Post Hospitalization Recovery
This post and the next one in this series, is co-authored with Kerri Affronti. Let’s begin where we left off with K. For those of you just starting now, here are links to Part 1, Part 2, and Part 3 of the saga.
K left the hospital on December 17, 2014, after being given four shots of Humira. She had refused to be sent to a nursing home, which was largely for senior citizens and would not have provided follow-up care or physical therapy. Instead, she went home. After some half dozen visits from a physical therapist, K developed her own recovery plan for regaining her strength and fitness.
From mid-December 2014 through April 2015, she spent her days re-learning how to walk, swimming and exercising using a routine she created. Her own knowledge of physiology and her fitness level when she had been healthy allowed her to tailor a plan uniquely suited to strengthen her body, but not to overtax her weakened heart.
While she improved significantly faster than her doctors expected, it still took almost four months before K recovered enough to return to work.
Finally a Primary Care Physician
K found a group of gastroenterologists in Santa Monica and chose one of the group as her physician. Her medical files were much too extensive for the doctor to review in detail, so he took notes as K described her experience, medical treatment and prescription drugs she had taken over the prior four years.
Side Effects--Physical and Otherwise
In September 2015, a short 5 months after she had returned to work and once again built up a base of private paying clients, one of them noticed a small mole on her back that seemed to be getting larger. Despite her reluctance to see yet another specialist, K made the appointment with a dermatologist. On Oct. 7, 2015, she had surgery for what was diagnosed as a Stage 1 Melanoma. It was a two-hour surgery, but K went home that day. She went right back to work and, with rare exceptions, didn’t mention the diagnosis to even her closest friends.
In January 2016, K learned from her gastroenterologist that one potential side effect of Humira is that it may cause melanoma. That’s right, the medicine she was taking to control her life-threatening illness could cause a life-threatening illness. Both her Primary Care Physician and her Gastroenterologist advised K to get a second opinion on whether she should continue taking Humira in light of her melanoma diagnosis.
As a consequence of being in a business where she worked with physicians, K was able to secure an appointment quickly with both a renowned oncologist and a rheumatologist in January 2016. Without those relationships, she would likely have waited six or more months to see such specialists.
Seeing the Specialist
At K’s January 2016 appointment, the oncologist spent four hours paging through all of K’s medical history and discussing her treatment with her. He recommended K have a PET scan to assess whether the melanoma had spread. In the end, he concluded that Humira could have caused of the mole’s irregularities.”Could have caused,” he said. Everything now hung on that statement. It was now up to K, her Gastroenterologist, and this oncologist to determine whether or not to keep K on the Humira. He told his receptionist to make a follow-up appointment for K in a week. It was more than a month later before he saw K again.
Before discussing K’s actions further, we ought to note a couple of policy implications from K’s predicament with Humira and doctors:
Physical side effects from prescription drugs are not only common, they are multiple, they are to be expected, they may be compounded when anyone is on multiple medications and they may outweigh the benefits of treatment. Doctors know that some people --even seriously ill ones--will recover fully without any treatment and some will die even with the most efficacious treatment, i.e., it is not necessarily so that a diagnosis should always result in a prescription. If you are sanguine about the prospect of being cured of your lifestyle disease through the use of prescription drugs, I urge you to visit this site and check out the reviews which explain how prescription drugs are determined to be beneficial.
In addition to the known physical side effects of drugs, a secondary side effect of the regulation of medical care in America is a shortage of physicians, especially primary care doctors who are under-compensated relative to certain specialists and specialists in high demand fields, such as rheumatology. As of 2014, there were 318.9 M people in the United States, all required by law to carry health insurance and all needing a primary care physician in order to access the health care system (see Part 1 and Part 2); however, there were only 916,264 registered physicians in the United States. It is simply impossible for all of those 300+ million people to be seen by less than 1 million physicians. K was very lucky that she knew doctors who knew specialists or she may have waited months for an appointment, notwithstanding the critical nature of her condition.
Taking Healthcare Into Her Own Hands
By the time the oncologist saw her again in late February she had decided to take herself off the Humira as of February 4, 2016. It’s difficult to overstate the complexity of her decision. Humira had helped her initially, but it seemed less efficacious by late 2015/early 2016. She was quite sick from the ulcerative colitis in January and melanoma is a deadly illness as well. The PET scan, which was negative for any spread of the melanoma, was difficult and painful. As noted above with respect to any illness, some people will get well and stay well without treatment and some people will get much sicker even with clinically appropriate treatment.
Notwithstanding all the poor treatment and shuffling about K had received at the hands of the medical care industry, it had (in her opinion) likely saved her life on more than one occasion during the acute phase of her illness; however, in every instance of the recurrence of her illness, she had to make the decision about the course of treatment and suffer the effects of the treatment. When she had decided to take Humira, she had committed to that path to recover from her illness. When she had become quite sick again while still on medication and she had to cope with the melanoma diagnosis, she was forced to reevaluate whether she had chosen correctly.
When people have a chronic illness though they don’t just live in an acute phase, they also experience periods when they are not acutely ill, but nor are they well. There is no support system in Western medicine for someone during the non-acute phase of a chronic illness. K was uniquely able to help herself due to the knowledge that she had of anatomy and physiology in general and also her intuitive knowledge of her own body’s response. Further, she had been exposed to alternative medicine throughout her career. She knew how to utilize these therapies to assist her in recovery.
The Holistic healthcare industry addresses the need people have to be supported through the non-acute phases to realize a long-term solution to their ailment. There are multiple therapies which are available to those who are seeking resolution and healing, including methods such as Massage Therapy, Acupuncture, Meditation, Gyrotonic, Pilates, Yoga, Chiropractic, Cryotherapy, Infrared therapy, Nutritional therapy, and more. In the stage when pain management is critical, it is in these places people can find caring, compassionate, attentive practitioners who are able to follow-through.
While there appear to be an adequate number of people providing alternative services, untold amounts of money is expended on Managed Care, billing specialists, state health care coordinators, state exchanges and other non-health care providers, i.e. the patient’s resources are depleted by administrative expenses and cannot be utilized for these much needed additional medical services. Patients are further challenged in accessing these services since the alternative care providers are not integrated into the medical model.
The Moral of the Story
The moral of the story is: There are not now, nor will there be in the foreseeable future, an adequate number of medical doctors available to care for all the sick people in America. This means that it is imperative that we stop forcing people to expend their limited resources to pay costs (such as, complex billing costs, private and public administrative overhead costs of care deniers and inflated medical costs) that do not benefit the payor. If individuals have control of their own finances, they can better access the services they need at the level of care they need.