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  • Activity
    • 8 hours, 58 minutes ago
      KarenM6 likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      "It's a forever learning curve" - so very true
    • 9 hours, 5 minutes ago
      KarenM6 likes your comment at
      For pump users: In the past 3 months, have you had issues with insulin delivery due to a bent cannula or occlusion?
      I hesitate to bring this up but I am quite sure this happens more than people realize. I use a tubed pump and small amounts of total daily insulin and have checked the tubing for YEARS for bubbles. YES, they are difficult to "notice" unless you have a good light behind the clear tubing because the insulin is also colorless. I detach and check the tubing in the morning and before bedtime if not before the evening meal...I'm talking about significant bubbles----8-10-or12 inches in length can appear and you would NOT notice them unless you were looking. I wonder how many people wonder why their blood sugar is occasionally high and it's being caused by a significant bubble...NO, not the champagne sized version that's often mentioned to "ignore." The pump company I deal with tried to get me to switch to injections instead but I am an EXPERT with the bubble situation. Also, comments over the years that I am probably not filling the reservoir correctly, etc....just plain silly. I am NOT new at this...LOL!!!
    • 9 hours, 30 minutes ago
      KarenM6 likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 7 minutes ago
      Janis Senungetuk likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 7 minutes ago
      Richard Wiener likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 27 minutes ago
      Ahh Life likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I began playing Pickleball last year in March. When the temperatures started to rise the extra effort my body was experiencing because of the heat got my body hormones out of balance and I began experiencing nausea, higher heart rates and feeling very uncomfortable. I soon realized that I cannot play when is too hot or I’ll end up with ketones. Any new activity when on. Insulin requires adjustments. It’s a forever learning curve. Adding to the heat, last year I was having some absorption problems by the overuse of my abdomen. I have now move the infusion sites to my upper front side and it’s working much better.
    • 14 hours, 27 minutes ago
      Kristine Warmecke likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 28 minutes ago
      Ahh Life likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I answered no, but I do experience nausea and/or vomiting, usually on a daily basis, but this is because I have gastroparesis. I have rarely been able to eat breakfast over the last 20+ years as I end up vomiting it all back up ... try explaining that to ward staff in hospital(s). ;-)
    • 14 hours, 47 minutes ago
      Becky Hertz likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 1 day, 7 hours ago
      Wanacure likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      After 62 years I have skin issues everywhere. I am an avid at rotating every time I change my infusion set. When I was on multiple daily injections, up to 9 per day, I had massive skin hardening. Since on the pump it’s not nearly as bad that’s been 33 years. I take very little insulin my daily basal comes out to 9 units over 24 hours I eat two meals that I count carbs for and try to keep at a minimum of 30-40 per day. Everything is going well. Rotation is key
    • 1 day, 7 hours ago
      Wanacure likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      I use a pump and have had issues with insulin absorbtion. It seems I have a lot of them on the side I primarily use for infusion sets. I recently switched to the other side of my abdomen and dropped more than one point on my a1c.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      When I first started with my current Endo we would discuss the released and upcoming products and I would tell her about the 'off-market' applications and devices, we both learned from each other. But she was so good with helping me transition to the Dexcom and then the Tandem after Animas was pulled from the Market. She followed my Dex and even finer tuned my Basals and early this year I got an "unbeleivable" 5.4 A1c and we are both extremely happy!
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      Yes. But then I self-selected when choosing an endocrinology clinic that pursues cutting-edge advances 40 years ago. Cutting-edge is a phrase that is also often called bleeding-edge because it is often experimental, hit or miss on results, and very expensive. I am convinced the “bleeding” refers to $$$.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      not anymore, and I am happy about it! Most of the time they were recommending things that had been recently pitched to them by a pharmaceutical salesperson or a durable medical supplier. The doctors would give patients the "free samples" and it was often not the best fit, then after the "free" supply ran out, the prices were exorbitant. Maybe it still happens, but I haven't seen it for a while.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      The need for better CGM accuracy is a big consideration for me. Also my control is pretty good right now (a1c in the low 6 range). Although I am tempted by the sleep and exercise modes which would be very helpful since I’m getting back in to exercise. So…I keep sitting on the fence…
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      I don’t want to change from the Omnipod Dash to Omnipod 5 because the minimum target blood glucose is level is higher than where I like to keep it. My A1C is currently 5.0.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      For the last 5 years, the highest HbA1C I've had was 5.3. For the last 3 years the high, low, & average have been 5.2, 4.7, & 4.9. I'm not willing to go to an AID that sets a target of 6 to 7.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      I do MDI. For the last 7 years my A1C has averaged around 4.8. I have no reason to believe that a closed loop automated system could do that well.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      There are many reasons, as well as "something else." My arthritic fingers do not serve me well with a cell phone. I have trouble putting the needle covers back on to my insulin pen needles. If I had to take care of all the fine muscle issues associated with setting a pump up, I would probably require assistance. I am also not drawn to the issues I hear about tissue damage at the infusion sites, or knowing whether everything is seated properly and the insulin is actually flowing. Finally, I just have some kind of negative karma with electronics. I have worked as a lab biochemist. Somehow, I find the weaknesses of every machine in the lab. (the ideal industrial beta-tester) Having said that, what I hear about the numbers achieved with the tandem CIQ gives me pause to consider.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      Like others, the "closed loop" runs me too high - even the target bg is too high for me. I use the TandemX2 with BIQ integrated wqith my Dexcom G6. I also appreciate - and use - the temp basal function often. I would lose that with CIQ. L:ike Nilla Eckstrom (I think?) I like to be between 80-90, with maybe up to 120 after I eat.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      The constant refilling and site changes...doesn't seem worth it.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      Luddites just may be the most comfortable people on earth. 🙃 
    • 1 day, 9 hours ago
      Antsy likes your comment at
      For pump users: In the past 3 months, have you had issues with insulin delivery due to a bent cannula or occlusion?
      Holy cow! 8 to 10” bubbles? There is definitely something wrong if that is happening to you. I occasionally get 1/4” inch 10” is excessive. Have you gone in and shown your pump instructor how you’re doing it so that they can help you figure out the problem?
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      Aside from the first year after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
      When I was put on insulin, the first dietitian I payed to see said I could eat whatever I wanted as long as I followed the set number of macros (carbs, protein, fats). The stupid diet had my blood sugars all over the map. She didn't care/listen when I told her milk, bread/pasta made me feel really sick. She said because I was on insulin I need to eat a high carb, low protein and low fat diet. What bad advice! Thankfully, I came to my senses and starting reading the experiences of other T1D's who were following the The Bernstein diet.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      Aside from the first year after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
      Saw one, recently out of school, when I was first diagnosed ten years ago. She insisted I needed 150 grams of carbs per day minimum and handed me a sheet with meal plans. She explained that I needed those carbs to keep my brain functioning properly. GEEZ. I can only hope she's learned a thing or two since then.
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    Have you ever had an islet cell transplant or a pancreas transplant?

    Home > LC Polls > Have you ever had an islet cell transplant or a pancreas transplant?
    Previous

    How many of the following relatives in your life have had T1D? Select all that apply.

    Next

    Have you ever participated in a T1D clinical trial? Tell us about it in the comments!

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    15 Comments

    1. Bob Durstenfeld

      I would if I were a good candidate and did not need the NASTY immunosuppressive drugs.

      3 years ago Log in to Reply
    2. Nevin Bowman

      Never had an option.

      3 years ago Log in to Reply
    3. rick phillips

      Sign me up twice

      3 years ago Log in to Reply
    4. Franklin Rios

      Is it possibe?

      3 years ago Log in to Reply
    5. Becky Buchanan

      I was approved for one. It was at Jackson Memorial Hospital in Miami Florida. I lived over 1400 miles away. The distance concerned me as well as paying for the anti-rejection medication. They said at that point the drug companies were paying for them but they didn’t know how long it would continue for. Those two things made me decide to not pursue it.

      3 years ago Log in to Reply
    6. Linda Murphy

      So that’s what they mean by a transplant, just the cells, not the entire pancreas?

      3 years ago Log in to Reply
    7. GLORIA MILLER

      I went down for the screening in Miami around 2012 to have the islet cell transplants. Unfortunately, I have a certain type of antibody in my body that disqualified me from getting the transplant. They said they thought since I only birthed one child that I would not have the antibody but I did. I was very disappointed. This particular type of antibody would have made it more likely I would have rejected the transplant.

      3 years ago Log in to Reply
    8. connie ker

      I live in a smaller city so these new trials are done in large teaching hospitals in large cities or connected with medical schools.

      3 years ago Log in to Reply
    9. Ahh Life

      We have transplant specialists in our area. The long-term statistics are not yet at 100%. Advanced age mitigates against it. Anti-rejection medications are clouded somewhat by the virus age. All in all, if you are in the right circumstances, go for it. Otherwise, maybe not.

      3 years ago Log in to Reply
    10. Kristine Warmecke

      Back in the late ’90s I signed up to be on the list for an islet cell transplant at the University I’ve always gone to for endocrinology, the early day of the research. I do have a friend I met because of Moyamoya that has had a pancreas and kidney transplant. She’s doing wonderful now, after a couple of scares.

      3 years ago Log in to Reply
    11. Jana Foley

      I have not and at this time I don’t believe I would. Transplant means a different kind of maintenance for the rest of my life and I am not sure I’m up for it.

      3 years ago Log in to Reply
    12. Amanda Barras

      I contacted staff about the islet transplant and found I was about 20 lbs over weight and wouldn’t qualify.

      3 years ago Log in to Reply
    13. Janis Senungetuk

      Seriously considered applying for the Edmonton Procedure clinical study that was conducted thru Northwestern University in Evanston, IL. My daughter and her family live there. Although my endo thought I met all of the study requirements I decided that the need to continue taking anti-rejection drugs wasn’t a positive exchange.

      3 years ago Log in to Reply
    14. Bill Marston

      The Q wasn’t “would you or have you CONSIDERED a transplant”. It was “Have you ever had an islet cell transplant or a pancreas transplant?” I have – I received the human islet cell transplant at Univ of Pennsylvania, one of some 35 international centers, back in 2002. I recall that there were 350 of us in that phase. I tolerated the immunosuppressants as did 7 others but I heard 1 dropped out very quickly. Doses were adjusted regularly/frequently based on blood studies. **IT WAS AMAZING** One overnight, infused cells into portal vein of liver, discharged with the Rx and a halved insulin which then was ZERO insulin in a matter of days!!! I bought a Chunky chocolate-raisin-nut candy which had been my favorite b4 becoming diabetic. HEAVEN. After a year or two, gradually, cells became less effective so per their protocols I got a 2nd dose (first dose had been @the minimum in the range of thousands of cells per Kg of body weight). So, back to being non-diabetic again!! This time less than a year, taking insulin again and eventually I retired from being a subject. I have been continuing as the Type 1 Diabetic that I really am since 2006. I would absolutely do it again except for my age, cancer history, CKD et al (AKA I got older). … and OF COURSE medical science learned from our participation – which, alone, for me was nearly enough reason to have done it all.

      3 years ago Log in to Reply
    15. Sally Numrich

      No, but I did take part in the Viactye stem cell study in San Diego to test device and procedure safety standards. I didn’t get enough cells to make insulin although I was tested every month to see if I was producing insulin. I do feel the cure will be in stem cell research but it is a long way off. Probably won’t see it in my life time but if I don’t age out, I will continue to volunteer for studies,

      3 years ago Log in to Reply

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