“Wow—so much to do—don’t get bogged down with the burden of disease. Try to keep your composure and quality of life.” This was the start of a message I recently received from my nephrologist. This great advice, while sometimes easier said than done, really spoke to me since I have felt quite consumed by my recent diagnosis of PSC – primary sclerosing cholangitis.
There’s a lot that comes along with a new diagnosis and living with chronic illnesses. We deal with physical ailments and side effects of a disease alongside mental aspects like worrying about our future and day-to-day stressors. Not only do we personally endure the health effects, but we see how it impacts our loved ones. We coordinate our appointments, keep our health team updated on our condition, order medicine and handle medical bills. There is a lot more that we are responsible for than just trying our best to live with the disease.
Ever since my PSC diagnosis in October 2017, I feel as though it has taken over most of my thoughts and time. Over the past year and a half, I’ve been in and out of the hospital, endured countless tests, doctor appointments and procedures. I’m wrapping up my fifth four-week course of daily IV antibiotics to treat my repeat cholangitis and sepsis episodes. As the disease continues to progress, there has not been much stability to allow me to catch my breath and even process that I have another big disease in addition to my PKD and other health issues.
On Feb. 14 and 15, my husband, Noah, and I will be at California Pacific Medical Center (CPMC) for my liver transplant evaluation. Since we are struggling to control my bile duct infections, a liver transplant is our only option since there is no treatment or cure for PSC. It feels quite similar to PKD. I’ve been calling it disease déjà vu. After receiving a kidney transplant because of PKD, I never fathomed I would have another disease that would affect my liver.
Through all of this, I’ve noticed how easy it is to get wrapped up in our health worries and responsibilities, and how vital it is to take time for ourselves and find a healthy escape from it all. There have been many days when I’m exhausted after taking care of my medical obligations and day-to-day responsibilities and I haven’t done anything for myself. I’ve become aware of this and my goal is to start doing something for myself each day, even if it is something small like taking a walk around our neighborhood, meditating, sitting in our backyard and breathing fresh air, reading a book or watching a movie. Even the sun needs downtime, and we work hard as patients and owe it to ourselves to rest, recharge and be kind to ourselves. We need to take care of our physical and mental well-being and strive to lead the best quality of life possible.
What do you do for yourself each day to keep balance in your life with your disease?