Home vs. the Hospital: which is safer?

Disclaimer: If you are nearing Myasthenia Gravis crisis, get to the ER, immediately and don't even consider anything I'm about to say here. Again, nothing I say should be used as medical advice and I am not a medical professional, simply a patient with way too much experience.

Everyone knows about the risks involved with staying in the hospital... it is filled with sick people, so you risk catching something in addition to what you are there for. But that's not what I'm going to talk about today.

Home vs. Hospital: which is safer?

Myasthenia Gravis is a rare disease. POTS/dysautonomia is not rare but it is not commonly understood. Combine those two together along with other health problems and its a pretty good recipe for disaster.

There have been a countless number of times that my blood pressure drops way too low, my oxygen saturation gets into the 80s, I have no energy to even get out of bed, I feel like I'm about to pass out, my breathing is labored, I have difficulty swallowing, I can't walk. And yet, I have waited it out at home.

Why? Because I know that odds are I will immediately be written off as "just anxiety" as I get into the ER, even if MG and POTS are on my medical record, because next to no one understands these conditions. I will be given more radiation with a chest x-ray, because for some reason every time you go to the ER they just have to x-ray your chest. I've had pneumonia, I know this is not pneumonia, but they don't know until they make you pay for more radiation. Then the medications, oh the medications. This pill, that pill, every pill, for every symptom. My body does not do pills, period. Each pill I put into my body acts as poison so I try to stay far far away. And then the one pill that you need, at a specific time, just happens to never be available. But tell that to a nurse or doctor that doesn't know your history and you get written up as "non-compliant." Many many many medications can make MG go into crisis and can make POTS worse. There is a list and I have it, but doctors and nurses often like to ignore it.

The stress of being in a hospital is sometimes enough to put someone in crisis if you aren't already in crisis. You yourself have to watch every pill they try to give you, every IV that is hooked up and make sure there are not any big air bubbles. You are given the yellow wrist band which means fall risk and so you are confined to bed unless a nurse helps you. When you call for a nurse they are no where to be found and you get up to go to the bathroom and then get yelled at. They put a siren on your bed. So then you are forced to stay in bed and again more at risk for a blood clot. It seems, sometimes, in the hospital- you just can never win.

Plasmapheresis would help, but then I risk getting another pulmonary embolism or bleeding out. Oxygen would help but they won't send me home with it because they have to witness my ox sat drop below a different number at the exact moment they want to see it, it doesn't work that way. IV fluids would help, but even getting that ordered is sometimes next to impossible. And so, if I'm not struggling to take one of my could be last breaths, I just struggle on my own at home and wait it out. I rest. I increase my fluids. I don't eat if I'm having trouble swallowing. I don't walk if my blood pressure is so low I'm going to pass out. I just... wait.... and hope it doesn't get worse.

Finding a doctor who knows how to treat one of those is one heck of a mission. Finding a doctor who knows how to treat both... treat both well... let me know if you ever find that one. Even if you happen to find this doctor, it is not certain that this doctor will be at the closest hospital, doing rounds. Even if that does happen, will the nurses follow strictly what the doctor says? Will the prescriptions be there at the exact time you need them? Will the stress of having to manage your own care send you downhill quicker than if you just waited it out at home?

This is why awareness is SO very important. Doctors, nurses, pharmacists, nursing assistants, friends and family all need to be aware... to understand what MG is, what POTS is, what the symptoms are, how to treat it, and most importantly that each and every MG or POTS patient is different and what works for your last patient may actually be something that puts my life at risk.

Chronic illness needs to be chronically maintained. Family, friends and the medical team need to walk side by side through this entire ride, because what I'm going through is completely different than what another patient is going through. What I need for treatment may be completely different than what another needs for treatment. Because if you just hop on and hop off you just get a small glimpse, without the full history, and that's not enough to treat ME as an individual. Unfortunately, the medical industry doesn't have nor typically take the time to look at me as an individual on a case by case basis. And this puts me at risk. And so I come back to the question of which is safer? Home vs. the Hospital.

Let's make an effort to make that answer a clear "hospital." Let's make everyone with a chronic and/or rare illness feel comfortable that they can go to the hospital to get better, not get worse. Let's do that by spreading awareness. I'm sure most of you have jumped on the ice bucket challenge bandwagon, so now, jump on this. Spread awareness for everyone suffering from Myasthenia Gravis and POTS. We sincerely thank you!