On June 24th and 25th, 2019 a #DCGreen2019 rally will be held to bring awareness and knowledge about #Gastroparesis and #FunctionalGImotilityDisorders to Washington, DC. This will be held in conjunction with IFFGD (International Foundation for Functional Gastrointestinal Disorders).
For those that are unable to physically participate in person, a virtual march will be held as well. Everyone will be able to participate, whether in person or from the comfort of your home. Thank you to all involved in the planning phases! If you'd like to join in the planning please feel free to join us at https://www.facebook.com/groups/GPMarch/?fref=mentions&__tn__=KH-R! More specific details will be available at a future date. The tentative schedule in my friend Melissa Adams VanHouten's words: "Monday will consist of an IFFGD-sponsored speaking event focused on Gastroparesis-related presentations in the morning (at a central hotel conference site) and our Gastroparesis rally (at the Capitol, within walking distance of the conference site) in the afternoon. Tuesday will be the day we meet with legislators. We will meet briefly with the IFFGD in the morning to cover tips on engaging and conducting a successful office visit and then break up into small groups and head back to the Capitol for meetings with our individual representatives. At the end of our sessions, we will meet back at the conference site for assessment and some closing remarks. Please keep in mind the itinerary is tentative, but the dates are now concrete. You are welcome to attend any or all of these events. Additional details to follow! Let's go create some change!"
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I have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion. Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears. I've been dismissed, ignored, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp. And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along. I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay. It appears at times that Doctor's will suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Some (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure. As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements, even if symptom management is all that we can do. And trust me, there are some rather awesome doctors around! I can admit that. A little suggestion from a patient, please don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, losing the careers that we worked so hard for and even loved, watching our family worry too much, or even begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes. We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how? According to urbandictionary.com, the definition of Vulnerable is "Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!" Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challenge. The frustration of some doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Unfortunately, some doctors create more harm than good. Don't get me wrong - there are magnificent doctors around as well. They are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life. The thing is, when a someone is already struggling and falling apart from illness and it's impact on daily life, a doctor has the power to throw the life line to help or the anchor to make one drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin. For example, I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend 2011 my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room, my blood pressure crashed again so I was rushed back to the ICU. A day or two later, after I stabilized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctors later told my family and I that I would likely have died if I had been discharged from the ER. I was fortunate. During the madness, someone did step up, listen, and take care of my needs. I have other memories validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine." From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied over the past few years. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of previous medical experiences. Stating that, I must give credit to the doctors (and nurses) that did listen and help me in the midst of the negative experiences. Additionally, I must remember that, like us - doctors are human. Like us - doctors choose how to react and will make mistakes sometimes. Like us - doctors have good and bad days. Which unfortunately doesn't make being vulnerable any easier. I have had and currently have some wonderful and greatly appreciated doctors. Even though I may trust them, how much I actually open up or let them know depends, as I find it pointless to keep repeating the same issues/symptoms over and over when I know that there is no simple fix. But knowing that there are knowledgeable and compassionate doctors that are willing and wanting to help is most definitely reassuring. So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare. Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders.
The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team. If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well. In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial. (Clicking on the title will take you to the book's amazon page.) Gastroparesis Healing Diet by Tammy Chang Info regarding healthy eating and recipe advice from nutritionlist and patients. Changes that Heal (Book & Workbook) by Dr. Henry Cloud Book and workbook for deeper understanding in developing and healing yourself emotionally. A Blessing In Disguise by Kristen Fox and Mel Kenaston Blessings in Hidden Places by Kristen Fox and Mel Kenaston Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV. After the Diagnosis: from Crisis by JoAnn LeMaistre Written by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal. Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyre As a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies." Gastroparesis: My Personal Journey by Patricia L Rosati Autobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life." After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter Dr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing." Eight Days by Scott Thompson This book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life." 30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans Daily devotionals and prayers about life with chronic illness. Miracles from Heaven by Christy Beam This book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child as a result. But all is not bad, when faith is involved and certain people enter your life. If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read. Video from my friend Melissa VanHouten, urging the medical community and public to listen, hear, and support the GP communities need for awareness, care, and better treatment options. It can be shared from the Youtube link. As a patient with chronic illness, I have had many experiences with doctors and medical staff in clinics and hospitals, as an outpatient and an inpatient. I have undergone countless diagnostic tests, witnessed doctors that truly cared and wanted to help, as well as met some that were dismissive or unwilling to listen.
My health issues and experiences have made me more knowledgeable with healthcare and health advocacy. I have an interest in learning more about health and patient care via social media, current research, medical articles, and even TV series or movies. Currently, I enjoy watching THE GOOD DOCTOR, MYSTERY DIAGNOSIS, and GREY'S ANATOMY. However, my favorite medical show by far is THE RESIDENT on Fox. When watching THE RESIDENT, I find myself loving the characters of Conrad, Devon, Mina, and Nic. Why? Simply because they are in medical care for the right reason, to help and protect patients! Unlike other medical staff and beauracrats, they are not driven by greed. I am well aware that everything in THE RESIDENT is not accurate, that the real world does not function exactly like the show, that lines are grayer, and it's not realistic to expect doctors to take the extreme measures that they do on the show. However, it IS refreshing to see light and attention being brought to some of the negative aspects of our healthcare system. There are a lot of things going right, there are many exceptional doctors and nurses hidden in the often cold money-driven healthcare field, but also many areas and qualities that need improving. We need care and treatments to be with the best interest of the patient in mind. In regards to this TV series, I have thoroughly enjoyed watching all of THE RESIDENT episodes thus far, some watched more than once. It is a show that I eagerly wait for and actually stay up later than usual to watch. Yes, there are wonderful personalities, actors/actresses, and drama that aides in making the show pleasurable to watch; But the medical storylines and doctor-patient connections are what draw me in the most. Last night's episode, Season 1 Episode 6, was especially intriguing and compelling for me, as it focused around a patient that I could really relate to. (Beware: Possible Spoiler Alert) No, I do not have the same illness as him, though I am aware of MALS since some online friends have had it. The emotions that he portrayed, on the other hand, were extremely familiar. I could feel the pain, frustration, malnutrition, and testing fatigue, that having a misunderstood or unfamiliar GI condition can create. The most captivating patient of the night, was a young man that was suffering an injury partially due to malnutrition. He was facing nutritional deficiencies as a result of a chronic digestive problem that made it nearly impossible for him to eat. (Hmmm, ends up being a different condition than mine, but oh so real!!!) Throughout the episode, his goal was to feel better, but he desperately did not want to return to being a test dummy. He had learned from his medical experiences over the past 10 years, that doctors had no idea what was wrong with him or how to treat it. Therefore, he was hopeless about getting answers for his digestive health and nutrition and just wanted to correct the injury, then return to his "normal" life of suffering that he had unfortunately become accustomed to. YES!!! Finally, a TV show that demonstrates how patients sometimes have doctors - for years - that are unsure how to diagnose or help a patient that is literally starving from malnutrition! Like many other patients I know, his past doctors just left him to figure out how to deal with it on his own! Sadly, this happens ALL THE TIME in the Gastroparesis and Functional GI Disorder communities. This GI patient was pleading to just be left alone. He no longer wanted to be a pin cushion. He had been one too long already, with no answers or relief. Conrad, the ER resident doctor, was determined to help him without dragging him through a lot of unnecessary tests. Not surprsisingly, all of the "specialty" teams at the hospital swarmed in with a desire to run all kinds of tests, most of which he had already undergone numerous times before. Of course, they wanted their own tests (not another hospital's results) and saw the money that could be raked in - not taking any time to consider what stress and pain, physical and emotional, that additional testing would create for a patient that had accepted, as much as he possibly could anyway, living everyday with malnutrition and digestive pain. Not to mention, the psychological ("all in your head") ideology that's often thrown out there as a possible reason when doctors don't have the answers. Surprise, surprise. Isn't that a common diagnosis when a doctor is unable to figure out or "cure" someone from a chronic misunderstood condition? Especially one that is invisible. I'm not nieve. I am sure that doctors and/or nurses in the medical field will deny that some, maybe even most, of things in this show occur in real life. I'm sure that many pin point parts of the show that are "ridiculous" in a true hospital setting or possibly even humorous, just like I do when watching movies about teaching. As a patient though, this series speaks volumes. Every single day I witness, hear, and read about patients going through similar situations. In fact, I too have felt like a testing dummy with no answers or effective treatments, just test after test. It becomes frustrating, stressful, and tiresome. At times, I too have felt like completely avoiding ERs (or doctors) for any situation, regardless of how severe my symptoms are, simply because I have lost hope that anything can be done to help me. I am hesitant to even bother with undergoing further aggravating and undesirable testing. I, like many other GI patients, have to depend on trial and error, off label medications, in hopes of better controlling the symptoms with no end in sight. The majority of diagnostic test that chronic GI patients have to endure are not only painful, but often exasperate symptoms and create more discomfort or additional problems, yet provide no new ideas toward treatment. It gets discouraging and old really quickly. Sometimes you just want to be "fixed" and leave, as he did with his injury, regardless of the malnutrition or other GI issues that may be going on at the present moment. Regardless of the outcome. As chronic patients fighting an invisible GI illness, our condition is often mocked or ignored. I thought it was great how THE RESIDENT episode demonstrated this by showing the other doctors rambling on, ignoring the patient's opinion or story, arrogant, and more interested in money and countless testing, rather than the actual patient. Doctors that are nowhere to be found when hell breaks loose as a result of the tests' side effects on the patient. (Yep, these type of doctors due sadly exists in the real world.) Don't get me wrong, there are some valuable tests that can and need to be done, but retesting everything gets to be ridiculous and unnecessary. Meanwhile, Conrad took the time to listen and respect what the patient was thinking and experiencing. He was able to take into account the whole picture for this patient, seeing him as a person and not a price tag or business deal. Conrad was authentic and only wanted to help the patient reclaim his life, without the continuous pain and malnutrition. Conrad is the perfect, IDEAL doctor. He CONNECTS with the patient, RESPECTS his patients' need for QUALITY OF LIFE without pain, shows COMPASSION, LISTENS, and LOOKS OUT for his patients' bests interests. There is no "patient shaming" from him and for once the writers on a medical related show didn't portray the patient with chronic pain as someone searching for pain medication. (Not all chronically ill patients want or use prescription pain medications. Many patients, like me, actually avoid them at all cost, as they are aware of the stigma and realize how they can increase GI problems by slowing down the entire digestive system. Most of the ones that do require pain medications are just looking for some relief of some sort to get through the most painful times. ) So, in reality, are there any doctors that share the same desirable qualities seen in Conrad's character? Absolutely! I've been lucky enough to run across a few of them. Unfortunately, some of them are no longer in charge of my care due to circumstances outside of our control, such as moving. However, if given the opportunity, I would immediate run back and place my care in their hands as fast as possible. Are all doctors going to be able to solve every diagnosis or find the perfect treatment plan, as Conrad does on THE RESIDENT? Not necessarily. But, as a patient, that CAN be acceptable when you are able to trust your doctor completely and feel confident that he/she is on YOUR team, searching for what's best FOR YOU, and not just interested in the profit. Can you imagine the comfort and relief it would be as a patient if all doctors thought and reacted as Conrad does? To have doctors that make an effort to talk with you because they really want to HEAR about your health story and the impact it has on your life, in your own words, instead of just what your medical record states. In addition to Conrad's character, Devon's character (the intern), is also learning the importance of protecting and LISTENING to HIS patients. The action of listening is often neglected, yet is so simple and so meaningful to patients, especially patients dealing with chronic illness and fighting for a sustainable quality of life. Yes, I know that there are time restraints, electronic medical record requirements, and physician burn out issues. There's extra "paperwork" or responsibilities behind the scenes that patients aren't aware of. But, physicians actually taking the time to hear what their patients are saying and personally dealing with can be invaluable! Listening, empathizing, and understanding patients as a way to save lives, what a novel idea! This is just one major improvement that the health care system needs to reform! Personally, I will never forget the doctors that have been there for me. I likely wouldn't be here today if it weren't for a couple of compassionate doctors that took a moment to hear me, believe me, and respect my personal needs and quality of life. They will always be remembered and appreciated. Unfortunately, I've also had some that were set in there ways, couldn't admit that they didn't know how to help, or even placed blame on me - only to create additional issues, intensify symptoms, or make me have to deal with some issues much longer than necessary. My ultimate goal is to find more dependable "Conrad" doctors in the health care system and on my personal health team, and less of the "arrogant profit seekers." Anyway, I look forward to seeing what else THE RESIDENT has to offer in the upcoming episodes! I wonder what situations and conditions will be presented and portrayed? Who knows, maybe one day they will create an episode including functional GI disorders, such as gastroparesis or colonic inertia. Maybe awareness will be brought to enteral nutrition from feeding tubes, or an episode including patients with ostomies. I don't want or expect to see just the rainbows and sunshines, I want to see real issues with realistic treatments and responses. Will everyone be cured? No. Will it make people witness different medical conditions, procedures, and the positive and negative aspects of medical care? I sure hope so. I am worthy, like everyone else is, for effective healthcare. I have had, and continue to have, experiences with a variety of doctors in different locations and specialties with varied ranges of satisfaction. Some have been dismissive and uncaring, some friendly, compassionate and willing to help, and some have exceptionally gone above and beyond to help me discover improvements and regain a better quality of life. Below are a few of my personal thoughts about healthcare. They are not directed at any one specifically, but coming from concerns and fears that I currently have or have had during my health journey.
So how can a healthcare provider demonstrate effective healthcare for me? What are my expectations? 1) Acknowledge and convey that I am not crazy, my symptoms are not in my head, I am not exaggerating, and what I experience is real! Unless you have seen me during the extreme symptomatic times or personally experienced the pain and nausea on a daily basis every time YOU try to eat or drink something by mouth, do NOT judge or patronize me. 2) Treat me as an individual PERSON, not as a textbook example or just a case to deal with. Listen, truly listen, and hear what I am saying. Imagine yourself in my shoes. Respect that I know my body better than anyone else. If you respect me and understand my medical narrative, then I can better trust you and your suggestions. If you don't know how to best explain or understand my issue, please be honest with me. I'd rather know that you're unsure but willing to "think outside of the box", talk to colleagues, or conduct more research to learn alongside me, than be brushed off, ridiculed, or given up on. When you walk out the door, you may be able to put the paperwork aside and not think about it again. Unlike you, I have to deal and LIVE my life, with symptoms, every day. I can't close the door and forget what's ailing me. It's encouraging when I know I have a doctor that is dependable and invested in actually helping me when the time arises, even if they don't have all of the answers all of the time. 3) If labs come back abnormal and need immediate attention, please contact me. Don't make my primary or I jump hurdles or go on a scavenger hunt to find information that was needed as soon as possible. For example: Positive lab cultures for a central line and/or blood infection should be relayed to us immediately, not held on to for a week or more. I shouldn't have to keep asking over and over just to receive a copy of my own culture and lab results, ESPECIALLY if they were positive for an infection. 4) I'm aware of my risks! I do not take my health lightly. So, please value my needs and wants for an improved quality of life. In just this past year, our online support group lost more than 53 lives due to health complications including suicide, malnutrition, sepsis, and organ failure. Too many were dismissed or not listened to when they reached out for help from their personal doctors or were unable to find a doctor willing to take the time to help them because they were considered too complex! Friends that went to the ER for fluids because they were dehydrated, were mocked, judged, and blamed from the doctors and nurses that were suppose to take care of them. Some were even sent away with no help or answers, only to end with confusion, uncertainty, and unfortunately, even devastating outcomes. I realize the negative impact that chronic illness can have on all aspects of one's life, including dangerous risks and complications. So please respect my knowledge and help me understand what is the best possible treatment plan for me when taking EVERYTHING into consideration. I realize how important it is to have a medical team that communicates well. Yes, I may come with some fears or be hesitant at times, but I'm not being uncooperative, instead just being cautious because of similar past experiences that I or my friends have been through. In order for me to gain confidence or comfort in the treatment plan we discuss, I may need to ask questions, share concerns, or simply have time to think about it. 5) I respect that doctors have their own colleagues that they know and work alongside. I don't mind a doctor asking me or sharing information with me in the case that I may be interested in meeting or working with one of them. I promise that I will always listen to recommendations, along with reasoning, and consider my options, including doing my own research if necessary, before making a decision. In the case that I don't feel like it's the best choice for me at the time, if something changes, I will once again reconsider my options and the recommendation. Just give me the same respect if I share how I already have someone in that profession that I have developed a trusting bond with. One whom works extremely well with me, understands and has witnessed my health scenarios, helped me handle them for numerous years, and is an essential member of my health team. Trust me, finding caring trust-worthy doctors is not easy. Starting over with new doctors that are not familiar with where I've been, what I've experienced, the progress made, or the struggles that I still face with my health day after day for 5 years come February, is stressful and intimidating. I shouldn't have to keep being put on the spot to "prove" what I deal with. I deserve to have a medical team that knows me and understands me, that I feel comfortable with, and that I can have open, honest, and trustworthy communication with. 6) Do I want to roll a pole around all day with IV hydration or carry around my tube feeds all day? NO! They honestly can be a pain in the ASS some days! However, I am aware that they help me. They are keeping me stable, allowing me to function better at home, get out of the house for a few minutes with family on some days, and keep me from wobbling around in dizzy weak lightheaded spells. More than many may realize, I'd love to be able to eat or drink an adequate amount to meet my nutritional and hydrational needs. I'd love to be "normal" or even semi-normal again. But my body isn't there and likely never will be. I'm not dealing with a simple stomach bug! Saying that we're going to get more fluids in and remove the central line sounds easy enough in theory and looks great on paper. I understand that you are concerned. Even though it may not be true, when dealing with the consequences of minor attempts causing so much distress, it SOUNDS like I'm being told that I'm going to be stranded, left in a dehydrated state, and have to return to ER visits on a regular basis for fluid intervention. It SOUNDS like, I'm not being believed, that I don't know my body, that it's ok if I'm stuck at home lying on the couch like a lifeless log. It SOUNDS like my concerns and fears are not being heard. Will I try to follow my doctors' ideas and suggestions? Absolutely. I will continue to keep pushing limits and dealing with the painful nauseating consequences again and again, even if I'm already trying. Nonetheless, it is terrifying to consider that my fluids may be taken away and I'll have to return to the hell I faced prior to receiving them and when I attempted ceasing them during treatment with my prior GI. Yes, I get it, the medications are different and still being adjusted. Maybe, something will improve. We won't know unless we keep trying. I admit all of that may be true; The new medications may eventually help me improve my nutritional input with less severity in symptoms. What appears to be missing is that I DO TRY ALL THE TIME, which I vow to continue doing, and I STILL STRUGGLE with symptoms. The thought of being stranded and dehydrated or being forced to hesitate on a regular basis if the ER is necessary is terrifying. I hear you when you say that we will do it gradually, and appreciate that. Slowly decreasing fluids will be more helpful than a drastic halt. But, please hear me when I say that almost feels like a self-punishment, even when I AM keenly aware that it is being done with the best intentions and in an attempt to decrease my chance of a life-threatening infection. 7) Remember, I am me! My body works based on my health, my organs, my muscles, etc. I live with my body 24/7 while you may only see me for about 30-45 minutes every 3-4 months. There is no need to compare me to other people, especially ones with other illnesses. It is not reassuring. They are not me and I am not them. We are all individuals. The way my body reacts to treatment plans may not be as effective as it is for others. Similarly, certain treatments may work better or help me more than they help someone else. I've learned that treating my illness takes a lot of trial and error attempts and I can't help but become leery of changing something that is notably helping me. Saying that, a doctor can help me understand their point of view and/or reasoning by taking the time to explain exactly how the newest treatment plan(s) we discuss will be more reasonable than the current one for MY health, now and in the future. 8) Realize that ALIVE and LIVING are 2 different things: If it takes feeling unbearably awful to stay home pushing fluids in an uncooperative GI system, without help from IV fluids, just to stay alive, what's the point? If I become more miserable every day, and am literally just here surviving in discomfort, hope is lost, and the desire to be around decreases. If I must take risks to have some relief and energy, so I can actually LIVE with my family, go to the store with them, interact and help them around the house, attend church on some Sundays, etc.. is it not worth it? IV hydration has definitely helped me become more balanced. Being hydrated gives me a reason to keep striving forward with some hope that tomorrow or the next day may be a decent day to enjoy with my family, while also providing me time and limited energy, but energy nonetheless, to create family memories that help me face the consequences after or during the awful symptomatic times. At times I may choose to place emphasis on Quality of Life over Quantity of Life or vice versa. To be quite frank, if Quality of Life diminishes to levels that are hard to recognize or accept, that's when people are more likely to give up on life itself. That's when health seems to take a nose dive, hope disappears, and suicidal thoughts or worse become more pronounced. This is what I want to AVOID at all costs! However, I also don't want to take unnecessary risks for things that may be avoidable, such as infections or blood clots. It's a difficult line to draw in either direction. So PLEASE be PATIENT with me when situations like this occur, whether it's regarding IV fluids, tube feeds, new medications, side effects from medications, surgical interventions, etc. I am not being difficult! I may just need some time to adjust to the idea or figure out my personal comfort level. 9) While I need and want my health providers, regardless of specialty or level, to be comforting and encouraging while providing me with effective medical care, I don't want to be plagued with false hope. My hope has been crushed too many times and I now feel compelled to try and remain neutral. I try not to let my hope build too much, as I don't want to set my family or myself up for more disappointments or failures. I need realistic expectations and goals more than overly optimistic hope. I'd much rather be pleasantly surprised with unexpected positive results once in awhile, than repeatedly discouraged or hurt by expected improvements that do not occur and possibly may never be obtained. 10) Being friendly, smiling, and laughing are part of my character, even when I feel awful. These characteristics help me cope with feeling miserable. It is also my way of trying to comfort my family, especially my kids, so they do not worry about me. When you get to know me better, you will likely catch me trying to put on the "brave mask" as a way of protecting myself. I do not intentionally downplay my symptoms, but have been told that I do so quite often. For this hurdle, I apologize. However, if you actually listen to what my family and I describe, watch my body language, and try to relate, you will likely be able to tell the difference between my "coping positivity" and my genuine feelings. Eventually, with time and after trust is gained, I will feel more comfortable and become better able to be authentically vocalize my reality. In short, effective healthcare is seeing me as an individual PERSON, treating me with respect and empathy, providing me with honest medical care and knowledge of the positives and negatives regarding my health and treatment options, while also developing a relationship built on open communication. Together, my healthcare team and I can determine what the best course of action is for my personal health circumstances. When effective healthcare is provided, a healthier future can be made possible. And isn't that the ultimate goal? January 7, 2018
Wow! 2 years ago today, I made one of my most challenging and risky health decisions. I had my colon removed and an Ileostomy placed. It almost seems unreal that it has already been that long, as the memory of my struggles with colonic inertia prior to surgery are still very clear. In no way do I miss the hours of squirming around on the bathroom floor in extreme excruciating pain, the myriad of numerous laxatives needed every single day, or the tortuous hell of impactions and fissures. I know that I still face health obstacles daily, but, can honestly say, that after the recovery period, I have ABSOLUTELY NO REGRETS! In fact, I credit and genuinely respect my favorite GI for truly listening to my complaints, being concerned about my quality of life, and helping me discover the reasons as well as a solution for at least some of my complex and troubling issues. I also appreciate him for referring me to a wonderful surgeon, whom after listening to my concerns, conducted other tests (defecography and a second anorectal manometry) to determine if a reattachment would be applicable or if an ileostomy would be required. I firmly believe that we made the best choice for my specific situation. I am able to accept our decision (and my ileostomy) because we confirmed my pelvic floor dyssynergia would likely prevent a reattachment from being successful. In addition, my psychologist helped me prepare mentally and emotionally for the surgery and recovery, which was extremely beneficial. Yea, I'm the first to admit, my body is definitely not ideal. I still deal with GP symptoms of nausea, fatigue, and pain on a daily basis at varying degrees of severity. My body and health are still teaching me all kinds of new knowledge and experiences, many of which would have been nice to have been able to skip. I still depend on tube feeds and IV hydration to keep me nutritionally stabilized, work with medical doctors to help improve my physical health, team up with my psychologist to maintain my emotional health, and continue to put my trust in GOD to stay positive spiritually. I can't deny that there are times I get frustrated and irritated with my health. Sometimes, I get upset and feel like I’m becoming a misfit machine, wondering if I'll ever get better. However, when all is said and done, I am so thankful and blessed for the support I have around me and the medical interventions (regardless of how annoying they can be) that keep me here with my family. Days are not perfect, some far from, but there are still many marvelous moments to cherish! So......... HAPPY 2nd ANNIVERSARY "ILEO" !!! I acknowledge and welcome the improvements that you have made in my life. Because of you, the misery of waste removal has been eliminated. Because of you, endless hours spent crying in the bathroom are now spent sitting with family. Because of you, I've reduced the amount of medications entering my body. Most importantly, because of you, I've regained a few enhancements in my quality of life. I am not a patient that likes to complain about my medical care. I pride myself in being a knowledgeable, respectful, and easy going patient. However, in certain circumstances, I'm left with no other option, such as this case. After the lack of appropriate care, in fact, being placed in a dangerous and risky predicament, I wrote the following letter to my hospital president with the goal of making them aware of the negligent care they provided and hopefully prevent a repeat in the future for others or me. (This was not the same hospital that I usually visit. All names have been omitted.)
I am writing to you in regards of treatment, or more specifically lack of follow-up, from the -------- Medical Emergency Department in --------- and/or the area of the hospital responsible for lab cultures and follow-up contacts. I am complaining, as you will see in the description below, that I, the patient, was NOT notified al all from -------- Medical about Positive Blood Cultures (Klebsiella Pneumonea) being obtained from my central line (PORT), even though I had been experiencing related symptoms and have increased risks of infections due to my health, PORT, feeding tube, and ileostomy. As I am sure you already know, bacterial infections in central lines and in the bloodstreams are not to be taken lightly. At a moment’s notice, the infection can cause chaos within the body, increasing in severity extremely quickly, often leading to death. As a patient with chronic illness, I have sadly witnessed numerous friends in my online support groups, passing unexpectedly due to sepsis. Knowing this, I am very disappointed and even outraged that a positive culture didn’t lead to a phone call or notification. My goal in this complaint is not to have anyone fired, but do believe that whoever was responsible for not following through on what should be basic protocol, should be reprimanded and made aware of the dangers of their lack of attention. Whether it’s being educated on the dangers and specifics of PORT infections or new protocol measures, something should be done to keep this from happening to others. I was very fortunate, my primary and I were persistent in receiving a copy of the actual culture results (which should have automatically been brought to our attention) and able to begin the appropriate treatment before the infection intensified too much. However, we can’t deny the fact that my health was put at an unnecessary risks, being that nobody ever notified me or him. I would appreciate a response to this complaint, in writing or by email, informing me of what actions were taken, if any, what your hospital procedures are regarding blood cultures for possible central line infections taken during emergency room visits, and an apology for lack of notification. I do not take my health lightly, understand that mistakes happen, but also deserve to feel as though my family, friends, and I have a competent medical center/hospital, nearby, that takes patients’ lives seriously and responsibly. I am attaching more specific details below, as well as related medical reports. (For privacy reasons, not sharing medical reports on blog.) More specific details regarding treatment on Nov 22, 2017 & symptoms leading up to.. Prior to the date of my complaint, I had been in search for answers. On 11/18 I visited ------ Medical ER. I have no complaints about service for this visit, though in retrospect I wish the PA or I one had elected to pull blood cultures. Had had, vomiting spell night before, rough night, awoke to migraine, abdominal pain, and intense nausea. A few hours later, while running IV fluids for day, body all of a sudden went haywire. Sitting on couch, out of blue, constant severe pain, intense rigors, and horrible cramping/spasms running down both arms, legs, abdomen, chest, upper back, and neck. The pain was excruciating and I was unable to get still or in a manageable position. Definitely off of the rating scale, no question about it, but decreased to tolerable levels by time I was seen by the PA. My arms and legs began feeling tingly and numb, my home blood pressure at that time was 95/58 No fever. Diagnosed by PA as having myalgia. That evening, fever began, highest I recorded was 101.9 - went to ----- ER and told possibly flu like illness (negative for flu). Left with directions to alternate tylenol and motrin every 3 hours. Once again, in retrospect, wish we had pulled PORT/blood cultures but still first day of symptoms. 11/19-11/21 Symptoms continued, tried to wait them out, telling myself that I had already been to the ER twice with no answers/reasons except possibly viral illness that would take time to heal. Suffered intense spells, rigorous chills, off the chart pain. Sweatsuit with heating pads and heating blankets on high, as well as blankets and tears did NOTHING to help. Kept feeling weaker and weaker. Eventually, contacted PCP on 11/21 about extremely severe attacks with pain all over body, extreme nausea , migraine, shivering chills, chattering teeth out of nowhere. I was still wrapped up in hoodie, with neck and head pain, heating pad on legs and heating blanket also on High wrapped around me completely wiped out. I told him that I didn’t understand what was going on but wasn’t getting help or answers because labs appeared ok (or near range) and the severe indescribable attacks were in unexpected spells with lingering achiness and seemed to be linked with IV hydration via my PORT. His response: Possibly could be flu like, but also concerned that it could be an infection in my PORT as bacteria in bloodstream causes the exact same symptoms that I was experiencing. He urged me to immediately return to the ED if I had another episode as bacteremia can be very serious. On Wed 11/22, after continued symptoms and another off the chart episode, I did once again attempt going to the ----- ER. This time to have cultures run, as suggested by my PCP, to see if I had an infection in my PORT or bloodstream. (As a patient with a PORT for home hydration 5 days a week, a GJ feeding tube for daily nutrition, and an ileostomy - I am considered high-risk for bacteremia.) The pain felt too intense to travel any distance, even making it to the car was a challenge in and of itself. By the time I was finally seen in the ED, my symptoms had become more tolerable. ONCE again I tried to explain everything that I had been experiencing. The migraines, the pain, shivers, etc…. I shared my concern about having a possible PORT infection as the most severe symptoms seemed to intensify while running my IV fluids. I specifically asked to run blood cultures. Cultures were taken from my PORT, they did not take any peripheral cultures (from my understanding it's usually protocol to take both, so as to determine if the PORT is infected or the bloodstream too). I was diagnosed with a UTI. When discharged I asked for a copy of my “routine” labs, was told that they had no concern of an infection but would be contacted if it did come back positive, though Dr ---- expressed to me that he believed everything would come back fine. Upon returning home, I looked at my complete blood count and chemistry report from 11/22, I noticed some labs being out of range, but nothing too alarming, except my procalcitonin. I had never heard of procalcitonin before. But reading the report it said my procalcitonin was 6.26(c) which is high considering that the normal range is supposed to be 0.0 - 0.05. Underneath the result was a reference table that stated anything greater than 2.0 = systemic infection (sepsis) is likely, unless other causes are known. 11/25 I continued to feel absolutely dreadful, but took the keflex pills as ordered for the UTI Dr ---- diagnosed me with. Thinking maybe it was just an awful UTI making me feel so awful (even though I had NO UTI symptoms.) I did contact my primary (he is in -------) to tell him about the continued symptoms, what Dr ------ had said about scheduling a follow-up in one week to make sure UTI had cleared, and to make him aware of the procalcitonin level of 6.26, since that was a lab that I was unfamiliar with. I also told him that Dr ------ told me I would hear back if anything actually grew in my PORT culture or if urinalysis culture showed that a different antibiotic was needed for the UTI. As of Sat, Nov 25 I had NOT heard anything back from my Wed Nov 22 cultures, so I was trying to take that as good news. I was still feeling awful and knew something in my body was not right! But also hopeful that the keflex would help. My PCP was concerned over possible bacteremia (serious blood infection), so we were both trying to be vigilant to get our eyes on the actual culture results. My complaint begins here, after being discharged from the ED, due to the lack of follow up for positive culture results. (I'm not sure who the responsible party for making these important follow-up contacts are, that's where I need your help.) 11/27 (Monday) I personally called -------- Medical to find out what my results from Wed cultures were. I wanted to be sure that the line cultures were negative (as something was telling me that it could be an infection) and I wanted to make sure that the Keflex antibiotic that they prescribed to me in fact did match with my urine cultures. It took calling the hospital 3 times, playing the runaround game, being placed on hold and transferred to someone else over and over again until I was finally heard something. I was rudely told that if I hadn’t heard anything that I was fine. That ------ or ----- would have called if my results had come back positive, that if I had not heard back then they were negative. (Really? In retrospect, that is not what happened in my case.) After that phone call, I figured that it was going to be a waiting game and that with time my symptoms would resolve. According to ----Medical, nothing else could be done to help me but waiting it out. On Tues, 11/28 I contacted ------- Medical Records and requested that they send a copy of my records, labs, notes, and cultures to my PCP for my ED visits on Wed 11/22 as he had still not received any paperwork. 11/29 PCP let me know that ------- sent records to him, but did not send the culture results that we specifically asked for, which were the most important part that he needed. Again, I called ----- Medical records, she was polite and apologized, and said she printed it off this time to make sure the cultures were there and was faxing it at that moment. Thurs Nov. 30, my PCP let me know that he STILL didn’t have a copy of the needed cultures. I personally went to ------- Medical myself to pick up the actual copy so I could ensure that my primary received the cultures. Upon reading the results, I immediately read that the cultures were POSITIVE, yet NO ONE had bothered to attempt calling me or contacting my PCP to let either of us know. The culture was growing Klebsiella Pnuemonea! Did they not realize how serious even life-threatening, having a line infection could be? By the time I got home, while in the process of contacting my PCP, his nurse called and said that my PCP had just received the cultures and that it was indeed positive. I was instructed to be seen in their ER, take my culture reports with me, and would need to be admitted for IV antibiotics and new cultures as this could become extremely serious, possibly even leading to Sepsis, which can also lead to death. Talk about frustration, overwhelming fear, and confusion. Why would ----- have not let me know about these results so I could have been notified and begun treatment earlier? Why were they willing to put my life at risks? Hell, according to the paperwork I picked up on Nov 30, ----- Medical had the POSITIVE results on Sat Nov 25! I called them on Monday the 27th to ensure that the results were negative and was given the run around and eventually told that if I had not heard anything then the results were negative. Well, we found out that this was not true! My results were in fact positive, I was symptomatic and had increased risks for bacteremia due to my central line, and no one let me or my primary know anything! It was Thursday Nov 30th, over a week after cultures were taken, after persistent attempts from my PCP and me, before we were ever able to find out the truth! I should have been admitted and receiving IV antibiotics the very day they found out that my cultures were positive. But no, they were willing to let me go without any intervention or help. Without any notifications. What if I had become septic, faced organ failure, or worse, died? Any of which were possible, because they did not take my health seriously, simply because they didn’t take the time to tell me that I needed to be started on IV antibiotics to kill the bacterial infection that was present in my line and come to find out (after admitting hospital took peripheral cultures) in my bloodstream as well. ------- Medical was negligent with my care and treatment due to lack of follow-up. ------ Medical was responsible for my care and should have contacted me immediately after seeing that the cultures were positive for Klebsiella Pneumonea. My primary guided me in the direction that led me to correct diagnosis and assistance. He easily could have let things go as well. He stepped up, where ----- MEDICAL FAILED me! Somebody dropped the ball at my expense, which is exactly why I am filing this official complaint. On Nov. 30, after learning my culture results from the actual copies that I requested, I did in fact follow my PCP’s advice and visited his ED. They took cultures of my PORT line as well as 2 peripherals from my arms, admitted me for IV antibiotic treatment of Rocephin, removed my PORT on since all cultures from PORT and arms came back positive for Klebsiella Pneumonea, and eventually placed a PICC line before discharging me later the following week, with the remainder of my IV antibiotic and a few days of oral antibiotic (Cipro) following the conclusion of my IV treatment plan. The purpose of my complaint is for ------- Medical to determine who didn’t complete their job effectively, who did not follow up and contact me about the possible life-threatening results and need for IV antibiotics. I want to prevent the same thing that happened to me at ----- Medical, from happening again to someone else or me. The next time, the patient may not be so lucky, and may suffer severe consequences, or even death as a result of someone not taking a couple of minutes to make a very important and simple phone call. Thank you in advance for your prompt investigation into this matter, ------------------------------- Afterthought: *Did sending this complaint accomplish anything? I don't know, possibly not, but it did allow me to have my say. Maybe, just maybe, it at least brought the issue to their attention and made the responsible party aware and reprimanded. Supposedly, according to Chief Medical Advisor, protocols were changed to alleviate and improve their policies to prevent this from occurring again. I know that his comment was likely just hot air, but hopefully, it did make an impact. |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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