2014-02-11

Surviving a hospital visit

You may wonder why we haven't been doing quite as exciting things lately.

News

Well, around Christmas Jess had a medical emergency. She had a spleenal hematoma, basically a blood filled cyst on her spleen, apparently due to trauma. This also seems to have caused a secondary blood infection which is actually what we took her in for originally, a fever of 107. After a couple of hospital visits they figured it out and drained the hematoma of about 2 3/4 liters of fluid. It was so huge it was pressing on her heart. Shortly after she was sent home on IV antibiotics and with the drain still in place. Both have finally been removed now and she just isn't allowed to "bounce" for 3 months according to the doctors. No running, offroad driving, etc. But, she's basically back to normal already, no long term complications expected, and she gets to keep her spleen, yay! If you're curious, the spleen is part of the immune system, so it's a nice thing to have.

So, that's the news part. Now, in this process we learned a lot more about our medical system. For one, no matter what people say, the medical system is extremely valuable. Jess is extremely healthy, and does everything right. Apparently she fell causing the hematoma. There's no way we could've safely drained her at home, and with the level of infection full scale commercial antibiotics were very much called for. It was bad enough that at one point they had her on Vankomiacin, which as it turns out, is one of the major backup antibiotics of last resort, one used for highly resistant staph for example. It's also crazy toxic to humans and makes you pretty sick itself, happily after they finished the cultures she could be taken off it.

Surviving a hospital visit

Get basic medical training

Jess quickly learned to tell just about everyone she talked to that she's an EMT. Once she did they often actually relaxed when trying to explain things. They could just use the words in their head instead of trying to simplify and use normal terms. She also used the jargon herself liberally to encourage them to.

There are two reasons jargon is important. Once they know you are technical in the area they know you are likely to react as a medical professional, rather than a patient. Second, the jargon is far more precise, and allowed Jess and the doctors to communicate quickly and efficiently..

I wouldn't try and get an EMT just for this purpose, it's too much work just for that. But I would recommend getting a Wilderness First Responder (WFR). It's not quite as good, but still gives you the basic terminology, and it'll help you get to the hospital in time. Even though Jess is an EMT she was so sick that I ended up making a lot of calls. The evacuation criteria I learned as a WFR were useful even in the front-country as they gave me lines to say "No, this is bad" and stop trying to rationalize not going to the hospital.

Keep asking questions

Make sure you know *everything* they are doing. Every medication you take. Every procedure they do. Understand what they think is going on, and what the other possibilities are. What are the other options besides what they are recommending. If it goes poorly what happens then?

This is especially true if you won't be conscious, or all there. Jess was quite adamant that she wanted to keep her spleen if it was at all possible. She told the doctors this, but also checked in when they did the drain procedure, asking what happened if her spleen started bleeding out, and how much they would do "on autopilot" that is, before she had a chance to be fully conscious again and tell them what she wanted.

Usually all of this didn't matter, but sometimes it did. Frequently doctors didn't know exactly what was going on, or what other people had told her, so being the center of information can be useful. She frequently corrected doctors as to what her status was, what her diagnosis by another doctor was, or other critical information about what was going on.

In fact, in one case she went against the recommendations and self-transported from one hospital to another. We drove her. She asked a lot of questions, and they couldn't give her any good arguments why she shouldn't. After some consideration she concluded that she would get help faster if we self-transported as non-emergency transports are the lowest priority for hospital companies. We moved her that same day and as a result they were prepping her for procedures by midnight that night.

Be pushy

This ended up mattering a lot more due to Jess looking quite young and being female. In general there were no issues, but some of the doctors required her being pretty pushy to really get all of the data and all of the answers.

In the first hospital, Jess was sent home and neither Jess or I was happy with their diagnosis. It just didn't make sense. We knew she had more than a simple infection, yet we let them send her home anyway. Had we pushed harder we could've avoided a second ER visit, a couple of days of unpleasantness, and her problem getting as bad as it did. If you think they're diagnosis is wrong say so, and explain why.

One of the more interesting instances involved everyone being wonderful actually, but Jess hadn't eaten since midnight due to a planned procedure. Their were many doctors on her case as it was an interesting one, and they were debating about what to do. Doctors came in occasionally to tell her what their plan was, and invariably got paged about new information and new plans. This was all due to everything working right, the doctors all debating and considering deeply, and yet pushing to make progress soon. The problem was, Jess had barely eaten for over a week, at some point her blood sugar was crashing. She started pushing really hard on the nurse to get the doctors to either let her eat, or commit to a procedure. This resulted in them settling on the procedure, but swapping her saline solution for a glucose solution for one bag of IV fluid - so she'd be okay for the procedure.

Know your body

Jess' blood pressure runs a touch low, her temperature runs a touch low as well, but she gets fever's at the slightest provocation, almost any stress. This was really important to know and pass on to the doctors, to explain what her baseline was. No the slight fever doesn't mean she's fighting an infection, and similarly low blood pressure doesn't mean her heart is having trouble. During the procedure her skin got blotchy due to elevated blood pressure from the pain. The nurse got really nervous and Jess had to explain that that wasn't an allergic reaction, her skin just does that when her blood pressure spikes.

Remember that you can refuse treatment

This is a big one. You can always say no. During the Vankomiacin, which was inflaming her veins really badly, one of the nurses actually reminder her of this. Jess had planned to refuse the next dose, but they canceled it due to a culture coming back negative. She never had to, but this is a power you have. In particular if a doctor or nurse is pushy or doesn't want to explain, you can always say no until they explain to your satisfaction. Jess got a lot of encouragement actually from the nurses for her dogged push to really understand what was going on. So don't be mean, do it politely, after all these people are trying to help you, but realize that asking and pushing for answers is your job.

Get to a good hospital

Lastly, Jess started at a little local hospital. It was pretty mediocre overall. The medical director was from Infectious Disease, and was really cool, but her other doctor really didn't want to explain things in detail, and didn't understand Jess doing things like rejecting pain medication because she wanted to know if the pain got worse.

Once that hospital decided they couldn't handle her she transfered to UVA. They were absolutely amazing. She slept better at night because they tried to keep it quiet instead of emptying the trash at 1am. Her bed didn't shake continuously (since it didn't need to, she could shift herself easily). The doctors explained things and had Jess direct what happened. Progress was made in hours upon arrival while it had taken days at the previous hospital. Their radiologists could tell orders of magnitude more from the same MRI and CT scans than the ones at the other hospital could.

If what you need is a hospital now, go to one, but if it just doesn't seem good look at transferring - especially to a teaching hospital like UVA. After this experience, for something that can wait, I wouldn't hesitate to drive several hours to get to a better hospital.

1 comment:

  1. Eeek! Ever since my systems immunology course, blood infections give me the heebie jeebies. I'm so, so glad you're doing better! Yay for saving the spleen, too!

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