[Diabetes] General Chat and Support Thread

C-Shore

pew wrote: »

I got my retinopathy results back.

I have a background retinopathy and I am ****ing terrified.

I don't know where to go from here.

I was in the same position as you about this time last year.

Got that letter, freaked and had pretty much bought a white stick and glasses.

Went to the hospital and they basically said that as long as the aneurysm is in the periphery then you're ok. It's if it's in the macular, that's when it's a problem.

To give you my example, last year I got that letter, literally changed nothing about my diet etc., and had the same average BG, and 6 months later in my next scan, it was gone!

Did another scan about 4 weeks ago, got my letter this week and it said I had background retinopathy again.

This time though, I'm not worried. I still have 20/20 vision, my hbA1c is 6.3, which is lower than the last time, and as long as you and I keep getting the scans then there's no real worry.

As long as it's in the periphery, you're ok and it can either reverse (as in my case), or be treated if it progresses.

I know I'm just a stranger on the internet, but I was close to tears when I went in for the next scan after my first reported change in my eyes.
The nurse and the consultant both basically told me there's nothing to worry about.
As long as you manage your BG, it will likely go away, and it did!

I know if you're like me, it's hard not to think about the future and will it happen again, but I'm slowly learning to worry less, and do what I can do.

pew

C-Shore wrote: »

I was in the same position as you about this time last year.

Got that letter, freaked and had pretty much bought a white stick and glasses.

Went to the hospital and they basically said that as long as the aneurysm is in the periphery then you're ok. It's if it's in the macular, that's when it's a problem.

To give you my example, last year I got that letter, literally changed nothing about my diet etc., and had the same average BG, and 6 months later in my next scan, it was gone!

Did another scan about 4 weeks ago, got my letter this week and it said I had background retinopathy again.

This time though, I'm not worried. I still have 20/20 vision, my hbA1c is 6.3, which is lower than the last time, and as long as you and I keep getting the scans then there's no real worry.

As long as it's in the periphery, you're ok and it can either reverse (as in my case), or be treated if it progresses.

I know I'm just a stranger on the internet, but I was close to tears when I went in for the next scan after my first reported change in my eyes.
The nurse and the consultant both basically told me there's nothing to worry about.
As long as you manage your BG, it will likely go away, and it did!

I know if you're like me, it's hard not to think about the future and will it happen again, but I'm slowly learning to worry less, and do what I can do.

Well pretty much I was close to tears when I got it. And still shaking. All I'm thinking is I'm going blind.

I think I really need to get to grips with it. I'm just going to have to change my diet altogether.

The problem is I'm not even sure if what I cook is healthy for my blood sugars. I've been sticking to basmati and vegetables or chilli. I might need a nutritionist or something

C-Shore

pew wrote: »

Well pretty much I was close to tears when I got it. And still shaking. All I'm thinking is I'm going blind.

I think I really need to get to grips with it. I'm just going to have to change my diet altogether.

The problem is I'm not even sure if what I cook is healthy for my blood sugars. I've been sticking to basmati and vegetables or chilli. I might need a nutritionist or something

Are you type 1 or type 2?

What you're going through is exactly what I went through, but mine disappeared, so it can go again.

pew

C-Shore wrote: »

Are you type 1 or type 2?

What you're going through is exactly what I went through, but mine disappeared, so it can go again.

I'm type 2.

I really hope it does

CathyMoran

CathyMoran wrote: »

Is anyone having kidney issues, mine are behaving oddly

I am annoyed, I keep my blood sugars perfect, my HBA1c was 5.3 in the old way but I still have kidney disease, really scared.

CramCycle

CathyMoran wrote: »

I am annoyed, I keep my blood sugars perfect, my HBA1c was 5.3 in the old way but I still have kidney disease, really scared.

Sorry to hear this, not much I can say as it hasn't happened to me, although i had issues when I was younger, they just disappeared with no real reason or explanation.

CathyMoran

CramCycle wrote: »

Sorry to hear this, not much I can say as it hasn't happened to me, although i had issues when I was younger, they just disappeared with no real reason or explanation.

I am trying to reverse it too by reducing my stress levels, getting on to the best about it as well. It was a huge shock and very upsetting when I first heard and I am still getting my head around it.:(

gok

Hi,
Have just trialed an Animas Vibe pump and fairly impressed with it but a couple of questions come to mind

On consumables / running costs - how often does one realistically change the O-ring battery cap (if I don't submerge the pump) and how much does that cost?
I understand that only Lithium or Alkaline batteries should be used and that rechargeable or a no-no, whats the experience here and how long does a battery typically last?

Ideally, I'd love to have CGM but from what I can gather, this is not covered and if one wants this, self-funding seems to be the way forward. Is this still the case or has there been any movement with HSE on this (or anything in the pipeline)?

Besides Animas, I know that there is a medtronic 640 pump which seems to work with CGM and that appears to be covered by the HSE. Would I be better considering the medtronic?

My concern is that the Animas Vibe is out quite a while and that when I get a pump, I'm stuck with the model for at least 4 yours so trying to make the right decision between the vibe and the 640, any thoughts?

Yakuza

We typically get 6 to 8 weeks out of a battery (Lithium). I get mine on eBay (approx €35 for 24) delivered to my Parcel Motel address.
In 2+ years of pumping, we've never replaced the cap. You get one spare with the pump but we always remove the pump when our daughter goes swimming / to the beach or even for her bath / shower.

The thing costs 4 grand, I don't care if it says its waterproof / splashproof, I ain't risking it.

Buford T. Justice XIX

gok wrote: »

Hi,
Have just trialed an Animas Vibe pump and fairly impressed with it but a couple of questions come to mind

On consumables / running costs - how often does one realistically change the O-ring battery cap (if I don't submerge the pump) and how much does that cost?
I understand that only Lithium or Alkaline batteries should be used and that rechargeable or a no-no, whats the experience here and how long does a battery typically last?

Ideally, I'd love to have CGM but from what I can gather, this is not covered and if one wants this, self-funding seems to be the way forward. Is this still the case or has there been any movement with HSE on this (or anything in the pipeline)?

Besides Animas, I know that there is a medtronic 640 pump which seems to work with CGM and that appears to be covered by the HSE. Would I be better considering the medtronic?

My concern is that the Animas Vibe is out quite a while and that when I get a pump, I'm stuck with the model for at least 4 yours so trying to make the right decision between the vibe and the 640, any thoughts?

I'm starting pump training this Thursday:eek: and from what I remember about the CGM, it costs about 3k a year for pump and patches.

My doc told me I might be able to get some funding(2-3 months) for the patches if I bought the pump myself(about 400euro) but I would expect a fight to get that level.

I am thinking of starting off with the CGM myself for a month or two until I sort my basals and try the LTI scheme again then.

I think your options are limited to what pump is supplied in bulk to the HSE or used by a particular consultant, but I'm not 100% sure on that

Dick Dastardly

CramCycle wrote:

I used to have life assurance through my old job, no questions asked, my new place doesn't, whats this likely to cost in terms of loading?

Sorry - no idea. The loading will reflect your diabetic status and any other actual or potential/genetic issues I guess ( family histories etc)

Royal Legend

Quick question, type 2, have not posted here in a long while.

Had retinal check this year, no issue as far as I am aware, but since last Sunday have had to use reading glasses just to read e-mails either on computer or phone. Normally only use reading glasses on small print, now having to use it for anything.
why all of a sudden, anyone any ideas?

Alanstrainor

Has anyone come across this monitor before?

https://www.youtube.com/watch?v=ZTqXRVGb0dk

https://abbottdiabetescare.co.uk/our-products/freestyle-libre

That link may not work from an Irish IP...

Seems like an interesting bit of kit, like a CGM/Glucose hybrid. Effectively you have a sensor which is inserted, and to check what your sugar is, you simply touch the monitor off it and it gives a reading. No calibration required, and each sensor lasts 14 days. It's not strictly a CGM, as it does not alert you in real time, but if you do connect with the monitor, it will give 8 hours worth of readings.

Seems very cool. St Vincents have not started using it, but hopefully they will soon, (and hopefully I can get my hands on one!)

uli84

im so sad today, was waiting for the 'upgrade' on the pump in Mater Hospital for years and just got a call they have it but they applied for exactly same pump for me MMT-715. So disappointed as when I chatted to Medtronic Reps over last few months they were saying any upgrades will get something newer. Is there any way in Ireland to get the new pump without covering whole cost myself? some insurance or instalment payments? or else what is the cheapest pump with the CGM at the moment on the market?

Also, this surely can't be a new pump as i doubt they produce them anymore

ohnonotgmail

Royal Legend wrote: »

Quick question, type 2, have not posted here in a long while.

Had retinal check this year, no issue as far as I am aware, but since last Sunday have had to use reading glasses just to read e-mails either on computer or phone. Normally only use reading glasses on small print, now having to use it for anything.
why all of a sudden, anyone any ideas?

it probably wasnt as sudden as you thought. Your eyesight has probably been worsening for a while and it has now got to the stage where your eyes cant compensate anymore. Get yourself to an optician for an eye test. You just need reading glasses. Old age does that to you The retinal test doesnt check for stuff like that as far as i know.

Buford T. Justice XIX

There was a few posts a while back about not being able to insure pumps on house insurance.

I just insured mine through Allianz, fwiw.

CramCycle

Buford T. Justice V wrote: »

There was a few posts a while back about not being able to insure pumps on house insurance.

I just insured mine through Allianz, fwiw.

Mine is covered through my house insurance as well, think we have AXA or Allianz but there was no loading.

Buford T. Justice XIX

CramCycle wrote: »

Mine is covered through my house insurance as well, think we have AXA or Allianz but there was no loading.

Sorry, Aviva was the company. And no loading either.

Dick Dastardly

Mine cost me an additional c€20 per annum as a listed item. Medtronic gave me a cert quoting a list price of c.€4.5k

CramCycle

Dick Dastardly wrote: »

Mine cost me an additional c€20 per annum as a listed item. Medtronic gave me a cert quoting a list price of c.€4.5k

I am shocked at how many extras I have added and had no loading. Although the excess is quite high on my policy (300-500, cant quite remember) but I have had no loading for my bike, laptops or pump. Although the pump would be the only one worth claiming.

This said, I was told that the cost of such claims would be back in their pocket within 3 years (by their rep on the phone) and the premium would not come back down, so maybe I am just foolishly throwing away money.

It really is only a policy for the house getting burgled or burned down.

cocker5

We had to move house insurance companies as Zurich wouldn't insure my husbands pump and CGM. Now we are with Aviva and they are grand, pump was grand getting it insured but the CGM was a nightmare... put our policy up by €90 a year... better to have it than not to have it.

Royal Legend

ohnonotgmail wrote: »

it probably wasnt as sudden as you thought. Your eyesight has probably been worsening for a while and it has now got to the stage where your eyes cant compensate anymore. Get yourself to an optician for an eye test. You just need reading glasses. Old age does that to you The retinal test doesnt check for stuff like that as far as i know.

Thanks

feeling old now

Alanstrainor

uli84 wrote: »

im so sad today, was waiting for the 'upgrade' on the pump in Mater Hospital for years and just got a call they have it but they applied for exactly same pump for me MMT-715. So disappointed as when I chatted to Medtronic Reps over last few months they were saying any upgrades will get something newer. Is there any way in Ireland to get the new pump without covering whole cost myself? some insurance or instalment payments? or else what is the cheapest pump with the CGM at the moment on the market?

Also, this surely can't be a new pump as i doubt they produce them anymore

That seems a bit crazy, I'd hold off accepting it at all to be honest and then discuss what has happened, and how to get a more modern minimed pump.

gctest50

they probably bought a small pallet of them,
then they discovered that pumps don't suit absolutely everybody,
then got all confused and had to form a comitteee,
while they were at that, time and technology moved on

meanwhile the rest of the world was doing actual work :

Re: Insulin pump therapy, multiple daily injections, and cardiovascular mortality in 18 168 people with type 1 diabetes: observational study


We read with interest the article by Steineck et al (1) reporting the long term effects of insulin pump therapy on cardiovascular diseases and mortality in people with type 1 diabetes. In the mean follow up of 6.8 years, the authors found a

risk reduction of 45% for fatal coronary heart disease, 42% for fatal cardiovascular disease, and 27% for all cause mortality in insulin pump users



as compared with patients on multiple daily insulin injections (MDI). The lower number of hypoglycaemic events in insulin pump users, with the decreased frequency and duration of hyperglycaemia, may have resulted in the reduction of glucose variability, which is associated with vascular complications of both type 1 and type 2 diabetes mellitus (2). Although both continuous subcutaneous insulin infusion (CSII) and MDI therapy are recommended treatment strategies for type 1 diabetic patients, CSII is more effective than MDI in reducing glucose variability.
We suggest another mechanism potentially involved in the lower cardiovascular mortality of insulin pump users. Diabetes mellitus is characterized by a defective mechanisms of vascular repair caused by an impaired regenerative capacity of endothelial progenitor cells (EPCs) (3). EPCs levels are reduced in both type 1 and type 2 diabetes, and this has been related to the development of vascular complications. On the other hand, increased levels of circulating EPCs has been associated with a decreased cardiovascular risk in patients with extreme-duration type 1 diabetes (4) and cardiovascular mortality in nondiabetic people (5). In the Joslin Medalist study (4), the highest EPCs levels were found in Medalists (patients with duration of diabetes of 50 years or longer) without cardiovascular diseases or diabetic microvascular complications, and this was consistent with the unusual survival of these individuals. Moreover, the levels of EPCs predicted the occurrence of cardiovascular events and death from cardiovascular causes in patients with coronary artery disease (5).
We demonstrated an inverse association between glucose variability and EPCs count in type 1 diabetic patients (3); furthermore, an improved glycaemic control may increase EPCs number. As low number of EPCs are important predictors of future cardiovascular morbidity and mortality in high-risk patients, including the diabetic patients (4,5), EPCs count could be relevant for understanding the future vascular risk of type 1 diabetic patients.

Buford T. Justice XIX

gctest50 wrote: »

they probably bought a small pallet of them,
then they discovered that pumps don't suit absolutely everybody,
then got all confused and had to form a comitteee,
while they were at that, time and technology moved on

meanwhile the rest of the world was doing actual work :

Thanks for that.

Going live with my pump today:pac:

CramCycle

Alanstrainor wrote: »

That seems a bit crazy, I'd hold off accepting it at all to be honest and then discuss what has happened, and how to get a more modern minimed pump.

gctest50 wrote: »

they probably bought a small pallet of them,
then they discovered that pumps don't suit absolutely everybody,
then got all confused and had to form a committee,
while they were at that, time and technology moved on

meanwhile the rest of the world was doing actual work :

What is also a real possibility is with their contract, they have taken in a returned pump, refurbished it and decided to save themselves a bit of money while charging full whack to the HSE.

Poor form as they are just presuming everyone will be happy with whatever they get. It would be acceptable if they were giving a discount to the HSE for the refurbished one but I somehow doubt that.

ebbsy

pew wrote: »

I got my retinopathy results back.

I have a background retinopathy and I am ****ing terrified.

I don't know where to go from here.

I have had this for a few years now.

Right eye is very good.
Left eye is less unclear from time to time. Doc says it has stabilised and I have over 50% chance it will get better. It was about half that before.

I get injections in this eye every two months. D'ont feel anything.

I had a few bleeds before. Then I started taking blood pressure tablets (free on the list) and the bleeding stopped. None for a long time now.

Blood sugar levels are real important.

You must keep those stress levels down.

CramCycle

ebbsy wrote: »

I get injections in this eye every two months. D'ont feel anything.

Well now I am more concerned

ebbsy

CramCycle wrote: »

Well now I am more concerned

Well you only go blind from diabetes if you d'ont get the treatment.

So I take the treatment and get on with living.

uli84

Since i lost my battle with the Mater to get the pump with CGM (why are they so resistant to progress?) is there any CGM IN IRELAND that can be used without the pump?