I often forget that I live in hostile territory. The world has changed since I was a child growing up in Baltimore; changed drastically. I was a child of the 60s when peace and love was part of American culture … Continue reading
Ever feel like you’re simply living in the wrong state to access the treatment you need for your condition? You may be right. There are lots of factors that enter into the equation which determine access to appropriate care; insurance … Continue reading
I haven’t written much here lately about how things have been going as far as getting to Vanderbilt Autonomic Clinic, because I was under the impression that it was just a matter of time and having my current GP fill … Continue reading
If your doctor is offended by this and unwilling to discuss these new approaches with you, chances are you have the wrong doctor.
It should never be OK with a doctor to allow you to suffer any more than absolutely necessary and if there are still options left not to use them.
Any doctor that takes patient reports out of the equation might as well just turn in his medical license right now because he’s no longer acting in the patient’s best interest, he is treating his patient as an inanimate object.
Often medical blacklisting is done in more insideous ways and rarely in the literal sense of the word do you find it as a physical list. Blacklisting deniers commonly use this as a reason to doubt that such things … Continue reading
For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.
Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.
Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.
Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!
Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.
Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.
These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.
A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.
The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.
And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.
It’s not personal. It’s not about you. It’s about their best health, and their life.
Medicaid’s website disaster put many things behind schedule and just as I had feared one of them was my trip to Vanderbilt. Although my current GP did fill out the necessary paperwork this time it was Medicaid that dropped the … Continue reading
The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.
Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.
What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.
Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path. Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.
One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late
A local news team has covered the story. See this footage below;
At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.
Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading
The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological … Continue reading