Hello all! In Jennie's memory, we continue to keep her fight for a cure going because she never stopped fighting. Once again, I am adding in Jennie's own words, her journey with lupus. Unfortunately, she lost the battle in 2016. Please support me through this fundraising page!
My name is Jennie Hoeft and I am a Lupus patient.
My journey with lupus began in December 1994. I was only six years old and I had what the doctor thought was a virus. My temperature was 102 degrees and I felt extremely tired. My parents took me in to see the doctor two days in a row and he just kept saying “it will get better.” On the second evening, my mom thought there was something more going on when she noticed that I was using my left hand to eat dinner, even though I am a righty. The next morning, I woke up in extreme pain, holding my right side, and dragging my right foot. My parents rushed me to the doctor again and this time he sent me directly to Children’s Hospital of Wisconsin. As soon as I arrived at Children’s, the nurses and doctors started doing all kinds of tests. It took about two days before we got the diagnosis of systemic lupus erythematosus, which is unusual since most lupus patients suffer for months or years before they are diagnosed. The rheumatologist told my parents that I had three blood clots on my brain, my liver and spleen were enlarged, and I had a heart murmur from the fluid around my heart. Luckily, I was too young to realize how serious and life threatening my condition was. I barely remember any of it.
I was in the hospital for nearly two weeks as the doctors continued testing and treating me with high doses of IV steroids to help get the lupus under control. I remember being worried that I wouldn’t be home in time for Christmas, but then about a week before, I was sent home.
In January of 1995, I had a kidney biopsy because my blood pressure was very high. The results revealed that the lupus was attacking my kidneys. I was placed on numerous medications, including prednisone and IV Cytoxan for 2½ years. This is a strong immunosuppressive drug that has severe and sometimes lasting side effects. After a long time, my health slowly began to improve and my Cytoxan treatments were decreased, along with the high doses of steroids.
Over the years since my diagnosis, I have been in both remissions and flares and I continue to be monitored closely by my medical team. I visit the rheumatologist every three months. The fluid around my heart caused a lot of stress on my heart valves, and because of all of the scarring it caused, I currently have a moderate heart murmur. So for that, I see my cardiologist once a year which also includes the amazing stress tests and echos. Within the past few years, my lungs have been involved and due to the scarring in my lungs, I now have breathing issues and see the pulmonologist once a year. I have had skin involvement with funny rashes here and there. The skin on my face is so sensitive, I wasn’t able to use any sort of sunscreen on it or it would literally burn my face. For all of these issues, I have my dermatologist who has helped control the skin issues and helped me find a sunscreen that works, finally!
Many people don't realize that lupus is more than being tired and having joint pain. It is a life-threatening disease that can attack any organ in the body, as mine truly has. Every person diagnosed with Lupus has different symptoms and different organ involvement. Either way, Lupus is a hidden disease. For me, if you walked past me on the street, unless I was wearing a bright shirt saying I HAVE LUPUS, you would never know. But my lab work, joints, lungs, and heart all say something different. With the help of my medical team over the past 20 years, my Lupus is fairly controlled right now.
If it weren’t for all the research that has been done on the disease to diagnose and treat it, who knows where I would be. With the help of research, the diagnosis of Lupus is much easier now-a-days, and there are more treatments available to help control the disease. The research can never end though, until we find a cure for this cruel disease.
Today I am 26 years old, and in my lifetime, I have been through a lot and have accomplished many things along the way. Growing up with this cruel disease, I believe, has made me into the person I am today and has helped me find a career within the medical field. I have a bachelor’s degree Biology Biomedical Professions with a minor in Chemistry. I am currently working full time as an Analytical Chemist at Nova-Chem.
I have never let my Lupus hold me back from anything I wanted to do or try in my life, and I don’t plan to ever let it. Who knows what the future will bring to me but whatever it is, I’m going to be ready to fight, because I refuse to let Lupus control my life.
Thank you all for your support and hopefully soon we can end the cruel mystery of this disease.
