Betsy Journey

My history with Lupus began 16 years ago when I was just 14. At an age when I should have been full of energy, I found myself constantly in a state of exhaustion. I would sleep for hours on end and wake up feeling as tired as I had before I fell asleep. It wasn't until I began to get a red skin rash that I sought medical attention. My dermatologist looked at the butterfly pattern of the rash on my face and became suspicious that it was Lupus related. He then ordered a variety of tests to be done which ended with a diagnosis of Systemic Lupus Erythematosus. This diagnosis involved my skin and my kidneys. Not knowing anything about the disease at that time, my parents and I spent a great deal of time trying to get information about the nature and complications of Lupus or SLE. We learned that Lupus was an autoimmune disease in which the immune system begins to attack your own body. In my case, my antibodies were attacking my skin and kidneys.

For one year, my skin rash continued to get worse and soon blisters began to form over the top of the rash. My face, chest, back, and arms were covered with painful blisters that began to break open leaving raw skin exposed beneath. Due to the rarity of the blisters (diagnosed as Bullous Lupus), I then spent three weeks in the hospital at the Mayo Clinic in Rochester, Minnesota. During that time, I wore medicated wraps and took medicated baths to help heal the blisters that had formed. After I was released from the hospital, I was placed on a steroid drug (Prednisone) coupled with an antimalarial drug (Atabrine). This combination of drugs worked very well for me and I experienced seven years of remission. My skin rash completely went away and I was symptom-free for quite a while. 

In 1997, when I was a junior at St. Olaf College in Minnesota, I had my second Lupus flare. While on winter break from school, I noticed that I was retaining water in my ankles and legs. Over a period of a few days, I could no longer fit into my pants. A day or two later, I began to wake up with water in my eyelids. At this point, I began to get worried and I called my Rheumatologist at the Mayo Clinic. I was seen a day after at the Mayo Clinic and underwent a kidney biopsy. As seen from my biopsy, I was experiencing another Lupus flare. However, instead of having skin difficulties, my kidneys were now being affected. The new flare had progressed my kidney disease from Stage II to Stage IV. With stage IV kidney disease, my kidneys were not filtering protein well. This resulted in the protein being lost in my urine. The side effects that I experienced from this jump in kidney disease were high blood pressure, high cholesterol, and inflammation in my kidneys. After this new diagnosis of Stage IV kidney disease, I was placed on immunosuppressant drugs coupled with steroids to help the disease get under control. The process of finding the right combination of drugs took a long time. After 2 years of adjusting medications and eleven doses of chemotherapy, the disease had finally calmed down. While all of this was going on health-wise, I continued to live as normal a life as possible. I graduated from college, began my career as a teacher and got married to my husband Ryan. 

In 2001, my disease was doing so well that my doctor gave my husband and I the okay to get pregnant. The pregnancy was fairly uneventful. In fact, my disease even got better while I was pregnant. My daughter, Olivia, was born three weeks early during fairly easy labor. Even after she was home and my hormones adjusted, my disease stayed in remission. 

Because of the success of my first pregnancy, my husband and I were excited to try again. In October of 2004, I became pregnant again. However, unlike my first pregnancy, this pregnancy triggered a reaction in my disease. For the months of November through January, I was extremely anemic and had difficulty breathing. I was admitted for observation to Abbott Northwestern Hospital in Minneapolis in January. For the next three weeks, I was sent home and readmitted three times before doctors began to understand what was happening to my body. Because of the baby, I was carrying, my disease began to attack my body on multiple levels. My kidneys began to shut down, my red blood cells in my blood were being destroyed, and my lungs began to hemorrhage. Because of the hemorrhaging of my lungs, on February 15th, 2005 I was admitted to the ICU at Abbott Northwestern. My condition had become very serious and doctors were struggling to stabilize me. I was struggling to breathe because of the blood that had begun to pool in my lungs. To help with the breathing I was placed on a ventilator and was heavily sedated. A few days after being transferred to the ICU, I lost the baby. Because of the seriousness of my situation, I remained in a drug-induced coma for five weeks. However, after I lost the baby, my situation began to improve. I received more chemotherapy treatments and underwent continuous dialysis to help my kidneys work. I also underwent a very new treatment that exchanged my plasma for plasma that didn't have as many harmful antibodies in it. After an amazing recovery process, I was released from the hospital on April 14th. 

Once I came home, things quickly returned to normal. I regained all the strength I had lost in the hospital and my disease quickly quieted down 

My Lupus is now back to where it was before I ever got pregnant. I still have high blood pressure because of the kidney disease but my kidney function is still normal. I take medication daily to help the disease stay manageable but feel better now than I have in years.

I feel so fortunate to be living at a time where science and medicine are making advances in trying to understand the nature of SLE. I am positive that if it weren't for medical advances in the area of Lupus over the past five years that I would not be here today. I am also so blessed to have the support of family and friends as they make this Lupus journey with me. Their love and prayers are what have gotten me through the past 16 years. As I wait for a cure, I am so pleased to see how many people are now informed about this disease and are willing to help support those who have it.