Hi everyone, I've just joined this forum as I am newly in charge of my partners Diabetes care. My partner has had Diabetes T1 for 23 years and, thanks to the pandemic and her previous hospital care, she is currently blind and having surgery tomorrow. As she can't see to do blood monitoring etc, I'm really here for advice and also to try and find out which insulin pump would be best to go with her new Freestyle Libra monitor. Any suggestions or advice would be appreciated!
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Newbie Here, Hi!
- Thread starter Sarah76
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rebrascora
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- Type 1
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- She/Her
Hi and welcome
So sorry to hear of your partner's loss of sight. Is the surgery tomorrow to try to regain some of that or for another matter?
As regards pumps, there isn't usually a free choice as such. Most areas offer a very limited number of pump choices. Sometimes just 2, perhaps a patch pump and a tubed pump. At the moment I believe that none can be paired with the Libre if you are looking towards a closed loop system although there is talk of one of the manufacturers working towards that option. If your partner has been given approval for a pump then the first step would be to ask her clinic which pumps they offer and then do some research and certainly come back and ask questions here about those pumps.
Hope the op is successful tomorrow. Please let us know how it goes and shout up if you need help with understanding anything. Managing BG levels with insulin is a bit of a dark art and takes time and experience and knowledge to get as near to right as you can, but if you bear in mind that there are something like 42 factors which affect BG levels and you only have control over about half a dozen of them (admittedly mostly the main factors) then you soon come to realize that balancing things is not an exact science and you can only do your best. Perfection is impossible and just when you think you have got the hang of the game, the goal posts move and you have to figure it out all over again. Not meaning to be negative at all, but just to give you a realistic impression of the task ahead, so that you don't beat yourself up if/when you get it wrong. Thankfully the body can be quite forgiving about minor blips and errors. Longer term poor management is the thing to be more worried about as that can lead to complications.
Which insulins is your partner on?
So sorry to hear of your partner's loss of sight. Is the surgery tomorrow to try to regain some of that or for another matter?
As regards pumps, there isn't usually a free choice as such. Most areas offer a very limited number of pump choices. Sometimes just 2, perhaps a patch pump and a tubed pump. At the moment I believe that none can be paired with the Libre if you are looking towards a closed loop system although there is talk of one of the manufacturers working towards that option. If your partner has been given approval for a pump then the first step would be to ask her clinic which pumps they offer and then do some research and certainly come back and ask questions here about those pumps.
Hope the op is successful tomorrow. Please let us know how it goes and shout up if you need help with understanding anything. Managing BG levels with insulin is a bit of a dark art and takes time and experience and knowledge to get as near to right as you can, but if you bear in mind that there are something like 42 factors which affect BG levels and you only have control over about half a dozen of them (admittedly mostly the main factors) then you soon come to realize that balancing things is not an exact science and you can only do your best. Perfection is impossible and just when you think you have got the hang of the game, the goal posts move and you have to figure it out all over again. Not meaning to be negative at all, but just to give you a realistic impression of the task ahead, so that you don't beat yourself up if/when you get it wrong. Thankfully the body can be quite forgiving about minor blips and errors. Longer term poor management is the thing to be more worried about as that can lead to complications.
Which insulins is your partner on?
Thank you for your reply Barbara,
Yes, the surgery tomorrow is to fit an oil bubble in her left eye to try and restore her sight. She had the same in her right eye a month ago but her retina detached immediately after the surgery again so they're going to try that one again although they aren't hopeful about it.
The Libre was just fitted last week so we're still getting used to it but the nurse told us to look into pumps to see which ones we thought we'd be happiest with. There was no mention that only certain ones are available through the NHS but I'll get back to them tomorrow to check, thank you for the heads up! I have noticed that she's had a lot more Hypo's lately but I'm assuming stress will be a big factor for that, I'm just trying to keep her as level as possible. She uses Levemir and Novorapid and has done for years but I think she spent a lot of time in her 20's managing her diabetes really badly, I know that when we met, she would only take the morning and night-time slow release insulin and wouldn't check her levels through the day. We're under much better control with it now but it is a bit of a minefield for me to learn it all with everything else we're going through! I'll definitely update tomorrow with how the surgery goes.
Yes, the surgery tomorrow is to fit an oil bubble in her left eye to try and restore her sight. She had the same in her right eye a month ago but her retina detached immediately after the surgery again so they're going to try that one again although they aren't hopeful about it.
The Libre was just fitted last week so we're still getting used to it but the nurse told us to look into pumps to see which ones we thought we'd be happiest with. There was no mention that only certain ones are available through the NHS but I'll get back to them tomorrow to check, thank you for the heads up! I have noticed that she's had a lot more Hypo's lately but I'm assuming stress will be a big factor for that, I'm just trying to keep her as level as possible. She uses Levemir and Novorapid and has done for years but I think she spent a lot of time in her 20's managing her diabetes really badly, I know that when we met, she would only take the morning and night-time slow release insulin and wouldn't check her levels through the day. We're under much better control with it now but it is a bit of a minefield for me to learn it all with everything else we're going through! I'll definitely update tomorrow with how the surgery goes.
Hi Sarah76, welcome to the forum.
So sorry to hear about your partners' situation. It can be challenging to manage your own diabetic journey let along support someone else so I'm glad you found us.
I wonder if it would be possible to speak with the nurse managing your partners' care or at the hospital regarding how to assist? Given the situation they may be able to jump on a call or meet with you both so that you've got a care plan in place and can be shown what to do as many will just mention bits of info which can be overwhelming to start with.
I do hope all goes well tomorrow, do keep us updated and feel free to call our helpline if you'd like some direct support.
So sorry to hear about your partners' situation. It can be challenging to manage your own diabetic journey let along support someone else so I'm glad you found us.
I wonder if it would be possible to speak with the nurse managing your partners' care or at the hospital regarding how to assist? Given the situation they may be able to jump on a call or meet with you both so that you've got a care plan in place and can be shown what to do as many will just mention bits of info which can be overwhelming to start with.
I do hope all goes well tomorrow, do keep us updated and feel free to call our helpline if you'd like some direct support.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Really hope the surgery is successful tomorrow. Will be keeping fingers crossed for you.
Good to hear that she is on Levemir as to me that is a really great basal (long acting) insulin
As regards the Libre, I am not sure if you are aware but it is important to double check any low (hypo) or high (hyper) readings with a finger prick as Libre is not as reliable as you might hope.... much as it is a great bit of kit. Also if pressure is applied to the site of the sensor, for instance by lying on it in your sleep, it will sometimes give a false low (compression low) when levels are actually fine, so worth bearing that in mind and double checking. I find Libre often reads 1-2 mmols lower than a finger prick so it can show me as hypo when in fact I might be mid 4s or 5s. I usually double check it at least a couple of times in the first few days when my levels are nicely in range and steady for an hour or so, to get an idea of how closely it is matching my finger prick reading. I usually find that it will be fairly consistent with that discrepancy throughout the 2 week life of the sensor, so I mentally adjust for that, but they can sometimes read higher at high levels as well as lower at low levels, so best to check before assessing how much to correct by.
Definitely ask which pumps are available as the choice is usually fairly limited. No point in setting your heart on a particular one and doing lots of research only to find it isn't available in your area. Pumping is not as straightforward as you might expect and a level of competency with Multiple Daily Injections (MDI) is usually needed, particularly understanding basal insulin needs. I wonder if doing the BERTIE online course might help to improve your understanding of insulin usage.
It is great that you are able to support your partner with this because it is not easy long term and many people go through phases of "burnout" where they can't cope anymore and end up not looking after themselves as well as they should. So pleased she is back to taking her bolus insulin regularly as well as basal and her levels are more stable.
Best of luck tomorrow!
Good to hear that she is on Levemir as to me that is a really great basal (long acting) insulin
As regards the Libre, I am not sure if you are aware but it is important to double check any low (hypo) or high (hyper) readings with a finger prick as Libre is not as reliable as you might hope.... much as it is a great bit of kit. Also if pressure is applied to the site of the sensor, for instance by lying on it in your sleep, it will sometimes give a false low (compression low) when levels are actually fine, so worth bearing that in mind and double checking. I find Libre often reads 1-2 mmols lower than a finger prick so it can show me as hypo when in fact I might be mid 4s or 5s. I usually double check it at least a couple of times in the first few days when my levels are nicely in range and steady for an hour or so, to get an idea of how closely it is matching my finger prick reading. I usually find that it will be fairly consistent with that discrepancy throughout the 2 week life of the sensor, so I mentally adjust for that, but they can sometimes read higher at high levels as well as lower at low levels, so best to check before assessing how much to correct by.
Definitely ask which pumps are available as the choice is usually fairly limited. No point in setting your heart on a particular one and doing lots of research only to find it isn't available in your area. Pumping is not as straightforward as you might expect and a level of competency with Multiple Daily Injections (MDI) is usually needed, particularly understanding basal insulin needs. I wonder if doing the BERTIE online course might help to improve your understanding of insulin usage.
It is great that you are able to support your partner with this because it is not easy long term and many people go through phases of "burnout" where they can't cope anymore and end up not looking after themselves as well as they should. So pleased she is back to taking her bolus insulin regularly as well as basal and her levels are more stable.
Best of luck tomorrow!
Flower
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- Relationship to Diabetes
- Type 1
Hi @Sarah76 and welcome
I’m so sorry to hear about your partner and hope things settle and start to improve after surgery.
I’ve had vitrectomies & gas bubbles in both eyes- no sight in left eye central vision in right. It is such a frightening & challenging situation trying to deal with diabetes control as well as coping with limited/altered sight. It is great that you can support her.
Libre can be set to speak glucose values - I use my phone as a reader so don’t know if the Libre reader is the same but presume it is. Go to Settings on LibreLink and turn Text to Speech on.
Tech has moved on so much recently and the one thing I have found so helpful about Libre is having access to my data on my phone where I can see it by using setting such as contrast brightness etc. Unfortunately my pump doesn’t link to an app as it’s a few years old but I think all of the current pumps have phone apps where data can be seen much more clearly than actually on the pump - if it’s a pump with a screen.
I think the Omnipod Dash patch pump is planned to link with Libre2 in the near future so that the Libre data is integrated to the pump making a looped system. If your partner is offered a choice she can ask to see the pumps & pump reps virtually/ face to face to ensure she can manage with the controls/screens/apps.
I hope all goes well tomorrow and she finds a suitable pump to help her manage her diabetes.
I’m so sorry to hear about your partner and hope things settle and start to improve after surgery.
I’ve had vitrectomies & gas bubbles in both eyes- no sight in left eye central vision in right. It is such a frightening & challenging situation trying to deal with diabetes control as well as coping with limited/altered sight. It is great that you can support her.
Libre can be set to speak glucose values - I use my phone as a reader so don’t know if the Libre reader is the same but presume it is. Go to Settings on LibreLink and turn Text to Speech on.
Tech has moved on so much recently and the one thing I have found so helpful about Libre is having access to my data on my phone where I can see it by using setting such as contrast brightness etc. Unfortunately my pump doesn’t link to an app as it’s a few years old but I think all of the current pumps have phone apps where data can be seen much more clearly than actually on the pump - if it’s a pump with a screen.
I think the Omnipod Dash patch pump is planned to link with Libre2 in the near future so that the Libre data is integrated to the pump making a looped system. If your partner is offered a choice she can ask to see the pumps & pump reps virtually/ face to face to ensure she can manage with the controls/screens/apps.
I hope all goes well tomorrow and she finds a suitable pump to help her manage her diabetes.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Librelink only applies to when a phone is used as a reader - it does not apply when using the reader, which you have to download to Libreview on a computer to get TIR and things. Just had a look to see if that possibility is in 'Settings' on the reader, and it isn't. There is however in settings an access 'for professionals' so I clicked on that and it needs an access code entered which I obviously don't have, so no idea if there's anything of any use in there or not.
Lucyr
Well-Known Member
- Relationship to Diabetes
- Type 1
The code is probably caa1c and it used to be just setting up the bolus advisor.
SB2015
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Welcome to the forum @Sarah76
I am sorry to hear about your partner, and I hope that we can help you in supporting her.
Each area offers limited pumps as they reduce the prices of the pumps by taking out contract with specific companies who then also provide support and training for both users and their staff. Each of the pumps do similar things but there are choices between tubeless and tubed.
A number of pumps are looking to link with Libre, but as far as I know none have done this so far. There are makes that do link to sensors, but these are not always funded by the NHS. It would be worth asking about this.
Let us know how you get on.
I am sorry to hear about your partner, and I hope that we can help you in supporting her.
Each area offers limited pumps as they reduce the prices of the pumps by taking out contract with specific companies who then also provide support and training for both users and their staff. Each of the pumps do similar things but there are choices between tubeless and tubed.
A number of pumps are looking to link with Libre, but as far as I know none have done this so far. There are makes that do link to sensors, but these are not always funded by the NHS. It would be worth asking about this.
Let us know how you get on.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
- Status