The Deathcare System

We live in a world where healthcare is commonly referred to as"deathcare" and patients have to fight for a medical professional to listen to them about their medical complaints. Women are told every day their pain is not pain, it's depression. Her pain isn't pain, it's because she's overweight, or she smokes, she doesn't exercise, or she doesn't drink enough water. The same tests are ordered for the same person ten times in a row with no variation in results. That usually results in the doctor throwing up his hands and declaring he or she doesn't know what's wrong but will give you expensive medication to treat four or five different things anyway. Our healthcare system in this country is rated 11th in the world for its standard of healthcare, behind Taiwan, South Korea, and Singapore. Oregon is ranked 28th for healthcare access and 28th for healthcare quality, according to US News. Healthcare has become a nightmare for far too many. Nobody should have to fight to get quality medical care, ever!

Though I've heard many stories of medical failures, it is the stories of medical torture that bother me the most. I was tortured physically and mentally by the medical community in Oregon. First, I would like to take a moment to apologize to my former doctors. I'm sorry that I can't be just like everyone else. I'm sorry that my body doesn't react in the same way that the last nine patients with the same diagnosis did. I'm sorry that the textbook never intimated that some people may present the complete opposite of everyone else presenting the same day (week, month, year, or decade). Nonetheless, those things are true of my physiological response to illness. I'm "bass-ackwards" if you will.

I had pain, and that meant only one thing in their minds: I was seeking narcotic pain medication. Because they predetermined the diagnosis before they ever saw me, they would stand across the room, arms folded, rolling their eyes, and telling me it was just a sprain, just a pulled muscle, just something that didn't exist anywhere but in my mind. Had they bothered to look and listened to my pleas for them to run a test or two, they would have seen that my toes were beginning to turn black. They would have noticed, even from across the room, that my foot was swollen to three times its normal size. They would have discovered the occlusion in my femoral artery that was depriving my lower leg of blood supply. They didn't. They wouldn't. Not until I had to quite literally threaten a nurse and a doctor with a scenario that would only end when SWAT ended it. A few hours later, it was a flurry of activity as they tried to fix their mistake. It was the start of my nightmare.

By the time April 22, 2021 (the day of my first surgery) rolled around, I had been to the Bay Area Hospital emergency room in Coos Bay, the Lower Umpqua Hospital emergency room in Reedsport, the North Bend Medical Center in North Bend, and the Coquille Valley Hospital emergency room. All of them ignored what I told them, opting instead to make a diagnosis based on my complaint before they ever walked into the room. In doctor's offices, emergency rooms, and clinics all over this country, a complaint of pain is equal to drug-seeking behavior, full stop. The patient is then treated with skepticism at every turn. Symptoms are dismissed as quickly as they are brought to the medical staff's attention because, in their minds, that patient is just a well-researched drug seeker. I had been to three emergency rooms and a clinic. I had seen 6 different doctors. All of them had the same opinion, and not one of them bothered to run a test. Before everything was said and done, it took visits to nine different hospital emergency rooms, one clinic, and two vascular surgery centers. There were countless doctors and nurses. I wasn't drug-seeking; I was fighting for my life! I knew there was something wrong, and I fought to be heard. That's what it took to get the team that saved my life. It was exhausting, and it was something I wouldn't wish upon almost anyone.

First, do no harm. Isn't doing nothing when something is warranted harmful? By the time I got anyone to listen, it was too late. After a flurry of surgeries (over 30) in the following 10 months, I went into the operating room with a team of top surgeons who planned a popliteal bypass, wherein veins would be removed from my left leg and implanted into my right leg to restore blood flow to my foot. I came out of that operating room with an above-the-knee amputation of my right leg. All of the "medical professionals" I had seen to that point could have listened. They could have saved my leg. They didn't. They wouldn't. Now my life has changed forever, and I didn't ask for any of it. It wasn't my poor decisions that lost my leg. It was choosing to go left when I should have gone right. I went where I was supposed to go for help, and there was no help offered. There was derision. There was contempt. There was judgment. There was no help.

After the first surgery, I was immediately taken back into surgery to fix another occlusion. My blood would not stop clotting. A few days later, I began to have hot flashes again. I hadn't had them since the occlusion was cleared, the pain was back, and I knew another occlusion was present. Again, even with the history I had at that point, it wasn't even worth a look. I was again deemed a drug seeker whose only pain was in their behind. I'd have to start the rotation from one emergency room to another, each time with the prayer that I would be heard and treated with the respect that I deserved. When I finally found a doctor who didn't stand across the room with his arms folded or breeze into the room with the first comment being, "You aren't getting any narcotics," it always ended up the same. Nurses and representatives from all of the different relevant departments swarmed my room, and they couldn't offer me pain medication fast enough to suit them. Oftentimes, I was overmedicated, and the people who just two days prior treated me with no compassion whatsoever then suddenly couldn't do enough for me. Nobody apologized. Nobody said they should have listened. They didn't. They wouldn't. To admit their mistake was to admit neglect of a patient based on a preconceived notion because I dared present with pain.

After each surgery, I was given a small prescription for some pain medication, some blood thinners, and well wishes. Sometimes in a matter of hours, the hot flashes would start again, and there would go the circle. That led me to a fight with the pharmacy regularly. Pharmacy staff would often ask me out loud what I needed it for and why I had more when I had "just" filled a prescription for a quantity of 12 three weeks before the current prescription. I was forced to give answers to pharmacy staff...and other customers who were waiting to be served. Their judgment was palpable and much too loud. The proper thing to do if they had real questions about the prescription would have been to bring me to a private area and ask those questions. Since I was often in a wheelchair, just a simple step around the counter would have sufficed instead of the embarrassing and often contemptuous public questioning. I wasn't a pharmacy hopper either. I got it filled at the same pharmacy every time, so they knew all along what was happening. They were there to bear witness to the progression. They could have done things differently. They didn't. They wouldn't. Kindness would have made a world of difference to me, but it must not have been in their job description.

Emergency room nurses were the absolute worst to deal with. I have several stories that I could pass on about the behavior of the nurses I encountered, but one sticks out to me. After my leg was removed, I was left with a gaping hole that ran from my groin and down the entirety of the residual leg, around the end where my knee should have been, and up the outer leg a few inches. The wound was deep, almost to the bone, and all of it had to heal from the inside out. The trauma to my leg at that point was unimaginable, coupled with the fact that my leg had been deprived of critical blood flow for so long that healing was an extremely slow and painful process. To aid in the healing process, a vacuum-assisted closure method was utilized. Commonly known as a wound vac, the device uses negative pressure to draw out any fluids in the wound as well as reduce swelling, encourage blood flow that leads to new cell growth, and reduce the chance of bacteria entering the wound. To achieve this, a medical-grade sponge is fitted to the size of the wound, placed directly into the wound, and held in place by an adhesive film that covers the entire sponge and the skin around the open wound. A hole is placed in the adhesive film, directly over the sponge and connected to a small pump that creates the negative pressure needed to aid in the healing process. The pump is then connected to a canister that holds any fluids that may be drawn out in the process. If you have ever vacuum sealed anything, you know that when you turn the vacuum on, all of the air gets sucked out of the bag, and it leaves a tight seal around whatever it is you are trying to protect. The same principle applies when being used on the human body, and when the pump is turned on, all of the air is sucked out from the wound and the sponge within. If any happenstance causes the negative pressure to be interrupted, the air quickly moves back into the sponge and the wound, making it necessary to seal it once again. It is a very painful process, and it is also a dangerous one. The possibility for infection is high if the wound vac fails. The adhesive film and sponge must be removed within one hour, or the risk of infection begins to rise exponentially. I was instructed by my surgeon and his nurses, my primary care provider and his nurses, my wound care nurses, and the medical supply company to go immediately to the emergency room should my wound vac fail to have the adhesive film and sponge removed and replaced with a wet pack dressing until the wound vac could be reapplied at wound care or with my surgeon. I visited wound care the day of the incident where the adhesive film and sponge were removed, my wound cleaned, and my wound vac reapplied. My machine failed that evening, so I did as instructed and went to the Bay Area Hospital emergency room. Although it was explained in detail to the triage nurse, with printed instructions from my surgeon and wound care doctor, I was forced to wait two hours before I was assigned a room. Once assigned a room, a nurse who appeared to have worked the previous 48 hours straight came into my room. She was not warm. She was not welcoming. She let it be known in no uncertain terms that I was wasting her time. When she started slamming things, she would need to complete the task before her. I asked her why she had such a bad attitude. She told me that it wasn't her job to remove a wound vac and it was ridiculous that I was there. She proceeded to walk over, use the tip of her finger to pull up a corner of the adhesive film, and in one swift movement, she jerked off the adhesive. In doing so, she removed a great deal of skin from around the wound and ripped the sponge from its place inside the wound. With the same gusto with which she ripped the sponge out of my leg, she began to clean it. I was in tears, shaking from the pain she was inflicting, and I looked up to see her smiling. My husband noticed her smile at the same time, and that is when he demanded she take her hands off of me and go find another nurse to finish the job. Because I was forced to wait two hours before even being assigned a room, and then the treatment I received at the emergency room, the infection became a problem, and I was admitted to the hospital a few days later for a ten-day stay to get the infection under control. It could have been prevented by simply listening to me and following through on instructions. The visit could have been different. It wasn't because, in their minds, who was going to change what was already done, and more importantly, who was going to stop them from doing it again? I would be remiss if I didn't mention the outstanding nurses who made a difference in my recovery. Both were men, both named Will. One at PeaceHealth Riverbend and one at Bay Area Hospital. Those men cared about me. They cared that I was lost, alone, and afraid. They fought for me when they didn't think things were being done right. Both came in on their day off to visit with me. Those things made all of the difference in the world, and I thank them and nurses like them.

Another incident happened just before the loss of my leg at the Peace Health Riverbend emergency room. Again, my leg was swollen to the point I couldn't even put pants on. My toes were black. The hot flashes I was experiencing were debilitating. The doctor assigned to me stood across the room and rolled his eyes at my presence. I had been through more than 20 surgeries by the time I saw him, and there was a known and detailed history at that particular hospital, as that is where most of my surgeries took place. He told me that I had learned how to present at the emergency room to get narcotic medications. He then told me he wasn't doing anything but giving me the drugs I was looking for and proceeded to hand me a prescription for five 5 mg Hydrocodone and told me to stop coming to "his" emergency room. I left in tears because I knew there was another occlusion. He didn't listen, and he didn't care. As I was walking across the parking lot to get into my car, a nurse came out of the doors to the emergency room screaming my name. In front of everyone in the parking lot, she proceeded to yell my name once again while waving a box of Narcan at me. She loudly told me as she caught up to me that the doctor didn't want to be responsible for my overdose and wanted me to have the Narcan. I was beside myself at that point. I was in so much pain physically, and that whole scene had just mentally destroyed me. I needed help. I needed to be fixed. I begged him to listen and told him I didn't want to lose my leg. A few days later, I was admitted to the hospital for a stay that would last almost a month while they tried everything they could to save my leg. If he had listened then, I might not have lost my leg. Post-surgery, I was instructed by my surgeon to return to the emergency room to be admitted for infection. That same doctor was assigned to me. He walked into my room, and I was not nice. I made him look at me, and I pulled back the sheet, exposing my residual leg. I asked him a question that caused him to turn tail and leave the room immediately, "Does it look like I was drug seeking now?"

The entire system is broken, and innocent people are paying the price, sometimes with their lives. Right now, as I write, there is what was supposed to be a permanent inside stitch hanging out of my leg. I've told every medical professional that I've come in contact with that there was something wrong. I kept being told that there was nothing there; it must be phantom pain. The amputation of my leg occurred on February 23, 2022. I've begged for that stitch to be removed so that I can put on a prosthetic and walk again since about six months after the loss of the leg. It's still there. I still can't walk.

Upon discharge from the hospital in March of 2022, I was instructed to attend wound care and prosthetic appointments and to attend every physical therapy appointment. I called, and I called, and I called again to set an appointment for physical therapy. I finally received a call to make an appointment for physical therapy in May of 2024! I was stunned by the casual manner in which I was contacted to set an appointment two full years after the referral was made. When I expressed my absolute shock at having been put off for so long, she shrugged it off with, "Yeah, we are busy." Do you mean to tell me that the physical therapy department at Bay Area Hospital is so full and overrun with patients that it takes two years to get an appointment? As a result of their neglect, my leg is locked in an unnatural position. I'm not sure I will ever be able to use a prosthetic now.

After being assigned four different doctors post-amputation, each of whom started our conversation with some version of "You aren't getting any pain medication, so if that's what you are here for, you need to go somewhere else," I was assigned to the most wonderful doctor with the kindest team. Coquille Valley Hospital Clinic staff and Dr. Ravindran have gone above and beyond to make sure that I have what I need medically. When I told Dr. Ravindran that when I got hot flashes, you could guarantee there was another clot, he believed me. When we were positive that I had an infection post-operatively, he listened when I said my white blood cell count doesn't raise like most people's do when there is an infection and asked to add a CRP test; he listened. My CRP test was way off of normal, my CBC was normal, and I was correct in both that I had an infection and which test was needed to identify it. He doesn't waste time anymore. CrP is the first test that is offered now. When there is a new procedure, if he doesn't already know about it, I take it to him, and at the next appointment, he is educated on the subject. The nurses understand that I have medical PTSD. My blood pressure is ALWAYS high in the presence of medical staff. They don't mind when a bump shows up on my leg and I panic and call them. It makes a world of difference to a person to be heard. They hear me, they fight for me, and I appreciate them so much.

My first round of wound care was at Lower Umpqua Hospital in Reedsport. The nurses were kind, caring, and as gentle as they could be. Everything else about the experience itself was torture. Every wound vac change was done without any type of numbing aid whatsoever. I gritted my teeth while they worked on an open wound, redressed it, and turned on the pump to seal the adhesive and apply negative pressure. They would give me time to settle myself before they sent me home until the next time. After being hospitalized for another infection, I was assigned wound care at Bay Area Hospital. That's when I was reminded that doctors DO have a soul and some nurses did become nurses to help people. The entire experience was different from the moment I entered the door. Though attached to Bay Area Hospital, it has its own entrance and check-in process. I was met with a smile each and every time, only giving my name the first time unless asking my name was part of the policy for a medication or a treatment. Every visit after that, they knew my name. They knew my history. They knew my condition. They had a plan, and they executed it flawlessly. Imagine my confusion when, on my first visit, the nurse walked in, cut a tiny little hole in the adhesive film for the wound vac, and filled it full of lidocaine! I watched in utter amazement as she pulled the sponge out of my wound with almost zero pain. With the most gentle hands, the nurse covered the entire wound in a white lotion that was nothing less than more lidocaine! It was not a painless process by far, but there was an amazing difference between the first round of wound care and the second. I found that with a quick call to the doctor, a prescription for lidocaine could be provided for wound care, and they had thought ahead to do that. While they treated me, I learned about them and they learned about me. When staples had to be removed, it was tough going. We did what I could tolerate each time, and then we stopped. The next appointment meant a few more were coming out. He didn't berate me. He didn't judge me. He praised me for what I could do. When I used crutches for the first time instead of a wheelchair for my visit, they celebrated as I came in. While they treated me medically, they treated me with respect and kindness. I looked forward to going to wound care just to see the nurse and doctor. They were an extremely bright spot in a very dark time. It would seem to me that to make the patient as comfortable as possible during a wound vac change, it would be commonplace to attach a prescription for lidocaine with the order for wound care. Why does one have to ask for it, and what of those who don't know to ask for it? There isn't a time, I assure you, that wound care at that level doesn't hurt.

The prosthetic doctor I was assigned could not have been less interested in helping me walk again. He was rude and condescending the entire time I dealt with him. I was given a shrinker, which is essentially a very long, very tight sock that I was to wear on the residual leg to reduce swelling and the overall size of the residual leg. It was entirely too loose, and I was able to turn it on itself the very night I brought it home. I shouldn't have been physically able to turn it on itself that evening had it been fitted correctly. He refused to listen to anything I said about the fit of the prosthetic, instead telling me that it was a proper fit and I just needed to get used to it. When he finally thought to listen to me, he found it was about an inch and a half too tall for me and had to be adjusted. I was given detailed information about the type of knee and ankle I would receive for the prosthetic, and that isn't what I got. The knee was supposed to have a microprocessor, and that's not what I was given. I was told the one he ordered for me was on back order, and he would give me a knee that he had lying around his office until the new one came in. It's been more than two years, and I've yet to receive the call that the much more expensive knee that insurance paid for is ready to be installed on my prosthetic.

In an attempt to get my pain under control after the amputation, I was referred to the Pacific Cascade Pain and Anesthesia in North Bend. I was referred to Certified Registered Nurse Anesthetist (CRNA) Lina Dorfmeister, who owns this clinic, with the assurance that she is good at what she does. Allow me to inform you that she is NOT good at what she does. She is the one who accepts OHP insurance in the area, and she uses that to her advantage. She was rude. She was ALWAYS late, and she assumed that I, as a patient, was uninformed and ignorant. She talked over the top of me. She was unwilling to answer questions. I'm a wheelchair user, and at my first appointment with Lina, I was taken to a different business located below the actual office to wait for the doctor. The nurse came in first, followed (50 minutes past my appointment time) by Lina. In a waiting room that didn't belong to them, and in front of anyone who was walking by and the employees there, she went through my history and then told me she wouldn't do anything until appointment number two. The only reason for this practice is to make more money with unnecessary appointments. At appointment number two. I was instructed to be there 30 minutes early, 12:30 in my case. The office was closed for lunch, so I had to sit in the parking lot waiting for them to show up. When they did saunter in a little past one, the nurse approached me in my vehicle and explained that the only way into the office for a wheelchair user was through the beauty shop next door! After parading me through the beauty shop, I still wasn't able to get my chair in the door. They are NOT ADA-compliant. There is no ramp. The doors aren't wide enough. The bathrooms are NOT accessible. Once I got into the building, I was put into a room where the nurse joined me to let me know that despite them being closed for lunch for an hour just before my appointment, the doctor was just STEPPING OUT FOR LUNCH!!! 1 1/2 hours PAST my appointment time, Lina finally came into the room. She then became VERY antagonistic and rude. When she told me that a patient-doctor relationship should include mutual respect, my answer was simple. I was there, on time, for both appointments. Both times I was left to sit WELL after my appointment time. When I asked her if I sauntered myself into her office 1 1/2 hours past my appointment time, would she still see me? Of course, she said no. So I asked, What about 50 minutes past my appointment time? Nope, of course, she wouldn't, she admitted. We are injured, but we have lives that are JUST AS IMPORTANT as someone with a PhD or nursing degree. I was dismissed with derisive snorts, rolled eyes, and an undeserved attitude. I was made to feel as if I was an imposition on the lives of the people within those walls. I was laughed at, openly, when they wanted a drug test, and I had to figure out how to get into the bathroom and then how to get on the toilet with the prosthetic on, as it covers the entirety of the residual leg. It was the second time I had ever worn the prosthetic, and with absolutely zero physical therapy to learn how to walk, I was figuring things out on my own. The nurse found it funny when I had trouble trying to get her the urine for the drug test. She found it hilarious when the result was me being covered in my own urine. She laughed at me so hard that she couldn't get herself together to help me get up from the toilet. I was mortified, and she was laughing at me. That is typical behavior in that office as well as in many medical offices across the world. The staff outright disrespects the patients, often loudly talking about patients before busting into laughter. As is the case in many medical offices across the world, they don't answer phones, opting instead for a voice mail system, and then they don't return calls. Patients are disregarded as a person until they feel like doing their jobs.

I have the fortune of insurance through the state. My assigned company is THE WORST there is. My assigned caseworker, when I was going through the loss of the leg, was a sadomasochist and truly mentally ill. She loved to see me upset and sent hundreds of text messages to my phone during that time. She did it to the point that I had to threaten police involvement and a restraining order. I contacted her superiors about her behavior, and I was dismissed immediately. The woman was texting me before, during, and after work hours. She told me that she enjoyed watching me get upset and angry. Again, I had to resort to threats to get her to leave me alone and stop texting me. When the threat of involving the police didn't work, the next time she told me that she enjoyed getting me riled up, I told her to hold on to that energy and make sure he had it handy when I got there, and I was on the way. Moments later the phone rang with one of her "superiors" stating she would no longer be handling my case. Since that occurrence, I don't communicate directly with them if I can keep from it. My husband or my son will call on my behalf. Most recently, there have been two major issues with the insurance. One was for the month I had to wait to get a reauthorization for a medication I had been on for 3 years! You might immediately think I needed the reauthorization for a painkiller or anxiety medication, but no. It was for Eliquis, a blood thinner. Next was when my wheelchair broke. It was over 2 years old and had never had any repairs. It was beyond repair and needed to be replaced. It took six weeks to get my chair, though it's my only means of mobility. I was put off. I was shuffled from person to person. I was straight-out lied to by representatives of both the insurance company and Rick's Medical Supply in Coos Bay. It was only after a complaint was filed on my behalf by my doctor's office that I got my wheelchair and my mobility back.

Endless patients exist with no quality of life because doctors refuse pain medication. The opioid crisis didn't just hurt the addicts. It hurt anyone with a real need for pain relief. It went from one extreme to another, the patient being the one hurt in both instances. Doctors have made it common practice to be about numbers. How fast they can get a patient in and out of the door. How many times they can force extra and unneeded appointments on patients. How many patients they can cram into a single day without thinking about the person who may need some extra time with the doctor. I was personally told by two different practices that I had to limit my questions to the doctor to two per visit. If I had more than two questions, I had to make additional appointments to have them answered. Imagine that! I was a brand new amputee, full of questions, and could only ask two per visit. There is something inherently wrong about that situation. That's what medical personnel are there for! It's what they chose as a profession. They had to study hard and work even harder to achieve the goal of becoming a doctor or nurse. Why then, if not money-motivated, can a patient only ask two questions per visit? It should be illegal to demand extra appointments to get your medical questions answered.

In conclusion, I believe that most people within the medical community are good human beings who genuinely want to help people. The trouble is, they will only be as good a human being as hospital policy allows. That leaves people like me without healthcare. Where are the Doctors Gregory House of the world? The ones that will step outside of policy and what is customary to help a patient that they know is suffering? Something has to change. I am not just asking for change; I am demanding it on behalf of myself and the other over eight billion past, current, and potential patients.