It has been a long road to a diagnosis and treatment plan for Marian Musumhiri, but after visiting Dr. Hadi Bhurgri, Gastroenterologist at Phelps Health (formerly PCRMC), she now has a name and course of action for what has ailed her the past two years. Grateful for the care, Marian decided to recognize Dr. Bhurgri through the Phelps Health Guardian Angel Recognition Program after the care he provided resulted in an answer. The Guardian Angel Program provides an opportunity for grateful patients to recognize their caregivers who have gone above and beyond during their time at Phelps Health.
In May of 2016, Marian went to the Emergency Department (ED) for elevated LFT levels (liver function test) which were well over the limit for a normal reading. The ED tested her for hepatitis, but her results were negative. After her visit, Marian attended her follow-up appointments, but the only conclusion for her elevated LFT levels was the possibility of hepatitis that had laid dormant. She was feeling better, but was scared at the possibility of hepatitis, and still had no concrete answers. At that point, she decided to forgo any further follow-ups. Several months later, in April of 2017, her levels raised again, and she could no longer ignore the progression of her symptoms since her eyes and skin had turned yellow.
“My eyes were yellow, my skin was yellow, and because I was bruising extremely easily, I knew I had to get it taken care of at that point,” said Marian.
Due to her history of elevated levels and previous trip to the Emergency Department, she was tested for hepatitis, and again tested negative. This time she was referred to a gastroenterologist in Columbia, MO since at the time Phelps Health did not have one on staff.
When Marian saw her gastroenterologist in Columbia, he performed the same tests, and she tested negative for hepatitis. Her doctor’s concern was the possibility of auto immune hepatitis, which is when the immune system attacks the organs. Her fear with the diagnosis was the recommended treatment of long-term steroid use. In order to be certain of the diagnosis, a liver biopsy was conducted and the results were negative, and in fact showed her liver was in good condition. Marian’s gastroenterologist had several other ideas of what her diagnosis was, but the facts were not lining up for her symptoms. The decision was made to monitor her levels every few months and return to Columbia to repeat the same tests again. At that point she was tired of the tests, constant travel, and no answers for why her LFT levels were elevated.
“I was exhausted. I am a single mother, and I was driving myself to and from these appointments. I was just tired and done. I am willing to work to get my health better, but I was not getting any results or answers and I felt I might as well not do the trip and watch it myself. That is where I was at that point.”
When Marian had her yearly physical in December 2017, her bloodwork showed her LFT levels were still elevated. She received a recommendation from her provider, Emily Wiseman, FNP, to see the new gastroenterologist at Phelps Health, Dr. Hadi Bhurgri. Since he was local, Marian decided to make an appointment and follow through with the referral.
“I did not have any expectations, other than I was just there to manage my levels. That was my assumption going into it,” said Marian. “I had managed to get all of my tests released and after talking with him I realized he had read all of them. He then floored me because instead of ordering all the tests I had already done, he ordered 15 tests for one blood draw. My interest was piqued and I realized that we were not going to go through all of what I had done already.”
When Marian returned for her follow-up, Dr. Bhurgri informed her they finally had a diagnosis of Primary Biliary Cholangitis (PBC). PBC is a rare autoimmune disease that causes progressive destruction of the bile ducts and can cause liver damage that may eventually lead to cirrhosis.
“I was so happy to finally have a name for my condition. The past year I had this mentality that I was dead, I was dying, and no one knows the cause. All of a sudden I had an answer,” said Marian. “That was one of the first goals we outlined in my initial visit. It could be a number of things, but once we could put a name to it, then we could treat it.”
After Marian’s final diagnosis, Dr. Bhurgri prescribed her a medication for her PBC to manage the disease. The medication is commonly prescribed to treat a number of diseases, and within two months when she returned for testing, her LFT levels had returned to normal.
“I felt really excited that he took the time to look at the opposite end of the spectrum,” said Marian. “I felt like he was actually listening to what I was saying. He really paid attention to me. I feel like I am back to normal.”
Marian’s disease was caught in the very early stages and is something that cannot be cured. It is a condition which she will have to manage through medication for the rest of her life, but she has a new outlook.
“It is a condition where I can function as long as I stay on my medication, eat healthy, and exercise. The fact that I have a name and a management plan is what is so exciting. Before, I felt like everyone was trying to diagnosis a certain type of disease, but with Dr. Bhurgri it was more [individualized]. He didn’t put me in a bucket, but he was really trying to look at me and my situation, and that is what was amazing about it.”
She is not out of the water and will still need to undergo another liver biopsy, but she is confident in Dr. Bhurgri’s ability and grateful for the care she has received.
“I completely trust him, and I am to the point where I will do whatever the plan is for me. I am so grateful to Dr. Bhurgri for being open-minded and taking care of me as his patient, not a disease.”
For more information on about the Guardian Angel Recognition Program or to make a donation, please contact Marsha Rana Wayman, CFRE, at (573) 458-7946 or firstname.lastname@example.org.