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Wednesday, 18 December 2019

DKA and a displeasing encounter

Thursday 28 November saw me sitting in A&E feeling like I was burning on the inside. I'd been feeling unwell in the days prior, and I'd been in A&E on the Sunday with extreme pain in my side that they couldn't find a cause for. All the pain and the stress and all the symptoms of an infection came to a head on that Thursday, my blood sugar shot up and wouldn't budge. With no means of testing my ketones I decided a safe bet would be to go via A&E on my way home from work. I got on the tube, found a seat, and sat down for the 4-stop journey to the hospital, I didn’t feel too horrible but I think adrenaline was keeping me going at this point. 

I was thankful to be greeted by a waiting room that wasn’t too busy, and a receptionist that knew what I was talking about when I mentioned ketones; “Oh yes, someone came in with those yesterday actually!” Making them sound more like a bag of sweets than a potentially life threatening situation but I was grateful for his competence. If you’ve ever been to A&E with high blood sugar then you know the drill. Within half an hour I was in Majors, in DKA, with blood ketones of 6 which isn’t what I expected at all.

I was hooked up to all the necessary equipment, IV insulin, potassium, saline...a heart monitor that screamed every two minutes in discontent at my heart rate of 130. Within a few hours all was calm again, my heart wasn’t trying to beat out of my chest, my blood sugars were at a more manageable level of 18 and I sat and listened to the nurses arguing with the doctors outside the room about who gets to use the computer first; “There are PLENTY more computers around the department, this one doesn’t have YOUR name on it”. 

I settled in to what would be a long night, but I was feeling better and all was under control, or so I thought. Then came an overwhelming feeling of sickness and a headache that had me wriggling in discomfort. I knew it was time for a ketone test in the next few minutes so when the nurse came in I made sure to look at the result before she whisked the meter off, 6.1. 

2:30am rolled around and I was feeling incredibly unwell, now in Resus. For some reason they couldn’t get my ketones or my blood sugar under control, and my blood pH was now 7.0 and I was in severe DKA. I’ve never felt heart burn like it. My veins had disappeared into the depths of dehydration and the usable veins were inhabited by cannulas. After about an hour in Resus, a blood gas that wasn’t getting better and no means of getting blood out of me ITU were called to assist by means of an arterial line and at 4am, after 10 hours, I was admitted to ITU. 

I spent 6 nights in hospital, 5 of those in ITU with one night back in DKA, potassium that wouldn’t come up and a heart rate that was concerning the consultant. On the Tuesday night I was finally transferred to a ward, it was so quiet and peaceful and worlds away from ITU. I finally slept more than 3 hours and I was discharged on the Wednesday evening, back to health despite the jelly legs on the train home. 

I’m not telling you this for attention, or because I want you to feel bad for me, I just know that I went through quite something in those 6 days and with my stubborn nature I like to downplay things sometimes, and if you ask me about it I’ll tell you all it was, was boring and tiring; “but - I’m okay now!!” And I am, but I can’t ignore the fact that diabetes really tried it on that Thursday night. I’ve never felt so unwell with diabetes and I know how serious it was. 

Before I finish this blog, I'll take you back a little bit to the Monday evening. I’m reading my book and a doctor walks in, introduces herself as the consultant and I turn my attention to her. She asks me how long I’ve had Type 1 diabetes for, so I tell her, 10 years. Okay she says, then moves on to her next sentence, in the most patronising tone I’ve ever heard; “So, there’s a little test we do and it’s called a H B A 1 C test, do you know what that is? Ever had one of those?” Erm, yes. More times than I can count on two hands, because I’ve had Type 1 diabetes for an entire decade. “Well yours isn’t great” I told her I recently had it tested so I know what it is. She was smiling, but she had her eyes scrunched up like she was scrutinising me and every answer I had was met with “Hm” and with that same facial expression, she moved on to her next question; “Are you aware of the complications of diabetes?” Yes I am. “Go on then, list them.” 

Never in my 10 years of living with diabetes have I been asked to list the complications like it was some sort of test. I told her I wasn’t going to list the complications, she persisted, until I just said no. And she stopped asking. She smiled again, eyes scrunched; “Well, I’ve seen people younger than you who are blind. You’re half my age.” Was I meant to congratulate her on being older than me? On making it through her twenties care free? On not having to grow up with this responsibility?  I didn’t even have the words to respond to her at this point and I certainly was not going to get upset in front of her so I just said okay, and thanks, over and over until she stopped.

If the lump in my throat hadn’t been preventing me from stringing together a proper sentence I’d have had words, but I saved my breath and let the tears well up once she’d left me alone and I spoke to my mum. Once I was done being upset I felt annoyed, annoyed that she made me feel like that and annoyed that she judged me so badly. I am not a number, my life is not what my hbA1c is - my hbA1c will not tell you what’s going on in my head, it will not tell you what’s going on in my life outside of diabetes, it will not tell you anything that justifies talking to me like that. 

I understand that she was just “doing her job” but there are ways of saying things, ways of doing things. I wonder what she thought she was going to achieve by asking me to list the complications of diabetes? Scare tactics do not work. Do not make me feel hopeless, trying to scare me will only make me feel worse and you will not motivate anyone to do better. Not a day goes by that I don’t wonder what my future looks like, so how dare she, as someone who doesn’t even have diabetes and wouldn’t have the slightest clue what it’s like to live with it day to day, ask me to prove to her that I know I could go blind, or develop kidney disease, or lose a limb? It's drilled into us from the day we are diagnosed and I do not forget it.

I am so aware of the risks, and it’s so demotivating when you are trying so hard to avoid them and people like that remind you...remind you of the fact that you might pay the price for a disease you didn’t ask for, or cause, but somehow like magic, overnight - we are expected to be perfect, at 11 years old, 18, 22, 30, 45 whatever age you are, at managing diabetes. All while trying to grow up, fit in to your new school, buy a house, grow a family, whatever it is, whatever stage of your life you're at and go through all the other crap that life will likely throw at you that has nothing to do with diabetes. 

I’m not asking for sympathy in telling you this. Most of the time I’m totally fine with diabetes, I get on with it and I try not to dwell, but I do just have to get that encounter off my chest and I cannot ignore the fact that life with Type 1 diabetes is not easy. The bruises on my arms that would have a lot to say for this admission are finally healing, but this admission will stick with me, and her conversation will stick with me, but for the wrong reasons and probably not for the reasons she thought when she introduced herself to me that evening. 

8 comments:

  1. Good blog thanks for writing about your experience and v sorry to hear re poor approach from consultant. She def needs educating re pts as experts #wearenotwaiting !

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  2. Great blog dear Twitter friend. I am really sorry you had to go through all that, including having to deal with a consultant that could and should deal a lot better with someone in your position . Maybe she didn't want be there that day, but you didn't want to be there either . Be strong.💪

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  3. Hi. I thought this was a really great blog post. My son (10) has T1 and it’s real accounts like this that help me to help him. Stay strong Ellie.

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  4. I have been so fortunate to not have experienced DKA in my 45 years with diabetes. I appreciate your wonderful blog.

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