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    Showing posts with label clinic. Show all posts
    Showing posts with label clinic. 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. Now, first things first. The big news is.....*drumroll*......


    I managed to get the chocolate out of the bed sheet!


    Hoorah! Now I've got to tackle the mattress. That will probably be harder, but I'm sure that will all come out ok as well. 


    So this morning, I had an appointment with the dietician. Back in September, I did a morning's carb counting workshop. I really wanted to use the skills, and work out my insulin-carb ratio, and what have you. What I didn't realise was that because I'm still on such tiny doses, and my sensitivity is so high, they wouldn't be able to come up with a ratio for me. Which was a bit frustrating. However, all the information was useful, and when I start increasing my doses, and we CAN work out a insulin-carb ration, then I'll have all the appropriate knowledge in place. 


    But this appointment in the morning was a bit of a waste of both my time and his. Truth be told, I like both the dieticians the hospital has at clinic, and I don't mind going and seeing them, because they're both lovely, but I didn't want to be using an appointment that could have been going to someone else. Yet, like a good girl, I had at least TRIED to keep the food diary as requested, and had my BG diaries up to date. Yet, we never really looked at either.  However, I did find out that isotonic sports drinks are a better choice for me to take to my dance classes than cereal bars. So it wasn't all a waste of time. 


    I also ended up walking over to my GP's today. Mostly on another errand, but I knew that I was due a 'prescription review' sometime after the 4th November, so I would go and talk to the receptionist, and find out if this was something I could do over the phone, or whether I needed an appointment. Turns out I do.


    Now, it seems I have a strange relationship with the receptionists. If I call up, it's like I'm poking a wasps' nest with a stick. They can be really quite vicious. However, they always seem to remember me from my D-day, and are absolutely charming if I go and see them in person. Strange. Anyhow, I asked how to do this, and they were very keen for me to have a '6 month review'. I told them that I'd had two reviews, and HbA1c's done at the hospital, but apparently 'no, you need to have it done here as well'. OK, if you say so, I suppose. So that's two appointments, with a bunch of tests by the sounds of it, that I've already had done. Seems strange, but at least it sounds like I'll get a foot check done during that. 


    But all I really wanted was to sort my prescription review out! 


    Also, I don't know what's going on with my bread-maker tonight. Instead of what normally comes out, looking through the viewing window, I appear to have a misformed, hardly risen lump of dough. Disappointing would be any understatement. Annoying is accurate but not quite covering either.


    (As a side note, I hope this font size is better, Northerner? I don't know why that last post went QUITE that small to be honest!)

    Posted by Becky at 22:42 | Labels: , , , | 2 comments |

  4. Guilt, with a side order of guilt

    Saturday, 22 August 2009


    I have this problem. I'll mentally compose a post for here, but by the time I actually get a chance to sit down and write it down, I forget what I was going to say in the first place. And then I feel guilty. Which strangely enough, is what has been preying on my mind a lot lately.

    I tend to feel a lot of guilt, over a lot of things. I'm not sure why. But when it comes to the whole subject of guilt, there are two schools of thought that I always seem to remember. Number one is that guilt is normal, but you shouldn't let it eat you alive. Number two was something that I read in a book several years ago. Which was 'guilt is a self-indulgence'. Battling between these two ideas often ends up with my feeling guilty about feeling guilty. Which can get dizzying.

    But, what have I got to feel guilty about, you might ask? Oh, just about everything. If I eat lunch too late, having a lie in on a Saturday morning, which means I didn't probably eat breakfast early enough. Taking a lift home from work that was offered, instead of walking, which means I probably didn't exercise enough that day. Not drinking enough water. Forgetting to log down my BS scores for 5 days, choosing to leave them in my meter instead, which means I couldn't see any patterns forming.

    If I have a score that's over 7 mmol/L, I'm cursing myself for what I could have eaten to push myself up. If I'm anything lower than 4, I'm telling myself that I've chosen foods that were too high GI, or been irresponsible for leaving it too long without eating, or not testing enough. If I have a snack, I beat myself for a lack of self control, and for being 'bad'. Any hypo is obviously a source of feelings of failure.

    When they weren't sure whether I had T1 or T2, I was hoping and praying that it would be confirmed as T1. Not that I wanted either one, obviously, but because of T1 being an auto-immune condition, which means there was less way I could be blamed for it. Now, please don't read into this that I think people with T2 are to blame for their diabetes. I don't, but so many people do seem to think that, and I, in my selfishness, wasn't sure that I could cope with that. But of course, I remain unconvinced that I didn't in some way, do something to cause my T1.

    Pre-diagnosis, I did, as many people do, lose a lot of weight. I'm actually fairly convinced that I lost a lot of it on the days leading up to going into hospital. I lost about a stone. And of course, on one level, I'm fairly pleased with this, because I needed and wanted to lose some weight. But now, every time someone congratulates me on losing it, I feel bad, because it wasn't through my own efforts. And even though I'm now the thinnest I've been in years, apparently my BMI is still 29, which makes me heavily into overweight on those charts, and on the border of being obese.

    I have clinic on Monday, and wondering about what my A1c is going to be is driving me crazy. I was at 8.8 last time I had it done, and I'm hoping so badly that I've brought it down, but I'm not convinced.

    So what do you do with it all? I have absolutely no idea...

    xx

    Posted by Becky at 14:12 | Labels: , , , , | 0 comments |

  5. That's Numberwang!

    Tuesday, 7 July 2009

    So now I'm back on insulin. Novorapid, but no Lantus. And the cause of this was not BS readings, but instead it was ketones. The strange thing is that at the moment, with the NR, I'm starting to even out, with readings of between 4 and 5, with a few 6's thrown in for good measure. I'm hoping that this is the start of good future progress, because I was never really happy about being off insulin. It felt far too much like playing Numberwang.

    OK, if you've never seen Mitchell & Webb, you will have absolutely NO idea what I'm on about.

    Numberwang!

    Check it out. It's very funny.

    No, seriously. I'll wait, I promise

    *grabs a diet coke* You're not missing anything.

    (2 minutes and 15 seconds later)

    You probably get the point now, I would imagine. Without insulin, I was pinging all over the place. And I really didn't like it very much.

    So here's hoping.

    In other news, Shrew got a great review, and hopefully the rain will hold back this evening. And I have another clinic appointment next month. Which they did for me.....because I stupidly didn't know I had to schedule it myself. Shining moment for me there!

    xx

    Posted by Becky at 14:07 | Labels: , , , , , | 0 comments |