November 2019
I am going into surgery in two days to remove an apron of skin and fat than hangs down toward my knees. 95 pounds ago was 10 years in the past. 5 years ago I had one huge traumatic surgery that saved my life by fixing my heart with two new valves and a coronary artery bypass. It also showed me that lots of things could go wrong in surgeries. Before I left UCLA for the last time, I also had a MRSA infection that almost forced them to amputate my leg. I had been exposed to tuberculosis and had to undergo weeks of treatment to monitor my status.
My hospitalization was one horrific experience followed by another and when I left UCLA I took with me a parting gift of PTSD. I wrote a journal then of some 30 pages to make sense out of what happened and to dig my way out of the depression. (You can read it in my archives. “Even Good Hospitals are dangerous”). My many conclusions included that I would never voluntarily allow anyone to cut me open again. Yet, here I am. Here is my new journal. The process of writing it has again helped me. I hope it may help someone else. We will see what happens.
In preparation for this surgery I have had MRIs, a CAT scan, nose swabs, blood tests, and x-rays. My cardiologist had to sign off that my heart could tolerate the surgery. He referred me to the Beverly Hills plastic surgeon that did the operation. My cardiologist works as a member of the heart transplant team at Cedars-Sinai Medical Center and they use this plastic surgeon for their patients who require reconstructive surgery. This doctor is not your typical Beverly Hills plastic surgeon. I know he is careful and thorough because he will do the surgery at Cedars-Sinai and not in one of the many privately owned surgical suites from which clients often leave within a day to recuperate in a luxury medical facility in Malibu. Because of my past MRSA infection, we agreed I would consult an infectious disease doctor and have my neurologist sign off as well on the surgery based on his findings in the last MRI tracking the stroke I had on the heart-lung machine during my heart surgery.
My past has made me who I am today - MRN 8255000. That is my Medical Record Number from UCLA. I am that person. I am a professional patient. So, I pretty much coordinated and organized the scheduling of the doctor consults and all the testing that they ordered. The surgeon’s assistant was going to work on the actual surgery date and get the doctors to all sign off on all the requirements before the hospital would finalize my admission. At the last minute it seemed to fall apart so a final medical history, chest x-ray and sign off from my cardiologist was pulled together as I was being prepped for surgery.
I asked to speak with the anesthesiologist as soon as they were assigned. One called on the Friday before my Monday surgery. He said he was not the assigned anesthesiologist so I wasn’t sure why he called. Nevertheless, it is rare to get them to speak to you at all except minutes before the operation where they come in, introduce themselves as “Dr. So-and-So” who will be administering to you just enough poison that you loose consciousness but not so much that you die. Then they leave. So, I decided to have a chat with this guy anyway. I explained briefly my medical history and what I feared could go wrong. Surprisingly, he really listened and did his best to answer my questions. I told him my real problem is that there are no do-overs in surgery and that there are worse things than dying. I mentioned that I had a DNR on file and he told me that they do not apply in surgery. He was sympathetic and I liked him. Nonetheless, I asked him my deal-breaker question that I ask all my doctors. I asked him if he would care if I lived or died. He didn’t answer. He is not the only one who hasn't answered that question. I’ve fired doctors over their answer or lack thereof. When I asked again, he said he hadn’t heard the question the first time. Perhaps.
On Saturday a woman called and said that she was going to be the anesthesiologist assigned on Monday to my operation. I missed her call and will wait for her to call back. She didn’t leave a number. The anxiety is really starting to build inside of me and I start making lists of things to be sure to take with me. I start looking madly for my pink teddy bear that my granddaughter gave me when I was having my heart surgery at UCLA. Pinky Pink goes with me to all my scary hospital stays.
Monday, Nov. 4th
We are sitting in the waiting area for surgery at CSMC 5:30 a.m. My son, his wife and our grandchildren called last night to wish me well. The grandkids were full of "LOUD" and acting silly but were a joy to talk with. My son called earlier in the day to speak with me alone. He seemed very concerned. He is worried that I am overreacting. But the whole family on both sides think I'm always over reacting when my health is involved. Many are convinced I'm crazy and a couple thought for a while I was suicidal. I'm pretty sure this has been their shared common belief since my heart surgery in 2014.
I'm prepped for surgery, my anesthesiologist visits with me a while. She is a very lovely, very young black woman who is warm and charming and tells me in every way a person could without saying the words that she will care if I live or die.
Pinky Pink and I have on our matching surgery caps and its off to the operating room. The surgery goes well. I emerge with 150 stitches, drain tubes in my abdomen and 5 pounds or so of skin and fat removed from my belly. I am moved to 8 South. It seems that they might be able to send me home in a day or two. In fact, they are desperate for me to sign some document that says the first 48 hours I am not actually admitted to the hospital but in some kind of medical limbo “for observation only”. I read it three times. They come into my room for the last time insisting I sign sometime after midnight. I write “refused” on the line for signature. Make a note that I read the document but do not understand. Then I signed my own statement. That got them off my back.
The plan my surgeon and cardiologist had was that I must be stable, that I'm restarted on my blood thinners for my heart valve and that the pro-time count for my blood viscosity is in the therapeutic range. The surgeon and cardiologist discuss how to do that, calculate the dosage of warfarin and Lova-nox that should be used for my body weight then they cut that in half. Within a day I'm loosing so much blood that I fear I'm bleeding out. All blood thinners are immediately stopped.
I’m coming up on the magic “48 hour observation”. I still didn’Once the blood thinners were stopped I begin to stabilize. The bleeding is slowing and the wounds seem to be healing, there is no infection but my new going home date is a bit uncertain. In the following days, my hemoglobin does not rise and my blood pressure is very low. I'm feeling better and walking the halls with my husband who hasn't really left my side day or night. I'm even beginning to eat something and a change in my meds may have helped that and allowed my nausea to fade. However, when it came time to be discharged, I really didn’t feel like I was ready to go home. My nurses even commented on this and helped me explain to the doctor that I just didn’t feel ready. I really wanted to go home, my husband really wanted to go home. But, something just didn’t feel right. So, my discharge got postponed.
My three doctors are all working as a team. The hospitalist, the cardiologist and the surgeon each has a different role. They don't always agree but they do talk to each other and when they act they seem to have reached a consensus. Things continue to go wrong in my recovery so they talk a lot. The next few days are ones of only incremental improvement. Every metric is improving, (blood pressure, bleeding, etc.) except my hemoglobin is perilously low. They consider a transfusion to boost blood volume and red blood cell count. The cardiologist is the most conservative in using transfusions based on his experience on the heart transplant team. He finally agrees to a transfusion. There are failed attempts in the last few days to successfully put in new IVs. The first attempt today is a failure that was done by my attending nurse. The second attempt was done by specialized nurses with a knack for success based on experience. Sometimes they are called "IV whisperers". That attempt failed. My husband and I talked about a plan and made a decision. I already had both arms badly bruised. I recognized what was happening. A very similar thing had happened in UCLA.
I was emotionally very fragile. But, I knew what I had to do. No matter what I suggested to nursing about putting the next IV in a location other than my arms, they remained firm that hospital policy forbid it. I spoke privately with the nurse manager and explained that my decision was that I would not allow endless tries and failures. I needed the transfusion so I needed a real solution. If IVs in other limbs were out of the question, what about a PICC line?
I really wasn't advocating for a specific option, just firm that I needed a successful SOLUTION. I also told the nurse manager that I knew neither he nor anyone else in nursing had the authority to override the policy. I needed my doctors here to make a MEDICAL decision on a successful solution and then override the policy. I assured him that he was not my enemy, but hoped he would help me advocate for a successful plan. He agreed.
I made the decision that only one more attempt would be allowed to place an IV in my arm, then, I would refuse all other attempts. California Patients Rights gives me the right to refuse any medical procedure. I knew their choice was to discharge me to a hospital that wouldn't require an open line (IV) at all times or they could get my doctors in here and make it their problem.
The last attempt was done by a very specialized IV nurse who came with echo/sonar equipment to locate a suitable vein. I repeated that there would be only one attempt. She did her best. The vein blew immediately and my arm was suddenly dark with a huge purple blood stain beneath the skin. I refused the IV nurses request to try again. She said she just wanted to look. I knew this was "incrementalism" and said I had made a decision that there would be no further attempts at IV placement. I was mentally and emotionally exhausted as I watched the purple stain grow and grow. I had a full on melt down and angrily refused the IV nurse to do anything more. The nurse manager knew what was up and my doctors were assembled.
Before my doctors got to my room I thought through how I wanted to do this because I was prepared for being lectured or even bullied in the first round. I decided I couldn't fight from a position of strength and determination if they were standing around a woman laying seemingly broken in her hospital bed. I asked my husband to help me sit in the chair and then sat up as straight as I could.
My doctors spoke with the nurse manager who said he believed the best choice was a PICC line. The other options would not address nursing's need to have a portal that they could infuse blood and medication and at the same time draw blood for tests. The doctors discussed their options and told me that they believed the best solution was for them to order a PICC line. The following days was slow recovery. There would be no discharge until the hemoglobin was at least over 7. My husband was with me through all of this. He listened and helped me implement my plan for a successful transfusion. He asked questions when I couldn't and just because he needed to know for himself what my condition really was. He slept too many nights in a recliner chair to just stay with me so I wouldn't be alone, fighting to get better.
After a while I was able to see beyond myself and see the toll all this was taking on him. He needed air. He needed a break. He needed time away from all the drama. I began sending him on little errands to get him out of the hospital and into the real world where the sun was shining. It was damn near a wild goose
chase sometimes. I asked for crazy things that would take a while to find. He finally agreed to go home and sleep in our bed. He slept in a chair at least 4 or 5 nights. How do you measure and be grateful enough for that kind of love?
On the nights I was alone, I roamed the halls unable to sleep. I often waited outside the galley for it to open at 6 am to get some hot tea. One morning while I was waiting I met a familiar face. It was Guadalupe. She said that I looked like a former supervisor she had many years ago. I remembered her instantly and told her that I looked like that supervisor because I was that supervisor. It was a warm and emotional moment. This woman has been here since at least 1993 when I hired in at Cedars-Sinai. That means she is still doing the exact same job for at least 26 years. She has found her joy in serving hot food to patients and has made a life for herself. I am sad she hasn't been promoted. This is when I saw the first smile on her face.
From that day forward Guadalupe came to check on me to see if I wanted hot tea or some juice but mostly to have a chance to visit. She caught me up on all the gossip. I already knew the food was far below the quality of what we served years ago. The new management was making stupid decisions to save a couple bucks. When you are on a clear liquid diet and only get jello, apple or cranberry juice, tea, clear broth and water, it matters that the cranberry juice is Ocean Spray. The galley was very stingy with condiments and I was told stewards often have to sign out for extra ketchup to bring to a patient. There was little attention to plating and presentation which matters when the food is all some version of mass produced food by Con Agra. Cedars-Sinai has a glatt kosher kitchen and that is the only place actual meals are prepared on site. So, I made myself a kosher patient and ate better food. Still, it was quite a letdown. The matzo ball soup used to be spectacular. Not today.
All the old guard from Food and Nutrition is gone and there is new management at all levels. From the director of food service to all the Registered dietitians, Diet Technicians, Registered and their managers were all offered a retirement package to leave. Guadalupe said almost all took it. Cedars-Sinai has a problem with housekeeping as well. They are not contract workers anymore but work for the hospital. I've seen this problem before in food service. Housekeeping now has a massive money-draining turnover rate. This is nothing but bad policy and management. Housekeeping workers are treated very badly. Several told me that had to work about a year to earn getting every other week end off and sometimes even two days in a row. Pay is low. They would get treated better at Starbucks. But what made me angry was to hear supervisors correcting and disciplining workers in public hallways. It really was shameful and it just humiliates employees.
Nursing seems to have much better management This hospitalization had the best nursing care I have ever had. Nursing usually has more "juice" than other departments to hold the line against budget cuts and such. But on 8 South the nurse managers made all the difference in raising up the level of patient care. Scott was one such manager. He is amazing. He manages a team of nurses who are well trained and vested in patient care. It was shocking the number of newly minted RNs and so few of the "I've seen it all before" veteran nurses. Nevertheless, my care was excellent and all of them were vested in providing good patient care. For me, I know that the more my nurses and my doctors view me as a person and not just a generic patient or even worse as a pile-of-symptoms, or the absolute worse as a "revenue stream" the better care I receive. Without this, it is impossible to create a team of people trying to get me well. If it works well, I am a part of that team relaying accurate information on how I feel, pain, anxiety, etc.
No one, ever, ever, should enter a hospital without a wing man. You will need someone who will advocate for you when you can't and act as a partner in the team and just someone with whom you can talk over what is happening. It is best if this person has medical power of attorney if
this is a serious hospitalization. Sometimes, even in routine hospital admissions patients need a back up person who will support them if it comes down to really pushing back on how things are being managed in your care. My husband is my wing man. He is damn good at it after all the hospitals I've been in. I would say he is as much a professional wing man as I am a professional patient. When it came to dealing with the failed transfusions and a new solution, my wingman and I enrolled my nurses and my doctors into a damn good patient care team.
Like most hospitals Cedars-Sinai has "hospitalists" on staff who work directly for the hospital as the primary doctor for all patients while they are hospitalized. Your surgeon, your primary care, or other private doctor are all contractors. All this is for insurance purposes, to push the cost of doing business down the ladder to the actual provider (think UBER) so it is the doctor's malpractice insurance premiums that rise and the hospital limits the legal exposure to itself. The hospitalist, whether knowingly or not acts as a part of the management team making decisions about discharges, whether to do more testing or monitor the patient's improvement for another day.
A problem arises with this business model when your hospitalist counters your surgeon or cardiologist's orders. This happened to me the first day. The hospitalist was new to me and I had to size up pretty quickly who was the captain of the ship in terms of managing my overall care and be sure we had a team that was all pulling in the same direction. My surgeon was very attentive, especially for a surgeon. My experience is that once they walk out of the surgical suite, somebody else closes, puts away the hardware, mops up the blood and my fate is completely in the hands of nursing. They do usually pop in to see me once a day. This surgeon was and is an exception for any kind of doctor. My cardiologist has been my doctor for 4 years or so. When I lost my primary care several months back he took over that role until I could hire a new one.
I knew very little about the hospitalist, but, two of my doctors already knew each other and they must have had some interaction with this hospitalist before. The better news was that the surgeon and cardiologist had either spent time training or working at the Mayo Clinic which is known for its Patient Centered Care. Mayo Clinic's founders stated, "The best interest of the patient is the only interest to be considered." Quite a different business model. I am sure the people who made up this patient centered team made all the difference. I have never felt more secure that decisions were being made based on my care and well being. Unfortunately, by the time I left UCLA with my heart surgery, both me and my sister (nurse of 35 years) were convinced I was safer in her care living in her basement. I can't say how important this team approach is. Each of these three doctors brought unique training and experience. Any issue relating to my heart was always deferred for first opinion to my cardiologist. Stressed, blown veins are something the heart transplant team sees regularly from toxic immunosuppressants and just plain abuse.The surgical issues especially healing, signs of infection and accounting for blood loss were first run by the surgeon. I am now known as a "hard stick" per my nurse manager and it is likely that every hospital admission forward will often require a PICC line. The hospitalist is an internist and I observed only real concern for my care and recovery as his patient and he knows the rules of engagement in this hospital when extraordinary procedures might need to be prescribed.
I have a long and complicated medical history and I am a high risk, high maintenance patient. On my first visit to my plastic surgeon I brought a copy of my UCLA journal and warned him I was high maintenance just to give him a chance to back out if he wanted. I think that he miss understood my point. He smiled and said something like, "This is Beverly Hills. I have patients who are actual divas. Trust me, you are no where near high maintenance". My cardiologist has said pretty much the same thing. Maybe I'm just high risk.
Actually, as a patient I usually feel like that old Saturday Night Live character, Rosanne Rosanna-Danna. She would always say, "It's always something, if it's not one thing it's another. Gilda Radner died of ovarian cancer at Cedars Sinai and there is now a wing on 3 South donated by her husband Gene Wilder. He did a remarkable thing after Gilda was finally correctly diagnosed. They were in the middle of a divorce and when Gene was told about Gilda's terminal diagnosis he ended the law suit and moved back in to their home to care for her until she died.
Because I have been a manager for most of my adult life, often in acute care hospitals and way too many times a patient in hospitals, I always write a journal hoping it might be of some use to staff or managers and mostly other patients. I also always write commendations for the exceptional staff. Managers always hear about the lousy employees, rarely about the really good ones. Good managers want to know this so they can see what patients value, what skills employees have that need to be developed, how to train all employees better in the right procedures and write better policies. Good managers use these to promote and mentor and grow the profession and make even their bosses look like rock stars.
Here are some of the “Standing Ovations" I wrote for people who cared for me, and, who cared about me.
Standing Ovation for both Adriana and Diana
Diana and Adriana nursed me through the worst day of my hospitalization. After several failed attempts at an I.V. placement, I evoked my patients' rights and said the next attempt would be the last. My nurses listened to my wishes, grasped my despair and helped me communicate my decision to the IV nurse and others. Patient centered care is dying in American medicine. Adriana and Diane were vested in my care and my rights and followed hospital policy to the letter. Mature nursing for such young women. They made me believe I could get better here. Thank them. Please. These are nurses of great value and they should be mentored and helped to grow.
Standing Ovation for Edwin
Edwin came late at night to place a PICC line into the arm of a woman who was both medically challenged and emotionally broken. His skills are impressive, his humanity saved me. I needed a transfusion and three tries at I.V.s had already shot the veins in my arms. Edwin's availability at this late hour may have saved my life. He placed the PICC line at bed side working alone. It is a pilot project. Somewhere, someone is doing a cost-benefit review on his position. Please consider the value of my life in your cost effectiveness and thank Edwin. Please. He is invaluable. Whatever he costs he is worth it. Oh, and give him a raise. Please.
Standing Ovation for Enrique
Enrique's actual daily performance, work and skill level is far above his pay grade. He is well accomplished in his patient care skills, but shines as a human being who can find the source of the anxiety or loneliness in a scary hospital and give the emotional support and patient listening that makes people just pain fell better. He is a gem. He is capable of great things.
Standing Ovation for Junji
Junji is the perfect night nurse. When I couldn't sleep at 2 a.m. we made a deal that I would walk to the surgical waiting area between 8N and 8S. I could write in my journal and if I didn't come back soon, he would look for me. He did as much as possible to not wake me at night understanding the value of restorative sleep in healing. Mostly, he listened to my angst at 3 a.m. He just listened. Amazing. These are qualities in a nurse that have great value. So does Junji. Please thank him for me.
Standing Ovation for Scott
As a former employee in Food and Nutrition, clinical and management at CSMC and as a current patient, my view is through a unique peephole. Scott is a better manager than I ever was. He is vested in providing the best nursing care to his patients and has built a team of well-trained and passionate professionals that delivers every time. His most important skill are listing and his commitment to excellence in patient care. He is young and has great value. Please thank him for me.
WHAT I KNOW NOW THAT I DIDN'T KNOW BEFORE
- • I should have kept my promise to myself and never allowed anyone to ever cut me open again. There had to be another solution.
- I know more deeply and fully that hospitals save your life, extend your life, make your life better except when they don't.
- • Hospitals and doctors and medicine in America is a business. From insurance companies and their business models, to public policy (like healthcare being a right in developed countries, except in the USA), to medical training and what is taught or not (think no training for abortion any more in 55% of medical schools), to individual choices made by doctors as to specialty. Primary care doctors are paid the least.
- • I know that my best patient care is often at odds with insurance companies, hospitals and even my doctors. All the incentives are in the surgical suites and not at bedside. By hiring hospitalists, doctors really don't have to be responsible for in-hospital care at all if they choose.
- •I know there is great pressure on patients to get caught up in the "Dr. Kildare" American love story with the special place doctors hold in society. I'm old. I remember Dr. Kildare. But, even now we assume that if you're sick and see your doctor or enter a hospital they will just make you better. Doctors are revered still as special people, kind, altruistic, dedicated to the outcomes of the care they give as effective. They swear to "do no harm".
- • I know more deeply than ever that I am responsible for my own health and health care. I ask questions. I wait for answers. I get second opinions. I have watched every single angioplasty for all five of my heart attacks on the monitor as the doctor threaded the miniaturized instruments through my cardiac arteries.
- • I know that the vast majority of people who choose health care as a profession do so for the right reasons. I know that they all make the best choices they can to be sure they are giving the best care they can. Often, our mutual enemy is policy and procedure. I know that good people when properly motivated will make the right choices. American medicine is still populated by people who want to be there. I have seen the stuff of which even young nurses are capable and on more than a few occasions great things accomplished by thoughtful, well trained doctors and others who really are special people.