A warning to fellow New Yorkers and the Battle of my life:
I try not to use to my blog ever for snark, or for arm pulling. But I do use my words carefully and very much honestly at all times.
While I don't expect a response to this open letter because these details make for a good lawsuit, I feel it's important for a teaching institution who has signs everywhere taking pride in being a top 10 care institution for the past 10 years to really know how they are doing from the perspective of someone who just went through the fight of her life in their care (and I use the word 'care' to apply to this institution very loosely.)
I was transferred to the NY Columbia Presbyterian Millstein Building Oncology Ward on 12/31/11 after having spent an entire night in the ER of the Allen Pavilion which is located further uptown. It was during imaging taken at the ER where a mass was discovered on my lung, Allen didn't have a bed for me, and so at the urging of a doctor I met while in the ER at Allen (who actually was phenomenal) and the urging of a nurse who was taking care of me (who was also phenomenal), a bed was found for me where I have spent the past week at 6 Hudson North of Columbia Presbyterian. If only a bed had been found at Allen instead. A mass that had been there since imaging taken in October that I was NEVER told about. Had I been told in October I would have started this battle WAY sooner.
I want to start with a bit of background on the type of person I am. I will avoid aspirin for a Migraine if I can and try and start with meditation first and see if that dulls it. While women are not usually that way, much like a man, I'm private, stoic and tend to not share my pain. The pain that led me to the ER on 12/30 had me curled up in a ball in my bed, literally writhing in agony. I've never in my life experienced a pain so intense and pray to never experience something like that again.
It was a super long night in the waiting area of the ER before I was even triaged which is surprising for me, because as an asthmatic I don't normally experience super long waits. When I did finally get in the ER, a battery of tests and imaging was taken. I knew by the look of surprise on the person's face who took the images that things were not good. An amazing doc broke the news about the mass, about what the possibilities of the mass could be, and that I was definitely staying, they just didn't know where at that point. A bed could not be found at Allen, which I honestly regret to this day. I wonder how much easier things might have been there.
After a bumpy ambulance ride to the Millstein Building at Columbia Presbyterian, I arrived exhausted, in intense pain and in desperate need of rest. Who knew it would be the first and only time I'd see my bed made.
In the morning an agonizing trip to the bathroom made me wonder if I was in a hospital room or a movie theater. The all too familiar to most New Yorkers feet sticking to the ground and squeaking sound greeted my feet. The bathroom was entirely like something from a cheesy motel from a horror movie. Filthy floor, a large piece of missing tile (that can't be sanitary), a gross mirror you can barely see yourself in, a broken paper towel holder with paper towels above the holder just floating loose, and the remnants of my 'roomie's' bedpan still stuck to the upper lid because the folks emptying it don't take the time to lift the lid (a daily occurence by the way). What a lovely day one.
My bed was never made, I was never offered a shower. My mother thought she'd give me a shower, but cut her fingers on the broken shower head.
After 5 days I put my foot down about new bedding, and someone finally arrived with this bedding and threw it on a chair and began to walk away. I asked her should I move to the chair so she could make the bed. She barely glanced back and said 'It's not my job to make your bed', 'contact your nurse'. After about another hour a harried and apparently put upon NA made my bed, huffing the whole time. I'd pay you to find me the infamous 'hospital corner' I've heard so much of. When asked about when beds get made I was told every other day. That did NOT happen. My bedding was only changed once (quite a nightmare since you wake up every single with night sweats from the pain meds), and that's because I literally put my foot down about it or it would have NEVER happned the entire visit. Even most dogs have neater beds.
While my room was not hospitable in any way for a human, it would have made a great spare freezer. I thought my body temperature may have been off because of my meds until every single visitor I have had would put their coat right back on including scarf. I asked a nurse about raising the room temperature and she said she couldn't adjust it (she did try) and would contact maintenance (it seems like there is a person for every single thing, but you never find out who that 'person' is.). Maintenance has still not adjusted the temperature and I've endured a room as cold or probably colder than the current temperature outside here in New York City.
I was supposed to have a 'Bronchoscopy' on Tuesday, so I was placed on an NPO order (nothing by mouth Monday after midnight). After a tense morning, I was never taken in, and of course had to miss meals just to find out they wouldn't have an OR for me until Wednesday. So again Tuesday night another NPO order after midnight, and because of the time the procedure was scheduled I missed pretty much a whole day of meals. But that would actually turn out to be the easy part.
The transport person to take me to the OR, didn't come in my room, didn't offer to transfer me to the stretcher or even help me walk to it. My family got me to the stretcher, and asked her for a sheet because I was freezing. She literally sucked her teeth and muttered about what a pain in the ass 'these' patients are and practically threw the sheet on me. Honestly despite my weakened state, the New Yorker in me and Bronxite that I am was rising to the surface. And oh does it get better. We get to a walkway with a steep downward incline, and she locks the wheels of the stretcher while at the begining of the downward part of that incline and walks away leaving me in a position that would block anyone trying to get by on both doors and it was freezing there, not to mention if a wheel had unlocked my stretcher would have went careening over like a top. I ask her where she is going, and this was her reply 'YOU are too heavy for me this thing is too heavy and I need a man to wheel this thing over the incline so just stay there and deal with it.' So after a long chit chat with this 'man' about their respective holiday weekends, he began pumping up the stretcher much like you jack a car tire. I firmly asked him to STOP, that he was causing tremendous pain in the area where the mass is located and I had it made to clear to avoid my left side, and asked that they avoid bumping the stretcher against walls. He looked right at me and replied 'I have to worry about MY health'. And I made him repeat it just to make sure I had heard right.
As they pulled me in to the endoscopy waiting area, I was wheeled into a twilight zone of people pale as a sheet, moaning, some louder than others, and had a feeling I was in for something....
I was told the lead doctor was a Dr. Bulman, he never arrived, which means my procedure was performed by an attending, I did NOT agree to that. But that's not the worst part, it is what happens next that gets interesting. This was going to be performed under what's called 'twilight' sleep. You are breathing on your own and not entirely put under. You are asked a series of questions to gauge your readiness for them to begin. I didn't miss a question. No answer was incoherent. I told the Doctor, I'm still too lucid, all of my answers are still making sense, I don't think you should begin.
I've seen those shows on TV, even movies where someone undergoing a surgery wakes up and sees, hears and worsely FEELS everything. Count me among them.
I woke up with a start, my glasses had been removed so I couldn't see with focus, but saw the camera, felt what was happening, and coughed so hard I'm sure everyone's fear was I would cough up the camera.
Of course then they decide to overcompensate for the error and give me too much Twilight. When I wake up, not ONE person came and spoke to me and the nausea was so severe I literally felt like I was dying. Thankfully the exasperated rude woman who transported me there wasn't the one who transported me back, but that's still not saying anything. I was wheeled in front of my room and just left there moaning. I was in no condition to walk back to my bed and needed a transfer. My nurse and my mother (who has a bad back and now injured fingers thanks to the showerhead in the bathroom here) had to slide me from the stretcher to the bed. Hard on them and hard on me. And shouldn't have happened in a hospital that prides itself on the quality of the care they provide.
On Wednesday I missed an entire day of meals and when something finally did come, I couldn't tolerate it because of the meds. (I was given morphine to manage the pain post procedure). We asked for soft foods as the endoscopy still had my throat sore, and it wasn't until 1:30 in the morning that one cup of lemon ice and one cup of pudding arrived. You try being on enough meds to choke a horse for a week and skip an entire day of meals.......
My psycho, racist room-mate puts her TV on so loud you can hear it from the elevators and this is ALL day long, she does not put it off, and she never turns off her light. And pre surgery when a nurse was speaking with me, she literally told that nurse that because she has money, that whenever she needs something it will always get precedence over me and my needs. She also told someone she was speaking to on the phone that for a 'Hispanic Woman' I didn't seem to smell as bad as most of them normally do, WTF? Seriously? I know for a fact I wouldn't be allowed to get away with half of the non-sense this woman pulls.
But I will say that her theory about money and treatment is one that doesn't surprise me as I have experience working in a hospital myself, but seeing just how much the staff here agrees with it themselves and just how differently people are treated here is still a shocker in this day and age.
Apparently warm blankets are for the 9th floor, 'You know for the folks with MON....' and then a long pause which is what my mother was told when she asked for one for me since the heat was never fixed in my freezer, I mean room.
Sleeping in a bed I call a 'dogs nest' because it doesn't get made, no shower, not only because the shower in my room is broken and has not yet been repaired, but no one would do it for me even it was working. Thankfully I do have family and friends willing to if and WHEN the shower ever gets fixed (IF that happens before I get discharged remains to be seen). A procedure that wasn't even performed by the Doctor who I thought would do it, and then a team who was discussing the possibilities before they even had the dissection nevertheless the actual results from pathology has made for a surreal experience to say the least.
Even the seedy motel rooms you see in those 'b' horror movies have more potential than where I am staying. How are you supposed to take on the battle of your life in these conditions?
I am a woman of Faith and I am trying to walk in that Faith, speak in that Faith (despite such dire circumstances) and live in my Faith. It's been super difficult to keep my energy and spirits up here.
New Yorkers, if you ever find yourself in an ambulance (and I pray you do NOT) and you are coherent enough to hear you are being taken to Columbia Presbyterian, INSIST you be taken ANYWHERE else.
Aside from poor treatment and care, poor conditions of the rooms and staff that makes you feel you are putting upon them (despite the fact that in spite of my pain, not one person who dealt with me can say that they didn't get a please before I asked for anything and a Thank You after it arrived), this hospital has a caste system that is almost medieval. I am in the fight of my life right now and I haven't quite been given the tools to fight here.
They say that God helps to turn all bad around for our good, that there is a lesson in our trials, moments of sadness, moments of pain, I'm still trying to figure this one out, but I do thank all of my readers for their outpouring of prayer and concern for both my health and my wellbeing/spirits. It is because of you that I have had the courage to live out loud since 2009, to share my life and my feelings, my victories and my failures, each and every day and every day to day moment I have shared with you, and this is probably my most raw and open post to date. But please dear readers, avoid this hospital at all costs!
My aunt encouraged me to journal about my experiences and this post is shared from those journals. I am sure I won't get a response because they will be more concerned about a law suit than they ever were with my quality of care, but if they do respond (some pat answer sent by their PR folks after legal approves it) I will be sure to share it here. I'm sure we could both use the laugh.
If any Lawyer reads this and would like to contact me, please feel free, you can use the contact us page of this site to be in touch.
I've taken some photos which will be added to this post as soon as I'm back home, but I thought I'd share my day today, Friday, 01/06/12. Today I was scheduled for a Pet Scan, I was not told the scan was in another building and I'd be transferred to the procedure from the outside. Let's remember, what's compromised is my Lungs, and I was transferred externally in the cold with a robe, never told I'd need my coat, Does that make any sense? Now I have a dry cough that is exacerbating the pain I am already experiencing. Transport was given incorrect information so after my test I was left in a HALLWAY to wait almost one hour for transport to come return me to my room, again with an external building transfer in the winter for someone with a compromised lung....... I ran into my doctor in the hall on my way back and he asks me are you going to your scan or coming from it? He asked this as he turned away and kept walking, it even got the transport person angry, and she replied before I could, she said, 'how about if you ask a patient a question that you turn and at least acknowledge her response?' He tersely replied he would come see me when he had the results, it's 9:09 pm and that was 1:30 pm and he has still not arrived. And yet yesterday and today I was told if the bone scan went well, I would be going home.....Looks like that isn't going to happen. My prayers are for Saturday, but it's getting harder to hold out hope. And then the fun really begins once I have all the test results back and finally know what I'm up against!