A Starting Point
Throughout these pages you might get the impression that I am not terribly impressed with the current level of health care provisions or providers. Well...you're right, BUT I do have faith that this will change. I will do my best to help you advocate for better care, should you ever need it, by sharing our experience and the tools that I learned. The best advise that I can pass along is...stay healthy and avoid hospitals. Your life may depend on it! If you find yourself in a hospital, stay calm, think straight, use your best judgment, and get out of there as quickly as possible.
As time goes by, I will include much more information, so stay tuned!
The Medical Profession
The Word of God
I'm astounded at the remedies some medical professionals dish out when they're not certain of what they know, and more importantly, what they don't know. I've found some horrifying statistics about the high rate of deaths actually caused by he medical profession. Some problems are caused by surgeons, anesthesiologists, or pharmaceutical companies, but big mistakes can also be caused by very small errors in transcription, laziness, or miscommunication. Even knowing this, we tend to blindly believe whatever a doctor tells us. Clad in their professional white coat, we assume doctors have done their homework and they know the truth.
When was the last time you saw a doctor shrug and say, "I haven't got a clue, what do you think we should do?" I'm proud to say I have actually experienced this, and it was a relief to know that there are honest to god humans in the medical "community."
"The New England Journal of Medicine reports that 9 out of 10 doctors agree that 1 out of 10 doctors is an idiot."
Please, please, please, be smart when dealing with doctors. Ask lots of stupid questions and write down or record their answers. If there are words being used that you've never heard before, don't nod and pretend you know what they're talking about. Ask them to explain what they're saying in layman's terms. Many doctors are very good at drawing pictures, some can even point to the spot in question on your very own x-rays! It's up to you to advocate for yourself. In order to make good decisions, you must be informed so please do your research. Trust your doctor, but realize that they are human and they make mistakes.
"Medicine is a science of uncertainty and an art of probability."
The Good Book
The smartest thing we did during our three and a half years caring for Marley was to make a medical notebook. Being organized saved us from feeling completely lost and overwhelmed. We would list questions we had, and the answers we received during the next visit. We compiled our notes, copies of the doctor's reports, and contact information in this book. Everything was in one place. The first page of our book was an overview of medical treatment. It was simple. All we did was list the date, doctor's name, and procedure done. We would include Marley's weight, any new drug prescribed, or any other pertinent fact (as long as it fit on one line.)
This overview was more valuable than gold. The doctors copied this concise summary repeatedly, because it was the only comprehensive file that existed. Simply jotting down who, what, where, when on one piece of paper is one thing that could save your life, save incredible amounts of money, and save precious time. Getting copies of the doctor's reports was invaluable. It usually took two days and a few phone calls, but they would e-mail, fax, or send their report. Then we could look up words they used to better understand what was going on. And every time we saw a new specialist, we could simply copy the reports we had from the physicians, pathologists, and radiologists without having to make multiple phone calls or signing multiple release forms.
The second smartest thing we did was to get duplicates of every film taken. It seemed like paranoid over kill at first, but I cannot tell you how many times Marley's x-rays were mysteriously misplaced. And remember doctors are now digitized and computers do crash...be forewarned!
The insurance company even paid for duplicates, because we proved it was cheaper and quicker if they developed two sets of originals at once. If we wanted a second opinion we could send the images without having to locate and obtain the hospital's original. Mind you, copies are never as good as the original, but if the original was lost, getting a copy is much better than having to redo the test or losing the information completely.
I can't tell you how many times we were the ones to pull our scans out from under the bed to provide a doctor with film so they could have an old picture to compare a new one. This is especially important if you use different doctors in different locations. Remember: If you're storing your own scans and x-rays, protect the images from getting scratched and store them flat, in a cool dry place, to keep them from getting moldy or warped.
The Best Tool for the Job
As in any profession, having good tools is critically important for success. Let it be known that hospitals compete for new and improved equipment. These machines are incredibly expense so it really depends on the care facility's location and their funding. If you live in a small town, generally the tools and methods used by your doctor may be substandard. Unfortunately folks, this is a fact of life and may affect the accuracy of their diagnosis.
Our medical wizards have come up with some great techniques to see the inner working of our bodies. I'm going to describe a few of them because, at one time or another you may be faced with needing this info and I'd like to arm you with the simplified version that I wish I had had.
The most common imagining method is the good, ol' fashioned x-ray machine. It's the original technique and was accidentally invented in 1895 by Wilhelm Conrad Röntgen. He called his discovery, "x radiation" (the "x" stands for "unknown"). It's still used more than any other technique because it's simple, quick, inexpensive, and relatively accurate, depending on what you're looking for and how much information is needed.
It works because the x-ray tube aims a stream of fast electrons at the body part in question which is positioned between the tube and a metal plate. When the electrons come to a sudden stop on the metal cassette, it produces a reverse, two-dimensional, black and white image on the film. Pretty cool accidental invention, huh?
CAT Scan (or CT Scan)
A CAT scan (computed axial tomography) or CT (computed tomogram) imaging technique is painless, and uses the same basic principle as the x-ray except the CT scan produces a three-dimensional image on a computer. With these machines, a radiologist can not only identify a problem or in Marley's case, a tumor, they can measure the size of it as well as its depth within the body.
These large machines have a relatively thin donut shaped "camera" that encircles a narrow, padded bed. The bed moves through at a consistent rate while the CT scan continuously spirals around the body in a corkscrew fashion. Because there are no gaps in the pictures, the computer creates very accurate 3-D images the radiologist can read, print on film, and send to doctors.
A positron emission tomography views the organs (soft tissue) rather than the skeletal structure with a gamma camera . This imaging technique is used primarily for detecting problems in the brain and the thyroid. This "radiographic" process beams external x-rays through the body to specially sensitized film.
So the scanner can properly pick up images, prior to getting a PET scan (or PT scan), it's common practice to be injected with radioisotopes (or a radionuclide) combined with glucose (a simple sugar). This process is also known as nuclear scanning. The simplified explanation is: cancer cells will react with certain chemicals at a higher rate than others and these nasty cells love sugar so, if you give a tumor radioactive glucose, the consumption process creates excessive gamma rays. It's the high activity in the organs that the scanner detects.
The bone scan imaging technique is available only in the biggest of medical centers and was the most expensive method we experienced. While we were in Boston, this was done to see if there were cancer cells hiding in Marley's bones. Several hours before the scan was done, he was injected with a radioisotopic tracer, which was kept stable in a refrigerated titanium tube. Watching the nurse carefully retrieve the small glass vile of this special serum from the large, protective high tech tube, packed in dry ice was like living in the pages of a Superman comic. Marley asked her, "Will this stuff make me glow?" She replied, "Kind of...You'll see for yourself in a few hours."
After the tracer had time to accumulate in Marley's skeletal structure, he was laid on a comfortable bed. A large, suspended mechanical arm, supported the x-ray tube which slowly, scanned Marley's whole body. He had to stay very still, but that was difficult because the computer screen was visible to us. We could view the detailed, two-dimensional image come to life before our eyes. We could actually see Marley's skeleton in action when he moved his fingers and toes, which was all we could get away with before being scolded to keep him still. It was like his whole skeleton was glowing.
Unlike a standard x-ray, this image was not being transfer to film, it was digital. The full body image was live, not still pictures taken in small portions. The isotopes would have glowed brighter in spots, had there been any cancerous activity in his bones, at the time.
Although there were no visible tumors in his bones, we did see several broken ribs from years before that had already mended on their own. Marley's dad and I felt guilty that we never knew he had lived through the pain of broken ribs. The doctors looked at us like we had beaten Marley and hadn't reported the injuries. Marley shrugged and said it must have happened when he rolled the three-wheeler down the hill. "Everythin hert! How was I supposed to know somethin' was broke?"
The magnetic resonance imaging technique varies from the other x-ray methods because it lets the doctors view soft tissue as well as bone. This machine is even bigger than the CT scanner and far less comfortable. This was the technique most used on Marley.
A hard, narrow bed passes through a four-foot tunnel allowing no wiggle room—a nightmare procedure if you get claustrophobic, but a breeze if you like spelunking in dark caves. Marley said it wasn't so bad when the lower half of his body was being imaged because his head stuck out the end of the tunnel. Imaging his upper half was a different story. He also reported the newer ones aren't as noisy as the older models which "sounded like someone bangin on a metal gabage can stuck on my head." Marley's remedy was to bring headphones and play loud rock'n'roll. Some people arm themselves with ear plugs and sedatives!
As uncomfortable as an MRI can be, the results are pretty phenomenal and worth surviving the "tortcha chamba," as Marley called it. This system works using the body's own chemistry. The hydrogen within our bodies is an element with magnetic qualities. The electromagnetic field, generated by the scanner activates the protons of our hydrogen atoms so they create faint radio signals. The computer receives these transmissions and converts them into very detailed images. The use of magnetics rather than the various x-ray methods decrease the risks of over-exposure to ionizing radiation. But there are pros and cons to everything and sometimes the MRI machine can't be used. It uses powerful electromagnetics which surrounds the patient with a potent magnetic field thus some medical implants, metal prostheses, and contraceptive IUDs are at risk of malfunctioning or actually moving inside. It would be a real drag to have all the bolts in your fake knee or your pace maker pop out, wouldn't it!
Tracing the Problem
Tracers can be used with any of these machines to enhance their effectiveness. They're theoretically safe and are eliminated by the body's normal functioning. I did however find that one-in-forty-thousand have adverse allergic responses to standard ionic contrast solutions. After having a contrast solution administered it's normal to feel a warm sensation but if itching, difficulty breathing, or a drastic drop in blood pressure occur, this would signal an anaphylactic reaction. If you have a history of severe allergies, diabetes, or kidney or heart impairment, a non-ionic contrast can be requested. It's safer but incredibly expensive and insurance companies are unlikely to cover it as just a security measure.