10 years ago, yesterday

On May 7th 2014 I walked into my doctor's office and she told me to rush to the hospital because I had Guillain-Barre syndrome. She made a point of telling me to go to Mount Sinai Beth Israel Hospital in Manhattan because the hospital around the corner from my house would have killed me. She actually said that and I've learned that that might have been true. In the emergency room they confirm my diagnosis and told me I be fine in a year. I joked and told him I had to be home and move my car on Friday because they wanted to clean the street. In my mind I joked to myself that I was never fine so I would be looking forward to getting fine. But they were wrong. A year went by and I wasn't fine. It's been 10 years and I'm not fine.But yesterday I read traced my steps from all the hospitals I went to 10 years ago.10 years ago they moved me around in an ambulance, yesterday I ran them.

I walked in the door of the emergency room at Mount Sinai Beth Israel Hospital on 2nd Avenue and 17th Street. My doctor had called ahead and they were expecting me so I didn't stay in the emergency room for more than 5 minutes and was put on a Gurnee and left in front of the nursing station. They started running a billion tests and I actually asked one of the doctors if I was being admitted because I really didn't understand what was going on.He looked at me quickly and said yes we're just trying to figure out where we're going to do the spinal tap.Here, or upstairs and intensive care.For most of the rest of the 135 days I was hospital the doctor has had some great bedside manner. That was a moment where it didn't happen.Hearing the words intensive care and spinal tap in one sentence is not really what people want to hear. They did the spinal tap downstairs and then rolled me up to the Step down suite where I received IVIG for 5 days and then moved into a regular room for a few days. 

The higher light of my stay in intensive care was watching a guy best to have a camera removed from his poop. I'd repeat the story but I already told it in this blog post 

They determined that the IVIG was working and that I stopped getting worse so I can move to rehab. The buildings were physically connected by a bridge but they put me in an ambulance.

The building next door was rusk rehab. I was leaving the Mount Sinai / Northwell Health System i'm moving into the NYU Langone Health System. I have since learned that these are big deals. I wouldn't say that I didn't have great doctors at Mount Sinai but I learned what great doctors were about when I got to Rusk.Simply put they understood that happy patients heal better. A big part of their job was to keep me happy. They took care of the big things and the little things. Little things like having good food that was served with a smile. Big things like paying attention to my progress and respecting my opinion. 

One morning when I was there my favorite nurse came into my room after my breakfast was served. She sat at the edge of my bed and picked up the menu and started circling stuff. I told her that I think the nutritionist already indicated what I wanted to get for food the next day. She told me that she was circling stuff for herself She wanted to start having breakfast with me and this was a way of getting free food.I realized that I had arrived at the best place with the best people and I became the best patient.I was in pretty shitty situation but I had arrived at the status of making the best of it. A few years later when I was still using crutches I walked right back into that hospital and went up to the fifth floor where at Ludmilla was working. She happened to be sitting right at the front desk and without looking up at me she asked me who I was there to see. I just had a one word answer. "You." She jumped up and hugged me. We were both crying like babies and I started laughing. She asked me what was so funny. I told her that I didn't know she was short.She worked with me for weeks but I had never stood up in her presence before.

. 

But there was a problem. It wasn't that I wasn't getting better It was that I was getting worse. so the decision was made that I needed to go back to a regular hospital.

Another ambulance ride to NYU Langone Hospital. There they thought my diagnosis should change from GBS to CIDP. The difference is big. GBS is an acute condition. Your immune system attacks the sheaths your motor nerves over a relatively short period of time.a few weeks. Chronic inflammatory demolition polynoropathy is when your immune system attacks the sheets of your motor nerves forever. At first they were going to give me another round of IVIG but then they realized they needed to do what they called the more aggressive treatment. They put a central line in my carotid artery and filtered my blood for an entire day over the course of 5 days. Then they gave me five more rounds of IVIG. As soon as that ended they sent me back to Rusk.After a few weeks at Rusk the doctors and I realized that was a problem. I was still getting worse.... Back to Langone.

This time they didn't do anything for a couple of days. But every doctor in the hospital seem to come in and visit me. When a familiar doctor came into my room I asked her if there was a big room on the top floor of the building where they all sat around a big table and talked about me. Yep, pretty much that.I asked her if I'd be better off at Columbia University Hospital because I found out that was the center of excellence for people with Guillain-Barre syndrome.She told me the guy from Columbia was also in that room.So was a guy from London Paris and Tokyo.I was a puzzle that a lot of really smart doctors with trying to figure out how to solve.They presented my wife and I with their research results. They explained it in a way that made sense to both of us. My wife understood the math and I understood the reality of paralysis.buff label non-fda approved chemotherapy. They needed to reboot my immune system. This wasn't even a drug trial they were trying on meI was patient number 14.

Either the chemo worked or the disease had run its course but I stopped getting worse. But the bad news was that my diagnosis was changed. It wasn't GBS or CIDP anymore. I was officially diagnosed with acute motor axonal neuropathy. My immune system was attacking my motor nerves and not just the covers of the nerve sheaths. The mantra of the doctors changed from you'll be fine in a year to let's talk in 3 years.The other part of the bad news is that I could not return to Rusk. I wasn't going to be healing fast enough to meet their standards. I had to go to what the hospital social worker called subsequent care. But, what I later learned was called a nursing home.My wife had 36 hours to make a decision on where I should stay. The scary thing was that the length of time I was going to be in that nursing home was at that point considered unknown.And the even scary thing is that after my wife visited five different nursing homes she came in and treated me like an adult. She told me she only had bad news. I was going to hate it there. She's always correct. We chose the nursing home that had physical therapist that were trained by the same people who trained mine in the hospital. They will all associated with NYU Langone/Rusk.

There are three pictures here. The cell on top shows a picture of the front door of Gouverneur. In the middle shows the side of the building and a tree. That's what the tree looked like on the day I went home. Leaves are starting to fall and there's a little bit of yellow in the leaves. I remember looking out that tree out my window all the time. I remember that I walked out of my house on May 7th and it was now getting to be the middle of September and I still wasn't home.I hated the fact that the tree was changing. I had missed the entirety of the summer. 

Governor was a shit hole. So many people on the staff were looking at it as their second job and was sleeping through their shifts. I needed help to go to the bathroom and I remember once pressing the call button i'm waiting through two episodes of Law and Order and no one came.So I fumbled around for my phone and called the main number for the nursing home.Then I asked for the nurses station on the 5th floor and all the head nurse on my floor that it was Michael Ring in room 515 and that I really had to pee. A nurse's aide came running in minutes later asking me why I had to call the hospital for help.I told them I rang the bell 2 hours ago and was waiting here and that they couldn't even hear me call.She denied that. I didn't really care what she said It was the culture of that place to treat patients like shit.If you Google Governor and Covid you'll find out it was kind of the center of death during the pandemic.I've lost sleep imagining what it would have been like if I would have had GBS during covered.

There's also a picture of a park bench out there. Directly across the street from Gouverneur was it playground attached to the LaGuardia houses. During the months that I was in Gouverneur I was often given a pass to go outside. It was kind of hard to be pushed around the neighborhood so going outside mostly meant going across the street where my kids or my family and my visitors would sit on the benches. I was using a wheelchair and was unable to transfer myself onto those benches. I remember looking at that bench and wishing I can sit on it.All I wanted to do was sit on a real chair and stretch my back.When I finished my run yesterday I sat right there and cracked my back.

Leaving Governor wasn't easy. After the first week being there because of the incompetence of the social workers they were going to transfer me to a place where I was going to get palliative care. Someone checked a box that I was never going to get better and I didn't need to be in a nursing home that had physical therapy.After that I had to appeal my termination of care every 3 to 5 days.I hated it there. Anyone would. Physical and occupational therapy was pretty good, but other than that the place was a nightmare. Besides having to beg to go to the bathroom the food was commonly terrible.I was mixed up with people who had dementia and who were clearly never going home.But the culture there was that everyone had dementia and no one was going home and we weren't worthy of respect.Once I realized it only took me one person to transfer me to a bed from a wheelchair I told him I was ready to go home and they were shocked They thought I wanted to stay there forever.

Anyway, it's been 10 years and I'm not fine. But then again I don't think I was ever fine. I've had more than a handful of surgeries but I haven't had any relapses. I run at literally half the speed that I used to run. But I run. i hate saying expressions like " the new normal" or " it is what it is" fuck that shit.I love, literary love the people like met only because I've become disabled. But don't get me wrong. I would chop off any given limit to make the other three work perfectly again, and to have never gone through this shit. Fuck you GBS

Below is a picture of the run I did yesterday