The following is the true and witnessed account of the events occurring at the UW Montlake Center.
Names of my care angels are listed, but I have reserved names of individuals who have inadvertently and accidentally caused me harm. Some of them I did not ask purposefully.
ACCIDENTAL DISCOVERY
MAR 4 2022
My appointment with my doctor, Dr. Kirschner in which she orders thoracic MRI to get a current picture of my thoracic spine, which continues to be problemataic since the blunt force spinal trauma I sustained during my time serving in the Gulf War.
THURS MAR 10
MRI at Jeffco Main hospital
A phone call after this emphasized that new MRI needed for a "shadow" top of last one. Request forwarded to VA for immediate action.
TUES JUNE 14
Three months later, MRI Jeffco Main hospital.
TUES JULY 19
I have a call with Dr Ferreira, UW neurology, telling me I have a meningioma bilaterally on the crown of my head, its location on my saggital vein, and that there's a 3 month window before it is 100% occluded. He asks me if I'd been having symptoms, we talk about trying to differentiate 25 year back injury from a parietal tumor that has similar signs. In any case, he says not to wait, that he has a good surgeon who can fit this into his schedule quickly if I agree to the surgery. He said no other protocol would work quickly as we needed it to, since it was discovered so late, so I agreed.
MON JULY 25 I have a call with Dr. Ruzevick, an MIT grad and Johns Hopkins repute; we scheduled surgery for August 26th. There were other procedures they would need, an email with details was forthcoming. When I advised I have a few complicating conditions from my Army wounds, he assured me a nurse would call me for pre-operative instructions and to answer my concerns and prepare me.
FRI JULY 29
I received an email from a floating care coordinator, thomasxx@uw.edu
WED AUG 3
I return an email to Thomas alerting my team to a transportation difficulty on one of their many additional and necessary steops, and ask again who to speak with regarding the severity of my conditions. Never did get a reply.
THURS AUG 18
Made 2 calls to 206 598 5637 given in UW correspondence seeking a resolution to the one appointment conflict. Monday the 22nd they scheduled a COVID test that required me to get my sick little body from the surgical campus to a testing site near the Northgate Mall at 12:10 and make it back by 12:45 for my 1pm doctor appointment. This trip depending on traffic can take an hour or more and I would have to take public transportation in my condition. Without the test on Monday I couldn't have the angiogram on Tuesday the 23rd, and the whole schedule would be delayed an undetermined time, and by this time their estimate of remaining life was 6 weeks.
No replies.
SAT AUG 20
Made a call to 206 732 3200 spoke to a few operators and one w said she would call me back with at least someone who would know what to do. She didn't call back.
SUN AUG 21
Made calls to:
206 724 4489
206 726 1717
206 547 2369
800 568 2705
206 732 3200
206 598 5637
CARE COORDINATOR WOES
Somewhere in the notes, I have written my actual care coordinator was Ty, and I forget if one of those is his number or if I was transferred to him, but he was the person tasked with coordinating my care. I explained the seizures and other medical needs that seemed to be at odds with this particular part of their schedule, without provision for getting me there or an alternative for very ill people. His response was that my refusal to take a test would mean a cancellation of my procedures. Then I asked him why he was misquoting me and threatening to divert life-saving medically necessary treatment, and that there has to be some way to test me for the virus in the hospital. He said and they make EVERYBODY travel ten miles north of the hospital to a PARKING LOT to get a nose swab that has to be then securely tested and delivered BACK to the hospital, the same hospital who was telling me how ill and close to death I was. He just kept saying there was nothing he could do.
MON AUG 22
I got back on the phone, called
206 598 5637 x 2
206 59 9460
206 520 5055 x 2
206 732 3200
finally I spoke with some angel who had literal footwork to do, but finally got me authorized a COVID test that would be administered while I had my pre-op blood draw. She told me she wrote it in my notes of the electronic file, but cautioned me that the notes stack, so tell whoever is looking it's at the bottom.
TUES AUG 23
At the in-person pre-op with (nurse?) Anna, she asked me about medications and supplements, and cautioned no NSAIDS some days before the angiogram, which for me was the following day! I asked her why was I hearing about this now, I may have taken some considered inside the disallowed timeline. She told me they would have to reschedule all my procedures! Again in tears, I asserted these were life-saving measures that don't have much leeway, which was when the COVID test came up in the conversation. She said there were no notes authorizing a change in their protocol and now they definitely had to reschedule me. She asked why I couldn't just follow their directions, and I because I was between seizures at the moment, I had to explain that I'm EXTREMELY ILL and have severe symptoms, especially seizures, some severe enough to cause open head wounds. Her reply was "Well, you made it here, didn't you?" Yes, from the hospitality building 3/10 of a mile away, I said, and had two seizures. How many were medically acceptable to get a COVID test, in her opinion?
After my insistence, she scrolled to the bottom, and found the authorization after all.
This is the same person with which I had to then entrust with my pre-existing conditions that they needed to know. But I was ready with my notebook and gave her the residuals of the back injury:
Myofascial Pain syndrome, Joint Hypermobility Syndrome and CENTRAL apnea, which is different from obstructive sleep apnea. IF I'M NOT AWAKE MY BODY DOESN'T BREATHE WITHOUT ASSISTANCE. I cited two sleep studies, one at a Franciscan hospital, the other in the UW Medicine Sleep Clinic, that showed I wake up on average 22 times each hour, presumably due to progressively shallower breaths until a threshold causes waking. I emphasized it is due to this that they MUST WAKE ME before extubation, that I've done it before and it is especially necessary after anaeshesia, VERY IMPORTANT;
vagus nerve damage, which has negatively impacted the sympathetic and parasympathetic responses, given me Multiple Chemical Sensitivity Syndrome, Fibromyalgia/Chronic Fatigue -- all of which when overstimulated, result in engaging my panic disorder. Symptoms progress to shock and shortly after, seizures; past complications include: organ infections, sepsis, shock, SEVERE panic attacks, and syncope;
gastroporesis- my own doctor in Jefferson County and a naturopath in Seattle have been helping me deal with the residuals of chronic dehydration and malnutrition, which needs to be taken into account when reserving food and water from me.
I asked for NO NARCOTICS AND NO MUSCLE RELAXERS due to their extreme effect, demonstrated time and again. Anna seemed to be taking at least some notes, not agreeing or disagreeing.
WED AUG 24
Angiogram scheduled 9AM
Did not eat much day prior due to gastroporesis, already beginning to have some signs of shock. TV screens in waiting room advise that if appointments take longer than 15 minutes to call you, inquire at the desk. Waited until 9:20 then made inquiry at desk, but response was that ALL angio patients for the day are called in at the same time and taken in order determined by doctors. There was more but my convulsions began and I lost conciousness.
**NOTE NEEDS TO BE MADE that when I woke after this procdure, the staff was right beside me and extubated me right then just as I had requested. It was expertly done, and my breathing became less labored as the anaesthesia wore off. Kudos to (I think it was Dr. Walker's) team!
SAME DAY
Results of the angiogram seemed to set me up for surgery the very next day, which was a day earlier than scheduled. They explained that something the doctors saw must have made them want to get me in sooner. For this reason I was not to eat or drink after 10 pm tonight, which left a tiny window for food. I couldn't eat much and sometimes what I could eat would come back up. I was already hungry and weak.
THURS AUG 25 9AM
A doctor not on my team came in, advises my surgery is going forward as scheduled on Friday, the following day, so no food after 10 pm today. They told me they were going to discharge me so I could sleep at the hotel, eat out, and check in an hour early for my 5AM MRI the next day, but I asked if instead I could just spend the short remainder of time resting in place, since as I've tried to be clear that MOVING causes great pains and seizures, and they let me. At least I got to eat.
FRI AUG 26
Blood test, MRI, surgery
NARCO-LOCK
The surgery took apparently about 4 hours. Narcotics were used, as was protocol, as they told me later "you would have been awake and screaming during the operation." Instead, I woke up on a moving gurney surrounded by staff all giving me their own sterno-rubs, calling my name and trying to get me to breathe. They had already extubated me and I wasn't breathing or waking up so they kept shouting louder and rubbing my solar plexus harder. I could see their nametags, watch the light changing as we rolled through the hall, and I could certainly hear the panic when they talked to each other about what to do next. I couldn't move a single cell, but I could feel their various knuckles of different sizes, angles, takiing turns crushing my solar plexus, bruising me, just about to crack bones. About then, someone had put some oxygen on me I think, and with all my soul I reached my left forearm up just as a new person, a sweet nurse I had just met the day before, was about to give HER sterno rub and all I could do was curl my fingers and let my arm fall, scratching the back of her hand with my fingernails. She cried out, pulled back, and said, "That's gonna leave a mark." But at least they stopped.
AUG 27 - 30
ICU with awesome nurses Tiffany, Liz, Cristina (and others) floor 5
These nurses were instrumental in the first few days after the surgery, since my systems were trying to adapt, poorly without much nutrition recently. I had checked in with the surgical team about the IV drip, and it was not a glucose solution but a more keto-friendly solution, which helped immensely as sugars exacerbate many inflammations. They went above and beyond making me as comfortable as they could, with ice chips and little extras, even holding my hand when I became overwhelmed with all the somatic discomfort, noises and lights.
The doctors came by and told me I was a good candidate for in-house rehabilitation once the insurance approved it. People came to work with me to get me mobile asap, and by the last day in ICU I was standing up 4x a day to wash my face, brush my teeth, and doing muscle strengthening leg work. Toileting required a strap under my arms for safety, arranging the bedside area and bedrails, and a nurse assist to get onto the commode. I had no feelings of fullness in bowel or bladder so made trips every couple hours to prevent accidents.
FRI SEPT 2 7PM
moved to Rehab, Floor 8
FALLING IN THE CRACKS
The nurse Gina who put me into my room apologized for the difficulty getting me settled due to 1- ICU did not technically discharge me, they await insurance to approve in-house rehab; 2- Rehab dept could not then technically admit me, and 3- this was happening at a shift change, day into evening -- AND a long holiday weekend, so they were having trouble getting hold of staff or get the info about me they needed.
DELETED DATA
The nurse also informed me whoever undertook this action also deleted my patient data, so they were unaware of my details, history at the hospital, or any medications. The medications prescribed included an antibiotic, an anti-convulsant, a steroid, a pain reliever, and heparin shots in my abdomen.
MENTAL PATIENT
Three shift changes over the next day or two, I heard the nurse on duty inform the new one that I was PSYCHOSOMATIC. My visitors tried to comfort me telling me it was probably in reference to other patients, but a nurse confirmed to me that it had been written in my chart by staff.
NO BATHROOM
When Gina was getting me settled in I mentioned that there was no commode in my room, and asked how I was to relieve myself. She showed me a "wick" which is a cucumber shaped device that begins to vacuum when liquid is detected, and then wrapped my bottom up in a bath towel sized absorbent material (a giant diaper) as the nurses were transferring me to the new bed they had another pee pad underneath me. My instructions were to pee myself then call the nurses to change me, and when I needed to poop they would hold a bedpan underneath the cheeks while I was still supine. Without physical therapy OR bathroom privileges, I was just supposed to literally lay there until my insurance approved the rehab.
CONTROLLED SUBSTANCE
Since I couldn't bathe or shower, I asked to have some peroxide to clean myself with, but I had to get a lecture on how dangerous this stuff is, watch the nurse dilute the 3% by half water, only to be handed old fashioned wooden pick swabs for my ears... the caution and clucking I got over that request still boggles my mind, how so much caution was taken over my ear cleaning and so little was paid to my actual disabilities and special needs. I was told "I'm not supposed to leave this with you but I will."
SAT AUG 3
I still hadn't resumed medications due to nurses unable to reach staff. I began to feel a great ache in my left chest, then became unable to move my left arm, and we called for the nurse. They still hadn't gotten my info. I began to have a seizure. A crash team was called in, and I heard Gina explain to the doctors on call about the deletion of my visit history. The doc in charge asked me when it was all over what they could do for me to make things better, and I told him to care for this disabled veteran like my life depended on it. Later one of my team's doctors came around to see me, but when I asked for some diagnostic to rule out any dangerous blood clots, due to a persistent chest pain an unusable arm, she told me no, she "didn't want to run any unnecessary tests."
SUN AUG 4
A volunteer woman got me into a wheelchair for the first time, and she wheeled me around the floor while a nurse brought in a shower chair. The sweet volunteer offered to wash my civilian clothes while the nurse helped me attempt to shower, but it was a short time of me rinsing myself down with the showerhead, as I had no postural control at that time and kept almost falling out of the chair. There was no way for me to clean underneath my fingernails, and since I still hadn't been able to wash my hands since the surgery, there was dirt and skin from scratching the nurse and probably fecal matter from wiping myself poorly the first few days after surgery.
MON AUG 5
Grade A nurses Colleen, Monica, Kendrick, and phlebotomists Steven and Kyle
WHO ORDERED THE JACKHAMMER
Kendrick came on shift about the same time of morning that construction began on the 7th floor, just below. Some type of jackhammer or drilling into the concrete. My whole head was reverberating painfully, and there was a type of odd terror running through my skin from head to wherever my sensation ended in my thighs, that caused a type of convulsion I had not yet experienced, and I begain to flail around. At first I was offered a sedative, or earphones, and between gasps asked if I could be moved to a different floor, but since I wasn't still assigned to the rehab folks, they had no agency regarding me other than recording my vitals and neuro checks. Kendrick asked open ended questions and we came to ameliorate some of the effects of the banging with blankets and whatever other means we had available to us. The construction went on for 3 days and fortunately got a little farther away each day. Even the nurses were frustrated that the drilling didn't happen over the long quiet weekend, and there were only 11 of us patients on the 8th floor.
LIFELINE
The rehab psychologist Dr. Nick Dasher stopped by and listened to my concerns for my care, since I was going to be here for another month or two working hard on getting better, I would not have my dad the whole time to get me what I needed from the store for nutrition and palliative aids for the special needs for my vagus symptoms. He promised to have a talk with the administration regarding consideration for my pre-existing conditions.
THE REAL CUSTOMER IS REVEALED
The doctors came by every morning to update me they were still waiting on insurance. They could not put me on anyone's schedule to get therapy until 1) insurance came through and 2) I had to be entered into the Rehab system. The young doctor in charge of the rehab unit came by a couple times, telling me each time that I was still a rehab candidate, hang in there.
MON /TUES AUG 5/6
ATTACKED IN THE DARK IN MY SLEEP
Uncertain of the date, but in the wee hours of the morning when the phlebotomists take their vials for the 7AM doctor meeting, a small man entered my room as I was sleeping and my dad also asleep in the cot beside me, and poked a needle in my arm without waking me, getting consent, or even asking me who I was, turned on zero lights, and didn't even speak to me.
I cried out, and my dad woke up, and asked what was going on. I asked the lab coated man if he was a professional, and he replied, "Huh?" I repeated my question. He said nothing and just left. Using the nurse button, I called the nurse in and complained about the situation. The following day or so, Steven, who regularly drew my blood, walked in and I told him what happened. He said something to the effect of that was the last time he could stand to hear this story, that this person is known for this. He asked if he could have my permission to file an official report, and I gave it. We put my name, patient number, date, and request for intervention in a plastic protective bag, sealed it, and he took it to his superiors.
The nurses make a plan to thwart this hospital worker from entering my room again, and the next two nights he returned but was in once instance escorted out by one of the traveling male nurses when I pushed the nurse call button, and the other night Monica diverted him before he could open the door. They called it a "training issue" but I never heard back about my complaint, no administrators stopped in to talk, and I really could have used some counseling.
HERE'S YOUR SIGN
Also in this time, from the first 24 hours on floor 8, I had gotten some whiffs of strong deodorant or detergent and notified the nurses of chemical sensitivity, which can cause me to have convulsions. They made notes and put a sign on my door. Every day there was someone with strong scent of some kind, never perfume, that brought on seizures until the input was taken away. One day it was during breakfast, when my dad had left to get my food, housekeeping came through with strong floor cleaner. To her credit, she worked quickly, but the deodorant hit me about the time she was done, and as she left she closed the door behind her. Some minutes later, one of the nurses who was walking by my door heard my faint plea as I lay in the bed seizing, and she helped me by opening the door and I asked also the shower be turned on for a few minutes to clease the air with steam. We had to do this a few times during the week when new staff came in my room without reading the sign Gina made immediately for me the first night.
ORDER UP
My concerns about nutrition I raised with my surgical team were never adressed. The menu for patients is mostly carbohydrates and cardboard, lots of fat, and had no alternatives for vegetarians. My dad bought me breakfast each morning and kept me in bone broth and other suggestions from my two naturopaths who I had paid to come to my room to help me at my urging.
RIOT ACT
One person claiming to be a therapist entered my room as I was coming down from one of the seizures, still trying to catch my breath and get into some level of homeostasis. She introduced herself (Barbara?) and began trying to interact with me, without referencing my great heaving and bodily distress, facial cues, or the toweling of my brow by my dad, who was helping me reconstitute myself. My inability to speak immediately led her to make further inquiries, to which I held my index finger up to indicate I understand, and to give me a moment, while whispering out that I had just been seizing and need to catch my breath. She told me she and her staff are very busy people and when they come by, I need to be ready to work, ready to give them my attention! I asked if she would allow me to breathe, and she informed me she did not have time, if I wasn't ready there were other people who are waiting, and there is no telling when she would be able to come back. Since post seizure time is crucial to stay calm, I told her she doesn't need to worry about coming back, in fact please don't.
NO FIRST AID TRAINING
As the swelling was finding its level, sometimes various body parts or systems would temporarily start or stop functioning, and one night neither of my arms were cooperating to get food in my mouth during the small window of time the gastroporesis was letting me eat. I called a nurse in, asked him to help me with the last few pieces. Although he seemed to try, he was admittedly bad at it and some ended up on the floor.
At one point I needed a sling for my arm to keep less weight pulling down, and went through 3 nurses all unable to fashion one from my safety strap. A fourth person came along and got it done immediately, I don't remember if it was a nurse or visitor.
PRN RX
there were a couple things the nurses were able to get for me, such as Tums, Tylenol, a couple others, that I had asked for and they had gotten permission for me to use/take. The requests turned into prescriptions that they were supposed to ensure I took, and having occasional upset stomach and taking what one needs at the time is what the nursing industry used to call PRN, "as needed." The nurses said now PRN means that it is added to the list of meds to be taken every time meds are given. They kept bringing me all of them but I refused to take things that I requested on their timeline. They stopped bringing those but it was hell to get it straight that I only needed antacids when my stomach was upset, not when it wasn't. They coudn't seem to grasp it.
WED AUG 7
IT'S ONLY A PANIC ATTACK
A therapist named Laura took me to the gym to exercise my legs. After her assessment she had a few moves for me to try, and she stopped when after a couple minutes I had reached exhaustion. She cautioned me to observe and respect my limits and be kind to myself, and said I was still a candidate for in-house rehab. There was nobody in the whole gym at the time and I knew there were only 11 people on the floor so nothing was triggering.
The next therapist was a nice man named Brandon but recent seizing, lack of ability to control my sympathetic and parasympathetic systems, and joint hypermobility had left me in a weakened state and I was not able to get dressed when he visited. He took me to the gym too, only this time it was in full swing, with maybe 20 people all dressed and working out. My panic disorder kicked into high gear. A lady on a treadmill saw him wheeling me through and when she saw my huge eyes and white knuckle grip on the arms of the wheelchair, she motioned her concern for me to him, but he waved her off (without checking into what she was trying to tell him) saying "She's fine, everyone is okay," but I was immobilized in the chair unable to breathe until we got to the back. I tried hard to stay focused and on track, but my already weak shoulders had been carrying ALL my weight since the surgery due to numb legs, and I couldn't perform what he wanted on the parallel bars. I tried to tell him I wasn't ready for the Olympics yet, and he wheeled me back to my room, leaving me with the assignment of 'standing knee lifts to chest' exercise. When I asked him how this is possibly appropriate for my level since I couldn't stand, let alone move my legs, he said "For when you're ready," and left.
LIKE A HANDGUN IN THE GYM
When the surgical team came to update me on insurance status, I mentioned my panic disorder is on greater edge being even more disabled than I'm accustomed to. Various environmental, physical, and mental stimuli combined poorly with not feeling heard or understood. Some staff had taken the time to hear about being crippled during the war, then losing a child and a husband, home and health to that cursed event so many years ago. They were the only ones who understood the intestinal fortitude it took for me to be there. I explained that there are mental reasons I need assistance and preparation before going into ANY CROWDS or noisy reflective places, or bad things happen, to me and/or others around me during violent panic times. The doctor responded with, "Everyone goes to the gym." In fact, when she realized I was describing my first gym experience, she said that she had me moved to this floor with the purpose of going to the gym regularly. When she understood they hadn't been working with me at all, she left immediately.
I spoke again with Nick the rehab psychologist and explained that none of my warnings in the pre-op discussion have been heeded, and now bringing me in a crowded room in a hospital gown and in pain was like bringing a loaded gun into public, since none of us knew if or when it could go off. He said the administration had agreed to hear me out and there was going to be a conference.
THURS AUG 8 9AM
CANCELLED
One of the student surgeons who had been with the group but never interacted with me showed up by herself. She never did introduce herself so I don't know her name, but she obviously drew the short straw and came to me to say I had been taken off the candidate list for rehab and was instead going to be recommended to a skilled nursing facility. I asked why, and she told me I had my insurance to blame, that they are taking so long that all my forward progress has been lost and now I am welcome to stay until the VA can admit me to their nursing facility. She didn't know answers to my other questions and ended the short conversation saying, "Sorry, I don't know. Have a good one!" turned on her heel, and got out.
After collecting myself, I notified the staff I would be leaving on Saturday, and requested discharge instructions and medications be prepared. I began to carry out my own PT schedule and appropriate exercises that I made up as I went along.
FRI AUG 9
More inquiries into discharge preparations went unanswered. A nurse told me he would page the charge nurse and get back to me. After a couple hours I had my dad load me in a wheelchair and had him wheel me to the desk nurse and asked the same questions, saying I'm leaving in fewer than 12 hours and I have no more answers. Perhaps because they hadn't actually checked me in and didn't want to tell me.
RECORDS STILL DELETED
When I brought up my concern over the loss of in-hospital records, staff assured me the permanent record would have it all, and the nurses were just unable to retrieve anything prior to my arrival on the 8th floor. Even so, the pharmacy who was tasked with preparing my meds was unable to see what they needed to issue my meds. Nurses said the records are transferred to MY doctor and that she would be able to see the whole thing. As of Septempber 28th my doctor still was not able to -- she can see that I checked in, and that I checked out, but not what happened in between.
SAT AUG 10 9AM
The nurses had informed me I would be taking steroids for a couple months after discharge, but this morning they said I didn't need them anymore. The one medication they said I absolutely DID need was not covered by insurance. Luckily my dad was able to pay over $50 for a couple weeks' worth of the anticonvulsant, while at my own pharmacy $35 covered 3 months' worth. It took until noon to get my medication, and with some words of care and advice from Monica on keeping up my good work, I left.
5 HAND IVs, 16 BLOOD DRAWS, 24 HEPARIN SHOTS
During the time on floor 8, the needle they insisted keeping in my hand for "emergency seizure purposes" kept coming out or getting sealed over, and each time they tried to put it back, staff would blow the vein 2 or 3 times and have to move it to somewhere else. I told them it was due to being dehydrated, and began to hydrate an hour before they came in to alleviate all the clots and bruising. Some of the nurses used insulin needles to administer the heparin, so I began asking the others to think about doing the same since I had MANY bruises on my abdomen and arms.
No matter how many seizures I had, sometimes multiple a day, there was no usage made of my needle they insisted on keeping one in my hand. When one night it had come out yet AGAIN the nurse just decided to leave it out, since I was about to get added to the Rehab floor for real any day and would not be able to participate with it in (even though they had tried a couple times with it in place). She didn't seem to agree it was necessary. I must have had 20 seizures during my stay but no meds were ever administered through the hand IV.
NEXT CUSTOMER
No fewer than 7 different calls had gone between myself and the radiology dept regarding the follow-up MRI. The hold messages referred to not patients, but customers, as in "Thanks for holdinging, we are assisting other customers." The person calling the 8th time on Oct 11 to reschedule confirmed not a single one of those calls left notes, even though the last few swore to me they would.They questioned the system and apologized every time, but seemed so confused. Each person I spoke with seemed harried, tired, and on a palpable level, some fear. They seemed concerned that they would do something wrong, that if we were having this talk they had already done something wrong, or that I wasn't getting what I wamted and their customer service reputation was on the line.
When I asked a morning shift nurse how to get the check out process started, she wanted me to be more specific, and when we couldn't get to a common understanding of what I meant she at least tried to move the conversation forward telling me a nurse would help me with all that when it was time. My response was it's time now, I'm ready and you are not. She asked me if I wanted the social worker, and I asked if that was the procedure -- but each question of mine was countered with not an answer, not even a response, but another question. The point of the conversation seemed to be to keep me calm or address my feelings. It wasn't feelings I was concerned about, but plain old information, and none of the nurses knew what to say about how to check out. They could have told me they needed some time to figure out how, since again they didn't have me checked in, but to their credit, even with the point-blank verbal bludgeoning, they didn't once say, "I don't know," no matter what odd things they came up with to hide it.
AT THE END OF THE DAY
The things I have written here make me wonder why they operated on me at all; being just six weeks away from a total eclipse of my heart. Previous conditions made me a horrible risk for this surgery. Add to it, as they told me more than once, they had to kinda take the organ out a little from the skull, which can cause more complicatioons... in the doctor's words, "You've had *some* surgery." It is fortunate for me and my family that they didn't just put the mess back in and apologize to my dad for not having found it sooner. For my part, I feel fortunate that some happy accidents saved me for the time being. My point in documenting and sharing is supposed to help the PRE and POST the surgical team performing its miracles. To do so takes nothing away from Dr. Ruzevick and others in their fiat, something that could have easily turned out differently, worse, in so many ways.
It is the before care and effectiveness of aftercare that led to great suffering, not the operation. And not all aftercare was bad; I told the nurses who gave top-notch care every day how much I appreciated them. My mother and her grandmothers were nurses and healers, and are who left me with their own standards of what constitutes care, but they are no longer here. They would have raised hell more than once, and I want to say they could have protected me and cared for my ailments the way they should be, the way they were taught, but even my dad being at my side 23 hours a day could not prevent things or reason with authorities, or FIND authorities (people with agency)-- the nurses over my time there confided they didn't feel they had agency to perform nursing duties, their hands were tied all manner of ways -- and that they were sad and aware that many surgical patients tough out the surgery but don't survive the aftercare and die within weeks. They see the industry has changed, is hurting patients and tying hands of medical staff, and lining the pockets of pharma, while catering to their REAL client, the insurance companies. They have the power to withhold, the power to approve. How they make those decisions has been under much scrutiny, and found lacking in fair practice while REAL LIVES are affected, altered, ruined. Until we can halt special interest monies, there has to be something one can do to get CARE and avoid TORTURE without labels or political implications, because if not -- and this is what we put up with -- ask yourself how and when a person CAN expect to be treated properly, without so much needless harm? What kind of system is rewarding this model? What kind of responsible government allows even one more person to suffer these daily atrocities? I suppose only until it happens to someone they love. Someone important. Someone else.
