How I've Helped

      ❃      A few years ago, I was engaged to accompany a young adult to see a specialist. The specialist suggested that he try a newly approved drug. Uncomfortable with this risky endeavor, I instead asked  about a particular test that I thought might help him. "I guess we can try it," he responded. In the end, this test lead to the diagnosis, and steered the treatment in an entirely different direction. Much needless suffering and risk was averted  -- not to speak of the money and time saved as well. 

      ❃      B.W. was an eloquent and accomplished attorney, in his early 80's, until he suffered a stroke and lost most of his self awareness and intellectual acuity.  His wife, also in her 80's, was emotionally overwhelmed by the situation.  She tried to manage his medical care but easily became confused by the issues involved and the medical advice they received.  She was extremely inaccurate when it came to assessing his condition. The family asked me to come onboard to help.  I spoke with physicians I was working with and found a cardiologist to treat him. On our first visit with the new cardiologist,  I stood  behind B.W. and his wife, as the physician asked questions. As the wife inaccurately answered one question after another, I stood behind her, shaking my head "no," in clarification. No, he cannot walk normally; no, his general functioning is indeed greatly reduced. Throughout multiple visits, the cardiologist relied on me to make sure her instructions were correctly understood and followed. And a few years later, on our last visit, as she was leaving the practice, she told me, "I could have never done this without you."

      ❃      Ten years ago, my father began to experience swelling of his ankles, a textbook symptom of heart failure. In a knee-jerk reaction, the general practitioner sent him to a cardiologist. The cardiologist, in turn, ordered a test, without taking a proper history. When I heard this, I was astounded. The test was aimed at providing very specific information not applicable to my father's situation, and it was complex, invasive and stressful, involving injection of radioactive material and taking 6 hours. With my father's permission, I cancelled the invasive test and requested a stress test instead. The cardiologist's office agreed, and my father passed the stress test with flying colors, thus excluding heart failure as a cause  (which would have been obvious from his medical history, if anybody had bothered to take one). 
            Years later, when my mother went to see the same cardiologist for hypertension, he ordered the same test for her as well. I again canceled it, and made sure that she saw a different cardiologist.

            H.S.  is a 69-year-old, generally healthy man, who was diagnosed with a specific type of lymphoma. The course of treatment was unequivocal, to be started as soon as humanly possible. I jumped to action quickly, offering to be involved as much as they needed.  First, I recommended that all serious diagnoses require a second opinion, ideally from John Hopkins, the world-level research institute, conveniently located in driving distance from his  home. Right away, I started calling  as many of my contacts as possible, until, through hard work and professional connections, we were able to secure an appointment with the leading specialist in lymphoma research the very next day. That same day, I reviewed all the patient's test results, researched his specific condition, and came back with two major problems: The diagnosis had been established on insufficient grounds, and in addition, no molecular subtype was identified, which might alter the choice of therapy.  When we went in to see the Hopkins specialist the next day,  he agreed on both counts, and concluded that a proper biopsy was needed in order to come to satisfactory conclusions. This again needed to be scheduled as soon as possible. Time was of the essence, as the therapy needed to begin as soon as possible, in order to ensure the best chances of success for the patient. Again, following phone call after phone call, I was able to secure the patient an appointment to have a biopsy done in the next few days. When the appointment came, I went along with the patient, in order to fully clarify the procedure for him, together with the radiologist. Although I was not admitted into the procedure room when we arrived, I was able to wait for him in the lobby until he was ready, and be there to drive him home. The next day, I was immediately on the phone again, rushing to ensure that the biopsy results were examined and processed as quickly as possible, as the results needed to be ready for the next doctor's appointment that I had been able to set up for two days later. I was able to get the attending pathologist on the phone, the results processed, and the beginning steps of chemotherapy arranged for the same day. When chemotherapy finally commenced four days later, it was with a very different regime than what had been originally recommended.  Although the biopsy confirmed the diagnosis,  the patient's subtype was a much more aggressive type than had previously been hypothesized, requiring a much more aggressive regime for highest chance of success.

            About a year ago, my very active, healthy mother-in-law called me out of the blue. "I'm not feeling well," she said, sounding panicked. I ran over and felt her pulse. It was very irregular. Quickly, I called an ambulance, who took her to Holy Cross Hospital. I knew I had to get in the ambulance with her, because if I followed in my car, they would not let me into the ER until they were "finished " with her, and I wanted to make sure that I was there to represent her side. In the ambulance, the competent young man put on an EKG, which showed a very erratic rhythm. On arrival at the ER, however, the first EKG already began to show a sinus rhythm (normal).  Testing had to be done, just to be sure, blood tests and the like. A heart attack needed to be ruled out, so she was admitted to the hospital for observation. By the morning, the new attending staff came in and found  a shriveled  89 year old little lady in the hospital bed, with no knowledge of her impeccable physical health and competency.  All they saw was an elderly lady who should probably stay put in the hospital's care. Soon, a heart attack was ruled out, but who knows what else was to be excluded… The hospital staff wanted her to stay for observation for as long as necessary, to rule out any possible abnormality. "She should get a cardiology consult, also wait for an endocrinology consult…" they told us.  I was adamant that this was the wrong way to go!  "This lady needs to get back to her daily routine, raking leaves for hours a day, plus walking for a good hour, as well as cooking and cleaning!" I told them. "She is in incredible health, and keeping her stationary and alone in inpatient care for as long as it would take to cover all possible medical bases would not be good for anyone!" Especially since her EKG results so quickly leveled out, showing little likelihood of serious concern. I contacted her cardiologist, and got an appointment, scheduled for the following day. Endocrinology took multiple weeks, but was not particularly urgent. I was able to persuade the attending to discharge her, insisting that we would continue her appointments and observation from home. During discharge discussions, I also asked to make sure that the results of the EKG from the ambulance were in her discharge notes. Upon questioning, however, this EKG was nowhere to be found. I walked back to the ER, presented the issue, and the nurse went to some back room and returned with the EKG strip! 

         The next day, at the cardiologist's office, the physician was very pleased - "You can't imagine how often I have no idea what happened in the ER!  Now I'm able to have a clear understanding of the situation, and adjust your medications according to the tracing."
            So off my mother-in-law went, back to raking and tending her beautiful garden…

  ❃      S.M. was a client, who was diagnosed with  early stage breast cancer. When a mastectomy was determined to be the best course of action, she went to see a surgeon, who immediately assumed that she wanted a reconstruction. When she voiced her doubts about the procedure, the male surgeon exclaimed, "But you will never feel whole again!" At this point, a mutual friend encouraged her to contact me. When we spoke, she was confused and distraught. "Do I have to?" she asked me. "No, you certainly don't have to!" I replied. "You can decide whether you want to or not -- it's entirely up to you!" Empowered, she chose to consult a plastic surgeon in order to discus her options. He described various options of reconstruction, making it all sound routine and simple. By the end of the appointment, she was beginning to lean towards one of options he had presented. Going forward, we had lengthy discussions, where I pointed out the various downsides. Reconstruction surgery more than doubles the surgery time. With longer surgery time comes increased risks, like ventilation-induced pneumonia, as well as cardiovascular risks.  I asked her, "Are you sure you really want to have more injury done to your body than absolutely necessary, leading to more pain and a much prolonged recovery time? And again increasing the risk of postoperative complications? You want to return as a functional mom to your child as soon as possible. Isn't that your highest priority?" She thought about it, read about the women's movement called "going flat," women opting to accept the body that they had been given instead of all the additional surgery, and decided to go for it. Now, over a year after, she is very happy with her choice, especially as quick recovery allowed her to start and finish chemotherapy as soon as possible.
            Her decision to start chemotherapy was a difficult one as well, as it was not clear cut to tell if she would actually benefit from it. I got her an appointment with the best breast oncologist at Hopkins, went with her there, and discussed the pros and cons. The doctor really did not have enough data to recommend her one way or another, but in the end she decided to do it. She stayed with that doctor at Hopkins who I had recommended, with intense supervision and multiple dose adjustments,  as no other infusion center really compares to Hopkins.  With G-d's help, she has been disease free since.
 

            A few months ago I accompanied W.O. and his wife to a doctor's appointment. He had a chronic and worsening lung disease, and had left his pulmonologist a number of months ago because of unsatisfactory care. This new appointment with a specialist at a University hospital was to restart his pulmonology care. I went to visit the patient at his rehabilitation facility five days prior to the appointment, in order to learn about his level of functioning. Two days later, he was taken to a local emergency room because of difficulty breathing. His wife requested that I come with her to see him there, so I rushed to accompany her to the hospital to visit the patient. He was distressed but stable, and it was clear to me that a way had to be found to get him to the specialist - one way or another. The next day, a Sunday, we started speaking to the attending, trying to get them to understand that he needed to see his specialist as soon as possible.  "When we discharge him he can go there, but his oxygen need is too large for discharge," they said." So can he be transferred?" we asked. "I don't see any medical need for that," the hospital staff insisted. "But he needs to see the specialist! As soon as possible!" I replied.  "He can see his specialist after he is discharged," they told us. But he could not be discharged! After we spoke to the charge nurse and every possible doctor, and the charge nurse spoke up for us at rounds, the attending finally said: "Okay fine, I don't mind if you find a way to get him there. But I'm not initiating it." So the following day, Monday, at 9:00 am, I started calling the office of the patient's specialist at University of Maryland in Baltimore. I called his outpatient office as well as his inpatient department, and explained to every secretary, who seemed to understand the plight of the patient and how urgently I needed to speak to the doctor. Each secretary I encountered gave me one small piece of the puzzle -- call there, find him there, he usually does this or this or that… I took down each of the names of  the people that I spoke to, so that I could ask for them and refer to them by name when calling back. I was very grateful that all my community contacts in Baltimore and Silver Spring, including  a patient advocate friend of mine who kindly called me back from Israel, were able to supply me with contacts in the  University of Maryland network. By 4:00 p.m., one of the ladies I had spoken to called me to tell me that the patient's specialist, Dr. T, would be calling me shortly. And soon he did, very succinctly giving me instructions on how to proceed: "Make sure the patient is not discharged  -- he needs to be an inpatient for this to work. Have the attending call the Medical Transport service at this number, and tell them that I'm the accepting physician. Make sure all records are collected, and start the process as soon as possible." "Thank you!" I responded, delighted. Quickly, with the help of the charge nurse, it was put in action. While waiting, I called the receiving ICU and spoke to his future nurse to give her a heads up. This was very important, as the patient "presented badly," meaning that, because of his lifelong cerebral palsy his movements were jerky and his speech slurred, making it easy to mistake him for man of limited intelligence, which this systems analyst certainly was not. Wherever he was seen for the first time, I made sure to make the clinicians understood this.  By 11:00 pm, the patient was strapped to a stretcher for his trip to the University of Maryland ICU. I had been waiting around to make sure that no last minute glitch could undo my day's efforts, but when, finally, the patient was transferred to the care of his specialist, I went home that night. We saw him there the next morning, resting comfortably, uncomplaining as always. Medical personnel were floating in and out, and soon a nurse came in and gave me Dr. T's cell phone number.  The following day, we finally got to meet with the specialist, and the patient's specialized care could finally begin. Over the next two weeks I remained intimately involved, as every day brought new surprises, such as when his medications were changed and he went into atrial fibrillation. This was a known risk for him, and soon,  cardiology became involved, ordering a cardiac angiogram ("cardiac catheterization"), a high-risk procedure to evaluate coronary artery perfusion, an issue of no consequence here (as I pointed out to Dr. T "what for, are we going to do stents or cardiac bypass here?), the patient had clearly more obvious serious problems that needed to be addressed first. I waited to speak with the cardiology department all day, while the patient was put on "nil by mouth," meaning no nutrition, until finally the nurses came by and said that catheterization was cancelled. Did Dr. T talk to them? I don't know. By the end of the second week, all testing had been done, so Dr. T sat down with us to outline the little that could be done to improve the patient's functioning. And so the new goal was to return to rehabilitation in order to stop the deconditioning. Since the fall risk keeps the patients in bed,  every day in the hospital meant no walking. I was faced with the task of contacting social work, contacting rehabilitation centers, and getting it all done before the weekend, as this meant slowly losing more function in an environment at high risk of infection. Late Friday afternoon, the patient went off to the rehab at the Hebrew home, after I had packed him up and finally tied up all loose ends. His wife was too exhausted to come.

HarmonyAdvocacy@gmail.com  ∙  301-980-3994 (call or text)  ∙  © 2019 by Harmony Patient Advocacy, LLC

Harmony Patient Advocacy does not provide direct, hands-on health care, medical diagnosis, or treatment of any type and our services are not an attempt to practice medicine or nursing. Consultation with Harmony Patient Advocacy is not a substitute for the consultation and care of physicians or other members of the health care team.