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    • 1 minute ago
      Douglas Kosmicki likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      I was going to comment that there's always a trade off. Am I trading insulin replacement with some other daily treatment? If so, what's the difference? Is the new daily grind more harmful than the old?
    • 1 minute ago
      Lawrence S. likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 16 minutes ago
      Steve Rumble likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 16 minutes ago
      Steve Rumble likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Moderately as this is for others. I don't imagine being offered this myself.
    • 17 minutes ago
      Marthaeg likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 18 hours, 18 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 18 hours, 18 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 18 hours, 21 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I was shocked that so many people haven't heard about it. It is all over social media. It looks promising to me. Of course the trial participants need to be followed for awhile as no drug gets approved by the FDA in short time, but so far all of the first 12 trial participants are insulin free and the 1st participant has been insulin free for over 1-1/2 years with no complications that I've heard of.
    • 20 hours, 24 minutes ago
      Anita Stokar likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 20 hours, 24 minutes ago
      Anita Stokar likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 21 hours, 6 minutes ago
      Ahh Life likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      This question is an advertisement. In my opinion it is a misleading advertisement. Tegoprupart is an immunosuppressant. A trial investigating using the drug with islet cell recipients has barely gotten started. 90-ish percent of all phase 3 drug trials fail. Drug development is hard. I wish them luck at the same time I wish they weren't misleading people about the investigational use of their drug.
    • 22 hours, 10 minutes ago
      Marthaeg likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 22 hours, 10 minutes ago
      Marthaeg likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 23 hours, 49 minutes ago
      Gerald Oefelein likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      AI Overview Tegoprubart, an anti-CD40L antibody, is generally safe and well-tolerated, with a cleaner safety profile than traditional calcineurin inhibitors (like tacrolimus) in early trials, specifically showing lower risks of kidney toxicity and diabetes. Common side effects reported include fatigue, headaches, muscle spasms, and potential infections. National Institutes of Health (.gov) National Institutes of Health (.gov) +4 Common Side Effects and Adverse Events In clinical trials, the most frequent treatment-emergent adverse events (TEAEs) observed included: National Institutes of Health (.gov) National Institutes of Health (.gov) +2 Fatigue (approx. 25.9%) Falls (approx. 22.2%) Headaches (approx. 20.4%) Muscle spasms (approx. 11.1%) Upper respiratory tract infections Sleepiness Key Safety Advantages Over Standard Care (Tacrolimus) Tegoprubart aims to avoid the, often, severe, long-term side effects of standard anti-rejection meds like tacrolimus
    • 23 hours, 50 minutes ago
      Lawrence S. likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      No thanks.
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Without rejection drugs- very likely. With rejection drugs- not a chance.
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Only if I don't need to take any immunosuppression drugs
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      All depends on if anti rejection and immunosuppressive medications are needed. If so I would not be interested.
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      It would depend on the cost and coverage by insurance as well as the requirement for immunity suppressants.
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely provided immunosuppressants aren't required. Also younger people should receive the treatment first.
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      as long as it doesn't require immunosuppression, I'm interested
    • 1 day, 19 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      If it requires immunosuppressive medication I have no interest. I'll continue to manage with insulin.
    • 1 day, 19 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Without rejection drugs- very likely. With rejection drugs- not a chance.
    • 1 day, 19 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely, especially if stem-cell generated islet cells are transplanted without the need for immunosuppressants. If tegoprubart is needed and is found safe after the trials are complete, then likely.
    • 1 day, 19 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Only if I don't need to take any immunosuppression drugs
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    How do you advocate for your diabetes goals/priorities with your care team?

    Home > LC Polls > How do you advocate for your diabetes goals/priorities with your care team?
    Previous

    Does your diabetes care provider discuss/bring up goals from a previous discussion/visit?

    Next

    Does your health care provider ask you if YOUR overall diabetes goals/priorities are aligned with your life goals during your visit or before the visit in prep?

    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    17 Comments

    1. Lawrence S.

      I said “Other”.
      Most times, I’m content to go to visits and review my blood test results, get my scripts renewed, and I’m on my way.
      Occasionally, if there are concerns or symptoms that I want to discuss I will bring them up during the visit. Sometimes, I write them down ahead of time if there are a few issues, or if it will be a while before my visit, and I don’t want to forget about the issue.

      9
      4 years ago Log in to Reply
    2. Gary Taylor

      I answered “other”. I have two primary goals: A1c under 7% (preferably 6.5%) and TIR of 80% or more. I mention those goals occasionally but not at every appointment. I assume that my diabetes care providers understand this and don’t need to be reminded every time.

      1
      4 years ago Log in to Reply
    3. MARIE

      I said other because it’s changed over time. In the beginning when it was all new, we were soaking up info and we presented lots of questions and our own goals.
      We got what we could from the doctors, educators, dieticians, etc. in terms of information and technology. But we quickly learned that many of the medical professionals would not share what they considered to be our aggressive goals and would actually criticize an A1c of 6.0 for being “too low”, so we just moved into ‘smile and nod’ mode. We try to speak as little possible about diabetes at non-endocrinology appointments. We don’t really have to ‘advocate’ with the endocrinologist as she knows our priorities and while she does not entirely endorse our approach, she does support us.

      4
      4 years ago Log in to Reply
    4. cynthia jaworski

      Again talking about goals. My goal, obviously, is to be as healthy as I can be.

      4 years ago Log in to Reply
    5. T1D4LongTime

      I always have a list of priorities and goals ready for my endo to review. This question should have been “Select all that apply”. I also email or call the office as well as listen to my endo’s recommendations as I may have missed an important management goal.

      2
      4 years ago Log in to Reply
    6. Tod Herman

      I keep a list in my phone of issues or questions that I want to discuss with my endo. I see her quarterly. I also keep track of my test results and A1C in that same list.

      Sometimes I don’t have any specific issues. The basic goals are simply to keep things in check and avoid the lows. My endo is fantastic and she lets me be human and “live a little” to enjoy life. I really can’t ask for anything more.

      1
      4 years ago Log in to Reply
    7. Sue Martin

      Goals? My care team only talks about keeping my BG lower. It seems they only really review the last couple of weeks of my data. No one has ever talked about long-term goals.

      4
      4 years ago Log in to Reply
    8. Milly Bassett

      I have a great Endo that allows me to text him when I have a concern with how my body is reacting to different things. Or when I have unusual low blood sugars or high blood sugars. We try to sort it out and sometimes we can fix it and sometimes we can’t. It’s a guessing game either way. But at least he’s there to to read my concerns and responds.

      4 years ago Log in to Reply
    9. Jordan Harshman

      I was looking for the response option “While I know my support team is there for me, I am primarily independent in setting goals and managing priorities.” I get my labs and am interested to hear from my endo about the latest science and tech, but otherwise set my own goals.

      5
      4 years ago Log in to Reply
    10. kristina blake

      I upload – via T-Connect – my pump and CGM data everyh month WHen it is time for a phone appt (I prefer those) the Endo “pulls” up the data and we can talk about whatever I often have to defend my aggressive T1D mgt, reminding them that I believe I deserve the “good labs and TIR” I remind them that I am smart, I’ve been doing this for over 40 years, and I am both willing and able to do the work it entails. Thanks goodness for the T-Connect reports, they “prove” that my A1C isn’t the result of very high bg’s offset by very low bg’s. Sometimes I feel like opening the conversations with “Oh, ye of little faith…”

      3
      4 years ago Log in to Reply
    11. Amanda Barras

      I both attend appts and try to remember my priorities or I email. If I forget to ask something at an appt I email later.

      1
      4 years ago Log in to Reply
    12. AnitaS

      I never really think of short or long term goals. I go to my appointments with a list of questions or ideas that I want to discuss with my diabetes P.A.

      1
      4 years ago Log in to Reply
    13. Eva

      I have a short list of question time I visit my endo.

      #1 – How do I stay my healthiest and fittest?
      #2 – How do I need to modify my diet and/or insulin/carb ratio to achieve my BG goals during exercise like tennis, running, or weight lifting.
      #3 – What additional tests can help me understand how my system (my body) is doing and what I can do better.

      4 years ago Log in to Reply
    14. KCR

      My goal is simply to live a healthy life with this disease. For me, this depends more on mental health practices (such as meditation and self-compassion) than diabetes goals specifically.

      2
      4 years ago Log in to Reply
    15. Wanacure

      I used to use website portal to send & receive emails. But right now having trouble accessing.

      4 years ago Log in to Reply
    16. Amy Schneider

      I don’t feel insurance allows my care team to spend the time I might want to go over goals/priorities.

      2
      4 years ago Log in to Reply
    17. Jennifer Edmiston

      I come to my visits with a list of items and also communicate with my team between visits. By doing both, I am able to stay on top of my goals and keep myself on track.

      3 years ago Log in to Reply

    How do you advocate for your diabetes goals/priorities with your care team? Cancel reply

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