Disclaimer: I’m not physician, nor is this an article against providers. I have the upmost respect for healthcare, but there are some instances, just as any industry that problems occur. This is my journey and what I’ve learned along the way.
We can all agree that healthcare is a basic need to keep us healthy and combat or control medical disorders. Our health system is flooded with extraordinary physicians who work miracles around the clock to ensure each patient is treated and well taken care of. Sometimes, as a patient, you hit a wall when it comes to finding doctors, and depending on your insurance, you face a litany of red tape to receive the proper investigational scans, operations, specialists, or medications. Even if you have a PPO, you still hit some those same walls as well. Physicians through time have become prisoners to the system whether it be from insurance, administration or overworked. This prison causes a trickle-down effect of losing the finesse they must have to make them desirable to seek out.
Primary Care physicians can attest to this. Generally, they could give their patients 30 minutes of their time to listen and understand the patient. Today, primary care establishments have been pressured to produce as many patients in the day as they can- a patient mill. Note, this does not apply to all facilities, but it’s a common complaint among many doctors and patients. Nowadays, when you walk in, the nurse takes your vitals, asks why you are there and leaves the room. Through the walls you can hear the physician hurry through other patients visit. The doctor walks out and the nurse says you have a patient in room A, B, C and D. Great, you think. The doctor walks in, flustered and asks what’s going on. Most patients have everything that has been ailing them in their head right before they walk in. Some phenomenon happens when a doctor comes in, the information suddenly dissipates, and you are left searching for the pieces in the short time you have left with the doctor. The physician doesn’t have the full scope of what’s going on with the two things you are able to muster. You are labeled with something that doesn’t fit all the symptoms you have experienced. You are told to keep a watch on it, sometimes given a med that is unnecessary, and off you go. The total time spent is generally 10 to 15 minutes. Sometimes the physician has a list of specialists they like, and they will tell you to see them, which is a whole other issue.
So here we are both the physician and patient suffering what most people call a patient mill. What administrators don’t realize, is that the more time a physician spends on a patient, the higher they can bill and the more money they will get, since that’s the administrations bottom line. Instead they would rather charge several low-level visits. Of course, that’s my own opinion based on my background.
So, what brings me to talking about taking control of you own healthcare? Well I will tell you about a health scare that I went through a couple years ago, and how that triggered hindsight about warning signs of my stroke.
Around September 2018, I got up from my sofa and when I got back, I passed out. There was nothing from that day or night that would indicate something was amiss to cause this. The EMT was called to the house and I was rushed to the hospital. The physician said I had vasovagal syncope and to follow-up with my primary care doctor. The following day I decided to go to a company picnic. I felt fine at the time, however towards the end I felt worse. My friend drove me home and I went inside and laid down. As the hours passed something wasn’t right. I got in my car and drove to the urgent care center that is connected to my primary care office. I was able to see my primary care doctor. I told him I went to the ER the other day from passing out and I’m still not feeling good. He told me it sounded like classic syncope and suggested I might have digestive issues. Digestive issues? He sent me on my way. The following week I was driving feeling perfect and my breathing began to labor, my heart raced, my vision was going out. I pulled over and called 911. The EMT told me the same thing and asked where they wanted me to go. My dad, a former firefighter had listened to the radio and rushed out to me. I was on the phone with my mom when this happened which prompted him to listen for my location. I declined the hospital at the time because my father was there. A couple days later I sat in a meeting and suddenly my body temperature felt on fire. I was out of it and couldn’t comprehend what was being said. After my manager and director both said I didn’t look good, I went down to medical office in our building. By time they took me to the room, and they hooked me to monitors, my stats where all over the place. They called 911. I was rushed to the hospital- one I will not name because it was awful. Despite the awful care that I received, from ignoring my vitals going through the roof, the physician told me something that was the best advice- call your cardiologist. Background, I have SVT which is a heart problem where my heart will go from normal heart rate to an erratic high rate. I called my primary doctor, and despite the urgency of the issue, they couldn’t get me in for a week. My cardiologist said they would get me in two days. I spent many nights crying on the floor because my body felt like it was on fire, I couldn’t breathe, my heart was racing, my limbs were shaking like a waking seizure. It was the worst feeling I have ever had at that point.
My cardiologist took time to listen to everything, and even asked me questions that triggered me to remember what I was going to tell him in the first place. He told me this was unusual but suspected there was something underlying going on. He ordered a tilt table test for the following week. A week later before the test I saw my primary care doctor. He told me that I’m suffering from panic attacks. That’s it. He didn’t take in account that I was healthy, had no issues in my life, and have never passed out before. It’s easy to label someone with a mental disorder when it’s a struggle to figure it out. I was livid when I walked out of the office and promised I would end my 20-year relationship with them. They went from a caring medical group to a patient mill. A day later I went through the tilt table test. I won’t go into detail what that involves but it was not pleasant. My vitals spiked on numerous occasions and my BP could no longer be read through the machine that they had to manually take it with the cuff. After waiting in my room, the cardiologist in the procedure room walked in and said I have POTS. What? He explained its postural orthostatic tachycardia. He said he would make a follow-up appointment for me with my primary cardiologist. When I saw my doctor, he said he suspected that’s what I had and said I also have an autonomic disorder. Basically, my body is internally in fight mode where all the systems to react and fight. He told me he would handle my heart problem, but I needed a psychiatrist. Why? He told me the psychiatrist can prescribe meds to calm the fight mode down in my system. I agreed, and met a wonderful psychiatrist, that I handpicked that tried several meds until finally the summer of 2019 I felt like myself. Now I could’ve taken my primary care doctor’s initial panic attack diagnosis and moved on. My psychiatrist said that was neglectful care, and people with panic disorders don’t pass out on numerous occasions.
How this connects with my stroke:
At 21 I experienced my first migraine. I can only describe them as relentless and it doesn’t care what time of the day it is. It sucks the life out of you and takes away a piece of your life because if you are out having fun and one hits, it takes you hostage where you must leave and retreat in a cold dark bedroom. I didn’t want it to infringe on my work so for several years I would place an umbrella up to block the light and wear my sunglasses, sometimes I would place an ice pack around a headband. It became a part of me. I went to my doctor numerous times and he just agreed with me that I have a migraine and plenty of people get them. He sent me to someone that works with their group at their office for a check and they blamed it on cervical dislocation. So, I chased that rabbit hole, of something that had no bearing on my migraines. I wonder to this day, if the migraines were just ready to burst at any moment. If I had yearly CT scans or angiograms, would they have caught that vessel behind my eye protruding ready to rupture? In its infancy I doubt it, but as the migraines intensified to every day, I can’t help but think they would’ve caught something. But as I said, my concerns were wrapped up into a 15 minute or less with little investigation. Then Jan 28th, 2020 the same area that I’ve complained about ruptured causing my SAH stroke.
So, here is my advice on how to take control of your healthcare:
1. Good doctors exist, do your research on a good primary care doctor by looking up the doctors and reading reviews on the office. Don’t read five- there are some die hard loyalist that don’t have major medical issues that attest they are the best. Use the search engine and read different websites that give you a different viewpoint.
2. If you see a primary care doctor and you don’t like how quick they assessed you, drop them!
3. If you have multiple health issues, skip the primary doctor and see an internal medicine doctor.
4. Always organize your issue on your phone or piece of paper. You won’t forget to ask questions if they are right in front of you. This will force the physician to answer them. Take note on their advice. This helped after my stroke to ask my neurosurgeon questions since I have short term memory loss.
5. If there is something that is ongoing and afflicting you, you have the right to bypass the primary doctor (except HMO) and find a specialist. Do the same research to find a good specialist that has good reviews, or in their bio, matches what you are going through.
6. Don’t be afraid to ask what to do? No one can live with something distressing them and bringing down their quality of life
7. Research medical conditions. Yes, Dr. Google is awful, and I’m not a fan of it. Use trusted websites such as Johns Hopkins University, Mayo Clinic, Cleveland Clinic, NCBI. There are others, but if you do your research, you might stumble across something that you can bring up to your physician. I do warn, do not ingest all the information too much that you begin to think you are having another ailment. Only focus on the keywords of what is bothering you. Also, don’t go into the appointment that belittles the physician with all the information. Simply state that you investigated it and if they agree there is a possibility. Remember, the doctor has the medical degree.
8. Doctor shopping is hard, but you will find the right person! It takes a lot of work but it’s worth it. All my specialists that I see are from my own research and I’m happy with every single one of them. I did try a specialist suggested by my primary, and it was not a good experience. Not to say it’s that way for all, but finding the right fit is essential.
9. Keep a medical journal. Anytime you experience something unusual, note the time, date, what you did up to an hour before, food you ate, how much fluid you took in, any meds you took prior any stressors. This will map your medical problems into a cohesive timeline, so physicians can see if there is a common denominator. I don’t recommend this as daily use for healthy patients, but for people who are experiencing unusual problems.
10. In your medical journal, track the medications you are taking. Did they work? Did something cause an adverse problem? Is it making things better?
11. I will leave the last one: your body is your temple. Keep a healthy lifestyle: workout, eat right, drink a lot of water, practice mindfulness, take time for yourself.
Overall, we do have control of our healthcare, whether it’s how we take care of ourselves, select physicians, investigate, never give up, and track problems. Never take no for an answer. Our lives are precious and doing what we can is the only power we can give ourselves.