesday, June 1st, 48 hours after being discharged I am in excruciating pain focused mainly at my biopsy site. I couldn't sleep and it hurt to try and take a full breath. We call Dr. Patel, he says head back to the ER it'll be quicker to get you readmitted that way if it comes to that. He thinks I might have a blood clot in my lung or at my biopsy site. My coworker Michael comes to pick up me and mom and take us back to the ER. I go to see a triage nurse and she asks, "On a scale of one to ten can you rate your pain?" "Eleven," I responded. They took me straight back.
Doctors came down, morphine was dispensed, chest xrays taken, and then a urine sample. Sorry for all the pee talk, but as you know from Camila's previous posts its central to my story. Creatinine is what's used to measure kidney function, normal is 1 or below. When I was discharged the first time my creatinine was at 1.3, a little high but okay. When they readmitted me on Wednesday my creatinine was at 3.4 and on the climb (bad sign).
They determine I don't have any blood clots (yay?), but my kidneys are going into failure. They take me upstairs to a room where later they'd also add the worst roommate ever. EVER. This lady moaned. And refused to use her nurse call button. She'd just scream, "NURSE! NURSEEEEEE! I NEED MY PAIN MEDS! IM HONGRY!" Seriously. Awful. She also turned on her TV as loud as it would go at 10pm and left it on til 2 am. Seriously lady? Im dying here (didn't know at the time I was literally dying, but hey). The next day mom gets me moved to a private room. Creatinine keeps climbing. Thursday they come in and tell me my lab work shows that my creatinine is at 5.8. Five point eight. That's kidney failure. They give me all sorts of medicine. Then Dr. Patel comes in with some new doctor, Dr Katz. Dr. Katz is a rheumatologist. Dr. Patel says they've gotten some more results back from the biopsy samples they sent to UVA. They are pretty sure I have lupus, but not 100% sure. I'm confused. They told me before that I didn't have cancer, diabetes or lupus but now they're saying I do? I don't even really know what lupus is! Is it fatal? Am I going to have it forever? "Let us get some more conclusive results in, but we're pretty sure," they say. Normally lupus doesn't cause kidney failure this quickly. I learned you can have lupus your whole life and never have a flare up so you never know it. Other times it'll flare up because of a bad sunburn (check) or horrible stress (gajillion checks). Any light bulbs going off for anyone else here? They don't know if it's genetic, environmental, or stress related. Other warning signs? Fatigue (check) and joint pain (check).
Dad calls from the airport in Uruguay to check in on me and to tell Mom he's heading out to the jungle to begin his hunting trip with his friend. Mom tells him the diagnosis. Instead of the anticipated hunting trip, Dad books the next flight back to the states and to DC. I have a terrible night in the hospital. I'm in so much pain even morphine didn't help. My nurse takes out all my IV's because they were hurting me so badly so that I could sleep. Mom stays the night with me. I'm scared.
Friday comes and mom and I are sitting in my room with my friend Tabitha. We still don't know what's going on. I'm not telling people I have lupus. The doctors come in to discuss my morning lab results. They look nervous. "We're going to move Caroline to ICU to monitor her," they tell my mom. "She's spilling 16 grams of protein when she does urinate and she's retaining a lot of potassium and it can cause fibrillation of her heart." I start crying. My mom starts crying. Tabitha starts crying. We're not stupid. We know they don't just move people to ICU to "monitor them". I ask mom to call my best friend Sambo, and I ask Tabitha to call my other best friend Ivey to let them know. I figured this is it, I'm dying. I can't pee, my kidneys are shutting down, I have lupus and they can't get my kidneys to work. It's time to circle the wagons. Dad gets there just in time that day to watch me move to ICU.
I had a giant window in ICU, this was the view from my room.
ICU is where it gets blurry for me. I had some wonderful visitors come see me, some who I didn't even know where there until after the fact (Reid Voss, thank you!). Sambo drove up from NC (thanks Ben!) and sat with me every day in ICU.Every day. My friends Tabitha and Leslie would wait for hours in the ICU waiting room to sit with me while I slept and they read and give my parents breaks and force them to go shower or eat. My friend Scott came to see me, and my coworker Michael. Beth and Amanda and Sobel came in quite a few times to make me laugh (Sobel you do it every time!) My Aunt and Uncle flew up from Atlanta with MC just for the day to make sure I was okay. It was beautiful. I was loved. People would send me beautiful emails and texts. I heard from people I hadn't heard from in years, and the sad part, to me at that moment in time, was that I didn't hear from the one person I really wanted and thought I needed to hear from. Big. I heard from his mom and his twin sister, but no Big. He hates me is all I could think. I'm scared and I'm dying and he doesn't care at all. More stress. I'm terrified. I'm dying. Or so I thought.
I know Camila already posted this one, but all these people waiting in the ICU waiting room to see me makes me happy so you get to see it again. (L to R: Sambo, MC, seated on the ground are Tabitha and Leslie, standing Dad and Mom, Beth, Amanda, Aunt Mary, Uncle Jimmy, cousin Ana and Sobel barely makes it in the bottom)
I was in horrible pain, I couldn't go to the bathroom, I was getting dialysis, I had no appetite. They're still not sure why my kidneys won't function. I'm still spilling obscene amounts of protein. At 178 lbs I'm so swollen it feels like my skin is going to rip open. On Sunday I'm convinced I'm dying. I felt my resolve falling apart. I was broken. Looking back I consider it to be one of the lowest points I had while I was in the hospital. I had a rough rough day. They took out the permacath from my groin and surgically implanted one under my right collar bone. I'll have 2 scars. I'm scared and I'm crying all day on Sunday. I asked my dad, sobbing, if I was going to die, I told him I didn't want to. He looked at me and promised me I wasn't going to die. That night my nurse, Greg, was so sweet to me. He tuckedFish into bed with me and checked on me often and made sure I was comfortable. That night is also the night I had the dream about the old man helping me crank my car. My kidneys went from zero to 10 percent function on Monday. I'm positive the old man in my dream was God. On Monday I was still scared, still swollen, but not convinced I was going to die. I thought maybe I'll make it out of this after all.
Monday night/early Tuesday morning around 4am they were comfortable enough with my kidney function that they moved me out of ICU and into another private room. Tuesday morning mom and dad got in to see me and a miracle happened. I peed. By myself. No catheter. They came to get me to take me to dialysis. I'm wheeled by one of my kidney doctors on the way. I scream out, "I peed!!!!!!, " like a little kid. She looks at me, her eyes as big as saucers and she's says, "Whaat?" and runs off. I'm getting hooked up for dialysis and 2 of my other kidney doctors show up, they say, "We heard you peed???" They decide to hold off on dialysis (yay!) and I get to go back to my room. Dr. Katz shows up and says, "did you really pee???" I laugh and say yes. He does a pee pee dance (think fists straight out in front of you and moving in an awkward circle). It was a big deal. We quasi celebrate, but I wasn't out of the woods yet.
The Final Breakdown, Part Four
That Tuesday I had a great morning, an okay afternoon, and a worse evening. The next day, Wednesday, was the day that broke me. I woke up and didn't have much going on the kidney department. A side note I should tell you is that in hospitals you don't get much sleep. You sleep in 2-3 hour intervals when you can until they wake you to draw blood and take your blood pressure and temperature. As you can imagine I was always tired.
I consider Sunday to be my worst "sick day" in the hospital, but the day I broke, where I think I hit rock bottom, was definitely Wednesday. Wednesday I woke up and I felt terrible. My labs were improving, but not by much so they were still bad. The doctors came in a few times and were still really concerned about my kidney function. They started me on multiple steroids, a blood thinner, and numerous other medicines. I also learned that when I'm having a flare up of my particular type of lupus, it makes me extremely sensitive to pain, as in I cried when they would remove tape from my arm because it hurt so badly.
On Wednesday I had a rough morning. I was having a hard time wrapping my head around having lupus, dejected that my kidneys weren't functioning well and I was back in the no-pee zone, and I was so so tired. My mom and I were visiting with a family friend who was telling me about his battle with bladder cancer almost exactly a year before when a lab tech walked in to draw blood. They'd been using pediatric needles on me due to my extremely low pain tolerance so I asked her if she'd brought one and she nodded yes. I think nodding was the only thing this girl knew how to do. Pardon my typing but she pulled out what I came to call the "big ass needle". I'm talking BIG. I stared at it. I knew this was going to be ugly. She "found" a vein in my hand and jabbed. JABBED. You all can probably guess that she missed the vein. Instead of taking out the b.a.n. she poked around inside my hand like she was on a scavenger hunt for gold. I was sobbing and kept saying, "You're hurting me, you're hurting me!!" She looked so confused. She finally pulled out the needle and said, "I'll come back later." That's what most of my day was like. Lots of tears, losing hope, thinking this disease is going to claim me, change me, sad about Big, wanting to leave the hospital, wondering what people would think about me having lupus, wondering how people would treat me, if anyone would want to ever be with someone like me.
Wednesday is also the day I had a lot of trouble with my permacath in my shoulder. It wouldn't stop bleeding. My poor nurses had to change my bandages multiple times. Seeing your own blood oozing out at a constant pace is not good for the reassurance that everything is getting better. The permacath was also healing and it was painful as well. My night nurse ended up changing my permacath bandaging 3 times in one night. It was miserable and there were a lot of tears.
That night I obviously couldn't sleep. In addition to my problems with the permacath, as well as being in the no pee zone, I had all these awful thoughts running through my head about how maybe Big was right, how I wasn't good enough and that I probably deserved everything that was happening to me. I was so emotionally broken that I was sobbing hysterically. I prayed a lot out loud that night asking God to help me get through this, to help me fight and be strong. During one sobbing while talking to God prayer fit the the only person I could think of was Big. I caved and emailed him at 2:30 in the morning. This was hard for me for 2 reasons: 1) I knew I shouldn't be emailing him and 2)I had IV's hooked up to both my hands and all I had was my blackberry so it was excruciating for me to type out a message. I told him how scared I was, how I didn't want to die, how I was confused and how he'd been there for me through the past 5 years and I needed him. I apologized for interrupting his new life with his girlfriend, but told him that emailing him made me feel a smidgen better. (Side note: smidgen is an underused word.) After I hit send I felt a weird sense of relief. I thought maybe God was showing me something.
He did. Big never emailed me back. I never did hear from him while I was so very sick. On Thursday I woke up convinced I would hear from him. Obviously I didn't, but instead I exited the no pee zone, my labs started improving and my creatinine levels dropped. I also was down to spilling just 9 grams of protein instead of the 16 I started with. I was getting better. Talk about God saying, "Hey! Quit staring at that shut door over there, yooo hooooo! I'm going to open up this window half way and let in a nice breeze!"
The next few days I slowly got better and better. My Aunt came into town from Florida and so did Camila and MC. They helped my Mom take care of me. and watched Mom learn how to give me a shot in my belly, and they were all there for my big release the following Tuesday. (Yay!)
My poor swollen belly with the scars of the nurses and Mom's handywork (the shots in the abdomen)
Exactly one week after my lowest emotional point in the hospital I was in a hotel room with MC and my Mom. I was still extremely swollen, but I was jail broken! That night I got to eat real food! My friends Tabitha and Leslie came over to the hotel restaurant to have dinner with us to celebrate. (I had the. best. pasta. of. my. life.)
Leslie, Me and Tabitha so happy that I'm out (clearly big smile from me!)
Me and MC celebrate that I don't have to eat hospital food
The next day I had a follow up doctors appointment with my kidney doctors to get the ultra final results from the biopsy they sent to UVA and to make sure I'm doing okay. We get in and I sit down. Dr. Collins comes in. He asks how I'm feeling and says they got in the final diagnosis. Type 1 Lupus and Minimal Change Disease. BLAMMO. I felt like someone had sucker punched me.
Me: "I'm sorry, wait, what?"
Dr.Collins: "The chances of having both diseases is less than 1%, but we're positive! MCD is usually found in children, and it was most likely the major culprit in your hospital stay."
Me: "I'm sorry, I have 2 diseases? For life? What?"
Dr. Collins: "MCD usually only flares up once and then goes into remission for the rest of your life, but others it'll come back, but not usually."
As you can imagine I'm not super confident at this point and all I can think is I'm going to go through this again at some point in my life. We rearranged my med list and he tried to reassure me. Appointments were set up for August with him and Dr. Patel and then appointments made for June/July with specialists in Atlanta. He also let me know that apparently a nephrology conference had been in town the previous Tuesday and people were so fascinated by my case that they discussed it during the conference. I guess that makes me feel better? He said I'll have a lot of doctors very interested in me for a long time, so I guess that can never be a bad thing.
The following day, Friday, I had an appointment with my rheumatologist (my lupus doctor). She said everything looked okay but then also said she needed to mention that while they were studying my labs they noticed that my blood also contained what's called an ASA antibody. She said this antibody will just mean that if I ever get pregnant that my baby will be at a higher risk for electrical problems with it's heart so I'll have to be monitored, and if it does have the problem then when it's born they'll have to immediately insert a pace maker.
I'm sorry, what?
Tears they start flowing. Talk about overwhelming. Not exactly first date material either. I take a deep breath, try and wrap my head around this as well.
I was cleared to travel to Georgia, and so I did, the very next Monday. That's where I headed, going back and forth between my hometown and Atlanta to see doctors and do physical therapy. My story was nowhere near over, though I'd hoped the scary/ugly part is. I deserved something absolutely amazing to happen to me. Maybe Camila's friend James and his gorgeous girlfriend Emily would set me up with Jake Gyllenhaal or maybe I'd win the lottery. The weekend I was discharged Mom, MC, and my cousin Teresa and I went to see Bridesmaids. While hilarious, Kristen Wiig's character hit a little close to home. She reminded me a lot of myself, with all the terrible things that happen to her, but in the end it works out for her so who knows what will happen for me?
