New Here Caring for a Diabetic

Hello all, I am not a diabetic but my sister is and I am here for information. My sister was diagnosed at the age of 21 with Type 1. She is now 62 and has had a kidney transplant, heart attack, stroke and many other problems over the years. You can probably tell from her many medical issues that she has never taken care of herself properly and now that she’s had a stoke it is even worse. She is still living alone but I do just about everything for her from managing her finances to ordering all of her supplies and changing her site every 3 days. I feel for all of you suffering from this disease and just want to encourage each and every one of you to do all you can to keep your diabetes under control.
I have a couple of questions, which I might add have already been answered by my sister’s doctor, but I didn’t like the answers. I know we must trust our doctors but they are limited in their knowledge when it comes to living with diabetes day to day.
First, is it ok to go longer than 3 days before changing your pump site? When my sister was doing her own site changes she was horrible about changing sites regularly. Since I took over (about 18 months ago) I change it every three days religiously. She is going to be moving away from me and I have hired a caregiver to change her site but would like to have it changed just twice a week. Say Mondays and Thursdays. Do you think that would be sufficient or are you all very strict about changing sites?
Second question, can I prefill the insulin cartridges and store them in the fridge? My sister has a Tandem t:slim x2 pump and a G5 Dexcom
Thank you all for any advice you can give me.
Carlene
Pinedale, Wyoming

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Both my wife and I have pumped since 1997 and 1996, respectively.

I’ve gotten on her for leaving her sets in too long (like more than 4 days) but she hasn’t shown signs of scarring and she hasn’t had infections in all that time. Others are not so lucky. So it depends.

I change mine about every 2-3 days and am fine after all these years.

My honest suggestion is get her to change by the third day. If using a cannula-type set, do NOT change the set near bedtime as they are more prone to occlusion.

And that concludes my short course on changing sets. :slight_smile:

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Hi Carlene, welcome to TUD! Lots of caregivers here, not just people with the big D, so you’re welcome to participate and ask questions. I can’t reply on the Tandem cartridge question since I don’t use one, but as for changing infusion sites religiously on the 3rd day, I think there’s a bit of a fudge factor there in terms of what the rules say vs what people actually do. But if I were giving instructions for someone else, I would go with being very regular about it. Dunno what level of expertise the person you’re hiring has, but as you know it’s a complicated and unpredictable disease at the best of times, and unless you’re very accustomed to dealing with all the vagaries of it, simple is best.

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I think the most important thing is that sites are changed when they aren’t working well. If a site is working great at day 4 still, then it’s no big deal except that it might lead to scar tissue in the future, though this varies for every person. A site could go bad within hours or a day after changing it though, and this is something that needs to be addressed right away.

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@CBarber

Carlene - you’re very kind to take care of your sister, and as others mentioned, this site is a great resource for real life diabetic questions (answers based on personal experience).

3 days is all I can keep an infusion site before it degrades to the point where there’s next to no absorption of the infused insulin. In other words the site is useless, and with me my sites tend to fail spontaneously. Unfortunately if you’re unable to change your site out for a few hours this will mean rising blood sugars.

There was a time when I could keep my sites for 5 days … and infuse well over 100 units. Nowadays I use a lot less insulin, but even after 50 or 60 units my sites need to be changed out (every 72 hrs).

Good luck!

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I don’t usually go by an exact consistent number of days, I just swap sides when the reservoir gets too low. Depending on how much I used during those days, that could mean anywhere from 2 to 4 days. Because I use a CGM as well, I actually only swap sides every other change (since the CGM lasts about twice as long as the reservoir).

I suppose you could, although it is not something I would be likely to recommend, because I think it is best to keep the insulin in the vial as long as possible. I don’t think it would really cause any noticeable problems, so it’s really your choice.
Some people develop scar tissue more quickly than others, so my only suggest is to rotate sites when you change it, but there is no need to get excessively worried about it. In fact, some people say that changing it less often can help because it means less stabbing (inserting new infusion sets), so it’s kind of a balance between how often you stab yourself (for lack of a better term) vs how long you leave it in.

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The three day rules depends on two things.

If a site is not absorbing or hurts it must be changed immediately, be it one hour or 4 days.

You have to judge the risk of infection versus the benefit. Having had a significant infection which required surgery twice I change mine religiously at 3 days. With a history of kidney issues I would think of the risk of infection versus the benefit of going longer than 3 days.

Just me, and everyone is different but in my case I consider risk vs reward.

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Do you have access to her Dexcom data on your cell phone? If you do, you can probably see if there is a problem and call someone to go over there. Thats probably necessary anyway. Pump failures happen and you need to address those right away…not in 3 days.

If you dont currently have access…see Nightscout. http://www.nightscout.info/

Also, I wouldn’t be so hard on her about “not managing” her diabetes. I doubt theres a single diabetic out there who’s family believes that they CAN manage their diabetes, lol. People who are not diabetic have strokes and heart attacks when they are in their 40’s. Its certainly not uncommon in your 60s, even for non-diabetics. https://www.everydayhealth.com/news/think-youre-too-young-stroke/

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Yes, I do have her Dexcom data on my phone and haven’t had a good night’s sleep since I installed it. LOL My sister tends to sleep through the alarms or chooses to ignore them, I’m not sure which. I do understand that as just a family member and not a diabetic I can’t begin to know what diabetics go through trying to manage their disease. Thanks so much for your response.

Caregivers suffer too. Blessed are the caregivers. We call you a “type 3” diabetic, as a caregiver for someone with diabetes.

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That’s funny and I have not heard it before. I am definitely a Type 3 diabetic!

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CBarber, I admire so much what you are doing for your sister. I have been a type 1 for 60 yrs and am now 68. I am so impressed with
how well you know your sister and think it is very admirable that you are trying to help her and are so involved with her care. That can’t be easy on you. My sister loves me dearly and has seen all the hard work I put into living with this illness. She brags about me all the time. I can’t believe how frustrating it must be for you to see your sister not doing everything she can to be healthy.

You are extraordinary.

Sorry, but I have done very well without a pump, so have never used one.

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Thank you for your kind words, Marilyn. The pump has helped my sister quite a bit. She has been using one for many years and is now able to keep her A1c around 8 but before the pump she would get as high as 13 at times. My entire family is very supportive of my sister. My youngest daughter gave her a kidney 16 years ago and it is still doing great.

I’m so glad you have been able to control yours so well without a pump. I’ll bet you are very conscientious about it at all times. Something my sister is not. She was not diagnosed until the age of 20 and in the early years never educated herself or altered her life in any way. There were many years that she didn’t even see a doctor. I stepped in after the kidney transplant and make sure she sees her doctor every 3 months and do what I can but in the end her food choices and how she handles it is all up to her.

Thanks again and I hope you continue to do well in your diabetes management.

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I’ve been pumping for 5 years now and love it. I was diagnosed in 1957 at age 9 and have never had a problem with absorption even during all those decades of multiple injections daily. I change my infusion set religiously every 3 days for 1 reason: the insulin deteriorates without refrigeration during those 3 days. Humalong in the vial is to be kept refrigerated. Rght now my blood sugar is higher because I have 8 units left and its’ been exactly 3 days. This is a pattern I noticed when I first started pumping. Once I overfilled the reservoir to test this. Sure enough, on the 4th day my blood sugar ran higher and it was over the top on the morning of the 5th day. I live in the high heat and humidity of Florida summers, so from approx. May - Oct. I change out my infusion set with a lower amount of insulin in the reservoir every 2nd day. Humalog in the vial is good for 28 days when kept refrigerated (read the detailed info. In the box). When I open a new vial I date it and throw the bottle away the 28th day even though there is a spinch remaining. Warm insulin in a reservoir for too many days deteriorates and affects absorption and blood glucose.

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Thank you for the information. I had not thought about this and am going to pay more attention to this. Since my sister got the Tslim pump I can fill the cartridge and will last 5-6 day. Now I realize that might not be the best idea.


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Hello, I sincerely sympathize with your sister’s situation. I understand your concern and wish you success in having better days for your sister.
I do not wear a pump. I can not answer you validly. My personal experience tells me that the site change is a convenience but not very worrying. I pricked for 34 years, in my case, the change of site does not make a difference. However, if your sister has been through all these difficulties, I think she wants to live and that she can go even further. If your sister has dry and cracked skin, if she has fingers, heel and plantar of foot with a crust of hyperkeratosis, she has the opportunity to reduce diabetic complications very significantly. I advise you to ask your Dr. to give him a treatment to reduce the amount of immature keratinocyte that hardens his glands. To naturally get rid of masses of dead cells, cellular debris and hard crusts on his skin. She will have beautiful days in life again.

You can’t pre-fill the cartridges. I would love to do so, but the plastic that use for the cartridges degrade the insulin. The insulin becomes less potent the longer it’s in the cartridges, or any plastic for that matter. That’s why it’s wise to change both the cartridges and the sites every 3 days. I didn’t believe it at 1st and would sometimes leave the cartridges in for longer, until I noticed I had to do more corrections and had higher bg on the 4th day.

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I don’t doubt your report but my experience has been different. I only use about 22 units of insulin each day. I use an insulin pump with a 300 unit capacity cartridge which I fill up. While I change my infusion site every three days, I run the cartridge until it empties, about 10-12 days.

I watch my blood glucose levels closely and use a continuous glucose monitor. I have not noticed any unexplained higher glucose trends when doing this. I’ve been running insulin cartridges for 10-12 days for a few years now. My glucose levels do not degrade with cartridge age, at all.

I’ve seen reports like yours and I do not doubt your observations. I’m just here to say that there are some people like me who are not experiencing the same thing. I do not live in a tropical climate like you and perhaps that might have something to do with it.

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I agree, when I pump I never change the 300U reservoir until it is empty and never noticed a problem. While I do live in Canada, Toronto summers aren’t much different from New York and I do a lot of walking around outside. I’ve refilled reservoirs several times too and never had an issue.

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I live in San Francisco which is not a tropical climate, it’s cold. Insulin potency is reduced by the plastic. That’s why they only store it in glass vials. If you can get away with 10 days, that’s great for you. But for most type 1 they will have to increase the dosage and basal after 3 days of use.

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