Disclaimer: I know many good compasionate people in the medical field. I will not tell them how to do their job. As an educator for 30 years, I know how frustrating it is when everyone seems to be an expert about education and your professional observations are dismissed. But, I digress. Back to talking about healthcare in America. It's a broken system and I don't know how to fix it.
During the summer, I go to daily Mass as often as possible. On Thursdays Mass is held in the chapel of our local hospital. It is a beautiful chapel that normally brings me peace. Since Branden's death, I feel unsettled walking into the hospital. I am reminded of the difficulties he faced the past two years. I want to tell his story, but I am unsure of the correct way and just how much I should share. I thought Branden was going to overcome his struggles so that he could help other people with similar issues. That did not happen but I am still here to tell his story.
Branden was officially diagnosed with clinical depression, anxiety disorder, and PTSD in the fall of 2021. I, with my degree from the medical school of Google, was not surprised by the depression and anxiety diagnosis. I had diagnosed him years ago. I don't think he was surprised either. Eventually I will find a way to write about his mental health but in this post I want to focus on the physical symptoms he experienced. But, the mental health aspect is an imporatnat part of the story. Because we had a difficult time finding mental health treatment in Mt. Vernon, he went to both Springfield and Decatur starting in September 2021 for residential and outpatient treatment. He was able to stay with his parents in Decatur during the outpatient therapy.
By January of 2022 Branden was constantly sick, had no energy, and had constant digestive problems. He wasn't eating and was losing weight that he didn't need to lose. In February, after going to his general practitioner, he was admitted to the hospital after blood work showed critically low levels of magnesium, calcium, and potassium. Tests were run, IV fluids were given, and the doctors thought he should probably have a colonoscopy and endoscopy. But, it was the weekend so once his levels were stable they released him and told him to follow up with the GI doctor.
Rather than schedule the tests recommended, the GI doctor required that Branden come in for an appointment. So two weeks later Branden goes to an appointment where the PA looks at the chart, asks the same questions that were asked in the hospital, and then schedules the tests for two weeks later. That appointment could have been an email. I don't understand why it was necessary to see Branden in person and delay getting any sort of diagnosis for a month. After the procedure the doctor said he was happy to report that all seemed normal. When I questioned him on what he thought was causing all the problems he said he didn't know and to schedule a follow up appointment with his associate. The doctor seemed unconcerned.
Branden was feeling slightly better but all the medicines they gave him were just treating symptoms. We were no closer to an answer. Scheduling a follow up appointment took more phone calls and time. There was a miscommunication about the time of the appointment. Branden was told one time but the computer had him scheduled for another time and after having him wait for 40 minutes they told him he would have to reschedule because they didn't have time to see him. Branden did not reschedule, he was done dealing with that office.
There were good days and bad days but Branden complained all the time. In the summer of 2022 I wrote a letter to the clinic in Decatur outlining exactly what I was seeing. They changed some of his medications and that seemed to help a little. But, I knew there was still something wrong. I consulted Dr. Google often. I asked Branden after every appointment if there was a new plan or if they had any ideas. I didn't feel like anyone was taking his symptoms serioiusly. I often wondered if Branden communicated just how bad he felt or if he even realized just how different he became during this time. No one was asking me what I thought and Branden insisted he trusted the people treating him.
By Thanksgiving Branden was in bad shape. His mother finally convinced him he needed to call his doctor. He called his primary care doctor the following Monday and asked to be referred to a GI doctor in St. Louis. His doctor asked him to come in the next day for an appointment first and it was then the doctor really understood how seriously ill Branden was. He and Branden realized that what the nurse wrote in his chart didn't exactly convey how Branden felt he described his symptoms. More blood work was done and once again Branden was admitted to the hospital with very critically low potassium on a Wednesday. His calcium and magnesium levels weren't great either. IV fluids and tests again. Even though Branden asked to be referred to St. Louis the local GI doctor convinced Branden to do another test and assured him if he didn't find an answer he would refer him elsewhere. The problem is that on Sunday the hospital released him because his blood work showed acceptable levels of calcium, magnesium, and potassium. When he asked about the test no one knew anything about it and the GI doctor didn't answer his phone.
It took until Wednesday to get answers from the GI doctor's office. The doctor had scheduled the test for the Monday after Branden was released but didn't write the order. Then we found out he was scheduled for another colonoscopy which made no sense to me. Apparently, the insurance company felt the same way and denied the authorization. But, then after the office made some phone calls the test was authorized for the following Friday, almost two weeks after Branden was released from the hospital. It was deja vu when the doctor called my phone while Branden was in recovery to tell me the good news that everything was normal. Had people not been close by my response would have been "No that is not f***ing good news, because I still don't know why the f*** my husband has literally been wasting away for a year." As you can tell, I was fed up and done with dealing with this doctor. It was obvious he didn't remember who Branden was and it was just a routine procedure to him that cost me a $400 copay.
The next month was a series of phone calls, lost blood work, wrong blood work completed, and basically no progress. He was told the referral was made but he may not hear anything with the holidays coming up. Then we were dealing with other things with his mental health in January. On January 26th I came home from work to find my husband dead. We had just talked the night before about what he needed to do to get his life back on track. One of those things was to call and find out about the referral to a different GI doctor. Seven weeks after he died the offical autopsy report stated that he died from a ruptured duodenal ulcer.
So, why did I write this post and what do I want people to take away from it? I wanted to highlight all the miscommunications and lack of communication that occured throughout our ordeal. The process doesn't flow smoothly in healthcare. You spend so much energy making phone calls and when you're sick you don't feel like making phone calls. I want to encourage people to advocate for yourself and for your loved ones. Even though I did write letters, I never received any feedback directly from the doctor, and I suppose that is to be expected to protect the privacy of a patient. I will always regret not pushing harder for answers or going with him to a few appointments, but I also have accepted that I have no control over life and death.
Someone pointed out to me that while dealing with her health problems every time she ended up in our rural hospital it was like they just put a bandaid on and never took the time to get answers. I am guessing this is because of finances. Maybe it is some effeciency study. Force the patients to spread their insurance money around by referring them to specialists. Of course, I imagine that Branden was asking to go home as quickly as possible during his hsopital stays. It's not like he looked at staying in the hospital like some kind of vacation.
I don't know how to fix healthcare in this country but I do have some opinions in general. "Good" healthcare should not be a privilege people get because they have a good job. It should be considered a basic human right. I am tired of seeing GoFundMe pages to help people pay for treatments. Those donations should go towards helping a family cover non-medical expenses when they have a health crisis. Insurance in this country is so unbelievably complicated. Just like in education, I am tired of people outside of the medical field having so much influence over healthcare. I don't care what letter is behind the polictician's name, most of them are not medical professionals and I am tired of them using healthcare issues to get votes. They will say what they need to say to get party support and to get people to vote for them. It's time we listen to the people actually working with the patients on what is needed instead of the people with political agendas.
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