Kim Everett of Manitowoc, Wisconsin, has lived with lupus for more than 40 years and pulmonary arterial hypertension for over 20. For Lupus Awareness Month, she shares her diagnosis journey and advice for navigating life with chronic illnesses.
I was diagnosed with an autoimmune disease at 23. I’m 65 now, so I’ve learned to live around the complications and frustrations of chronic illness.
Navigating PAH and lupus sometimes feels like being in a 12-step program. Living life despite the challenges of chronic illnesses is a daily practice. It takes commitment to yourself. It’s important to find ways to experience life with passion and joy and embrace who you are, flaws and all.
Nearly one in five people with lupus develop pulmonary hypertension. For Lupus Awareness Month, I wanted to raise awareness of both conditions.
From diagnosis to lifelong management
Like many with lupus, my diagnosis took a while. One of my early symptoms was immune thrombocytopenia, which means low blood platelets. My body resisted treatment for nearly 10 years, which was frustrating. Other lupus symptoms came and went with no long-term relief.
A few years after my diagnosis, I developed blood clots with my low platelets. I was then diagnosed with lupus anticoagulant, which caused multiple blood clots and pulmonary embolisms. Treating a bleeding disorder while clotting at the same time challenged my hematologist and frightened me. I endured many hospital stays, treatments and lab tests, but nothing worked.
In 2002, I couldn’t seem to recover from another pulmonary embolism. A hematologist dismissed it as deconditioning, but I wasn’t convinced. I then turned to “Dr. Google,” found the Pulmonary Hypertension Association and located a PH specialist in 2003. I was diagnosed with mild PAH and started treatment with a calcium channel blocker and CPAP at night.
In 2007, I received an experimental autologous stem cell transplant, which resolved the ITP and blood clotting. But the damage to my body couldn’t be reversed. I still have chronic clots in my legs, though thankfully not in my lungs. My lungs were damaged by previous blood clots, and my PAH continues to progress, thankfully slowly.
Regular visits with my PH and sleep specialists have helped me stay ahead of the disease. Early treatment and diligent follow-ups have benefited me. I manage my PAH with three medications, overnight oxygen and BIPAP.
Throughout the doctors’ appointments, treatments and frustrations, I continued to live life. I didn’t dwell on the symptoms and took the doctor’s appointments and blood tests in stride.
I raised a family, built a career, traveled and found a way to pursue my passions and seek joy. I didn’t let an autoimmune disease control my life. I learned as much as I could and constantly sought out new treatments and information. Knowledge is power.
Keep on keeping on
I still stay active despite PAH and lupus. My husband and I love to travel, even if it means bringing a small oxygen tank and BIPAP along. We bike, RV across the country and travel internationally. My medical equipment has been to many U.S. states, Asia and Europe several times. If you’re living with lupus and PAH, here’s my advice:
- Whether you’re at home or going on a trip, plan your day. Planning can help you pursue your passions while sticking to a schedule that works best for your body.
- Build the right care team. Having a PH specialist and a team of doctors that make your health, well-being and quality of life their priority is essential.
- Live in the moment. Don’t get stuck thinking about the “what ifs,” because worrying about them won’t change anything, and dwelling on them robs you of joy.
- Find a way to fill your life with join. You are a whole person, even if you have difficulties with tasks, or sleep in when you need to recharge.
Photos courtesy of author
