Recent Posts by marke - DAFNE Online

Sep 26, 2010

marke 657 posts

Topic: General Discussion / Split background insulin

I'm glad to hear you will be seeing the hospital thursday, just because I would like them to confrim what you are doing in case you have
any problems. Not that I'm suggesting you will. I am on Levemir which it now seems commonly accepted does not last 24 hours in a lot
of people and so a lot of people are on a split dose. Less people on Lantus split their dose I think, but I'm happy to be corrected by others.
As I said before, I think you will need to give it a few more days before you can spot any patterns and it will probably take a couple of days
before the changes you have made will have full effect. There is nothing wrong with making changes, thats part of what DAFNE is about.
Its just always a good idea to ensure those that support you at the hospital etc, know you have made these changes. Let us know if
the change works for you, since I'm sure others have considered it but not felt confident enough to do it.

Sep 26, 2010

marke 657 posts

Topic: Questions ? / wound healing

Helen, Do you see anyone at a Hospital for your Diabetes or just your GP. The issue for me is GP's are NOT Diabetes experts and generally seem to think any issue that could be diabetes related IS diabetes related. I had another condition 2 years ago that has re-occured since. The GP's reaction was its caused by your Diabetes, my Diabetes consulant and the consultant I see for the condtion both say, it had nothing to do
with your Diabetes. Since both of these are experts rather than 'General Practioners' I tend to go with their opinions. I have absolutely no
issues with GP's doing what they normally do, its just I don't trust mine to manage my Diabetes.
As a non medical person, I would say that generally if your diabetes is reasonably well controlled it should have no impact on the healing process. You should heal just like a non-diabetic. Hopefully a HCP on the site can confirm this or give some guidance as to why this is not the
case.

Sep 26, 2010

marke 657 posts

Topic: General Discussion / Giving Blood

I think mines going to give them plenty to work on, well my immune system is anyway. It certainly seems to be challenging the medical profession whilst I am still alive ;^)

Sep 26, 2010

marke 657 posts

Topic: General Discussion / Split background insulin

Caroline, I think you should talk to yuor DAFNE Educator and/or Diabetes support team ( Diabetes Nurse/Consultant). I don't think you should rely on advice from this site when changing to split doses.
I also don't think there is enough info above to give much advice anyway. You need at least a few more days before a pattern can emerge.
The main thing to remember is that your BI is supposed to keep your blood sugar fairly constant in the absence of food. Therefore you need to look for patterns where it increases either overnight or during they day when you don't have carbs. Your QA is what should take care of food. Therefore if a hypo/hyper occurs within an hour of eating it should be down to QA and NOT BI.
You don't say what type of BI you are taking either, the profiles of all BI's are not the same and they can behave slightly differently. This is another reason for speaking to your Educator. They might suggest switching BI to another type, which again is not something anyone on
here can recommend. We are all happy to help and advise, however you probably need more detailed avice than we can provide.

Sep 20, 2010

marke 657 posts

Topic: Site Development / DAFNE Online iPhone application - help with content/design needed

yes, we hope to do an android version. However how soon it will be available depends on how quickly I learn how to do it and then implement it. Hopefully this will be in the not too distant future, but I can't make any guarantees exactly when.

Sep 11, 2010

marke 657 posts

Topic: Questions ? / dawn phenomenon... how to stop the rise?

Hi Stacy, thanks for the length reply ! I have scoured our forums and can't find this advice anywhere. I'm not suggesting you are wrong but... are you sure it was this site and not one of the other diabetes forums. I was just keen to ensure ANY advice like this has a disclaimer with it that says you should ALWAYS check with your DAFNE/Diabetes support team before doing something like this. We are keen for graduates to help and advise each other but this advice needs to be backed up by medical staff. We don't want people making themselves ill from advice on this site.
I accept no one knows for sure how long carbs last and it IS different in everyone, but it would be a very low GI food that lasted 24 hours ! Or I have come accross people with issues with bowel issues that cause food to be absorbed more slowly. Anyway thats an aside !
It does sound that its more likely that your closer monitoring along with the reduced dose of levimir compared to the Lantus are both factors. As I said before if its 'dawn' it should happen all the time and not only occasionally. If your 48 fast has got your BI correct then its a bit more tricky. In other forum posts its been suggested that QA is the way to tackle 'dawn' although this is difficult without a pump since you are asleep !

Sep 10, 2010

marke 657 posts

Topic: Questions ? / dawn phenomenon... how to stop the rise?

stacy, 'told on here to do it' ? when and by whom, it doesnt sound like very sound advice to me and I would never try it without checking with my DAFNE Educator/Diabetes Team first. I don't agree that carbs you eat can have an effect in excess of 24 hours, thats a very strange idea. I can see the benefit of a carb free meal to check BI but not 2 days of it.
I'm not sure that you can prove your its your BI or dawn apart from maybe testing at 3am, at this time your BG is usually at its lowest and
should not go lower if your BI is correct, however as always there are always exceptions. Generally dawn would kick in around 5am but again not guaranteed. This would normally push up your BG, due to hormones bouncing around getting you read to get up and start the day.
Still if you have already done the 2 day fast then at least it would give you an fairly good idea how your BI is working and as novoboi says
not sure we would have the dedication to do that ! Hopefully it was worth it.
Its also strange that you didn't get it with Lantus, since its apparently not something that comes and goes but rather something that happens consistently all the time. However Lantus is supposed to have a longer profile than levimir, so that 'might' explain. Are you on a split dose of levemir ? Since in many people including me it doesn't last 24 hours and needs splitting into 2 doses to make it 'last' the full 24 hours.

Sep 2, 2010

marke 657 posts

Topic: General Discussion / Introductions

welcome helen, I'm sure she will tell you were she's from, but her user description tells you ! In Brisbane, Australia. At the start of the year I spent a lot of time converting their handbook and carb book into online versions for the site (they see their own 'versions' when they log in), so its nice to see the numbers from Oz gradually increasing. Its also good for all of us to talk to DAFNE Grads around the world, maybe get a different perspective from people in different parts of the world. We also have a number of grads fron New Zealand and have just created our first Quwait DAFNE Centre on the site which we hope will have graduates starting to sign up in the not too distant future. I am looking forward to converting an arabic handbook to an online version ;^)

Aug 31, 2010

marke 657 posts

Topic: General Discussion / The Hospital - Channel 4

If you don't have a particular GP then address the letter to the practice manager. All surgeries have a practive manger who does as the name suggest manages the GP's , patients etc for the surgery. They should be able to resolve the issue for you. If you explain what you did on here, about duplication etc they should be able to provide all the answers. They will know if they do have online patient records and if not when they will have. They should also be able to stop you being sent the blood test stuff. They are usually very responsive because nowadays its all about patient choice ( supposedly) and you can pick and choose your GP, hospital etc. I'm not sure thats true in reality but if they think it is and it makes them take notice of patients then all the better !

Aug 31, 2010

marke 657 posts

Topic: General Discussion / The Hospital - Channel 4

I should be careful what I say here, but I put patient care above politics so.... Your GP does want in because of money. They get paid an amount by the NHS for each Diabetic they 'treat', they also have to pay some of that to the hospital if you see a consultant/team there. Hence its in their interest for you to be treated at the GP's. It is NOT in your interest however, having been DAFNE-ed and being a Type 1 you really need to be seen by a specialist team not a GP and a Diabetic nurse. I'm not suggesting these people don't do a very good job, however to manage your diabetes in the tight way that DAFNE demands means 'generic'
advice is really no good for you. You have the right to demand to be seen by the hospital and indeed I do. I had a letter not long ago from my GP saying 'I see you HBA1c has gone up, your control is not as it
should be, you need to come and see me'. I wrote back, telling her to read my notes properly ( I have been on steriods that cause insulin resistance) and that I would not be coming to see her since I was under the
care of the hospital and that was the way it would stay. I have not been bothered by the GP since. You CAN do the same, I know its not always easy to go against 'medical' advice, but you can. If you have any problems with this, go to your PCT's website and search for PALS. This is a department dedicated to helping people with issues with the NHS/PCT/GP and they do a very good job.
This brings me nicely to your other point, about the GP accessing your hospital data, they should be able to and most probably can. If they cannot currently they WILL have to be able to soon. It is a now a requirement, however like most large UK IT projects the NHS systems are a badly managed mess ( from an IT point of view). Where I am its definately in place and my GP does have access to my data as do my various consultants ( since they know I work in IT, they show off their system to me) . It may not be in place in your PCT , but I would be suprised its not given where you are. At some point in the future YOU may also be able to access some of the data as well, the NHS has plans to put it all online, you can go here to find out more. I think it has been put on hold to a degree at the moment due to issues with confidentiality and patients having a 'proper' right to opt out.
I also take on board your point about DAFNE 'support' , obviously thats one of the things we started this site for. However there have been and ARE research projects ongoing about how to better support DAFNE graduates in the long term. This is one of the reasons that DAFNE is important as a programme as opposed to PCT invented equivalents. To provide ongoing care and improve the training, you need proper investment and research which one off courses cannot provide. The thing about DAFNE is its national, its followed up with research and a dedicated team who are constantly working on improving it.
Lastly I take your point on 'money saving' but personally I would rather the money went to the expensive doctors than the NHS management consultants ! Most of the doctors and consultants I have met have been brilliant and dedicated and deserve all the money they get. My PCT on the other hand was 5th on the list of spenders on external consultants, we don't need better management just the money going to the front line to treat people. But hey enough of the politics already :-)

Aug 30, 2010

marke 657 posts

Topic: General Discussion / Android App

Hi, I think the answer is a tentative 'yes'. I plan to try and do a version of the app that will run on a number of phones including android. However its a question of time , since I have never written code for a mobile phone before its a new challenge and learning experience.
As soon as there is any news about the app I will post it in the Site Development forum.

Aug 27, 2010

marke 657 posts

Topic: Site Development / DAFNE Online iPhone application - help with content/design needed

yes, all apps work on iphone, ipod touch and ipad ( for the truly lucky). We also hope to do a version that runs on other phones in the future but there is still a lot of work to do on this, so no timescales as yet.

Aug 27, 2010

marke 657 posts

Topic: Site Development / New Meter Upload Development

hi, as ever I'm happy to be a tester. i still have my trusty 'onetouch ultrasmart' doing sterling service for me.

Aug 27, 2010

marke 657 posts

Topic: Carbohydrate Counting / Iphone Apps

nice to hear that Simon's hard work is being so well recieved. For those that don't have an iphone we do hope to develop a version of the app that will run on other phones. This is just about to start development and I make no promises about how quick it will get done since I have never written software for mobile phones before. But hey its a great challenge and hopefully will result in something that is of great use to everyone. i will post about my progress on site development forum and hopefully have something working in a month or two/.

Aug 27, 2010

marke 657 posts

Topic: General Discussion / The Hospital - Channel 4

I know I'm bound to say this since I'm lucky enough to be involved with the DAFNE Management team and have been to the collaboratives and met a number of the HCP's, but there ARE a lot of good and very dedicated medical people out there who work very hard. I'm also very lucky to have a brilliant Diabetes consultant who always has as much time for me as I need and never rushes our consultations. Sure his clinics ALWAYS run late, but you happily accept that because you know you will probably run over your slot. I have on occasion seen newer, younger consultants and one or two have had a lot to learn in terms of patient relationships. I guess thats something they learn with experience and maybe Lizzies consultants still have this road to walk. I'm not clear though Lizzie if you see a GP or a hospital when you talk of 'doctors'. I do find that GP's are no where near as good. They just don't understand the deep details like someone who works in Diabetes full time. I know locally to me the PCT is trying to push Type 1 and 2's into the GP's care which is NOT a good thing.
I think the problem with young people is they want to rebel, we all did at that age. Fortunately for me I wasn't diabetic so my rebellions were not dangerous to my health ( well not in the long term anyway !). I have met many people who went off the rails when they were younger and now with the benefit of hindsight regret it. Maybe, just maybe, shock tactics are necessary to make people take it seriously. I never forget my first visit to the hospital diabetes clinic when I lived in southampton. It scared the life out of me, people with amputations etc. that made me realise I had to take things seriously and ensure I kept my condition under control, I didn't ever want it to be me in a wheelchair. Fortunately since then I have met and become involved with diabetics of 30 and 50 years who are completely fine and complication free. It can be done but not without taking responsibility ourselves for our own treatment. Thats the point of DAFNE, to give us the ability to manage ourselves and NOT rely so much on the Diabetes support team.
Sorry that went on a bit and I haven't seen the TV programme but maybe the negatives will encourage a few to take Diabetes as seriously as they should.

Aug 23, 2010

marke 657 posts

Topic: Site Development / Forum improvments

hi, bit late on this one sorry, but as the 'cynic' that sits on Simons shoulder in the development team I have to say 'remember' me functions are a bad thing and I would recommend you never use them. I would not implement one on the site due to security considerations. I'm sure it sounds far fectched to those not directly involved with the IT industry and secuirty but ANY information disclosed by you is a weapon for the bad guys. If we remember your login and someone else gains access to your account they could obtain personnal details about you. Add these to stuff they find about you on other sites ( especially if you 'remember' your logins) and it could be enough to forge a credit card application or scam someone that they are you.
Most of us think that just happens to others and won't happen to me, it CAN happen to you and when it does its too late to get back all the information you have put on facebook/twitter etc. Sorry but account security ranks above convenience for me.

Aug 11, 2010

marke 657 posts

Topic: Questions ? / Insulin resistace and Alergy?

Albumin is actually protein and is most commonly found in the blood to bind multiple things like hormones, acids etc. Of course protein is found
in lots of other things like egg white which is often used in vaccines. I don't think you can say you are allegic to 'albumin', however I agree people can and are allergic to some of the ingredients used in insulin solutions. As always my reaction is to suggest you speak to you Diabetes
support Team/DAFNE team, they should be able to help confirming that it IS an allegric reaction but more importantly what the alternatives are. No one on here can tell you to change insulins this is something that needs to be done in co-ordination with your Diabetes Team.
I know a lot of people are uneasy contacting their Diabetes team, feeling they are being a nuisance, but it really is the only way to sort out issues like this and it is after all what they are there for.

Aug 11, 2010

marke 657 posts

Topic: General Discussion / Exhaustion

claire, thanks for that. It reminds me of the most important Diabetes maxim of all 'everyone is different'. My assumption was that exhaustion and diabetes are not connected because I have never come across anyone who has experienced it. However this forum has demonstrated at least 2 people HAVE experienced it. This useful to all of us on the site to know it is possible and that we are not alone if we do experience it. Hopefully it is also useful to HCP's since it shows that people do have this problem and that perhaps it is something that needs research.
Thank you both for your input, the drive behind this site is to allow DAFNE Grads to continue to share experiences and benefits of the course for more than just the follow up meetings. We obviously can't do this without user contributions and anything that helps to highlight Diabetic issues will ultimately benefit us all.

Aug 3, 2010

marke 657 posts

Topic: General Discussion / Exhaustion

Helen,
I think you need a chat with a Diabetes Consultant. I tend to agree with others I don't think Diabetes should cause the tiredness problems you have, however only a consultant can answer questions like that and provide a proper diagnosis. Personally I am really lucky and see an excellent consultant at my hospital who seems to know everything even vaguely diabetes related and is happy to have 'long' chats aboout any problems I might be having. It sounds as if it is what you need. You sound like you have a number of issues not all of which are necessarily diabetes related. I personnally think you need to talk to the hospital again, tell them all the things you have posted on here and hopefully they will have some suggestions.
We can all offer opinions but I think you need expert as well as 'lay' help with your problems.

Aug 3, 2010

marke 657 posts

Topic: General Discussion / Denial

I would echo most of what novarapidiboi26 says, apart from how long denial should last. There is no set time for denial I don't think, you can come out of it and go back to it. I'm lucky in that I just 'accepted' it and mostly I'm good, but hey we are all bad sometimes right ? life would be too boring otherwise. A few bad days is not going to cause any long term damage, better maybe to get it out of your system than let it build up. I agree you need to focus on the positive, your HBa1C is down 6% !! OK so its still not ideal but its much, much better and if you keep going in the right direction you WILL get there eventually.
I'm sure others will add their experiences of denial, thats what the site is for, sharing experiences just like the course itself. We are all here to help each other and hopefully stick to the DAFNE principles (most of the time ;^) )

Jul 26, 2010

marke 657 posts

Topic: Questions ? / Humilin I and morning sugars

Hi, the best person to reply to this is Simon Heller, but I know hes a busy chap. Hopefully he will be able to respond to you at some stage as I know he knows a lot about this.
As I understand it, Dawn starts at about 4-5am when your body starts preparing itself for waking up. It should be around this time that your BG starts to rise as loads of hormones start bouncing around your body. Therefore, changing your BI injections will NOT give the sugars less time to rise. In an ideal world you would magically inject QA at about 4-5am when the hormonal activity starts, however since you are asleep this is not easy. In addition I would guess that if you regularly woke up at 4-5am the hormonal process would just start earlier.
This I appreciate doesn't provide an answer, but then I only understand the basics ( just about) rather than the details of the process and how it affects BG. Hopefully someone with a more detailed understanding can provide advice on the best course of action.

Jul 20, 2010

marke 657 posts

Topic: General Discussion / An app for carbs

The DAFNEOnline app is getting close to release and while it may not do this in the first version if its requested I'm sure Simon will add the function. We hope to make our version free as well....

Jul 20, 2010

marke 657 posts

Topic: General Discussion / Adjusting Dosages

I agree ;-) and it just goes to show if you ask sometimes you DO get ! I look forward to upgrading your account to 'graduate' status at the end of september :-)

Jul 15, 2010

marke 657 posts

Topic: General Discussion / Adjusting Dosages

caroline, your works occupational therapist should have their license revoked and be told to stay the hell away from Diabetics. What training or understanding of diabetes do they have, it sounds like very little if they are giving bizzare and wrong advice like that !!
With regards to tips on how to manage your diabetes, I will let novarapidboi26 do the advising as I don't disagree with it and I should not be seen to give advice to non-DAFNE grads given the sites connection to the DAFNE programme. As I said before the best solution is to get on a DAFNE Course with educators that understand how to treat diabetes unlike occupational therapists. The danger with doing it solo is you don't have the support infrastructure if something goes wrong. On the course you have educators and a group of other diabetics you can ask, doing it solo you only have the web to ask. I'm sure people on this site will help as much as they can but its not the same as a room of people doing the same thing as you.

Jul 15, 2010

marke 657 posts

Topic: Questions ? / Night hypo and Morning BG

I have also requested that its added to the Hypo section as well as its current location to ensure people like me don't miss it ! This is the benefit of having it online and having thousands of people reading it !