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28YO, MARRIED AND HEALING FROM CROHN'S . . .

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14 years 5 months ago #69397 by fearlessphoenix
Boys are back in town and of course there is the laundry to catch up and the house is no longer spotless but I did end up missing them.

I am procrastinating and am supposed to be redoing my sister-in-law's resume but took a small pit-stop here. Some members of my church family are really struggling in their relationships and it pains me to see friendships being lost and harmed. I got to thinking about my own friends in high-school and those people who you always think you'll never lose track of and how differently all of our lives have ended up. My best friend is still living at home with his mother and his manic depression is just now being managed effectively. My first true-love boyfriend I found out committed suicide by hanging himself from a ceiling fan and was not compliant with his scizophrenia medication, another one of my friends assumed that since I had dropped out of high-school that I wouldn't want to come to the reunion and the one teacher who had a profound influence on me and the person I became has retired. I had been convinced that what you do in high-school really "makes or breaks" you but what I've since learned is that it isn't high-school that matters so much as maturity, a little luck, and common-sense. I see people here at work all the time with multiple degrees and brains so big they're liable to fall out of their ears but struggle in the most basic forms of conversation and friendship. Some of my co-workers thought it was a little odd that I just walked up to complete strangers and sat my lunch tray down with them and asked their name and which lab they were with. But it's not hard to figure out that all anyone really wants is a friend . . . :grouphug:

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14 years 4 months ago #69398 by fearlessphoenix
I'm still enjoying my work and an amazing blessing has befallen our family!!! My husband has finally landed a full-time job with benefits that are even better than my own - we paid cash for a second car recently and still looking for an affordable house.

I've been following the Katrina thread on here and don't know exactly what to make of all this. I don't know that there are enough shoulders to lay blame on although I have a few ideas of my own. Here in Missouri we worry about tornadoes and floods and seem to get along fine but here you still have a place to go . . . what really strikes me there is that there's NO PLACE TO GO. If I was single I'd be on Craig's list offering a room to a single female college student but now that I'm married and have a kiddo all my extra rooms and beds are spoken for. In my parents neighborhood they have one house with 19 people in it-I cannot begin to imagine sharing space with 19 people. I was also struck by the magnitude of the poverty - I had vague ideas about the poverty but nothing as concrete as those pictures. I feel ill when I think of those thugs with their assault rifles and guns shooting at innocent people and raping young women . . . there must be a special hell reserved for them somewhere. I think some people find it very easy to blame violence on poverty . . . poverty begets violence yada yada yada and I suppose it does but that belief and mentality gives no credit to those people who are dirt poor and still wake up and do right every morning and don't rape, maim, or kill-perhaps it is a miracle that they don't but I don't know that is the opinion I want to hold for humanity that while in poverty an absence of depravity constitutes a miracle :eek: . It's a disaster that I cannot begin to wrap my mind around and how in a country as wealthy as ours did we allow the situation to become what it became. :no:

The big legitimate question that is left after Katrina is "What now?" what do we do to better prepare because I think everybody can agree that preparedness was sorely lacking. I think that we have preparedness issues in our own lives. When I was very ill with my Crohn's disease my whole-life was lived in disaster-relief mode - picking up the mess from one crises while anticipating the next and I realized how complacent I became when I recieved a reminder call that I was overdue for routine lab-work. I've never missed a lab-draw until this last week when it never crossed my mind until I came home to an answering machine message. The more time and distance between my last "episode" and the here and now the easier it becomes to start forgetting that part of my life and move on. I don't need to be hyper-vigilant to the point of near paranoia any more but I do need to remain watchful and cognizant. I think that as time and distance begin to heal the wounds left by Katrina that a complacency will settle in much like post 9/11 . . . the only toe-hold a terrorist/Crohn's Disease needs is a little complacency.

I am disturbed by something else I've read that there have been comments made about lives being wasted in Iraq - Saddam admitted today to massive genocide involving the Kurds and that many of these people with their objections to the war would scream and holler bloody murder if ethnic cleansing happened within our own borders and no one was held accountable. If this war was about nothing else, WMD, Oil, etc. it was to answer for those lives lost and the genocide that happened at the hands of a maniacal dictator. It helped give those Kurds a voice from the mass graves . . .

I'm feeling blue and angry tonight - watched to much Dr. Phil and Oprah - need to go bury my nose in some chick-lit, take a shower and go to bed early - with a renewed gratitude for my shower, bed and books.

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13 years 8 months ago #69399 by fearlessphoenix
Sorry I haven't updated this diary lately. I have been consumed with work and family and enjoying my remission still a year later. My review came and went and the scientists were happy with my work quantity and quality and I got the highest rating possible and a nice raise. I think this may be the close of this diary as I've come to realize my fascination with science and medicine is purely at a layman's level and that there are people 100 more times gifted than me doing amazing work so I'm registered to take the LSAT in a few weeks and perhaps by reading my admissions essay cut and pasted below you will see where the last several months have led me. I love SIMR and had opportunity to learn much and even minister to a few quietly through friendship.

So here goes:
Langston Hughes asks the question “What happens to a dream deferred?” and wonders if it dries up like a raisin in the sun, festers like a sore and then runs, or stinks like rotten meat, perhaps it might crust and sugar over like a syrupy sweet. It is my experience that it is his nearly final conclusion that a dream deferred just sags like a heavy load. I assumed a new identity as a chronically ill patient ten years, six months and eight days ago that managed to turn my dreams into heavy loads that would not go away despite a quiet desperate internal plea that they would.

My new identity was handed to me on several eight by ten sheets of papers with odd pink circles photographed at infrequent intervals. It wasn’t the pink circles that changed my life it was the odd white ones made of scar tissue and the vivid red ones of active and gaping ulcers lining the better part of my colon. Those holes explained why walking from class to class was an enormous and exhausting effort for my young seventeen year-old self and why I had the pallor of a bed sheet in a Clorox commercial. The white scarring explained my inability to sit through any of my Honor’s level lectures without interruption involving a trip to the restroom. These pictures confirmed what had been suspected I had Crohn’s disease. Crohn’s disease is inflammation of the small bowel and colon. This results in severe abdominal cramping, anemia due to the ulceration, dehydration, malnutrition and total bodily fatigue. I had been told that if you don’t have your health you don’t have anything. That cliché is terribly wretched when you are left holding all of your dreams and plans in the palm of your hand then cruelly wake up one day and face the unyielding realization you may not have the physical means to achieve them.

Soon after I was diagnosed I read an essay in my Philosophy class by Albert Camus “The Myth of Sisyphus”. Sisyphus was condemned by the gods and forced to eternally roll a rock to the top of a great mountain where it would fall back on its own weight. The gods who had punished him had concluded that there is no worse punishment than futile and hopeless labor. The true tragedy is not the condemnation to the labor but the fact that Sisyphus is fully conscious of the futility surrounding his labor. The forced labor of Sisyphus is made all the more catastrophic because he completely realizes that his labor is a premeditated response to absurd conditions in his life that are way beyond the scope of his control.

I had developed a nightly ritual of counting the thirty plus pills required to maintain my health through the next day. Sisyphus in spirit sat next to me as I counted the sixteen Pentasa, four Bentyl, three Metronidazole, two Prednisone, two Axid, two Seldane, one multi-vitamin, one iron supplement, one folic acid tablet and countless Tylenol. Sisyphus would have understood the cruelty of this futile labor to control symptoms and the painful consciousness of knowing no amount of pill popping would ever cure my condition. Ten years ago this was the best that doctors had to offer me. They did their level best with what technology and pharmaceuticals could offer someone in my condition a decade ago.

I went through hospitalizations, treatments, procedures and surgeries to numerous to count in the ensuing decade. I had doctors that were good, bad, and indifferent. It was under the influence of my previous employer, a high-volume radiology practice, and my new-found gastroenterologist that I began to look at the medical field as a friend and not a nemesis. I felt a rabid loyalty towards “my doctors”. Doctors were my healers and my friends. I felt sick in the pit of my stomach when called into jury duty one winter morning and found one of them on trial for neglectful malpractice. It took everything I had to sit quietly in the jury box and be questioned about my ability to be fair and impartial. I felt an overwhelming protectiveness for this man who had dedicated his life to the healing arts. This was someone I had sent my husband and son to for care, care that they received in the most compassionate and gentle manner, care that was thorough and complete. I had to admit my inability to be impartial. My early debate and mock trial experiences that had brought me such great joy stirred my spirit as I longed to join the defense team and flow arguments to defend the reputation of this gentleman. The enormity of what lay at stake soaked in as I wondered what would become of his practice and reputation, how had this affected his home when the stress of trial weighed on his mind at the dinner table with his wife and children. When asked if anyone knew the defendant I tentatively raised my hand and when the attorney asked my name the doctor turned in his chair to see if I was friend or foe. He recognized me as the friend who often held the elevator door for him in our mad dash to our respective office suites and offered an apologetic smile.

I know it is not politically correct or popular to admit that you have a passion to defend physicians and their profession. I have personally been on the receiving end of care that could have been classified as neglectful or incompetent and am far from naive to the fact that malpractice can and does happen. I believe fervently that we are losing talent and innovation in the operating and exam rooms across the country to the gaping and greedy mouth of malpractice litigation. It is my concern that the very dear cost of such legal action when frivolous makes wonderfully gifted doctors skittish and newcomers reluctant and jaded. We need only to look at the stark statistics of Obstetric and Family Practice shortages to know that the cost of malpractice is resulting in a lack of fresh ideas and innovative care. When those rare but inevitable occasions of malpractice occur I want to be the counselor that helps them navigate all the impending professional minefields to reign in damages professionally, financially, and help salvage the confidence that they had held and felt when newly minted with their MD, DO, and DDS degrees. I want to help protect doctors in one of their darkest hours as a feeble thank-you for the healing they so doggedly pursue for me.

I often wondered what would have happened if Sisyphus had simply refused to roll the rock and stepped aside as it rolled down the side of the mountain and chose to continue on his journey over the peak. I was blessed with the opportunity to leave my rock precipitously perched on top of my mountain and continue on my journey. I was given the blissful news of clinical remission one year ago today. I have been slowly trekking down the opposite side of the mountain and gaining speed but am still saddled with “the heavy load that sags” of my dream deferred. I would be lying if I didn’t admit that occasionally I glance at the mountain for a quiet assurance that my Crohn’s rock has stayed where I parked it; the painful futility of my past struggle still fresh in my mind. Graduate school no longer looks insurmountable and my experience of touring the law school and peering through the windows of the courtroom being remodeled triggered a Pavlovian response as memories of mock trial competitions and South Kansas City Youth Court flooded my mind. The memories produced a visceral response as my heart began to race and my stomach experienced a thrilling flop. I knew with certainty that now was the time to bid my farewell to Sisyphus, lay my heavy dream-deferred load down and race to my future.

:D

I appreciate the support, love and prayers that so many of you have provided me and the frienddships I have garnered during my journey. I have had the privilege of helping some of you during your own travels and have even met a a few in person. I'll continue to check in every now and again and wish the best for all of you!

God Bless-FearlessPhoenix

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12 years 11 months ago #69400 by fearlessphoenix
This is the letter sent out regarding the situation discussed in the hospital ethics thread:

ENJOY!

Dr. Y
Director of Medical Affairs
Kansas City X Hospital

Re: MRN# LXXX10XX049

February 19, 2007

Dear Dr. Y:

Good day! On the advice of Ms. K I have given this letter much thought and consideration and it has undergone numerous edits for both brevity and editorial commenting. I have prayerfully channeled my disappointment into what I hope is a constructive, objective and not destructive spirit. I appreciate the time given to my concerns and would welcome the opportunity to speak with someone in a position of leadership to help ensure that the level of compromised care that I received at Kansas City X Hospital on Monday, January 15, 2007 does not happen to another patient with grimmer results.

I am a thirty year-old female with a twelve year, four month history of Crohn’s Disease. In the last decade I have taken tremendous effort to not only understand my disease and educate myself anatomically, pharmacologically but even at a micro-biological level. No system is immune to careful scrutiny. I examine my gut, medications, treatment choices, doctors’ advice, and policies. It has been a challenge to find a medical team that remains unthreatened by my scrutiny and encourages an open, honest, educated discourse about my prognosis and treatment options but I have been very blessed to assemble one nonetheless. My primary medical team is as follows: Dr. K, DO, Primary Care Provider, Dr. A, MD, Gastrointestinal specialist (MAGIC-group), Dr. O, MD, Colorectal Surgeon, and Dr. M, MD, Hematologist/Oncologist. All of these doctors have earned my trust, compliance, and loyalty through patient, compassionate, intelligent, and persistent care over a number of years. They work well together and have what appears to be excellent communication with each other.

Tuesday, January 9, 2007 I presented to the Kansas City Hospital (KCH) ER in the late afternoon hoping to be re-hydrated. Having an over-active bowel, I knew that I could not maintain hydration and needed help with IV fluids and was experiencing some left lower quadrant (LLQ) pain. The ER staff ordered IV fluids and lab work. The lab work showed I had elevated liver enzymes and compromised renal function. The ER doctors made an admission decision late that night. The ER staff asked who normally handles my admissions and I told them that the MAGIC group handled my admissions. The ER doctor said, “No, that’s your specialist, who handles your admissions?” I have not been admitted since January of 2005 to SLHP or any other hospital and I was not aware that admissions were now done through the hospitalist or surgical services. I was confused and exhausted at 2 am on January 10, 2007 and did not think anything of the fact that Dr. CH was my admitting physician. I would comply with the process and talk to my GI group the next day when they rounded. As the week went on I had a CT scan, ileoscopy, and SBFT all ordered by another gastrointestinal group sharing GI service with MAGIC. None of these tests proved conclusive about the LLQ pain that I was experiencing and my PT/INR had become elevated. I asked numerous times if the stenosis in the distal ileum found during the ileoscopy was due to scar tissue or an inflammatory process. This information was critical to me when making a decision about continuing conservative medical therapy or surgical intervention. No doctor that week could or would tell me the answer or let me read the ileoscopy report for myself. Dr. J was the hospitalist rounding the morning of Saturday, January 13, 2007. Dr. J informed me that he was preparing to discharge me. I protested and said that I still had unanswered questions and wanted to postpone discharge until a member of MAGIC or Dr. C or his partner Dr. O could evaluate me and answer my questions. I did not feel ready for discharge and was concerned about my unmanaged PT/INR levels. I was fortunate that Dr. C rounded through my room that same Saturday and I was able to ask him several questions but still did not receive an answer about my ileoscopy report. Dr. C agreed that there was no harm in my staying until Monday morning (January 15, 2007) until someone from the MAGIC group could talk with me. My husband and I made a trip to the cafeteria for lunch and when we returned a half hour later Dr. J was again in my room to discuss discharge. He said that he had spoken with Dr. C while we were at lunch and that he (Dr. J) was concerned that my staying was a waste of resources and he was concerned about hospital reimbursement and a potentially large hospital bill I might receive. My husband and myself were very angry because we felt as if Dr. J had pursued his discharge agenda, circumventing our decision with Dr. C, despite my concerns of an unmanaged PT/INR and unresolved LLQ pain. Dr. J ignored the fact that Dr. C told us that there was no harm in my staying. We were very angry and told him that I have a very good attorney retained to help with reimbursement issues besides the fact that I not only have private primary insurance but also excellent secondary insurance. His attitude was very smug and arrogant; he made the comment “I know what this is all about” and when I forced the question “What do you think this is about?” he backed down and refused to answer. He said that he would not force a discharge and I asked him to leave my room. I was very upset by the whole situation. Shortly after that clumsy exchange, a Patient Advocate visited my room and wanted to discuss how I felt about my conversation with Dr. J. I asked the patient advocate why my admission was under the hospitalist system. The advocate explained to me that all ER admissions are through either the hospitalist or surgical services to maximize insurance reimbursement. I then asked who initiated this policy. The advocate stated hospital administration made those decisions. Sunday, January 14, 2007 a “case manager” for 7E brought a paper for me to sign that stated I was aware that my stay at that point might not be reimbursed by the insurance and I would be responsible for charges incurred. I refused to sign it and told her that I had already signed this paperwork upon admission and that I was confident in their ability to exact authorization from my insurance. If there were any future insurance problems let me know and I would contact my attorney for the purpose of reimbursement help.

Monday, January 15, 2007, Dr. H with MAGIC rounded very early in the morning. I was able to discuss several questions with him. Dr. H was able to find the answer that I had about my ileoscopy report and he was confident under present circumstances that I could be followed outpatient for my remaining concerns. During that bedside discussion, he helped me wade through many different choices and called for an official surgical consult. After Dr. H left and confident that discharge was the correct decision, I began to shower and dress. While in the shower I began to bleed from my stoma dark tarry blood with several large clotted pieces, it concerned me. I called for my nurse and both she and the medical student on surgical rotation came to the shower to see this. When the surgical team rounded I told them what had happened in the shower, pointed out my elevated PT/INR and the fact that the last time I had this type of bleed (late October or early November of 2002 – you can reference my previous records on file at KCH) that it led to a larger more massive bleed. The surgical service told me that it was superficial and probably originating from my known fistulous tract, since it stopped, I was best-followed outpatient. I pointed out to them that if I was bleeding from the peri-stomal fistulous tract that the blood would be bright red, not dark and certainly not clotted. I told them that the blood came from the stoma not the visible peri-stomal fistula at the 9’o clock position. I said that under these present circumstances I would be re-admitted for a GI bleed within 24-48 hours. They nodded their heads silently, walked out and signed off for discharge. Later that day another Patient Advocate came to my room to discuss the discharge planned for that afternoon and I told her that I was frightened and did not feel ready since the bleed happened. I shared my concern that the hospitalist service was forcing the hands of my specialists and that I was not confident that Dr. H was told about my bleeding since he had rounded that morning. I told her that if Dr. H or anyone in his group knew about the bleed that they would lobby for further observation. She informed me that hospitalists only move for discharge with the consent of all services assigned to a patient’s case. Noticeably, she never addressed whether or not anyone from MAGIC was informed about that morning’s bleed. The hospitalist (I forget her name but she was young and blonde – I am sure you will find her signature in my chart) arrived to review my discharge orders. I asked her “What do I do when I bleed again?” She told me that since I was holding my Warfarin dose for the evening that I would not be bleeding anymore. I explained to this hospitalist what I told surgical service earlier, that under near identical circumstances the small bleed was a foreshadowing of a more massive bleed to come. I asked her again “What do I do when I begin to bleed?” She told me that if it became “uncomfortable” to contact my GI doctor on call. Resigned that I had said everything I could I figured it was best if I left. I went home on Monday, January 15, 2007 at about 4:30 or 5:00pm that afternoon.

At home, I enjoyed the evening with my family and prepared a bland low-residue meal for us, held my Warfarin as instructed and went to bed. The next morning I called my PCP Dr. K about monitoring my PT/INR levels upon discharge and his nurse called to tell me to report to the outpatient lab at the office and orders would be waiting. I took my morning medication, ate breakfast, and noticed that the LLQ pain had returned. I emptied my ostomy bag before leaving home and noticed again, there were a few black tarry clots in the toilet. I hoped that it would stop just as it had the previous morning in my hospital room. I drove to the PCP’s office (at South campus of KCH) and while walking to the front door was incredibly short of breath with significant weakness in my legs and reasoned that nearly a week of bed-rest made me “soft”. While in the elevator, I became very dizzy and when I got to the fourth floor lab, I asked for a chair to complete my paperwork while sitting and felt increasingly weak. My blood was drawn and when I stood up from the chair I felt as if my legs would give out. I steadied myself and went to the restroom because I could feel that my ostomy bag was very full. I used the toilet where I emptied a bag full of the same clotted, black tarry blood and began to cry. I cleaned myself up, washed my face, and quit crying because I did not want my son to see me scared and upset. I returned to the lab asked someone to take my blood pressure or to get my PCP to look at me. The MA for my PCP came, attempted to get a BP on me, and was unsuccessful. Soon my PCP appeared, smiled, and then looked crestfallen and concerned. This made me feel like crying again because he has never looked at me with that expression. Dr. K knows and respects the fact that I do not want to be patronized or coddled. He and I had a short discussion about whether to send me downstairs to the ER at the KCH South campus or to call for transport to the Midtown campus where my team is and I knew that MAGIC was on GI rotation for that week and where we knew my colorectal surgeons were. We decided to transport back to the midtown campus and waited for the ambulance. I arrived at the KCH ER about 3:00 pm January 16, 2007 and saw one of the surgical residents. I made it VERY clear that I would refuse admission a second time under the hospitalist service. The surgical resident remembered me and said tongue-in-cheek “You said this would happen yesterday” and I quipped back at him “Yes, I told you exactly what would happen but I was two hours off, it was 22 hours not 24, my mistake”. Trust me; I would have loved to be completely wrong in that circumstance. I was alarmed to find that while I had a hemoglobin count of 14 (please verify this in my records) when discharged I was readmitted 22 hours later with a hemoglobin of 6.5. It required several units of whole blood product, FFP and a few days in MICU to raise my hemoglobin. The rest of my stay and surgery was uneventful.

I have since talked with Dr. A about this policy and he explained further that his group agreed to the admission policies under contract and that it is has helped facilitate a better quality of life for him and his partners. I am supportive and empathetic; I know that doctors have ridiculous demands placed on them. It became clear while speaking with Dr. A that hospitalist systems are used around the country quite successfully and can sometimes even streamline care making it more effective and efficient. My complaint originated as one of policy. I want it clarified that my complaint is one of poor communication and care on the part of the hospitalists at SLHP and the lack of care and communication resulted in a premature and inappropriate discharge that put me and my son (had I attempted to drive my car and passed out while driving) in harms way. There were very simple and elementary things that should have grabbed someone’s attention. I am sure any MS3 or MS4 would have been taught that you do not send a patient home with an elevated PT/INR and an established history of severe GI bleeds. It is also very simple to know that black clotted and tarry looking blood in a bowel movement indicates a bleed that is further “up” in the GI tract rather than some superficial irritation at a fistulous site. It should not require a patient with an undergraduate anatomy and biology education to state the obvious. It should never be ignored! I shudder to think of what happens to less educated or outspoken patients.

This has affected my family profoundly. My son is constantly (sometimes hourly) asking for reassurance about how I feel. My husband has grown increasingly protective of me and suspicious of physicians in general. Only time and patience will heal those frailties. In the meantime, I am left with the responsibility of defending my physicians to my husband and son and helping them rebuild trust. I want my complaint reviewed thoroughly and if I have reported any inaccuracies in this letter please let me know so that I can work on rebuilding my own faith in the hospitalist system at KCH. Their ability to communicate with specialists even under circumstances that do not support their treatment agendas needs careful review. I welcome the opportunity to visit in person with someone to help determine how to improve this communication. I would encourage Dr. J and the other KCH hospitalists to receive further training on listening to patients empathetically and carefully. Patients often know their bodies, limits, and realities of chronic disease better than they might. The importance of the recommendations of specialists involved in a case and reporting any new developments cannot be overstated. It is imperative in the current climate to ensure effective and efficient use of what are becoming increasingly scarce medical resources; it should never be done at the expense of prudent patient care. I welcome the opportunity to be a patient representative for any policy or ethics committees at KCH. I have worked with the Center For Practical Bioethics here in Kansas City, met with Sister F. PhD, taken numerous logic, philosophy, and ethics classes and workshops and have over 6 years of clinical experience and received mediation and arbitration certification from the Kansas City Human Relations Department. I am not interested in filing a malpractice suit despite having received advice to the contrary. I think that a malpractice suit would exact some very temporary justice or satisfaction but that opening a dialog serves to improve systems and communication for the long term and would benefit not just my care but also other patients’ care. I am committing my future career to defending doctors in an increasingly litigious society and do not want any part in contributing to it.

I have tried without success to meet with Mr. H, President, and CEO. I made a call February 9, 2007 at 3:27 pm naively requesting 20-30 minutes of his time. I wanted to discuss some concerns I have about my community hospital. J.J., VP of Cardiovascular Products, returned my call at 3:47 pm that same day. I explained to Ms. J that I wanted to meet with Mr. H. She informed me that Mr. H does not meet with patients. I asked her if he was out of town or if this was an arbitrary policy regardless of circumstance. She told me that he was not out of town but was sure I could understand that if Mr. H met with every patient who had a complaint or concern that it would “consume his day”. I was incredulous; that is not a confidence building statement, is there such a volume of unhappy patients that Mr. H could not even afford to give me 20-30 minutes of his day? I told her that I wanted to discuss my concerns quietly with someone who was in a position to effect change. I asked her if I spent my time and energy jumping through all the necessary hoops and was still not satisfied would Mr. H grant me an audience. She told me “not likely” and she has never known that to happen. It saddens me that a President and CEO of a community hospital is so far removed from patient care and concern that a person would have endless layers of bureaucracy to wade through without any chance of being heard by him. Against my better judgment, I have written this letter. I am adamant that I want to be a real human face and voice not some anonymous MRN with a Times New Roman Font-Size 12, seven paged letter.

I want to close and let you know what is right with the KCH system. There are gifted, talented, compassionate nurses throughout the midtown campus and especially in my experience on 7E. A.K. is an angel in a lab coat often at my bedside helping me problem-solve a difficult ostomy seal well after her normal working hours. She never fails to exude calm, confidence, gentleness, patience, and good humor. I have grown to love her immensely and was honored that she celebrated my wedding day with me and my family a few years back. I am confident that I can call her with any ostomy problem and she might be able to help me over the phone. On those rare occasions when I need some handholding and an objective eye, she never hesitates to see me outpatient. A.K. is everything that is good and right at KCH. When Nurse K retires, it will be a significant loss to the KCH system and Kansas City ostomates. JD on 7E has proven to be an exceptional nurse and I am pleased when he is teaching a student nurse and I encourage him to let students practice any new skill set on me. He is compassionate and does not coddle me. JD helps me to differentiate between pains managed medically, or when just a good walk up and down the halls will help. JD is cheerful and professional and is quick to hug and encourage. Those are skills and attitudes that no amount of salary can buy. I also had the pleasure of receiving excellent care from C, J, and C on 7E and they are beacons of hope in what could prove to be a discouraging time. The hospital is clean, well maintained and managed. I could not say those things about my experience in another larger Kansas City hospital system.

You have many excellent physicians serving at your hospital, The MAGIC group is a stellar example of when medicine surpasses a diagnostic, evidence-based science and becomes an intuitive fine art. Never in twelve years of my disease process have I found a group so consistent with their hope, good humor, intelligence, and skill. I have had other good GI doctors in the past, but was not confident with the competence of some of their partners. MAGIC far exceeds those expectations and it is a good day when any of them darken the doorway of my room or calls on my bedside phone. Dr. O is one of those fine, gifted surgeons who not only posses a persevering spirit, intelligence, and skill but also an excellent bedside manner. Dr. O and her partner, Dr. C have problem solved difficult situations and complications and helped me prevail.

I choose KCH because it is a teaching institution and having my case reviewed and taught to nursing students, medical students, interns, and residents gives some purpose to what might be an otherwise hopeless chronic disease process. I strongly believe in teaching hospitals and support that mission. It is important that physicians no matter their status as an intern delegated to scut work or a well-experienced attending maintain a teachable spirit. I appreciate the time and energy you have spent reviewing my complaint. I am anxious to speak with someone further about improving communication, avoiding pre-mature discharges in the future and what has changed or been improved after this disappointing experience.

Sincerely,


KJR

CC:
Dr. A - MAGIC
Dr. O - Colo-Rectal Surgeon
Dr. K - PCP
Mr. H, President and CEO, KCH
Ms K, Patient Advocacy Director - KCH

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12 years 2 months ago #69401 by fearlessphoenix
So the other shoe has dropped. I often wondered if one auto-immune disorder led to others and I'm thinking that they do . . . I am the proud owner of a Lupus (SLE) diagnosis. I have been unbelievably fatigued and felt as if every joint and muscle in my body is under attack and of course the customary "butterfly" rash after kidlet's football games in the sun. My lab work was textbook classic for inflammation and all of the other tests they ran (too numerous to remember I get copies of all of it today). SLE is kicking my butt and despite scoring a 164 on my latest LSAT I don't know if any more schooling is in my future when I can barely get myself out of bed everyday because of pain and fatigue. I'm not a quitter but this has me yelling "uncle". Sorry such a downer . . . .

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