In June, PBGH had two webinars focusing on a new trend in healthcare and insurance. Healthcare needs to be holistic, ongoing, and well rounded. Not as needed or acute. I recently had a personal experience that proved why holistic care is so vital in healthcare.
My mother came to Pittsburgh on Wednesday, May 26th for a doctor’s appointment the following day. My aunt was recently diagnosed with parathyroid disease. My mother’s symptoms were very similar, so we thought we had connected the dots. These symptoms were plaguing her for several months. We hoped the visit to the endocrinologist would solve all the problems. They did bloodwork and sent us home. No diagnosis, no answers. My mom was thinking she’d head back to her home the next day. I wanted to take her to the ER in Pittsburgh. She was failing right before my eyes. Far worse than I pictured her from the many times we talked over the phone. She did not want to, thinking they would send her home once again.
My mother’s perspective comes from a year filled with trips to the doctors and hospital back in her small town. She went to the ER in October complaining of a pain in her side. A CT scan showed she needed hernia surgery. During this surgery, the monitors detected that she had an aneurysm in her aorta. This led her to seeing a heart doctor. After a very brief visit with a Physician’s Assistant, they sent her home. No drastic interventions needed but they instructed her to make a follow-up appointment. The soonest she could get in was June. Then in December, my mom fell at work and hit her head. Another trip to the ER. They said there was no concussion, and once again, sent her home. My mother started taking a turn for the worst sometime in the early spring, but she played it off. She assumed it had something to do with her thyroid. Four years prior, she was diagnosed with an underactive thyroid. She kept making trips to her PCP. Medications were altered, bloodwork was done, but no major change. And she continued to feel the same, dreadful way. At one point her leg and foot became very swollen. They thought it could be a blood clot, but determined she had cellulitis. More medication given.
Fortunately, I have a best friend who is a doctor and my nephew’s wife is an ER nurse. I was in communication with them, along with my sister in Texas, the week my mother came to Pittsburgh. We all agreed that she needed to go to the ER. They gave me the best support in convincing her to get there. The next step was convincing the ER to admit my mother. Again, lucky for us, my nephew’s wife (my niece) gave me the exact verbiage to use so they would do a full workup. Tell them she is lethargic and confused. Lethargic and confused. That is all I had to say. And sure enough, they did a full work up.
After all the results were in, the ER doctor came into the room with a laundry list of findings. First up, fibrosis of the lungs. The doctor suspected we knew about this because the scarring on my mom’s lungs was so bad. Nope. We had no idea. Then the list continued: possible heart failure, poor functioning kidneys, and GI complications. They admitted my mother into the hospital that Friday night and she stayed for two weeks. These two weeks included 8 teams of doctors trying to piece together what was going on. My sister and I took turns in the hospital room, not only to be with her, but to ask questions and advocate for our mother.
My mother’s health complications were all connected. Come to find out, the fibrosis of the lungs was present on my mom’s scan back in October. Once the hernia was found, it was as if all problems were solved. Band-aid placed. Her fall in December? Looking back, we all think it had something to with the lungs and lack of oxygen. But when she was in the ER, they never questioned the cause of the fall. The trend with my mother’s healthcare seemed to be – Let’s fix the issue at hand with no further digging.
My mother was also diagnosed with two autoimmune diseases: Rheumatoid Arthritis and Vasculitis. More specifically, ANCA disease of the kidneys, which were both effecting the lungs. She started treatment but has a long road ahead of her. We cannot help but think that with earlier detection her treatment would not have to be so drastic.
The symptoms were there all along. The correct verbiage was missing. Not everybody has a best friend that is a doctor and a niece who is a nurse. Remember that when thinking about healthcare.
(Pictured Above: “The Wall of Love” in my mom’s hospital room – entitled by one of the nurses/drawn by my mom’s kids, grandkids, and great-grandkids.)