When I last posted, I told you I’d been sick in the hospital in October and I think you were able to guess that aside from being horrible for me as a deaf person, it was a horrible experience all around. I was warned not to go to that hospital in Richmond Hill, Ontario, Canada (Toronto), but it was urgent and we needed the closest emergency room.
Our experience with the health care was so bad, we knew we needed to do something. As soon as I was able to sit up in the car, we drove to New York City to see our doctor here. I ended up having major surgery in New York on December 7th at Mt. Sinai West (aka Roosevelt, Roosevelt Mt. Sinai) which is at 10th Avenue between 58th and 59th Streets. I don’t hesitate to name this hospital because the care I got was extraordinary and I want everyone to know it. I couldn’t have gotten better care if my grandmother was here to take care of me.
There are far more things than I’m writing about but honestly, it’s painful for me to relive the Canadian side of this. But these are just a few of the more serious examples:
They ignored it completely and isolated me. They made me feel like I wasn’t worth the trouble to try to communicate with me. They tried to talk to me through the intercom no matter how many times we told them I can’t hear. They didn’t face me and they talked to me in the dark so I couldn’t see their lips even if they had. I slept in my hearing aids even though it’s massively uncomfortable, and held on to my cell phone because being able to text DH (Darling Hubby) was my lifeline.
They immediately put up a sign on the wall by my bed where it was impossible not to see it. They made sure they always faced me, always made sure there was enough light for me to see them, and even wrote notes to me when I had trouble reading lips. If I rang, someone came in immediately. I only needed my cell phone if I was up to personal communication. One of the staff doctors spoke to me while looking at his notes. His colleagues immediately reminded him to face me because I can’t hear.
The doctors ordered morphine every 4 hours. The nurses (with the exception of one nurse in the whole six days) refused to give it to me as scheduled and made me wait very long times. They said I didn’t need it. We told them the doctors ordered it. We tried to get hold of the doctors to tell them again. The doctor finally did tell them and they said ok, but then when it was time, they’d keep me waiting up to an hour or more before coming in to refill it. The family of my roommate actually went to the nurses station one time because it was so long and I was suffering so much.
I was given a button to press to release the pain killer. They told me not to let my pain build. To use it whenever I needed it. They said it would not dispense sooner than 10 minutes, so there was no danger of overuse. They monitored it and it never ran out. Even after major surgery, I felt no pain.
Even when I called for the nurses, they rarely came in. My family would have to keep going out to find one, she’d say ‘I’ll be there when I can” and they’d make me wait. I was hooked up to intravenous and needed them to unhook it so I could use the bathroom. Suffice it to say, they let me suffer in that respect too. Then they kept me waiting up to an hour before coming back to hook it up again.
Several times a day, alarms would go off on my IV machine, which they ignored for on average of an hour. One time the roommate’s family called them because the alarm was disturbing them. It’s rather frightening to have your IV monitor flashing red messages demanding instant attention. Especially when no one comes to fix it.
Again, I was hooked up to intravenous. As soon as I called, someone came in. They usually waited for me so they could help me back to bed and hook me back up immediately. The few times they weren’t able to wait for me, someone came in within a minute or two of my getting back into bed.
Dignity and Care
NONE. ZERO. They treated me like an animal. The first night I was admitted, I didn’t have a room. I slept on a gurney in the main hallway on a different floor than the ER, but in the middle of traffic. I was physically sick and had no privacy. I had to take my IV pole and walk without help (while being sick) to a public bathroom down the hall and around a corner. I passed at least three other patients in the same boat. I got almost no pain killer and was ignored.
The next morning, I was put in a ‘transition’ room – the nurse in there was ok, but I was only there a short time before being moved to a room.
I was finally taken to a room where the roommate was so sick people had to wear gowns and masks to visit her. Her violent coughing was frightening, as was seeing everyone walk by me with masks and gowns, and there was no protection for my visitors or me. The bathroom was on her side of the room and I was not allowed to use it because it disturbed her and her visitors. So I (while on morphine) had to walk to a bathroom outside the room and down the hall. That bathroom was out of commission after a few days so I then had to walk down the hall and around the corner. A very long walk for someone on morphine, who was still physically sick, scared, and alone.
I had to spend six days and night in the dark. The curtain between us kept my side blocked from natural light and I wasn’t allowed to have my light on at night because it disturbed the roommate.
They were treating me like an animal, no caring, no compassion, and the care was horrible. They even changed my IV in the dark – seriously – stuck needles in me without having a light on. (My friend was visiting and her eyes almost popped out of her head when she saw that.) I told my husband to get someone because I wanted to get out of there. Finally some woman came in who was in some position of authority. We first asked to have my room changed – which she refused. We were concerned about the contagiousness of the roommate but she insisted the closed curtain was enough protection. Yes, it was closed, but there were gaps. How is that protection when others coming in needed masks??
She insisted they didn’t have another room to change me to so my DH (Darling Hubby) said, “Put her in a private room and I’ll pay for it.” Again, she refused. Not only did she refuse, she said private rooms were for special cases and I am not special. I then said “then check me out. I’m going home.” “You can’t go home,” she said, acting totally shocked. “You need to be on IV, you need medication, you can’t go home.” We tried to tell her how badly I was being treated. “Oh you poor dear” she said, but did nothing to try to improve the care.
Almost every minute I was in that hospital, I suffered, I was treated badly, and I was terrified. The doctors were only there a couple of times and we had to keep asking them what was happening. They said I had Acute Pancreatitis but weren’t interested in finding out why, or following up. When I asked if this could happen again, the doctor shrugged and said, “It could.” “Well what should I do?” I asked. I was already terrified of a reoccurrence. “Come back and we’ll admit you again,” he said and left the room.
By the way, no one ever came in to clean the room, not even once. I was there six days!
I went home with NO instructions, no idea why this happened to me, no idea what I should or shouldn’t eat, still in some pain, still feeling sick, and no one to help me. That’s when we decided to go to New York.
The first thing we did was go to our doctor here who examined me and did blood tests. He read the reports from the hospital in Toronto and agreed that I did have Acute Pancreatitis. He, however, cares about me and through questioning, we figured out this was a second episode – I’d had the first in August, but not quite as bad. That I had a second attack so soon after and so much more severe, was very serious and the tests and consultations with specialists began. The result being major surgery at Mt. Sinai West.
Everyone was wonderful in the prep and start of surgery. I slept through the rest, obviously, but was awake when they took me to my room. I remember how very gently they transferred me to my bed. They were so careful not to hurt me. They got me settled, gave me my buttons, put up the sign to let other staff know I’m deaf, and made me feel cared for.
The nurses cared for me constantly. They checked on me, checked on my monitors, which oddly never set off alarms, made sure I was comfortable, reminded me to use the pain killer, helped me when I felt sick, made sure I had privacy when I needed it, and treated me like I mattered. They asked if I wanted the light on or off, did I want another blanket, was I comfortable, did I have any pain, etc. etc. Again, my own grandmother couldn’t have taken better care of me.
A funny aside – one day I was just lying there, looking out the window (I had a spectacular view) and the nurse asked me if I’d like the TV on. I told her that I didn’t bother to order the TV and she said, “Oh no, just turn it on. It’s free. And handed me the remote control.” It was FREE. Now that’s something I’ve never seen.
My own doctor came to see me every morning, made sure things were going well and reassure me. The surgeon also came every morning, as did a staff team of five doctors. Even the lady who came in to clean the room each day asked how I was feeling. I never lacked for attention or care.
My biggest complaint is that I had one roommate who was constantly talking loud on her cell phone. As hard to believe as this is, she started calling people at 5:00 AM! Who do you call at 5:00 in the morning?! When Darling Hubby and Dearest Son came in, they couldn’t believe her nonstop cell phone chatter. They couldn’t turn off their hearing like I can!
When it was time to go home, the nurses hugged me goodbye and wished me well. They told me I was a wonderful patient but they hoped I wouldn’t have to come back. The doctor gave us a folder about 3/4″ thick with follow up instructions and information. Before I left the hospital, both the surgeon and my doctor told me when to come in for my follow up appointments. And everyone reminded us that they’re here if we need them.
A few days after I was home, we received a call from the Mt. Sinai West Hospital. It was a manager asking about the quality of the care I received and if there was anything they could have done better. As you can imagine, we got no such call from Richmond Hill.
There was no bill. It was free. Yippee. It would have been insulting and salt in the wounds to pay for that torture.
I need to be clear about this because though it wasn’t free, it’s complicated. Because our primary residence is in Canada, we don’t have U.S. health insurance. Though we pay for extra insurance for when we travel, they would not pay for this because they said I could have gotten treatment in Canada. In Canada, all this would have taken a lot of time because of the long waits, referral process, and lack of access to the doctors. Three doctors here told me if we didn’t get this taken care of right away, I could die. We had no choice. Though the insurance lady was sympathetic, she could not approve the care, so we are paying out of pocket.
The doctors, labs, and hospital here are all very sympathetic. They have all discounted our costs because we have no insurance. I can’t deny that it’s a large number. But they’ve gone out of their way to work with us and lower the costs.
There are some wonderful doctors in Toronto. I don’t want anyone to think I don’t appreciate the good doctors there. Getting to them, however, is difficult and time is an issue. I know how I feel about this experience, but you can form your own conclusion. In the meantime, I’m very grateful to be here today, alive, feeling well, and enjoying my precious family and dear friends.