I am Racing to End lupus! Join me and support the mission of the Lupus Foundation of America! My goal is to raise critical funds for the estimated 1.5 million people living with lupus in the United States, me included. Your donation will help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus!
In 2007, Lupus almost killed me, literally. The story goes like this:
Around Christmastime in 2006, I had begun to feel severe tightness in my chest with off and on pain associated to it. Right at the New Year I thought I had bronchitis, so I went to the Dr. on January 3, 2007. They did an EKG at the office and didn't find anything abnormal, however, they wanted to have a chest x-ray done to rule out pneumonia. The chest x-ray came out negative for Pneumonia, however, the radiologist who read the x-ray indicated my heart was "borderline" enlarged. They referred me to a cardiologist.
I went to the cardiologist on January 23, 2007 and there was nothing glaringly wrong by looking at me or the EKG the Cardiologist did however, as a precaution, the Cardiologist wanted me to schedule a Stress Echocardiogram. Essentially, it's a 3 step process where step 1 is an ultrasound of your heart at resting state, step 2 is where you get on the treadmill and every 3 minutes they increase the intensity until they have your heart rate where they want it and step 3 is to perform another ultrasound of the heart in a state of "stress". My stress echo was scheduled for Wednesday, February 7th. I went in and the ultrasound technician completed step 1. She kept asking me if I was doing OK and I kept indicating that I was fine. She said she was going to go let the Dr. know I was ready for step 2. The technician returned and said the Dr. wanted a few more images and that I wasn’t going to complete the stress portion of the exam. In my head I was thinking “Whew! Got out of that!” As additional images were being taken, 2 Dr.’s came into the exam room. They pointed to the screen and said, “do you see this large black area?” (most of the screen was black), “that is fluid surrounding your heart”. There was excessive fluid in the pericardium (the wall between the heart and lining of the chest). The Dr.'s office called the hospital and admitted me directly from their office. They were going to send me by ambulance but said my husband could take me to the hospital if I promised to go directly there. Once I arrived, I was immediately admitted into Cardiac ICU. The next morning, surgery was performed and a sub-xyphoid pericardial window was put in place. They drained 800cc of fluid during surgery and another 400cc through a chest tube they placed while I was under anesthesia.
While I was in the recovery room after surgery, they gave me an IV antibiotic which I had an allergic reaction to and started to go into anaphylactic shock. My throat was starting to get tight and I just remember the nurse saying something about having an allergic reaction and me waving my hands over my throat. After that, the only thing I remember is being moved from the transport gurney to my hospital bed and screaming in pain as they shifted me from one to the other. The pain was so excruciating that I was on a morphine drip for 4 days following the surgery and lost 10 lbs. during that time. I don’t remember too many things about those days, but I do remember my son coming to visit me and seeing the fear in his eyes and the terror in his voice. The chest tube stayed in for 3-4 days until the fluid stopped draining and all said and done 1200cc (40 oz) was drained from around my heart.
While I was in the hospital, the Dr.’s were trying to determine what caused this fluid build-up around my heart and through many diagnostic tests and blood work they diagnosed me with Systemic Lupus Erythematosus, which is what caused the build-up of fluid (pericarditis) around the heart. I was released from the hospital a week after my admission. I had follow up visits with my Cardiologist and with a Rheumatologist. I even went back to work, and life started become more normal again.
And then, on March 5th I started to feel like similar symptoms were reappearing...shortness of breath, congestion, light-headedness, elevated temp, etc. Hoping that the Dr. would just tell me I was a paranoid schizophrenic...I called to ask if this was to be expected based on the recent pericardial window procedure and the healing from that. I was scheduled for an appointment the next morning to see the doctor. The EKG read fine, but as a precaution they had me get a chest x-ray and schedule a follow-up echocardiogram. The x-ray came out abnormal looking on Tuesday, but the echo was set for Wednesday which would be the true tell all. The echo showed fluid, but the doctor was not in the office to provide me with an official read so they sent me on my way, back to work.
Back to work I went only to get a call within 30 minutes of being there. The Nurse Practitioner indicated they took an initial read of the echo and it "looked like the fluid was back and possibly worse than before." He instructed me to head to the ER to be readmitted to the hospital. So...on my way again to the hospital...they readmitted me and when I saw the cardiologist and the cardiothoracic surgeon the next day...there was good news and there was bad news (of course!). The good news was that the fluid was not surrounding my heart...the old ticker was holding up just fine and that pericardial window was doing its job and wasn't allowing a build-up of fluid around my heart. The bad news was that the Lupus was mad that window was put in and decided it would go after my left lung instead. So…on Friday the 9th of March I had a thoracentesis done to remove the fluid from the lung. It's really a lovely procedure...where you lean over a chair or table and they numb the area with Lidocaine...surface first then deeper and then they tell you that you'll feel some pressure and then WHAM...they insert a catheter right in between your ribs and the area between the lungs and chest wall to drain the fluid. Baddabing...900cc later...I was begging for mercy and told to hold my breath and whoosh...out comes the catheter and wham...a little band-aid to cover the area. Within 6 hours after the procedure I was free to go home...another hospital stay down!
Friday at home goes without incident, I feel a little weak come Saturday...nothing extreme but I did notice some swelling in my feet and when I woke up from a mid-day nap I had some really awkward pains...no big deal I thought...just the body recovering and getting things back into place. Bedtime comes...I go to dreamland only to wake up at some abnormal hour with an excruciating pain that started right under the left side of my rib cage and literally shot through the remainder of my body. I remember screaming out in my sleep and then falling back to dreamland. Sunday morning was not as friendly to me. I woke up having to use the restroom and literally had to roll my body out of bed. When I stood up I could hardly breathe or move without that same severe pain I had felt in the middle of the night. I tried to breathe but could only breathe a slow, very shallow breath. I got to the potty and could hardly breathe and at that moment...I thought to myself...here I am on the potty and I may just have to have my family call 911. Determined...I got back to the bed and laid down...trying to calm my emotions, breathing and body down. I took my temp and it was up...no good...I shouldn't have a temp...a temp is a bad sign. I had my family call the Rheumatologist but the Dr. on call wasn’t much help and instructed me to go to the ER…BUT...I didn't want to go to the ER. I mean, what if this was just my mind playing tricks on me? I know! I've got a great idea...we'll go to Cigna Urgent Care. Well, it was a good idea...but ultimately, I ended up at the ER...Cigna called ahead to alert them I was coming and when I got there they took me right back and had a whole staff there waiting. Lucky for me...the good ol' doc that admitted me the Wednesday before was the doc who was in the ER that day too! He says "hey, didn't I just admit you?"...uh huh...good memory! So it’s March 11th and they called my collection (I deem it a collection because I now have claim to an internal medicinist, a cardiologist, a cardiothoracic surgeon, a rheumatologist, a pulmonologist and 2 hospitalists) of doctors to get the process of being admitted started, AGAIN! Thoracentesis number 2 took place on Monday, March 12th...outcome: 500cc more fluid removed from the left pleural area and I was discharged once more on March 13th.
By now, I was in tune with what the pericardial effusion felt like and I was able to recognize the symptoms and how it made my body feel. On April 2, 2007 I had an Outpatient Thoracentesis of the left lung performed with 825cc fluid drained. The Dr.’s were doing their best to get the Lupus out of a flare up but it takes time to figure out the combination of medicine that works best for each individual. I was taking so much of the steroid, Prednisone, that I was a big puff ball all over with acne everywhere, insomnia, mood swings and all kinds of other crazy side effects. Finally, after months and months, it seemed as if the Lupus flare was over and life was getting back to normal.
In February 2009, the Lupus flared again. By now I knew the process and headed to my Dr.’s office. A chest x-ray confirmed my fear that there was another pleural effusion. So on February 18, 2009 I was back at the hospital for an outpatient thoracentesis of the left lung where they removed 1800cc of fluid. That’s almost a 2-liter bottle of soda! During the procedure my blood pressure dropped into the 40s and the nurse was urgently trying to get the attention of the doctor. Fortunately, it resolved itself and there was no emergency action that needed to be taken. Once again, a little band-aid and I was free to go home. I had one additional thoracentesis of the left lung with 125cc fluid drained in September 2009. In April 2010 I came down with a case of shingles but fortunately for me it was not a severe case and they went away after a few weeks and without too much pain. It was a wild ride for sure and I wouldn’t wish it on my worst enemy. When I wanted to give up hope, I didn’t. I remembered all the people in my life who cared about me and who were there to support me in whatever way I needed them to.
In June 2014 I started to have severe muscle and joint pain. Pain medication was not helping, and it hurt to even move. The pain finally became more manageable after a few weeks. I don’t know if it’s because I just got used to it or if it really was letting up. In October 2014 the pain started again, and the Dr. gave me a non-narcotic pain medication to take to help with the sudden onset of pain. Additionally, the Dr. recommended I try a newer medication administered by IV infusion, Benlysta. Interestingly enough, I participated in the Benlysta clinical trial within a year of my diagnosis. I was starting to feel pretty good and then all of a sudden, I started to have severe itching. The type of itching that makes you want to cut your skin from your bones, it was that uncontrollable and severe. I didn’t know if it was something in the medication from the clinical trial or if it was an interaction or one of the other medications. I wasn’t allowed to stop taking my other medications as a precondition of the clinical trial so I had to drop out of the trial. Based on how I was feeling, before the clinical trial, I am pretty sure I was getting the real deal. Once I stopped the clinical trial, the itching persisted and come to find out it was a severe allergy I had developed from Plaquenil. Once I stopped taking the Plaquenil, the itching subsided. I told the Dr. I was willing to try the Benlysta. I started my first dose in December 2014 and have been on it ever since. It works well to control the flare ups and reduces the pain. While I still have some periodic pain, it’s manageable and I’m able to live a normal lifestyle. I call the monthly infusion my ‘go-go juice” because without it, I’m convinced I wouldn’t be able to enjoy life like I do. I’m fortunate that the only side effect I have is increased fatigued a day or two after the treatment.
Now, let’s step back to November 2012, where I participated in my first ever 5k event. I participated with my friend in a mud run. I’m not a fan of the mud but I agreed to play along. I walked most of the event as it just hurt my knees and shins too much when I ran. Since then I have participated in numerous 5k, 10k, 15k and half marathon events. I did 5 half marathons in 2015, put in 1000 miles in 2016 (11 half marathons), 610 miles in 2017 (17 half marathons) and 483 miles 2018. In 2019, I will participate in my first (and only) marathon. I’m set to do the Chicago Marathon on October 13, 2019. That will bring lots of training miles in my future, one of which will be running the Rock n Roll San Diego Half Marathon on behalf of the Lupus Foundation. A cause that personally affects me and now one I can give back to, as well.
My Dr. tells me I’m the healthiest Lupus patient he’s ever had. I primarily walk a fast pace race because it does hurt when I run and walking still gets me to the same end point, just a little slower. When I participate in the events, I see people from all walks of life, with all kinds of unknown stories and history behind them. I don’t know how they got or what has brought them to where they are but I see people with handicaps, some in wheelchairs or missing limbs or on crutches or have artificial limbs or are in their late 70’s and 80’s or have a hidden disease like myself. You see things that make you think, wow, I have no reason not to be out here doing this if that person is. You realize how fortunate you are and how much you should appreciate the life you’ve been dealt. You learn that every life has a story, each unique to an individual and you learn that some will give up hope, but many others will continue to persevere even when life knocks them down over and over again. We have choices in life: we can give up and feel sorry for ourselves or we can accept what we’ve been dealt and persevere. I have chosen to persevere and would love your support in helping me give back to the Lupus community as I participate in the Rock n Roll San Diego 5k and Half Marathon! Thank you for your support!
Did you know?
- Lupus is a complex disease that is hard to define. It strikes without warning, affects each person differently, and has no known causes or cure.
- While lupus mainly affects women between the ages of 15-44, men and children are not spared.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat lupus.
Let's end this cycle now! By making a donation today you are joining the fight against lupus!