My Medical Experience
It is a hard and fast fact: In any graduating class of medical doctors, someone was at the bottom of their class.
As a Microbiology Laboratory Technologist, I am used to processing medical specimens and assisting Doctors by providing them with information pertinent to their patient’s health and recovery. Last summer I had the displeasure of falling into the greaseless grinding gears of our medical system and observing it from the inside out.
After a short illness I awoke one morning to find my legs would not move. An ambulance was called. Recent news reports of overcrowded emergency rooms and redirected ambulances had already prepared me for the news that I would be sent, not to the hospital in which I am employed, but to a facility in a neighbouring town. (Strike One) This Hospital provided first rate diagnosis and care however was not capable of doing the delicate surgery that I would require. Transferred to a major Toronto hospital I was reassessed while antibiotic therapy was initiated. My wife was assured that she would be advised when I would be scheduled for surgery so that she could be close by. In fact the call came very late at night to tell her that I was already in the OR with the procedure well underway. (Strike Two)
The truth is that I was so ill that my last hazy conscious recollection was a feeble attempt to sign my name to the consent form for surgery. The next weeks were spent unconscious or drifting in and out of an excruciatingly agonizing morphine haze. I slowly began to return to the land of the living and started to become aware of my surroundings. Stitched up and full of drainage tubes, the pain was excruciating when being turned to be cleaned up and have my dressings changed. While turned I could peer over the edge of my bed to see ‘dust bunnies’, syringe caps and old cotton balls hiding below my bed (Strike Three), but let’s go to extra innings)
Lying on my back in bed I began to wonder why my room always looked so drab. I soon realized that my window was so filthy that the sun could barely penetrate even on a bright summer’s day. A brown haze bore evidence that the panes of glass had probably not been cleaned since their installation years before. Perhaps not a medical issue but the warmth of a sunny day would have provided the friendliness not found within.
Physiotherapy was crucial to my recovery, however I feel that the limited amount offered was initiated far too soon and was far to aggressive for my state of recovery. My wife can attest to my screams of agony when being manipulated. Thereafter physiotherapy was virtually non-existent until I was hoisted into a wheelchair for the very first time. My nurse attendant wheeled me down a hallway where on hearing that there was an office party offering cake, quickly abandoned me sitting askew in the middle of the hallway. He returned about a half hour later and without an apology, pushed me back to my dingy room. (Strike Four)
My wife tells me that she had to search for nurses to re-attach disconnected I.V.s and clean up spills in my room. (Strike Five)
Having been fed through a tube during the initial ordeal, my appetite had not yet returned and there was little chance of it with the luke-warm brown sludge I was offered. Red jello each and every evening! I swore that when I was discharged, I would send dietary a recipe for green jello!.
No longer needing the specialized services offered at this major hospital, it was policy to be transferred back to my originating hospital while waiting for other options to become available. Back at the smaller community hospital was paradise in comparison my previous incarceration. On my second day on the ward I was drawn to a noise clanging outside my window. There to my delight a scaffold descended and a worker with a squeegee made my window sparkle with a few strokes. The warmth of the rising sun was as delightful as warm moist face cloths that were offered each morning to freshen up prior to breakfast. Volunteers made rounds with newspapers and other small amenities. What a world of difference! I would not be disappointed during my six week stay with this facility. Sparkling clean, friendly and service with dignity.
I was never certain if it was miscommunication, overcrowding or incompetence that had my admission postponed six times by the rehabilitation institution that I was ultimately destined for. Having been in hospital for several months, I was eager to complete my therapy and return to my home. These postponements were to stress me mentally and physically. By all accounts, The Spinal Rehabilitation Hospital was a world class facility garnering exemplary reviews. I was delighted to finally be accepted for admission but only after my wife‘s numerous calls to the facility‘s ombudsman..
Almost immediately I began to experience negativity in the attitude of certain staff members. I had no idea that one’s joints could seize up in just a few days, let alone a months time. Lack of beds and numerous transfer cancellations contributed to my condition. During my recuperation, my physiotherapy, aside from my wheelchair abandonment, amounted to daily stretches by physiotherapy students. My physiatrist (1), a delightful ray of sunshine, informed me on my initial assessment that my legs had developed such severe contractures (2) that surgery may be the only option to try to get my legs to bend. Attempts to put me into a wheelchair or on a commode failed as when seated my legs remained horizontal, sticking straight out. What better way for your new doctor to greet you but to inform you that additional surgery may be required to correct the damage done by inactivity while waiting to get admitted to their facility! She aggravated my anxiety by starting with the worst case scenario and glossing over the less drastic options. The doctor determined that I would need a custom built commode (3) which would take time to construct. Until it could be built I would remain bed bound 24 hours a day doing “my business” (use your imagination) there as well as receiving what limited physiotherapy could be performed in bed.
Days turned into weeks and still no commode but my legs had loosened up enough to get into a loaner wheelchair and receive physiotherapy in the gymnasium. It might have been humorous under other circumstances as my therapy had restored my flexibility and I no longer needed a custom commode. Regardless, now after about 5 weeks, I was the proud owner of a huge $6000 stainless steel monstrosity with movable leg supports no longer needed. (Strike Six) This expenditure is not covered by the government nor my private insurance. $6000 of my money is “going down the toilet” so to speak.
As I could not transfer myself to a bed or a chair, a mechanical hoist was necessary as with other patients early in my condition. I am a big guy, however somehow miscommunication informed the Rehab that I weighed 600, 700 or 800 pounds. Like a fisherman bragging about a catch, the story grew with each telling. In fact I weighed a fraction of even the smallest figure. Because this “weighed heavily” on the minds of my facility, they decided they had to get a heavy duty mobile hoist to move me. The monstrosity obtained could be used to remove engines from cars!! From my admission I was able to be transferred with the regular ceiling hoists. The heavy duty monstrosity was relegated to a corner of my room and remained there until just before my discharge. One day I inadvertently received some mail which was from the outside supplier of the hoist. Inside I found a bill for the rental of the unused hoist which totaled $375 per month. Asking why this unnecessary hoist was being kept I was told “it was in case of emergencies - if the ceiling hoist failed etc.” I was told not to worry about the cost indicated on this misdirected invoice as the hospital was paying for it. I informed my nurse that I indeed WAS paying for it through my taxes, as was every other Ontario citizen. Beyond that issue, I pointed out to my nurse that this mobile hoist’s base was too high to roll under my bed in order to do it’s job and that other mobile units which were owned by the hospital and could do the job were parked just outside my room. The hoist remained until it was sent to my home just prior to discharge. Now I pay the $375 monthly and have to submit it to my private health insurer to see what they may cover.
Having finished physiotherapy for the day, I had ventured outside to try to lose myself in a book. Hearing my name paged over the PA system, I returned to my ward to find the hospital pharmacist waiting for me. As I have a history of hypertension (4) I take medication to control that condition. Since hospitalization I was often hypotensive (5) exhibiting pressures in the area of 98/56. The pharmacist asked me why I was just prescribed an additional antihypertensive medication of the same class as the first I was taking. I had to admit that I had no idea as my medication and dosage was administered to me by staff without consultation. And shouldn’t the pharmacist be asking the doctor why the drug was prescribed rather than the patient? As my blood pressure was normal, if not on the low side, the pharmacist canceled the additional medication. My doctor was on vacation!
No explanation or apology was offered on her return. (Strike Seven) Such events could certainly make my blood pressure rise.
I was still bloated from the trauma, the surgery, the medication and the lack of movement. Oedema (6) had developed in my legs and they appeared swollen. A nurse told me that I would need compression stockings to reduce the swelling but when the stock supply would not fit properly I was told that custom stockings would have to be made. That is where it sat for months. In the meantime, I was placed on diuretics (7) to help reduce cellular fluids and told to restrict my fluid intake to 2000 ml a day. That is the amount in a large plastic pop bottle. However, at that time I was receiving 1000 ml of fluid intravenously so I was restricted to 1 litre orally. My thirst was indescribable! Almost simultaneously I was told to “push the fluids” by another nurse. To prevent UTIs it is necessary to drink plenty of fluids to flush the system. So what do I do? Restrict fluids while drinking fluids! It is analogous to driving your car as fast as you can while stomping on the breaks with all your might! I pointed out this ambiguity at every opportunity. No explanation was offered When I asked my doctor directly about this conundrum during a family meeting the subject was quickly changed as my wife and I looked at each other and shook our heads. I was continued to be told to “suck and blow” at the same time.
I was finally measured for custom compression stockings which took about a month to be delivered. I began to wear them a week before discharge and the swelling quickly abated. (Strike Eight)
I had developed a urinary tract infection (UTI) while at the Rehab. A urine sample was taken at the end of August and it wasn’t until a week later that the results were received. As a microbiologist, this seems an unreasonably long period of time to obtain a result. What was even more bizarre was that antimicrobial therapy was not started until two weeks later. It was later explained to me that as I had an indwelling foley catheter, it wouldn’t be feasible to start therapy until the catheter was changed. This boggles my mind as bacteria present in the bladder (cystitis) could progress further up and infect the kidneys (nephritis) in that time. Also, bacteria in the bladder would reseed the new catheter further hindering eradication of the bacterium. I feel that by the time therapy was finally initiated, my infection had cleared spontaneously. (Strike Nine)
As the eradication of the bacteria causing my infection required six weeks of intravenous antibiotics a regular indwelling IV needle posed several problems the most serious of which was infection. For that reason a port-o-cath (8) was surgically implanted. After my course of medication was completed, the port-o-cath remained until it could be surgically removed. As there was a risk of a blood clot forming within it, a syringe with heparin and saline was injected into it every 4 to 6 weeks. One morning I awaited a nurse from an outside agency to arrive and flush my unit. I was leery right away as she hemmed and hawed while reading through some papers bedside. Finally she prepared to get down to business and filled the syringe with the heparin solution. I watched the nurse fill the syringe then attached it to a line leading to a needle. I could not believe that she prepared to inject the fluid!!! Wait!!! She did not flush the line with the solution. Not being a nurse, I was still quite aware that having the fluid in the syringe push the air bubble in the line into my port-o-cath would most likely give me a fatal air embolism. Whoa!!! I finally got the attention of the facility’s nurse who agreed with me that the line should be flushed. As it turned out, she also flushed me with an insufficient volume of heparin so the entire unpleasant procedure had to be repeated properly several days later. (Strike 10) To the credit of my facility, they did call a complaint to the nurse’s agency and lodged a complaint. It was revealed that this was the first time the nurse was attempting this procedure and she was reading “how to” instructions as she went along.
Negativity permeated the facility to the point that when I noticed a flicker of movement in my legs, I chose not to reveal this newly acquired motion to the doctors in fear of being patted on the head and told “that’s nice”. As I was to be discharged in a week I left with my secret intact.
At the end of October I had completed my stay and was also obligated to complete payment on my portion of the $18K wheelchair in order to be discharged. Held hostage by my medical necessities.
In May, during my initial recuperation I had sneezed and developed an inner ear problem. Muffled hearing and squishy watery sounds led me to request that my ear be examined. After a quick examination I was assured that there was no problem. My ear told me differently and I requested an examination again one week later. Another doctor examined me with an otoscope (9) and again informed me all was well. Well, after three doctors and four examinations my ear was declared perfect yet external sounds were muffled, palpitations resulted in a squishy sound internally and a high pitched squeal from within remained. Periodically dark material oozed out. The medical profession had proclaimed “the operation was a success but the patient died”. After a half year of this I decided to take control of my situation and lets just say that I came up with my own “solution” which cleared the problem up in a week. Only the tinitis remains, probably some permanent damage from the lengthy condition. I would need a referral to see a specialist but after all the doctors agree, there is nothing wrong. (Strike 11)
For whatever reason, I was automatically scheduled for a check-up with “Dr. Ray of Sunshine” two months after my discharge. I was reluctant to head back to the rehab because of the negativity of this individual not to mention the $165 wheelchair taxi ride there and back. As luck would have it, inclement weather forced me to cancel the appointment. Contacting the doctor’s office on another matter, we were chastised for missing the appointment as it was very necessary and highly recommended. I asked if I should reschedule but was informed that it now was’nt necessary and that the doctor didn’t need to see me. What had changed?
Try to place yourself in my situation. This was a life altering situation and both my wife and myself were in a state of overwhelming shock. In this state one has yet to come to terms with the illness yet have the ability to comprehend and direct their own treatment and recovery.. You trust your health care providers to make appropriate decisions and steer you in the right direction. Naively, I had this unwavering faith. Regardless, this decision making and control was not relinquished or shared with me when I could comprehend my situation. Treatments were initiated without explanation and information concerning personal care was expected to be absorbed by diffusion. I would overhear conversations between my caregivers and get the gist of what was happening to me. At no time was I taken aside and told that “this is the situation” and “these are the options”, “what do you think?”
My wife arrived one day and told me that there was a wheelchair in the hallway with my name tag indicating it was my loaner. When finally introduced to it I saw that it was an electric model. These professionals know their business so no questions arose. Only afterwards fellow patients would ask why I didn’t have a manual wheelchair. After all my upper body strength was not affected by my injury. The “wheels” were in motion and I never did find out, after all an $18,000 model was already being built for me.
During this ordeal I required an indwelling urinary catheter to remove waste while incapacitated. The reality was that my injury was at such a level that I lost control of urinary and bowel sphincter muscles. (Mental insult in addition to physical injury!) One day a nurse arrived with the cheerful news that I would be going to I.C.s by the end of the week. I.C.s, I asked? Well, I found out that I.C.s referred to ‘Intermittent Catheterization’. You get this disposable plastic tube and basically shove it up your “willy” every six hours or so to relieve yourself. “Say What!!!?” No offense to the thousands of people who do perform this procedure x-number of times a day for the remainder of their life, but I just don’t find it appealing. Regardless, I couldn’t understand how I would accomplish this feat as my injury would set off severe spasms in my groin area even with the slightest touch. It would be like trying to thread a needle while experiencing severe hiccups. Not having seen any medical statistics, I would think that the chance of introducing bacteria and acquiring a self induced UTI would be greater with constant insertion of a foreign object . In a rush one morning, I was supplied with an external urinary catheter for the day. With a leg bag this system worked well for me. After some persuasion I opted for this route however the choices were never offered nor discussed with me. Not an appealing option but one preferable to the intermittent I.C.s . Most of all I will miss standing and being able to write my name on freshly fallen snow in yellow text.
Health care professionals seemed to be wearing ‘blinders’ and practicing their discipline “by the book”. Patients are individuals and injuries at a certain spinal cord level may have commonalities but still express themselves differently person to person. This does not seem to be taken into consideration but patients are channeled down predetermined routes towards their discharge. Intentions are good but individual needs are not properly addressed. Communication on all levels was sadly lacking.
I was discharged with a few weeks supply of necessary drugs requiring me to find a wheelchair accessible doctor’s office on short notice. My electric wheelchair is rather wide and so my wife took on the task of running around to the few doctors still accepting new patients to their practice and measuring the doors. In spite of the receptionists gleefully assurance that their office was wheelchair accessible, doors were often too narrow, sharp 90 degree turns occurred just inside the door making access difficult if not impossible, waiting rooms were a maze of chairs which required removal to allow me to gain access to the doctor’s examination room. After gaining access to the waiting room I was required to travel down a very narrow hallway only to discover that there was insufficient room to turn into the examination room. There I sat discussing my medical history with the doctor, wedged in the hallway within ear shot of everyone whose path I blocked with my chair. Afterwards I had to back up down this same narrow hallway to escape.
On three visits, my doctor failed to check my blood pressure, perhaps because he couldn’t with the blood pressure unit in his office and me in the hallway outside. This “pill dispenser” wrote out the scripts for my medication and sent me on my way. On filling my prescription, my pharmacy was confused. Not unexpected, his penmanship could not be deciphered, dosages were arbitrarily changed without reason as was the frequency of taking some medication. An increased dosage of a laxative was prescribed for every night of the week. If I would not have questioned this, I would have spent the next few months on the toilet shitting myself to death. One hell of a way to commit suicide! (Strike 12 & Game)
All along my own “medical journey” I ran into people with a variety of ailments and an equal variety of horror stories of our medical system. That is a rather sad commentary…
Not to be totally negative, I did encounter genuine dedicated, caring, professionals who made the best of the resources they had at hand. They too were often frustrated and stymied by our medical system.
My advice: Question everything, believe nothing, use your own common sense, and most of all, remember that Doctors are human and not God..
(2) Contractures - joints seizing up and muscles contracting not allowing a normal range of motion. Muscle atrophy and contractures can begin to occur in a period as short as a few days of non-use.
(3) Commode - think of it as a toilet seat wheelchair which is wheeled over a conventional toilet in order to "do one's business" if the level of injury has created incontenance.
(4) & (5) Hypertension is high blood pressure while Hypotension is low blood pressure.
(6) Oedema - Swelling of body/limbs due to the infiltration of water.
(7) Diuretic - a drug class which causes the body to expel excess water. Coffee acts as a diuretic.
(8) Port-o-cath - a device implanted beneath the skin in order to facilitate the insertion of an IV over a prolonged period of time.
(9) Otoscope - the device a doctor uses to look into the ear canal.