Against Medical Advice

“It was by the skin of your teeth this time. Literally.” Male nurse with fellow mutant pancreas says, preparing to take out my central line.

“I know, it was one of the worst episodes I’ve had.” I reply, having been told enough times on this admission just how close I came to death.

“It does’t get worse than that, trust me – I used to work in intensive care so I do know what I’m talking about.”

“How do you even know it was that bad?” I wriggle into the comfort of my denial.

“I can read can’t I? I’ve seen your notes.” Damn. My body’s reputation precedes it.

“Normally managed people have a buffer before things go so wrong. You don’t have that. It won’t be there now. You’re too unstable and this case was so severe that your body will snap back into that state much quicker and much worse, you do appreciate that, don’t you?” I nod, not really letting what he is saying sink in because if it never gets in it can never linger and stagnate and tear me apart.

Before we leave he has a long chat with me as my fellow third wheel packs up the wheelchair. My bloods are already skewed because we checked them an hour after the central line was out just out of pure curiosity. I think he regrets removing the central line. I certainly do. I tell him I’m scared and he asks if I am ok again. He goes on and on about how unstable I am and how serious this will be and how quickly it will get so bad. Over and over like a stuck record he tries to hammer home that this could kill me, how bad this time was, as if I have any control. Finally his dramatic and over-serious conversation (or, as my fellow third wheel puts it – realistic) draws to an end.

“You can’t afford to watch and wait. The second you start to feel unwell or you lose control, you go straight to a hospital. I know you want to avoid them but you need to go. This case was so severe that you are going to deteriorate extremely rapidly in future.” He goes on about how serious things are, about how we have to monitor my condition in the car on the way home and then he looks at my fellow third wheel with a strict plan and addresses him instead until the severity has been drilled into his brain.

“This can kill. It will kill. It very nearly did. You know that. You can’t go through an admission like this again. You know that too.” I thank him, and he lets me leave, his concern evident in the look on his face.

“He’s a bit of a drama queen.” I say.

“With reason. You know he’s not.” My fellow third wheel says. We are both a little terrified, I think. I’m not sure what I say next, I probably try to play everything down to reassure him, but his response is, “You nearly died last week. It doesn’t actually medically get any more serious than that.”

He wheels me out the front of the hospital and his dad meets us with his car. His dad is lovely. He leaves my third wheel and I in the car and goes into a supermarket to buy us drinks and food for the journey. He tells me off for apologising and is so kind and understanding about the fact that bodies can be poops and tells me there isn’t anything that can be done about it and that we are humans and we all help each other. I thank him every few minutes. In the end he gives up protesting and just tells me I am more than welcome, but he won’t take the money I keep offering him for petrol or for the food.

We haven’t even been in the car for an hour when it all goes wrong. My fellow third wheel’s dad diverts the car into Ipswich after we call the ward I just left and speak to the nurse who gave me the long talk about how serious everything is and he tells us to go to the nearest hospital with the discharge letter we were just given and explain everything. Urgently. Now. Without waiting to get to Kent. He sounds extremely concerned on the phone apparently. Good. I hope he’s bricking it. I hope it feeds back to the consultant who didn’t listen to me when I explained that my bloods were fine on IVs but usually took a few hours and then suddenly deteriorated very rapidly. I hope she is terrified for a second or two. I want her to know. I was right. Unfortunately, I was right. And he knew this would happen. She just wanted me out of her hair because she had no idea what to do.

My fellow third wheel voices his disappointment. If I had money he’s gladly leave and let me get a taxi home. His dad is unfortunately as stubborn as I am and refuses to leave me. We sit and talk while my fellow third wheel wanders off, and he says I shouldn’t apologise, that we are all humans and we help each other and he doesn’t mind at all. He won’t leave. Neither of them will. Like father like son, I guess.

The nurse is horrified when she sees my bloods. I knew she would be. She is not in favour of me getting in a car back to Kent and going to my local hospital (which I have no intention of doing but say because everyone wants to hear). She wants me to be seen by a consultant. I know I will be put in resus. I know once they see my bloods they won’t let me leave. I don’t want to be admitted so far from home now that it is clear neither of my teams will have me moved closer to EVERYTHING I KNOW. My faith in hospitals and doctors is currently non-existent and this hurt and betrayal lingers on my mind. She tries and tries to persuade me to stay. Her consultant wants to take me through. I sign a self-discharge form saying that I am leaving against medical advice, and she tells me to go to my local A&E and gives me a copy of her triage paperwork. She says if on the way I get any more unwell or start to feel as symptomatic as I should be, I should just immediately call an ambulance no matter where I am. I lie and tell everyone that I will. In truth, in that moment, I have decided I’d rather just not do any of it any more. This isn’t logic or truth speaking, it is emotion and fear and hurt. But it is speaking loudest, and it wins.

My fellow third wheel pushes me back out to the car in the wheelchair his dad grabbed upon our arrival, and his dad helps me into the car. We head off for Kent.

I wake up with my fellow third wheel (who is sitting behind the driver’s seat, and I am sat behind the passenger seat) asleep with his head resting on my shoulder. I have fallen asleep in turn with my head resting on his. I’m not sure how we ended up arranged this way, I figure he must have fallen over, but it is very warm and I attempt to move him back. In his sleep he jumps, tenses, and sort of moves away a little bit. I sleep until we are almost at my house.

My dog flies at me, ecstatic. My fellow third wheel helps me walk to the front door. He’s already had to hold me up and walk me to the bathroom today, and wheel me into a disabled toilet. He’s watched me almost die and seen me in many highly undignified situations over the past week. We hug in my hallway. I thank him. I apologise. (Even though I have been doing both of these things ever few waking moments the entire way home).

I am extremely dizzy and the symptoms I know to look out for are slowly beginning to build. I crawl up the stairs, wondering if I will ever see them properly again, a time bomb ticking in my veins.

Against medical advice, at 3am (well, at this stage 4:20), I sit and write a couple of blog posts instead of seeking medical help. Because my local hospital were not willing to help, and I feel too awful to bother them, too scared to approach them as a result.

 

They’ve given up on me again and I do not want to die. I want to fight them. I should not have to fight the people with the power to save my butt just to get them to try. I should not cry at the thought of their faces. I should not be too afraid to seek their help, too ashamed and let down and unable to see the point of doing so.

It’s here again already.

And one time very soon there will be no way through.

Advertisements

5 thoughts on “Against Medical Advice

  1. Well, at the start of this post, you got an actual laugh out of me when you described the nurse as dramatic and were corrected that he is actually realistic!

    Then, I wished I could give you a hug! While I have never been at death’s door, I have been let down by doctors. I have had them not listen to me. I have had them do the opposite of what is documented as having helped me in the past. I have had them become overwhelmed by the complexity of my case and not want me as a patient anymore. It sucks.

    In terms of getting the help I need, I am still not better, but like my team. I know our healthcare systems work differently, so you might not be able to choose your doctors how I am able to, if I understand right? In terms of communicating in a way they would be receptive to, I found learning their lingo was helpful, and having medical journal articles to support what I say helpful. I found anything I can do to make consults go more smoothly helpful. For example, I am really organized so they don’t have to spend the little time I get with them shuffling through papers. I write outlines of my history that is relevant to their area, what has and hasn’t worked and why and what other doctors have to say about it.

    As for the emotional part; that was tough. Doctors go into their field to help, so if they were blowing me off, it felt like a betrayal. It felt like it must either reflective of me, or mean I judged the doctor to be a good person who would help me when s/he didn’t care. What helped me was reading fiction and nonfiction books about medical school and being a doctor. Understanding what they go through helped me understand where the doctors were coming from, and helped me understand it is a reflection of them, and the state of medical care, not me. Having a young patient who doesn’t get better is hard, and it takes an awesome doctor to handle it right!

    I don’t know if any of that is helpful or relatable, and I’ve been meaning to write a blog post on the topic… but there it is.

    I hope you go to the hospital if you need it. It’s scary to need to be such a strong self advocate when you’re at your weakest physically. It isn’t how it is supposed to be. The good doctors hate it as much as we do. They are given so many patients and such little time.

    That doctor who removed your central line despite you saying what would happen is ridiculous!!! Given what you’d just been through, I can’t imagine the risk of leaving it would be more significant than the risk of complications that you *know* happen from coming off it.

    I’m happy you have people like third wheel and his dad to support you. It’s clear how much you appreciate it!

    Well, that got long. I hope you were looking for a book to read. 😉

    Liked by 1 person

    • Thank you so much for this. So, so much. I feel so much less alone in this all. I had a London consultant for this health hiccup that was amazing and had so many plans of what she wanted me to try. She understood my PTSD and wanted to admit me for a while to sort everything out but realised she had to wait. She wanted to sort out long-term IV access. She was beyond fantastic. And then I went to uni and the London hospital local to my uni would not transfer me to her when I was admitted, told her they were taking over my care and couldn’t be bothered to try anything so I started to bounce from ITU to home to ITU. I am furious now that they have made it so she no longer even replies to my emails and yet they themselves have done nothing when we were actually getting somewhere.

      These are excellent suggestions and I carry with me a summary of the most pressing bit of my medical history. It helps and worked wonders this time yet somehow there is still Chinese whispers and miscommunication between doctors I encounter and the doctors who know me. Uni mum is a graduate medical student who works in an emergency department and was horrified at the states I got into during my first or second admission to the hospital nearest my uni. I nearly died many times. I was judged. The damage was done before they realised what they were doing, and when they nearly killed me and accepted they couldn’t just treat me like a typical case, that was it. I started having flashbacks and nightmares of their faces and the things they did.

      I now do not know where to turn. I am helpless and furious and exasperated but I am also moved beyond belief by your comment and the time you took to write it. It was so helpful and somehow has made me feel a lot better just to know that someone can empathise or understand. Now, I only woke to check I am still alive, so there may be a long delay to any future responses. My health is still throwing itself off of a cliff and I remain too terrified to ask for help. Stupid yet instinctive.

      Like

    • Also glad I made you laugh, that knowledge makes me smile! And my fellow third wheel has genuinely astounded me. I cannot believe his kindness. He has been beyond amazing and I still cannot comprehend that people can or would be so selfless and amazing and… Present.

      Like

  2. Here in the US wr have small community hospitals that are not equipped to handle complex cases and we have larger hospitals that are good for specific things. And for very complex people remember, the inexperienced expect your medical condition to react the way most people react. You are your best advocate. Perhaps you can getva letter from your specialists to take with you when you travel. Or can you request local hospital doctor call your specialist for answers?

    Sending positive thoughts and well wishes to you. Glad third wheel and his dad are on your side. Good people really do exist.

    Liked by 1 person

    • Good people do exist you’re right – this comment is proof of that. Things should work that way here in England too but they just aren’t. My teams are refusing to take responsibility and I am paying the price for that with my health.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s