This is part 7 of my diary. I thought long and hard about whether or not to name the hospital. I decided to say publicly that I was in UCLA because it is a good hospital. And, if this is one of the really good ones, imagine what lurks in the not-so-good ones.
I have been asked many times why I haven't sued. Yes, there were nurses and doctors and phlebotomists and therapists and staff that were quite uncaring. But I believed, almost instinctively from the beginning, that the problem was fundamentally not malpractice or mean-spirited people. Now I am almost certain that the problem is policy, procedure, training, incentivasation, supervisory instruction, reimbursement structure from insurance companies, hospital business models that monetize patients to being just a "revenue stream"!
In the darkness of my deepest despair I kept recalling the scene in the old movie, "The Fugitive" where Tommy Lee Jones and Harrison Ford are in the drain above the dam. Harrison Ford is trying to make his case that he is innocent. Tommy Lee Jones says, "I don't care". His job is to catch a fugitive and turn him over to another part of the justice system. I always thought that was the turning point in the movie where the Fugitive realizes he is not being chased by a human being but by "Jaws" or "The Terminator". There will be no heard or answered pleas for mercy. Tommy Lee Jones is just doing his job.
That's when I began to think of my experience as an encounter with the Medical Industrial Complex. Part 10.
What's your experience? What do you think?
Sunday, Day Twenty-seven
It’s 4:00 a.m. and the phlebotomists are here to draw blood. I am fed up. I’ve asked my nurses to help me, to speak to the supervisor of the phlebotomists and send me someone who really can get the blood drawn in one try. Did me no good. I start to hatch a strategy and remember the Patient’s Bill of Rights that says I can refuse any medical treatment or procedure at any time. This morning I refuse to let them draw blood at 4:00 a.m. and order them out of my room. My nurse shows up within minutes to tell me how upset the doctors will be if the labs aren’t ready. “Well, then, the doctor can come up here and explain to my face how he wants to fix this”, I tell her.
The more I think about this, the more I realize that I am going to have to solve this problem myself. My hospital experience tells me that I can insist that they use one of the IVs in my arm for infusion and the other IV in the other arm for blood draws. There is no cross contamination of medicine and blood. I know it can be done. My nurse says it can’t be done. We argue. I need a new plan. I call the PICC line nurses. PICC lines are like IVs but are not inserted into a vein, but, rather, directly into an artery to your heart. I figure that if I can get a PICC line request, no doctor would ever agree to such an invasive procedure just to draw blood for the lab. Then I can pressure my nurses to use one of the IVs already in my arms. A helpful nurse answers the phone at the PICC line office and I explain my problem. I tell her that my nurses say that they cannot use one of the IVs for blood draws. All that is required, she says, is that the nurse get a doctor to authorize. I beg for her help. I explain that I’m covered in bruises and am just not going to allow them to torture me every morning at 4:00 a.m.
I’m not entirely sure what happened. Somebody said something to someone at some point because now it is fine to use one of the IVs for blood draws.
Oh, thank you! A PA is here to change the dressing for the wound in my leg. It still hurts like crazy, but she has a far better method than Dr. Meany-McMean.
Monday, Day Twenty-eight
Three days after I left my message, the patient liaison visits me this morning. She introduces herself and I tell her that I am drugged; sleep deprived and just not up for recounting my problems at this moment. She didn't ask when she should return, she didn't ask if there was anything I could tell her that she could look into, she simply said, "OK", turned on her heel and then left.
Infectious disease doctors continue to monitor and take cultures from the wound in my leg. Today they characterize my pain as “exquisite tenderness”. They keep changing the antibiotics that they’re using. Now I know for sure that they’re looking for an antibiotic-resistant superbug. The infectious disease team insists that they actually test me to be sure that I’m allergic to penicillin. They inject 1/2 a dozen or so small doses of penicillin under the skin on my arm. They say they will be back to check. Sure enough, I’m allergic. Before they left my room what they failed to do was to write an order for antihistamines to deal with the now serious itching on my arm. My nurse says she will try and get an order. Hours later, still no order. Finally, I ask my husband to walk down to a drug store in Westwood and buy some Zyrtec. Eventually, the order comes through for an antihistamine. Wow, we saved a couple of bucks.
The lift team arrives to finally get me out of this bed. As I am moved to my recliner chair so that my leg is raised up, we discover that the chair is broken and the staff has to prop up the footrest to keep my leg elevated.
And by the way, what has happened to my cardiologist from the last admission? My husband saw him in the hall and told him that I had been readmitted. He did come by to see me. What is the role of my heart surgeon? He has visited me a couple times. Is he still the attending physician now that I am readmitted? What is the role of the infectious disease team and Dr. Meany-McMean, the guy who thinks I’m hysterical? Is he in charge?
Dr. Rudersorf is a Fellow in the cardiology department.
Tuesday, Day Twenty-nine
The deal that I negotiated with the dietitian worked for only one day. I wrote out several days of menus, computed the carbs, added up all the fluid and made clear when I substituted cottage cheese for the milk that would come automatically with my cereal at breakfast. The kitchen says that they have never seen my menus and that they don’t make substitutions. Sheesh! Holy Sheesh! I’m back to calling the kitchen every day. I am back to where I started. I am still Sisyphus. I am still rolling that rock. It is still rolling back down on me.
I am a nutritionist. I did this kind of menu manipulation or customization for a living for ten years at three different hospitals. Actually, I managed patient food service for the last three of those ten years for Cedars-Sinai Medical Center. I can write a damn menu. I can account for the carbs in the prune juice and the sodium in the dairy. I’m still trying to get food that I can eat and my Milk of Magnesia restarted. If nothing else, I can tell that I’m starting to get constipated. If you cut out more and more fluid from my intake and discontinue the Milk of Magnesia and prune juice and keep me virtually motionless in this hospital bed, what is the likely outcome? How can it be this hard to get some damn prune juice?
Laying wide awake in my hospital bed in the middle of the night I am trying to figure out why I am so anxious and moody and angry. My husband keeps asking me to get a psychiatric consult. But, I am so resistant to the idea. I try to tell him that my mental and emotional condition is because of real things that are happening to me. I am depressed because of the way things are going, how I am sometimes treated, not because my brain chemistry is off. It is also true that a lot of my feeling of helplessness and being out of control is because I am not in control. I’ve made my living for two decades as a manager somewhere. I spend my days trying to identify problems, figure out a solution and then implement it. My anxiety is absolutely related to my inability to fix anything.
My sister, mom, son and daughter-in-law and my lovely granddaughter are here on a visit. I am so glad to see them, but I am so exhausted physically and emotionally that I really have to fight to be present in the room. The one thing I am sure of is that my 2-year-old grand daughter brought me a lovely pink teddy bear. I am so touched by it. She says its name is “Pinky-pink”. She got Pinky-pink for grandma and another smaller identical teddy bear for herself whose name she tells me is “Pinky”.
I am taking Pinky-pink to sleep with me. He is actually really cuddly.
Wednesday, Day Thirty
The one thing I know for sure is that having a bowel movement is a very important thing to a charge nurse. Mine even wears a big, round, brown button that’s says “I’ve had a BM today. Have you?” Well, no, I have not. But you have tightened my fluid restriction from 2,000 ccs per day to 1,500. Some doctor or PA or someone discontinued my Milk of Magnesia, I can’t get simple prune juice from the kitchen and I’m trapped in this bed. Sheesh. Even I know what is going to happen. Why will no one think through the whole process? What is the problem? What is the solution? Make an assessment, make a decision or find the right person who can make a decision. Is there no one in this hospital actually assessing my condition, my progress or setbacks? Who is actually looking at ME, not just an infection or an organ or a symptom?
I know that nursing can stock their unit refrigerator anyway they need to. Eventually, I negotiate with my nurses that they will stock their nursing station so I can get prune juice from them and they can account for the fluid. They will also have yogurt sent straight to the nursing station to bypass the kitchen.
Today I am told that I must have a bowel movement. I agree. I can feel the pressure in my lower colon. The first thing my nurse tried today was a suppository. Nothing happened. She tried a second one. Nothing. She says that a doctor has ordered a fleet enema. I ask her to explain to me the difference between a fleet enema and a warm water enema. I think that the stool I feel in my lower colon is hard and dry and what I really need is warm water. My nurse doesn’t know the difference. She asks me which kind of enema I want. So, I think to myself, “Why are you asking me to make the decision?” I choose the warm water. After a couple of tries, success! My charge nurse is very happy.
I could have been spared the discomfort and humiliation of two suppositories and two enemas if someone had really been actively managing my health care. Health care is two words. Who, for the love of all things, is actively managing the whole of my recovery?