This is the letter I finally sent to the local hospital about some of my experiences 3 years ago. I think it has helped me feel clearer about my upcoming stay after shoulder surgery, though I am not looking forward to it. I also gave a copy to my Dr and his PA, so they would know why I am so anxious, even though I know this stay will be shorter and easier.
Do not feel you have to read it, either, I am posting it because people have asked about it. I have removed the hospital's name and the doctors' whole names, because they don't really matter.
Dear (patient advocate)
Three years ago, on Thursday Aug. 7th, 2003, I fell at work and, because I was hugely obese, went down like a redwood tree. I ended up with a large butterfly fracture of my right upper arm, and terrible bruising from my breast to my thigh on the right side. I was sent to ----- by ambulance. I am writing this letter to review some of the difficulties I encountered during my hospitalization at -----.
I was greeted by Dr. S. and his (then) PA, Mr.T. My arm was X-rayed, put in an ace bandaged type cast, then I was given pain meds and sent home. I was told that their practice's new arm and hand surgeon, Dr K. would do surgery on the arm early the next week.
During my time in the ER, nobody x-rayed any other part of me-like my neck or back-nor was I examined in any other way-an issue which soon became a big problem for me. I went home, took my pain pills and began to decompensate right away. By Sunday, I was unable to get out of my chair, and my partner called 911.
I went back to -----, and was admitted to the over crowded, understaffed orthopedic floor. I was in the second to the last room on the right side in the bed nearest the hall. Since no roommate would open her curtain, and I could not see into the hall, my view for the next 10 days was the TV and a blank bulletin board. After this I was sort of in and out of it for several days.
On Monday morning, my then PCP, Dr. D. dropped by, and was alarmed when I didn't know who he was and that my bloodwork was all out of whack. He ordered an MRI for me, because he was afraid I was having a brain bleed, but he was told that, because I weighed 368 lbs, hospital insurance would not cover the cost of fixing the MRI machine, should I break it. Therefore an MRI was out.
If I had been examined by a doctor or nurse, either in the ER or when I first arrived on the floor, it would have been clear that I was having a "body bleed" for by then I was black from breast to thigh, and getting darker daily. I knew this, and so did the aids who helped me bathe, but I did not know that officials-like my nurses and doctors- did not know, so I never mentioned it. (I was very naive about hospital errors back then. I've learned a lot since then)
All of this I found out later, of course. At the time I was confused and scared. I would wake up two or three time a night, terrified, swimming into consciousness with no idea where I was. After a long while I would gather all my courage and call out, "Where am I?" The first couple of times my roommate would tell me I was in the hospital, but soon tired of my waking her. She would hit her bell and tell the answering nurse, "She's doing it again," and bored, angry sounding voice would erupt over my head, telling me that she had already told me three-or four-times I was in the hospital. I still wake up at night with that feeling of terror at not knowing where I am.
I fared little better during the days. Each time I was to go for a test or X-ray, a team of people would appear at my bedside, some commenting on, or complaining about, how difficult it was to move me, leaving me stammering apologies about my weight. Each move was exquisitely painful, for my arm was still in the original ace bandage wrapping, still unset, and hugely swollen.
One aide actually pushed on my injured arm to get me across the chasm between bed and gurney. When I screamed in pain, she snapped, "Listen, Missy, we have to get you up and moved. Screaming isn't going to stop us." My one small, pitifully proud moment of the whole hospital ordeal happened when I snapped back, "No, you listen, Missy, my arm is unset and unattached and if you push on it I will scream." She had the grace to look slightly abashed, but was no less rough in subsequent moves, though she stayed on my left side from then on.
Nor did I fare much better on the way to and back from testing. I was in an elevator with my eyes closed, trying to contain my pain, when one of the orderlies said to the other, "This woman is too fat to live." The other answered, "Well, she probably won't be living long anyway." I lay there feeling flushed, terrified, and totally humiliated. I kept my eyes closed until they dropped me off at some door for some test.
Then there was the fiasco of blood draws. My right arm was out of commission and I am a hard draw. Knowing this, I was polite to the people who came sometimes twice a day to draw blood. After only a few days, however, I had black and blue stick marks from my left hand up to my shoulder-mostly from misses. The last straw was when I woke up to find someone trying to get blood from my armpit. I called a halt to blood draws, loudly and clearly. A nurse came in and said they would get their best guy to get the required blood that day.
This phlebotomist turned up with another man who was apparently in training. It should have been clear by then that I was not an ideal candidate for someone to practice on. However, the so called "best guy" insisted the second man try three times, before he was willing try. He did get my blood, second try, and left me quietly sobbing with anger, frustration and pain.
Why did the so-called best guy make me be stuck three times before he tried, knowing by the marks and bruises on my arm I was not an easy draw? I'm still wondering. I finally got a port put in, something that should have been done several days earlier.
One evening, after my blood work had improved, but before surgery, an elderly woman was brought in from a nursing home. From my side of the curtain, I heard her grandson telling her over and over that she would be okay now, she was in the hospital, and he would be back to sit with her first thing in the morning. The orderlies put her in the bed beside mine. A nurse told her she had to go down the hall quickly, but would be right back to settler her in. The woman moaned for a long time, while I spoke soothingly to her through the curtain, then she fell silent.
Three hours later, ( I know because I was watching prime time TV), I called for my next pain meds. I told my nurse that nobody had been in to settle my roommate. She looked horrified and pulled the curtain aside. It was too late, the woman was dead. Now, she probably would have died anyway, but her pain could certainly have been eased had a nurse returned, as promised. Within fiften minutes, her body was gone, and the bed was being cleaned. I found this experience to be quite traumatizing, though no nurse that night or the next morning would discuss the incident with me. It was as if we all were to pretend it never happened.
And then there were the smaller problems, not so much medical as practical. I could not take the tops off hot food, or unwrap a sandwich with my left hand alone. The food service person informed me that opening food was not her job. So at each meal I had to ring my bell, inform the nurse I needed help, and then wait, sometimes for 30 to 40 minutes, before someone would show up to help me.
The same was true for the bathroom. I could walk, go by myself, and get back into bed, but I could not get up from the bed without help. Sometimes I waited an hour for help with that, even though I began to become a bother, ringing at 20 minute intervals.
The physical therapist and occupational therapist would arrive one right after the other in the late afternoon, after I was exhausted from getting up to use the bathroom and sit in my chair on and off all day. They kept urging me to exercise the rest of my body to keep myself strong, but never were able to arrive any earlier, or one in the morning and one in the afternoon.
When my bloodwork was finally close to normal, and Dr. K. did the surgery, I was less able to help myself and more dependent on the nursing staff, which was terribly understaffed, due to vacations, and "a bug going round." I turned out to be allergic to morphine, so I had to ring for pain meds and wait so long sometimes that I was in real agony, struggling to breath slowly, with unwanted tears sliding down my face when the nurse finally arrived.
Please know that for the most part, I was well aware of the stress on the nurses, and that there were sicker patients on the floor than I. I am by nature polite, and was careful to thank the nurses and aides for their help, friendly towards most staff members, and quite patient until towards the end of my stay, when I became totally desperate to leave the hospital. Some staff members were actually wonderful to me, smiling and helpful no matter how tired, even to the point of anticipating my needs. I truly appreciated them, and know they are working in the right place. Other staff members-especially nurses-were over-worked, over-tired, curt and spoke down to me, as if being fat also made me stupid.
Finally, on a Friday morning, Dr. K. said I could be released to a rehab place, and the discharge nurse came in to tell me they were holding a bed for me somewhere (I can't remember where now) and they would send an ambulance for me "soon." I understood that to mean that same day. Nobody came for me Friday, but I figured they would show up Saturday morning. By Saturday afternoon, I was desperate to leave, then was told by a nurse that no place sent an ambulance or took in new admissions on weekends.
I had a meltdown, and threatened to leave anyway, but, of course, the hospital held the upper hand, and that was made clear by the nursing staff, who went so far as to call Dr. K. on his weekend off to give me a lecture, even after I had already capitulated and said I would stay.
By Monday, my only thought was to go home. When the discharge nurse came bustling in shortly thereafter, asking why I wasn't going to a rehab place, I told her what had happened. She was shocked, but then had the grace to come back to tell me she had gottenbusy, and hadn't finished the paperwork, and she was sorry.
By then it was too late. I had been it that awful room, in pain and humiliated about my weight for almost two weeks, with nothing to look at but that empty bulletin board, and I wanted out. And so my doctor released me, to go home way too early, forcing me to set up many of the services I needed myself.
All in all, those two weeks were among of the worst experiences of my life. And, as you can tell, I am still angry about my treatment at -----. I still wake up in the night, terrified, not knowing where I am. And I have gone from trusting ----- to take good care of me to massive anxiety at the thought of having to be admitted there again.
Since then, I have chosen to have two other surgeries at Yale, where I was treated as a competent individual, respectfully and with dignity. Despite anxiety which was leaking out my ears, I found both experiences to much better than my time at -----.
I am writing this letter for several reasons. The first is that at the time I received my evaluation, I was still unable to write at all, so I let it go. As time has passed I have become more angry, not less.I have had to spend a lot of time in hospitals, and now I have anxiety attacks before each admittance.
Although I have lost nearly 200 lbs. since 2003, I think I am most angry about the way I was treated for being obese. I heard the snickering and comments about my size; it was, and is, totally unacceptable. I wonder how many other obese people have been subjected to the same kind of humiliating treatment. Perhaps some sort of sensitivity training is in order?
The second reason is that I am hoping that by writing this letter, I will exorcise some of the demons that linger three years later. I have gone into my subsequent hospitalizations with completely negative expectations, to my own detriment. While I have become more assertive and self advocating because of my experience at -----, I have also had to deal with the anxiety causing memories of that experience.
The third reason is that I am scheduled for surgery at L&M on October 19th. Dr. M. will be removing the rod and screws that Dr. K. put in, and cleaning up the rotator cuff. I am truly scared about spending time on that floor again. I hope that my experience will be radically different this time, but I am more anxious than usual before hospitalization.
I believe strongly that the mind/body connection is a critical part of healing, and that my anxiety is detrimental to this. I am hoping that this letter will be a method of changing my anxiety, and of having my experience this time be much better than the last time.
M. P. S ( I signed my full legal name, not using Margo, because I had switched into my attorney's daughter mode somewhere in the middle of writing it)