The odds are that you or someone you love will be hospitalized at some point. My sincere hope is that you will never have to use any of the suggestions in this article. We recently learned from her NYTimes editorial that our friend and AGEIST profile Annabelle Gurwitch is having a very tough time and, because of her illness, stage 4 lung cancer, she is highly engaged with the medical system. Her particular illness is not something I have knowledge of, but the medical system at that level is something I do. Annabelle, you are in our thoughts today as I write this.
At about 50 years old, I spent the better part of a year in a hospital as a “science project” due to my having contracted ITP — idiopathic thrombocytopenic purpura. That is the Latin for “you seem to have a problem bleeding and we don’t know why.” One thing about autoimmune disorders, and their inverse disorder, cancers, is that there is no run-of-the-mill average occurrence. They are all weird, all unique, and all special. You can have an average broken arm, but I have yet to hear of an average, regular old autoimmune disease. Modern medicine is fantastic at things like hip replacement, it is much less so with things like cancer and autoimmune. Which is not so say they don’t do incredible work, they do; I’m still alive! It is just that it is all sort of an experiment on a group of one, you, to see what works.
I spent the better part of a year inside a hospital with a Stephen King-level freaky, highly life-threatening autoimmune disorder
For my adventure in hospital land, I spent the better part of a year inside one with a Stephen King-level freaky, highly life-threatening autoimmune disorder. The most common demo to get this fun thing called ITP were children under 10, and women post-pregnancy. I was the only man my age in the ward. It was weird. But like I said, in the world of autoimmune, it is all weird.
I became the pet science project for my doctor. Thank god I lived in NYC and the world’s foremost authority on my ITP was at Cornell Medical Center. That got me access to a range of off-label drugs. Good, except they didn’t work, and they really messed with me. Pro tip: doctors are doing their best to keep you alive; comfort and functionality are not that high on their priority list.
Every two weeks, to keep me alive they would give me an IVIG, at $28,000 a wack. My insurance covered it. Gold star for Oxford Health Plans. The total cost of my adventure was well into 6 figures.
In the end, I opted for organ removal: my spleen had to go. Not the first choice of any sane person but, with a 60% projected remission rate, I went for it. That was years ago, and I am fine today. I am also the most maximally vaccinated person you will ever meet. I am a pro-vaxxer, as a small blood infection could kill me.
My 8 Practices for Hospital Visits
Here are some things I learned and continue to practice when I see a doctor or, god forbid, should I ever have to go in-patient again.
- I refuse to be kept alone in a closed room or doctors office in the hospital. No. Fuck you. Keep the door open while I am waiting, or you will find me at the nurse’s station. I still do this today. I refuse to be out of sight in a closed room. I find it insulting and degrading. Covid makes this one a bit tricky. I keep my KN95 mask on 100% of the time in a doctor’s office unless they want to look down my throat.
- Nurses are the key. They run the place. The doctors are useless without them. Make friends with them. If you are in-patient there will be a head nurse for whatever wing or section you are in. Find this person and make them your best friend. They have tremendous leverage over how you are treated. The docs will be trying their best to be friendly, but that is not a med-school graduation requirement.
- Unless the doc has taken the drug, or had the operation, don’t believe what they say about its side effects or the recovery time. They don’t really care about that. Really they don’t, it is not what they are interested in. They are interested in long-term outcomes, which you should be, too. Assume that unless they have personally experienced whatever they are about to do, they will minimize the side effects. For instance, when they did my spleen removal, the surgery was done via tiny holes in my abdomen. It was one of those medical wonders. The downside was that they pumped my abdomen full of gas so that it would stay inflated while they worked. But one’s body is not really designed to be a balloon. The effect was horrific debilitating abdominal pain for 2 days until my body absorbed and removed the gas. They never mentioned this pre-op.
- Having gone through this ordeal, exhausted, unable to work, or even think clearly for a couple of years, I learned next to nothing new about the meaning of life. People expected me to, but I didn’t. We just sort of move on to the next thing. It may have sunk in years later, and I think it did, but it took a long time. Hospitals and white-light wisdom experiences don’t always go together.
- It was super hard for the people around to really believe what I was going through — some sort of human psyche defense mechanism. I would be exhausted, unable to function, but people would assume I just needed a nap, not that I was in serious trouble.
- There were only a handful of people who visited me in the hospital that year. Everyone else was “busy,” meaning terrified. Severe sickness in others sometimes brings out compassion, and more often brings out self-centered fear: “I don’t want to catch what ever you have.” The people who did visit have been elevated to sainthood in my world. These are the people who walk the talk, and whenever they need anything, I am there for them, for life. But for the others who couldn’t see me, I give them some slack. I get it now. They were just dealing with my illness as best they could.
- In spite of all the experiments on us patients and the docs oftentimes not really knowing what to do, understand that medical science is rather incredible, and advancing at a remarkable rate. What was fatal a few years ago, is treatable and survivable today. Not all, but many diseases are no longer the killers they were. Science works.
- I send cards of thanks to my docs every holiday. It means a lot to them as for the most part, we patients are in and out. When we treat our medical professionals like friends, they respond. In my experience, it is rather mind-blowing for them to get a holiday card that says thanks for taking care of me, and thanks for keeping me alive. It makes their day. I recommend it.