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    Showing posts with label HbA1C. Show all posts
    Showing posts with label HbA1C. Show all posts

  1. An unexpected (CGM based) party

    Tuesday, 12 August 2014

    I do get some very interesting emails on occasion. Some of which come with offers or invitations to various events or interviews. The problem comes when I have to reply and say 'thank you, but I can't'. These are frustrating enough when I get invites that are based in the UK - they're almost always based in London and being as I have a limited income and don't drive, I've always had to turn them down. Frustrating, like I say. But from time to time, I get emails asking if I'll be at this conference, or that conference - always based in the States - and would I like to meet this person, sit in something else. Nothing that I'm certain umpteen far more prolific bloggers than myself don't also receive. My response is always the same - 'Thank you, but I live in the UK and do not have the finances to attend. If an opportunity ever presents itself when they might be in the UK, please let me know.'. Best wishes, hit send. That's usually the last I hear of it and understandably so! But imagine my surprise and my pleasure when a swift reply entered my inbox - 

     'Would you be interested in a telephone interview instead?'

    Why yes. Yes I would! What a great solution! The lovely communications representative and I sent a few more emails back and forth and played some time-zone maths, and set it up.

     Which is how I found myself speaking to Terrance Gregg - the current CEO of Dexcom. 

    First off, I'll say that it wasn't something I ever thought I would have the opportunity to do, especially away from the ADA conference which was originally the time slot where he would be available. I was very aware of the sort of schedule he must keep and I was very impressed that he was willing to take the time out to talk to me when I was halfway around the world.

    I was struck by how much of a gentleman he was - mostly because he was very patient with me. Honestly, I was nervous and I ramble when I'm nervous. I usually make a point of telling people this, and making them know they're free to cut me off - I'm liable to keep on talking indefinitely otherwise! 

    We talked a lot about the future of Dexcom and CGMs in general in the UK - as I'm sure anyone who is reading this is aware, the differences in healthcare systems in the US and the UK are quite vast, and it is extremely difficult to get NHS approval for a CGM, with self funding being the only avenue for the majority. 

    'Reimbursement landscapes are daunting.' I wrote down as we talked. That's not particularly surprising. We covered some familiar ground for me as we discussed the need for devices, particularly in the UK have to demonstrate a high level of cost effectiveness in order to gain wide-spread approval. 

    Within the NHS that makes perfect sense. When you're funding the many, you've got to make hard choices and something like CGM technology has to prove that it can be effective and cost efficient to make it accessible to more patients. It makes sense, like I say. But when you're waiting for that time when the tech will be more easily available, you can potentially get a bit impatient. I like to temper hope and optimism with facts and realism. What was extremely encouraging was talk of recently received reimbursement in Sweden and Slovenia and that a dossier is currently being prepared for the UK. I wrote down a particular quote - 'the landscape is changing.' - which I think balances things in a way that I favour. Yes the landscape is daunting, but it is also changing. In order to make progress, there's a lot of work that has to be done. 

     I was also encouraged by the attitude to patient engagement that came across from our discussion. I felt a real sense of belief in the importance of talking to your users and listening to what they have to say. I personally don't think a company stands a long term chance unless they do - if a company isn't listening to my interests, then why should I want to use or continue to use their product or service? But I felt not only the sense of importance but a sense of pride in user engagement. If they're proud of that, then I think they can be proud of themselves. At least in my opinion, for what that's worth. 

     We left the conversation with my saying that, for the UK at least, my door, or phone/inbox was always open - I think they have a great products, from what I know of them from reviews, blogs, and all the ways I've come across them. I think they have the right attitude - a plan and long term strategy. 
    However, in the style of a late night JML infomercial for fountain pens that will stab through tin cans....

     But wait, there's more!

     I had a clinic appointment not long after this conversation. Admittedly, I'd been dreading it, but it turned out a million times better than I had anticipated. A HbA1c of 6.9! Almost certainly influenced by hypos, but I'll still take it. No complaints about my weight! Hoorah! But somehow we strayed on to talking about my speaking to Terrence Gregg, and this is where the discussion went - 

     Would I like to do a Dexcom trial, since I already used an Animas Vibe?

     After wondering if I was having my leg pulled, I managed to respond with a 'Yes. Yes I would.'. Would I like to? Getting the ability to switch on the Vibe's CGM function was, as I have put it several times to different people, a bit like having someone offer me the Holy Grail. Something I thought would never happen - magical and unattainable. If I can't afford a few train tickets to London to take up some of the interview offers I've had, then self-funding sensors was never going to happen. So we put a date in the diary. Turns out that Animas had some funding to run some trials. Everyone knew full well I wouldn't be able to carry on afterwards, but they would let me do it all the same. 

     That date in the diary was today.

     I was tremendously excited about the whole thing, up to a point where I apparently surprised the Animas training staff. And she's met me before. Several times. You think she'd have known better. So I'll be blogging about how I'm getting on with this trial. Right now I'm having a bit of a weird day with it, but I'm told that is completely to be expected with a new sensor. General wisdom seems to be that it takes a good 24 hours to learn what you're like. I know that's personifying it slightly, but it seems right.


    Posted by Becky at 23:55 | Labels: , , , , , , , | 1 comments |

  2. The Last Taboo?

    Sunday, 17 April 2011

    I had my annual review with my endo on Monday. I'll be honest, I was extremely nervous about getting my HbA1c result back. I normally run the usual 'having everyone guess' pool on Twitter, etc. But I didn't this time, because for once, I was actually scared about the result. With my several month run of extremely fruity scores, I was worried. I had prepared myself for a double figure score, knowing that whilst that would be a huge jump from my previous result of 7.1, if I prepared myself for the worst, then at least it wouldn't be too much of a shock. 

    As I was sitting in the waiting room, all sorts of things were going through my head - what if they took my pump off me? After all, it was supposed to help me bring my A1c down. Well, it turns out that whilst it had gone up, the damage wasn't as bad as I'd been expecting. It rolled in a 7.8%, which I know many people would bite my arm off for. So, Dr J. wasn't too worried about that. He told me that he knew I'd get it back down again, and he had absolutely no doubt about that. He also wasn't that concerned about what I've been calling my 'fruity' scores. His argument was that a) my honeymoon has clearly ended, and b) my body was still getting used to pumping - the two things together meant that the scores I'd been getting didn't surprise him. What surprised me, however, was what seemed to concern him. Which was my weight. Or more precisely, my BMI.

    Now, I was pretty clued up to the fact that I'd most likely put on a few pounds, but it wasn't something that I was overly concerned about. I also dislike BMI as a form of measurement a) because for some reason, the hospital have measured my height as several inches shorter than I actually am, which skews things, and b) it just seems to make everyone feel bad about themselves. However, Dr J. seemed extremely concerned about it. Apparently my BMI was too high for someone with Type 1. He wanted to put me on Metformin. I did not want this. When I was in hospital after I was diagnosed, they weren't quite sure what type I was. This was despite the fact I had ketones that were (so I'm told) practically off the scale. Since I was out of adolescence, they gave me Metformin. It did not agree with me. I know for a fact it would most likely not agree with me now, for reasons I'll come on to shortly. 

    So it turns out that from about a year ago, I'd put on 5lb. This apparently had tipped things to a point where he wasn't comfortable with my weight, despite the fact that I'm still lighter than I was pre-diagnosis. I pointed out that my total daily dose was still coming in at under twenty units - I'm hardly insulin resistant, so I didn't really see the point in it. Then he asked me THE question, which has been rattling around in my head all week:

    "Have you always been on the chubby side?"

    Well, what do you say to that? Admittedly, I have always been heavier - I'm built that way, and even if I were to shed all excess weight, I'd still have a heavier build. I'm never going to be a size 8. That I've come to terms with. But I was slightly dumbfounded, and the best I could come out with was, "Uh, I guess so?".

    The discussion went on for a while, and eventually I convinced him that I didn't want to take him up on the offer. That was fine, he told me, he didn't want to twist my arm and force me into anything I didn't want to do. I said if my weight was really a concern, then I would try and do something about it. We agreed that I would try to lose a stone by my next annual review. Ideally, I want to lose two, so that he really has nothing to complain about.

    So the comments about my weight cut rather deeply. I've always had issues about my appearance, so having this put in front of me hasn't been exactly easy. It's upset me. I know he didn't mean it to, but it has. However, that's only 50% of what this post is about. 

    I said I had reasons for not wanting to go onto Metformin. I remember, from the couple of days that I was on it, that it did not agree with me. It caused many of the side effects that it's well known for - abdominal cramps and excessive gas being the ringleaders. You see, the thing is now, that I have issues with IBS. I don't talk about it much, particularly not on here, because well...it's not really very pleasant. You just don't talk about those sorts of things, do you? That leads me to ask, why not? I don't mean graphically (I promise I will never do that), but why is it such a taboo to talk about this? I asked out on twitter about whether any other Type 1's had Metformin suggested to them, and eventually discovered that I wasn't alone in dealing with both T1 and IBS. I suspect there are more people out there than just the two of us, as well. But it's not the sort of thing one sits around and chats about in polite company. But surely that's where problems, particularly those of feeling isolated, start? When we don't admit things, and we don't talk about them?

    So this is me saying that I have IBS as well as T1. For me, my IBS is mostly stress induced, and I don't have it half as bad as other people I know. But it's there all the same. And for me, I didn't see the point of putting myself through the wringer of Metformin, in all probability exacerbating my symptoms, for the minimal payoff. So I'm going to try and get rid of this two stone the old fashioned way. 

    And if anyone else with IBS wants to say hi, please do - you're not on your own either.  

    Posted by Becky at 23:42 | Labels: , , , , , | 4 comments |

  3. Overly Sensitive

    Saturday, 29 May 2010

    I've made no big secret of the fact that I use very small amounts of insulin. My ratios are tiny. I use 1:25carbs in the morning, and 1:35 in the evening, with only 3u of Lantus. Quite often this gets a huge reaction of -cue shockface- 'Whoa, those are TINY amounts!'. Yes, I realise that.

    I've always put my small insulin requirements down to the honeymoon period. But the idea has been recently put to me that maybe the honeymoon ended whilst I was looking the other way, and I'm just incredibly insulin sensitive. 

    Now there's a thinker. So far I've been approaching this whole thing with the attitude of 'it's awkward and frustrating, but it will end.'. The frustrations of carb counting with massive ratios, and feeling like there's not much that I can do to make any sort of adjustments. Even with a demi pen, it's a bit like trying to crack a nut with a sledge hammer. Or getting rid of adorable truffling pigs for a JCB. At any rate, similes aside, if this isn't going to change any time soon, I might have to do a massive rethink, and possibly a bit of soul-searching. 

    My control generally isn't bad. I have a HbA1c that I'm happy enough with (6.2% at last check), and according to my meter, I'm mostly on target. But I'm working hard to keep it that way. You all know this, you never stop working. It's tiring. 

    I've also not really hidden that I'm not amazingly keen on the idea of pumping. However, there's a part of me that is thinking that the tiny amounts you can bolus by would be a good idea. But I just can't shake the fact that I don't want to be tethered to something 24/7. It would just feel like a constant reminder of diabetes to me. 

    This is awfully vain of me as well, but I don't know how sexy I would feel with a pump. I feel sexy maybe 10-15% of the time, so I worry about diminishing that 10-15%.

    If anyone has any opinions on whether pumping is something I should think over some more? I have an appointment with my DSN coming up in the next month or so - I can bring it up with her then. But I'd just love some thoughts on the matter.

    Posted by Becky at 20:53 | Labels: , , , , , | 8 comments |

  4. The Weather Today....

    Tuesday, 2 March 2010

    I woke up yesterday morning, and it looked extremely bright and sunny. Almost spring-like, in fact. But oh no, I wasn't going to be fooled by THAT one again. However, by the time I was walking to work, I had taken off my gloves, my scarf, my hat, and undone my coat. But come the evening, it was freezing again.

    So this morning, I wanted to be slightly more optimistic that, for the day at least, it was going to stay warm. So I left my big furry russian-style hat at home, chose a beanie hat instead, and left my gloves in my handbag. But as soon as I'd walked out the door, it was cold. The pond was frozen over, and weirdly enough, there was some very light snow on portions of the grass. But then I walked out of the shade, and it was actually quite warm. 

    What the heck is going on? Would the weather please make up its mind? I don't know what to expect half the time, and it's getting on my nerves!

    I had my annual review at clinic today, and much like the weather, I wasn't sure what to expect from it, and hadn't quite figured out what to think about the whole thing. Despite this now being nearly a complete day eleven of my hypo-free streak, I'd been having lots of hypos prior to that, between one and three a day, most days. So I wasn't quite sure what that would have done to my A1c. 

    But I went along, and aside from the fact that I was shocked to see 'Deal or no Deal' on the waiting area television, rather than children's shows for once, I didn't have to wait too long. I apparently now weigh eleven and a half stone, which is the lightest I have been in quite some time.

    My HbA1c has gone up a little bit from 6.0 to 6.2. I'm not too bothered about this, it's still acceptable. I asked about getting a demi-pen, and my DSN is going to ring me about that tomorrow. So it looks like I might be switching to cartridges. I'm still not 100% sure how I feel about this though.

    But on the whole, the outlook is generally clear.

    Posted by Becky at 23:43 | Labels: , , , , | 0 comments |


  5. So this morning I had my baffling appointment with the Health Care Assistant. I came in and sat down.


    'Now, Rebecca, why exactly are you here?' 

    'To be honest, I have absolutely no idea.'

    'Doesn't the hospital do all your care?'

    'Yep, as far as I know.'

    'So who told you that you had to do it here as well?'

    'One of the women on reception.'

    'Oh, I am going to have to go and shout at someone later!'

    Basically, it was a completely pointless appointment in one sense. I didn't need to do it. However, I did get told how impressed she was with my improved HbA1c - down from 12 at diagnosis to 6 at last check. Had my foot check done, and then we moved on to my prescription review.

    Rid of the stupid test strips that aren't for my meter? Check
    Increase the number of boxes of strips I get in one go from two to four? Check
    Ketone urine testing strips on repeat? Check

    So whilst it wasn't useful in a lot of respects, I still got a lot out of it!


    Posted by Becky at 22:53 | Labels: , , , , , , | 0 comments |

  6. Dream a little dream of me...

    Sunday, 30 August 2009

    I think everyone has dreams. I don't think you're really human if you don't. I know I dream. But it seems to me that, so often our dreams seem completely unattainable. I think back on the many, many things I've said to myself that I want to achieve over the years. So many of them seem utterly ridiculous now. For years and years, I've wanted to be an actress. And guess what? I've done it. So that's one box ticked. It may not have been for a particularly great company, or very long lasting, but I did it.

    But, before that, I had a dream that I quite frequently pretend that I never had. It's one that a lot of little girls have at about the age of 5 or 6 I think. I wanted to be a dancer. Quite badly. I went to ballet classes, as a lot of girls do. Actually, if memory serves me, I had a chiropodist who 'strongly recommended' that I went. I had a curvature of the foot that meant I didn't really walk in a straight line, and he thought that would help. And I did ballet classes for a couple of years, and then started tap. Then I stopped. And for the life of me, I can't remember why. I think it was getting too expensive. But over the years, I've done various dancing classes. I did modern dance, where I remember my mum bargaining with me, that I could only go if I had school dinners, which we got for free. Otherwise we couldn't afford it. Now, I did this for a while, and did a few exams and earned a few rosettes even. But again, I stopped. Again, I think I knew it was getting too expensive to carry on.

    After that, when I had my own pocket money, I took up line dancing. It was pretty fashionable at the time, and I was actually good. I won a regional trophy against people I was pretty sure would wipe the floor with me. I passed lots of exams with extremely respectable marks. I had a bash at choreography, and it actually led me to meet the closest thing I've ever had to a boyfriend (but let's leave my miserable excuse of a love life out of it, hey?). But again, I stopped.

    I was a fat kid. I got thrown out of the school dance production auditions because I was too fat. This sounds like something I'm making up, I know. But I swear it's true. I got through to the last audition, only for the head of dance to tell me 'You're too big. You won't keep up with the rest of the cast.' and ask me to leave. And I didn't really dance any more after that. Sure I did a few workshops and whatnot, but all I could think was that I was clumsy and graceless, and too fat for dancing. I had far too many people who called me clumsy, and it really did nothing for my self esteem. Because I believed them.

    Now, I'm sure you're probably wondering what this all has to do with diabetes. And that's a fair question at this point. But stay with me, I'll get to the point eventually.

    So when I went to university, I went to Cumbria Institute of the Arts and did a degree in Performing Arts. This, naturally, included dance. Our dance tutor there put me in the 'high stream' class. I argued with her, and didn't understand why. I found the whole thing extremely frustrating, and shed more than a few tears over it, because I just couldn't keep up. But in retrospect, I know why she did it. I was better than I gave myself credit for. I didn't sign up to take part in dance shows, or take the dance electives, because all I could think was 'fat, clumsy, graceless'. But I'd see what they were doing, and part of me knew I was missing out. But I took up tango for a while, and loved it. Then after uni, I took modern jive classes as something to do in our town, which was in the middle of no-where. It was simply bad timing that I actually got an acting job which took me away, and I then moved to York, so I've not been able to carry it on.

    There are lots of other things I've wanted to be able to do. When I was younger, I imagined that by the time I was 25, I'd be working regularly as an actress, have an amazing boyfriend, two cats and a gorgeous home. I'd be playing at least five instruments, painting, know how to surf. I would be a published author. I would travel, and speak multiple languages. I would know how to fence, do archery, and I'd be an amazing cook, I would be happy going for a run. I would be pretty and slim and confident. Oh, and of course, I would dance. And if I want to stay in line with that, I have about 6 months to complete an awful lot! And it wasn't that long ago that I thought all these things were achievable.

    Now, with diabetes thrown into the mix, I've got a whole load of new things I want to achieve. I want to lose enough weight for my BMI to edge away from its current 29 (I really hate BMI - I think it makes everyone feel bad). I want a brilliant HbA1C. I want perfection in my blood sugars. No hypos. No highs. I want to be able to take everything in my stride. I don't want to ever feel down, depressed, angry, stressed or frustrated about this chronic condition that I didn't ask for and don't want. I want to eat better despite the hang-ups and issues I have with food. I want to exercise plenty. And I want to do it all with grace and humour. I want to make it all look easy and effortless.

    Of course, that's ridiculous. I'd be completely in cloud cuckoo land if I thought I could do all that. But wait! There is hope, as I see it. Of course I can't do all that. I can't be a multi-instrument playing, surfing, quad-lingual, travelling actress with perfect blood sugars, a HbA1C to envy, and probably perfect hair and skin as well. But what I can do is try. Simply TRY to achieve some of these things, and be realistic about what I can and can't do. Self-destructive behaviours don't help anyone, and they simply hurt you. Now, I'm not claiming that I won't ever doubt myself or want to quit trying to do better. What I need to try and realise is that I could do all these things, and be this amazing person, but I'm probably not too bad as I am. Even if I don't think I am.

    So, just to take stock of a few things, I've lowered my HbA1c from 8.8 to 6.0 since June. That's pretty good. I've lost about a stone pre-diagnosis, and I've not put any of it back on. I've lost another couple of pounds. That's an achievement, Becky! I'm going to try and get to the bottom of why I keep hitting the 3's before lunch. Oh, and I plan to send an email to York Dance Sport about their beginner's ballroom classes after the Bank Holiday weekend is over.

    So what about you? Want to join me? What's your dance class?

    xx

    Posted by Becky at 21:38 | Labels: , , , , , | 0 comments |