DKA - Crash Bang Wallop

Perhaps I tempted fate 4 weeks ago with my proud celebration of going 2 years without DKA (diabetic ketoacidosis). Maybe I should have prepared better for when it hit again. I just didn't expect it so soon... not when I had everything under control.

 

It all happened so suddenly - One minute I was in bed, listening to friends drunkenly singing along to a guitar downstairs as I drifted off to sleep, the next I was stumbling around getting dressed and launching myself out of my partner’s house, clutching my stomach and telling him not to stop me from leaving.

 

Somehow I made it home and crawled to the bathroom on the ground floor. My mum slept soundly two floors above me and couldn’t hear me vomiting crying or reassuring myself that the sickness would pass. At that stage DKA hadn’t crossed my mind – I thought it was a stomach bug, but as the hours went by the vomiting continued. 5, 10, 15, 20 + times… each time I was feeling more dehydrated, finding it harder to catch my breath and I was becoming weaker.

 

At 6am I accepted that I couldn’t get through this on my own (even with Iain the pump chugging away). I fell into my mum’s room and she immediately called an ambulance.

The next 24 hours were a blur – I went to A&E and was taken to resus so I could have my own nurse. The intensive care team came to asses me and made plans for another move.

On admission I was leaning towards DKA - Blood sugars were 20.4 ketones were 3.5 and PH levels were 7.33 However IV fluids and insulin were not correcting my levels and after an hour or so this resulted in sugars of 30, ketones of 4.9 and PH levels of 7.21 - I was later told this was because the first response who had initially cannulated me had some difficulty, leading to fluid collecting in the tissue of my hand and arm instead of doing its job sufficiently, causing cellulitis – bring on the Simpson style chubbiness and days of IV antibiotics to correct it. 

 

Cannula number 2 of 6

 

One of my biggest worries was what to do with Iain the pump. I’d only had it for just over 3 weeks and I didn’t know what to do regarding sickness and temp basal rates (TBR) yet. I’d increased the TBR to 130% the night I became ill (this was a guesstimate) and I’d left it at that rate ever since. No one that was looking after me knew what to do with an insulin pump, but what worried me the most was that I wasn’t given any direction with it at all. Should I leave it on or take it off? No one knew! A sliding scale had been set up with 9 units of insulin an hour and Iain was still pumping away at 130%

 

Dangerous? Yes I’m sure it was but I was barely conscious and couldn’t make the decision for myself. The staff were concerned, I could see that, but I could also see that they weren’t confident in giving me pump advice – it was a treatment that they didn’t come across often.

 

After having 13 litres of IV fluids pumped through me I woke up the next day to sugars of 5.5 and I turned Iain’s TBR down to 50% (again a guess) as my sliding scale was still up. My diabetes team came to see me and advised me to stop the pump. Hurrah for people who knew about pumps!

My arms & hands took a needle battering so the Drs had to cannulate my feet instead!! Ouch!!

 

The next day I was told that I was out of DKA but I was still acidotic and as I was still vomiting the sliding scale stayed for a further 4 days. I spent the rest of my time on a ward and I was told that I had food poisoning. I was completely exhausted and I felt worse than I ever had done with DKA – not just physically but emotionally. I barely spoke to anyone but was comforted by the fact that Partha (a consultant from my d team) came to see me every day. Although I haven’t been under his care for 2 years now he still came by every morning and checked on me, he sat at the end of my bed when I had my head in my hands and tears in my eyes, he told me that it wasn’t my fault and that I would get better again… It was nice to get that extra mile… that verbal hug.

 

I’m home now and feeling a lot better than I did. I ate solid food for the first time yesterday but I still feel like my tummy has been run over… reversed on and run over again. Iain the pump is happily pumping away and my sugars have settled nicely back into their target of 5-10.

 

My mood is lifting as I’m getting better but I have the worry of DKA’s on my mind now. Call me naive but I thought this would stop… now that I’m looking after myself I thought I’d seen the end of my hospital admissions. I thought about giving up... I felt that I'd let myself down by being sick... let my diabetes team down... I'd become an unplanned admission statistic that they try so hard to combat. Then I realised how much I'd be letting myself and others down if I didn't get back up, dust myself off and try again. There's always something to come back and fight for, even if I couldn't see it at the time.

Ninjabetic x



 

The Diabetes UK Professional Conference - Meet the Professionals

This week I attended the Diabetes UK Professional Conference which was held in Manchester. I was invited there as a member of the Diabetes UK Young Leaders Action Group to give a talk about social media and how it has helped me change my diabetes for the better. I was also there as Ninjabetic (a diabetes advocate) and as myself (someone who’s fast approaching 11 years with Type 1 diabetes).

 

I had two intentions while I was at the conference:

 

Firstly I wanted to get across the message that social media has been the most powerful tool in getting me on track with my diabetes.

 

Secondly I wanted to gain an insight into the professional world of diabetes, to hear what happens in meetings, behind closed doors and away from the patients.

 

The latter was very easy to do as no one knew that I was a patient, other than the few who recognised me from twitter pictures. I sat in talks about depression and best practice; I listened to speeches that included research, data analysis, trials and studies… The majority of it was new to me, and the majority of it impressed me.

 

Because so much information is kept away from the patients it was a real eye opener to sit and listen to consultants, nurses and managers talking about the issues that are discussed by patients on social media every day. Being able to listen to health care professionals was an inspiring and captivating experience. It was also very motivating to find that there was the same passion behind their voices as I read in people’s tweets or Facebook comments. There was a lot of willing to think outside the box and to reach outside of the comfort zone. I learnt a great deal from this side of the conference & I feel that other patients would greatly benefit from experiencing similar.

 

When it came to my talk about social media I knew that it would be very different to the talks that had been given throughout the rest of the conference. I started by saying that I didn’t have fancy statistics and charts, that I didn’t have any data or tables to prove that social media has helped me. The only evidence that I had was right there in front of them... it was me.

 

A few minutes before the talk I’d bumped into my old consultant who had looked after me through my nine non-compliant years. As I looked around the crowd I saw him sat quietly in the audience listening to everything that was being said, and it was a comfort to know that he was there to support me and to see how far I’d come.

 

I explained my journey and referred to the destructive years that I’d had prior to taking care of my diabetes. I explained what Ninjabetic was and what the Diabetes Online Community gave to myself and others. I finished by saying that one simple suggestion to start using social media to interact with others could be the turning point for patients. I wanted to emphasise that this free tool could help patients engage with their diabetes and be a huge benefit to their management.

I’d like to think that I was able to reach a few of the people who were sat in the audience, that I may have left an impression on those HCPs that I didn't know. If only one of them suggests the use of social media to a patient then I would know that I’d done a good job that day.

 

I admit that the support I had from the Diabetes Online Community before during and after the talk was overwhelming compared to the response from the audience. If I’d received anywhere near the reaction or support from the audience that I had from the patients and carers on twitter then maybe I wouldn’t have felt so disheartened when the talk was over.

So what did I personally take away from the whole experience? Positives and negatives... as I’d expected.

The same conversations are happening… conversations that excite us and spark debate amongst us! Conversations that could lead to great things for the future of diabetes care. However what stood out the most for me is that both patients and Health Care Professionals are discussing the same topics… they just aren’t coming together to do so in the way that they should be.

 

Communication is key.

 

Ninjabetic

My diabetes smile...

Yesterday was a hugely positive and enjoyable day for me. Not because I had a excellent run of blood glucose readings, or because I didn’t bruise myself with a needle. Not because I didn’t have a hypo or need to think about what I was eating. No… It was because for over an hour in my diabetes clinic I saw cheerful faces, heard welcoming and attentive voices, and felt I nothing but enthusiasm and motivation while I was there.

Firstly my dietician came and chatted to me while I was waiting for my appointment. She thanked me for answering a few questions for a diabetes newsletter that is sent out to health care professionals. She’d already thanked me a number of times via email, but the fact that she stopped and took time to chat to me in person (when I’m sure she was very busy) meant a great deal to me.

Secondly I saw other young people in the clinic! Real life young people - not like the ones you see on the front of diabetes leaflets, but people who still had all of their limbs, and were smiling too… always a good sign when you’re in a hospital! Then whilst I was sat in my consultant’s office the DSN who ran my education course (JIGSAW) popped her head round the door to say hi and comment on my hair. The fact that she’d noticed I’d changed my hair made me smile because it showed she was thinking about me… me and not my diabetes, me and not my hospital number, me and not my a1c result.

Next up was my consultant who spent over an hour with me; listening to me talk about my obstacles, concerns, frustrations, achievements etc. An hour is a long time for an appointment, but in the last 1.5 years I’ve never had an appointment that’s been less than an hour long! I thought about what he could have gotten done apart from listening to me rattle on, but he sat and focused on me. He even laughed at my awful jokes!

In that hour he reviewed my blood glucose readings from the past 90 days, set me up with a CGM (as promised) for a week to assess night time hypos, talked to me about the process of getting an insulin pump, talked me through my test results and even discussed a persistent problem (unrelated to diabetes) that I’ve had for 4 years which my GP, sadly, hasn’t been successful in treating.

I’m pleased that my consultant's recognise that 10-15 minutes isn’t long enough for me to get to where I need to be. I know that I won’t always need such long appointments, however I am confident that should I ever need more they will be there for me. 

I left the hospital with another appointment booked for 2 weeks time on a day and time that suited me. Then I thought to myself about how lucky I am to have such a dedicated and supportive team who have the tools to help me with my diabetes management.

I hear stories every day about people who can’t see any member of their diabetes team if they have problems, need to take days off work just for one  appointment, don’t have access to CGMs and won’t be funded for insulin pumps. Unfortunately that list goes on and the people who suffer at the end of the day are the patients. They lose faith in the system and just have to… get by.

This truly makes me appreciate what I’ve got, because I know that come September I won’t be seen at this hospital anymore and I’m already starting to fear that move. I’ve seen that one of my previous consultants from the same hospital has posted a blog that he’s written about Utopian care in the diabetes department. Based on what I saw yesterday and the support I’ve had over the past 1.5 years I can definitely say that from my point of view… the diabetes team at Queen Alexandra hospital, Portsmouth, is doing all they can to win the fight for Utopian care.

I hope that other diabetes teams take notice… and that soon everyone can walk away from an appointment with a smile.

 

Ninjabetic x

What a difference two years makes....

After Hannah and I were asked to speak at the Diabetes UK Professional Conference in March this year, it really hit home how much has happened in the last 2 years. Looking back I can’t believe where I am today and how I got here.

In January 2011 I’d had diabetes for 9 years. Diagnosed at the age of 16 I didn’t know anyone who had diabetes. I didn’t know what it was, what it meant or how it could affect me. It was a completely new world to me… a world that scared me. I thought it would take away my independence, my friends, my future… and myself.

For nine years I refused anything and everything to do with my diabetes. Injections, blood glucose testing, HbA1c tests, appointments with health care professionals… I pretended I didn’t have diabetes… though I knew it was always lurking in the shadows, waiting to catch up with me.

 

2 years ago my HbA1c was around 15 and that was the lowest it had ever been.

2 years ago I was in A&E again with DKA (diabetic ketoacidosis).

2 years ago I was diagnosed with stage 4 retinopathy and told I would lose my sight.

2 years ago I’d never met anyone else with diabetes.

2 years ago I regretted every single day that I hadn’t looked after myself and my diabetes.

 

But no more!

Today my HbA1c is 7.8

Today it has been 20 months since my last admission with DKA.

Today my retinopathy has halted in my left eye and is slowing in my right.

Today I’ve met amazing and inspiring people who have diabetes.

Today I still regret every single mistake that I made… but I hope others can learn from them.

“A dead end can never be a one way street; you can always turn around and take another road.”

It’s not easy… if it was then I wouldn’t have ignored it for such a long time. But for me, anything that I do on a daily basis for my diabetes has now become second nature. I barely think when I’m reaching into my bag for my blood glucose meter. I don’t flinch when I see a needle going into my skin anymore. Carb counting has become easier now that apps are available at the touch of a button. Appointments are something that I look forward to, because I get so much out of them. I lap up the information that I’m given by my consultant instead of just smiling and nodding like I used to. I ask questions constantly, I challenge methods of treatment and changes to my regime because I realise now just how precious my health is.

Now that I my health and my life back I want to make every option and opportunity work for me if I feel it’s right.

 

On top of daily diabetes management I study Monday - Friday, volunteer, work long evening and weekend shifts and involve myself with as many diabetes projects as I can… conferences, events, meetings, more volunteering, research projects, writing etc. Then I look at other people who also do so much on top of their daily diabetes lives and it makes me smile to think of what can be achieved and how diabetes doesn’t hold people back. It’s definitely worth the work and it really does pay off.

This blog is to demonstrate to anyone who is struggling that they can accept their diabetes and find a positive and healthy way to manage it. There is always a way out, there are always people to help and guide us, and there is always a light at the end of the tunnel. If I can do it then I think anyone can!

Hannah's story....

on the 26^th November I got an early Christmas present. For a long time me and Laura (aka ninjabetic) had been asking , ok more like annoying, our leader at diabetes uk to be allowed to attend the diabetes uk professional conference in March . on the 26^th Alex came back with some even better news - we were being invited to speak at it! So on the 14^th march me Alex and Laura will be speaking to hopefully a number of hcp about our work as young leaders and the use of social media. Frankly I’m a little scared about this but it did make me realise how far I’ve come in the past 2 years with some sheer determination, some great friends and a pretty awesome (and very patient) diabetes team.

2 years ago this month I was at rock bottom with my diabetes and self-confidence I was sat in the hospital with my a1c at 10.5 % I was on a very slippery slope with my diabetes. The way I was going I would have had severe complications by my 20s and wouldn’t of made my 40^th . I was doing maybe one bloodcount a day, was skipping injections and the injections I was doing I was guessing the dose of. All the locums I’d had previously had written me off as non compliant and didn’t even bother trying to get through to me .I’d had several scary hypos but nothing would get through to me every time my doctor or nurse would try to convince me to do things properly it would go in one ear and straight out the other. Then I got told if I didn’t sort myself out I wouldn’t make my 40^th suddenly the reality hit me that I needed to take care of my diabetes

2 years later I’m a young leader for diabetes uk mentoring teens and annoying , sorry advising , doctors on trying to improve care for type 1 whilst studying for my a levels in the hopes of being a children’s nurse. 2 years later I’ve met some of the most amazing friends I could of wished for and been given opportunities I could never of imagined when I was rebelling. i confess I don’t work anywhere near as hard as Laura does on ninjabetic because my blog was never set up to be a support site (I love that teens will come and talk to me though!) it was set up to provide a very unsugarcoated account of what it’s like to live with type 1 as a teenager, the good parts and the bad. 2 years on from my a1c of 10.5 im on an insulin pump testing  seven times a day with an average bg of 7.8 (just after exams it will get better) and with less hypos.

I’ve already been told that my team will be on the front row and also my pump rep.the fight for the insulin pump was something that took nearly 2 years and was so so worth the fight. I went from having to be completely obsessive over my diabetes to actually being able to relax a bit. It’s not perfect I can still have phases where I have 3 or 4 hypos a day or sometimes be hypo for up to 3 hours.  The pump gave me my life back and that may sound like an over exaggeration but it really isn’t for me. Before the pump I was spending every minute trying to control my volatile bloodcounts the pump has let me be a teen again.

4 years ago when I first heard about the professional conference I dreamt that I could speak at it speak about what its really like to be a teenager with type 1. I never thought I’d actually reach that dream , at the time it seemed so unrealistic  but with the help of diabetes uk I am gonna reach that goal. 

Don't pity me - learn from me

Today's blog post wasn't meant to be here. It was going to be written for my nursing blog as I wanted to talk about my first patient experience. Instead I'm writing about a comment which was made in response to my diabetes.

I'm volunteering at a local centre, gaining some hands on experience with patients. Today I was chatting away with a patient who has Type 2 diabetes. I struck up conversation as soon as he mentioned his diabetes and chatted with him as we both have the same consultant. As the nurse who I was shadowing came into the cubical she caught the end of our conversation.

"Do you have diabetes Laura?"

I replied (quite proudly) that I have Type 1 diabetes and was diagnosed 10 years ago at the age of 16.

"Oh you poor thing, but you're so slim as well!" was her response.

I was stunned and quite disheartened by this. I felt my face drop and didn't really know what to say at first. Admittedly it wasn't the first time that I'd experienced a lack of knowledge or understanding about the different types of diabetes, but I've never experienced it from a health care professional before. I couldn't not say anything could I? Diabetes is important to me, it's a part of me, it's the area that I want to have a career in and I think of myself as a diabetes advocate now. If I didn't correct the comment then I'd be letting the side down. Go team!!

I explained that weight has nothing to do with me having diabetes. I reiterated that I have Type 1 diabetes and explained that it is an autoimmune disease which has nothing to do with my lifestyle, and I had no influence or control over my diagnosis. I felt that what I was saying was such an obvious statement to make that I may have sounded patronising, but I was polite and I didn't let on that I'd been offended.

However there was no getting away from the fact that a health care professional had said this. The comment hadn't been made out of malice and could have been an honest mistake, but to me this just shows what a lack of education there is out there. We need to trust people to care for us and to know how to manage our condition, but can we trust people who don't know the basics of diabetes?

Hopefully the tiny bit of knowledge that I passed on will be remembered and passed on again... hopefully.

What has also been playing on my mind was the pity; "Oh poor you." I didn't understand why someone was feeling sorry for me. I'm happy healthy and fit! I don't look ill and I'm learning to manage my condition. I personally don't see diabetes as an illness the majority of the time. Occasionally it does give me a good beating but I still live a normal life.

I know the effects of negative perceptions about diabetes. I've experienced those effects first hand and I can honestly say that supporting someone and highlighting the positive aspects has much more of an impact than pitying and focusing on the negatives. No one should be blinded by the media and the way that Type 1 diabetes is wrongly portrayed. Ask us, make the effort to see what we can do, look at us and see the real image of a person with Type 1 diabetes. People will be shocked that we aren't the stereotype that is projected to the general public, maybe that will shock them into thinking next time before speaking.

I would never pity anyone who has a chronic condition; in fact I would praise them for picking themselves up time after time and getting on with their lives! I'm a stronger person for having diabetes and if anyone feels sorry for me then they can walk on by.

Ninjabetic