Keish Jackson lives with four chronic illnesses — lupus, scleroderma, interstitial lung disease and pulmonary hypertension. For ILD Awareness Month, she shares her diagnosis journey and how she balances her conditions with being a mother, wife and patient advocate. Jackson is from New Orleans and has a 23-year-old son and 16-year-old daughter.
When Hurricane Ida barreled through New Orleans on Aug. 29, 2021, I was in a hospital room recovering from brain surgery for excessive bleeding. Through my window, I watched the winds wreak havoc on my city. Yet, I found peace.
Having pulmonary hypertension, lupus and interstitial lung disease feels like living each day in the eye of a storm. When I was diagnosed with lupus (systemic lupus erythematosus) in 2005, I didn’t imagine the journey ahead.
After my son’s birth in 2002, I experienced severe fatigue and joint pain, which my doctor attributed to postpartum. When the symptoms hadn’t subsided a year later, my doctor performed additional testing. The tests confirmed I had mixed connective tissue disorder, an autoimmune disease that attacks muscle tissue, with signs of lupus SLE. The next year, I received a formal lupus diagnosis.
As a new mom and wife, I had to adapt to chronic fatigue along with swollen joints. At times I couldn’t bend my arms for weeks because they were so swollen and tender. Even holding my baby was painful, but his little body next to mine was calming and peaceful.
In 2010, I noticed I had difficulty breathing and struggled to complete daily walks with my year-old daughter. After many visits to specialists, my rheumatologist diagnosed me with PH and interstitial lung disease.
In 2014, I was referred to a cardiology and PH clinic to help manage my treatment progression, but I didn’t go right away. I was tired of seeing specialist after specialist, only to hear, “You have to treat the lupus to treat the other symptoms.”
Eventually, my rheumatologist helped me understand the seriousness of my condition, especially without treatment, so I went. A right heart catheterization confirmed PH. After that, my care team started to form.
My cardiologist started working closely with my rheumatologist to aggressively treat my illness. I also began to see a pulmonologist to monitor my interstitial lung disease, who referred me for prescreening for a lung transplant as a possible treatment option.
My daily life required extreme organization. My PH treatment included pulmonary rehab twice a week, wearing oxygen 24/7, taking Tyvaso (treprostinil) four times a day, Adempas (riociguat) three times a day and Opsumit (macitentan) once a day. Now, because my PH levels haven’t elevated, I just take Opsumit. For my lupus, I receive monthly infusions and take additional medication to manage symptoms.
With my health issues swirling around me, I felt like the chaos never ended, as if I was in the eye of a constant storm. Through it all, I still felt like I had to be the best mom, wife and person possible.
In August 2021, I messaged my rheumatologist about a headache. After a CT scan, I was rushed to the ER with a brain bleed. The medical staff couldn’t believe I’d driven myself to the hospital, noting most people in my condition would be unconscious and intubated. They performed a craniotomy the next day. Surgeons removed a piece of my skull and used more than 70 staples to close the incision.
During my recovery, doctors from pulmonary, rheumatology, cardiology and neurosurgery rotated in and out of my room. I laid in my bed for three days in ICU and drew on my faith to find peace. My faith is the reason I remained calm amidst the flurry of medicine, nurses, doctors, diagnoses and exams. I thought that the worst was over.
Ten days later, Hurricane Ida struck New Orleans. With the city evacuated, the hospital went on lockdown. My family hunkered down at home because my husband refused to leave the area without me. Safe in the hospital, I felt guilty they had not evacuated.
Thankfully, my family was safe during and after the storm. Power outages lasted weeks, which impacted everything including the supply of food and gas. After power returned to the majority of the city, it was another 10 days before power was restored to my home, and I was discharged.
That first night home, it was wonderful to wake up in my own bed. I watched the sunrise, and thanked God for another day. While in the hospital, I would watch the sunrise every morning and read my favorite Bible scripture: “Daughter, your faith has made you well; go in peace and be healed of your disease,” (Mark 5:34). The peace of the transition from night to day helped me feel grounded.
In September 2023, I advocated on Capitol Hill with the PAN Foundation, an organization that provides financial assistance to patients. The experience motivated me to continue advocating for more accessible health care with the Lupus Foundation and PHA. Seeing the positive impact of sharing my story has been life changing. Advocacy has helped me have a sense of purpose and peace.
With my medical team and the love and support of my family, my health has improved greatly. My PH pressures are nearly normal, and my interstitial lung disease has not progressed.
When the symptoms, doctor appointments and medications make you feel like you are in the eye of the storm, remember: Be still. Breathe. And find your peace.
