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    • 10 hours, 42 minutes ago
      lis be likes your comment at
      How willing would you be to take immunosuppressants if you were considering an islet cell transplant?
      Nope, T1D is a manageable thing with today's technology. I'll keep the devil I know.
    • 11 hours, 13 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      It seems to get harder every year. They seem to be looking for younger and newly diagnosed people.
    • 11 hours, 13 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      Agreed, and there are plenty of issues aging with T1D.
    • 16 hours, 35 minutes ago
      eherban1 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.
    • 16 hours, 35 minutes ago
      eherban1 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.
    • 16 hours, 35 minutes ago
      eherban1 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, 1 hour ago
      Karen Newe 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! 🎀 ྀིྀི
    • 1 day, 2 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these. I'm not interested and have not even heard of some of them. The fewer gadgets the better.
    • 1 day, 2 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      How about “None of the above”?
    • 1 day, 2 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these
    • 1 day, 8 hours ago
      John Barbuto 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?
      I agree with Molly. I’m moderately concerned because if I were extremely or very concerned, I just wouldn’t participate. I’m concerned for others who are brave enough to risk their own health for the sake of research and helping others.
    • 1 day, 8 hours ago
      John Barbuto 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! 🎀 ྀིྀི
    • 1 day, 12 hours ago
      lis be 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?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 12 hours ago
      lis be 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?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 12 hours ago
      lis be 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! 🎀 ྀིྀི
    • 1 day, 12 hours ago
      Natalie Daley 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! 🎀 ྀིྀི
    • 1 day, 13 hours ago
      ChrisW 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?
      Well the first person in this trial has been insulin-free for over 1-1/2 years and has been feeling fine. All 12 participants in this trial so far are off of insulin. The trial is now going to include people with t-1 diabetes and some kidney damage as this immunosuppressant (tegoprubart) has shown no toxic effects to islet cells or to kidneys. I will keep watching as the trial progresses. This question only asked if we had heard about it. I didn't see the question as an advertisement.
    • 1 day, 13 hours ago
      ChrisW 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! 🎀 ྀིྀི
    • 1 day, 13 hours ago
      Brian Vodehnal 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?
      Concern is relative to outcome. Getting a five year reprieve on the daily management of T1D might be worth it.
    • 1 day, 15 hours ago
      Bonnie kenney 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! 🎀 ྀིྀི
    • 1 day, 15 hours ago
      Bonnie kenney 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.
    • 1 day, 15 hours ago
      Bonnie kenney 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?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 15 hours ago
      atr 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?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 15 hours ago
      atr 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?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 15 hours ago
      atr 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?
      I just love your comments. 😃
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    Were you experiencing DKA (diabetes-related ketoacidosis) when you were diagnosed with T1D?

    Home > LC Polls > Were you experiencing DKA (diabetes-related ketoacidosis) when you were diagnosed with T1D?
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    Several companies are investigating islet cell replacement therapies for people with T1D, some of which would require patients to be on immunosuppression therapies. Out of the following options, which of these outcomes would be the most meaningful and desirable for you?

    Sarah Howard

    Sarah Howard has worked in the diabetes research field 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.

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    32 Comments

    1. Amanda Barras

      I don’t know as I had just barely turned 4. I remember the Drs visit and the hospital but not the nature of my condition upon being admitted.

      5 years ago Log in to Reply
    2. Ahh Life

      Being only 4, I cannot remember a thing. In the subsequent 70years, however, I have only been symptomatic once or twice. ლ( ͡◣ ͜ʖ ͡◢)ლ

      2
      5 years ago Log in to Reply
    3. ConnieT1D62

      I don’t know. Perhaps I did. It was Nov/Dec 1962 and I was 8 years old. I remember being very sick “with something” causing nausea, vomiting, malaise, weight loss and extreme thirst with constant peeing.

      5 years ago Log in to Reply
    4. Steven Gill

      Originally diagnosed TYPE 2 and yes at that time.

      5 years ago Log in to Reply
    5. Sherolyn Newell

      If I was, it making me sick. My A1C at diagnosis was 14.1, so maybe. My first diagnosis was also Type 2. By the time I went to an endo, I was starving myself down to 8.3. At that time, my endo said it would be interesting to know if I had been experiencing DKA previously.

      5 years ago Log in to Reply
      1. Lynn Smith

        In 1967, at the age of 12, I was finally hospitalized for my symptoms. I had not kept down any food for nearly a week. Since I was already a skinny kid, that brought my weight down even further; I looked like a skeleton. Don’t know what my blood sugar was, but I am sure it was very high. My vision was very blurry so I had to wear glasses for a month or so until my body adjusted to normal blood sugars. I think I was in the hospital for four days.

        5 years ago Log in to Reply
    6. Joan Fray

      Sixty years ago. I was 12. My dad (t1d) himself) diagnosed me and took me to his doctor at Palo Alto Clinic. Home same day.

      5 years ago Log in to Reply
      1. AnitaS

        Wow, how wonderful your dad recognized what was going on and took you to an endo right away.

        5 years ago Log in to Reply
    7. rick phillips

      I was experiencing DIHD syndrome however.

      Dammit I hate diabetes syndrome

      3
      5 years ago Log in to Reply
      1. cynthia jaworski

        what is DIHD syndrome?

        1
        5 years ago Log in to Reply
    8. Mick Martin

      I don’t know as when I was initially diagnosed I knew virtually nothing of diabetes … even though I had a brother who had already been diagnosed as a type 1 diabetic. (Many years ago, type 1 diabetics were sent away to ‘special’ diabetic schools. My brother was more than a 100 miles from me, and the rest of my family.)

      What I do know is that when my doctor tested my urine, which was the way to test for diabetes, i.e. it was years before blood glucose meters became available for even doctor’s surgeries, I took my first insulin injection within about 1.5 – 2 hours. (I was admitted to hospital for about 1 week and was constantly bombarded with information of what to expect; what life was going to be like for me, etc. and was given no written information that I could refer back to.)

      5 years ago Log in to Reply
    9. Tere North

      The ketones weren’t tested, but they had to dilute my blood 50/50 to get a reading. Even then it was 800, so 1600 without.

      5 years ago Log in to Reply
    10. Amy Jo

      Found out due to a college class assignment that included a health screening.

      5 years ago Log in to Reply
    11. William Bennett

      I was certainly feeling sick, but not tipped over into DKA yet. Dr told my wife (I was 28) “If you hadn’t come in, you probably wouldn’t have been able to wake your husband up tomorrow morning.” So DKA adjacent, anyway!

      5 years ago Log in to Reply
    12. connie ker

      I was told over the telephone to my husband’s endo Dr. office to go buy a ketone test kit at the drugstore which I did. It showed ketones and the meter showed HIGH. I was 49 years old and later learned the term LADA which is what I have 23 years later.

      5 years ago Log in to Reply
    13. Conniekaycox

      Was forty nine. Spent 4 days in the ICU and almost died. Was horrid. That was march of 2020 when pandemic started. Am so thankful to all of you for sharing on here. Has been a rough year and a half. Without this site would have little to no information from people who live with this daily. Your all awesome.

      3
      5 years ago Log in to Reply
      1. Beth Franz

        The lack of good information from medical “professionals” is unreal. Like you, finding online forums with other patients sharing stories and info saved my life as well.

        5 years ago Log in to Reply
    14. Natalie Daley

      My doctor sent me for a five-hour fasting blood sugar test. The lab stoped it when it ranged 350-35. They said they don’t want to kill me. It was 1986 and this was my 40 birthday present. My GP treated it as Type 2 and had a dietician design a Draconian diet of 800 calories to lose 25 lbs. she agreed to 1100 but no more. I kept the diet and the weight off for five years. When my annual A1C was 12, I was placed in 70/30 insulin. He had no idea what to do with. A specialist at OHSU saved my life.

      5 years ago Log in to Reply
    15. Bob Durstenfeld

      I was 18 months old and had severe, chronic , diaper rash.

      5 years ago Log in to Reply
    16. Janis Senungetuk

      No, but I certainly didn’t feel well. It was 1955, I was 8 yrs. old. At no time during the whole month I was hospitalized did anyone say a word to me about diabetes, insulin injections or a specific diet. I’ll never understand why. All of the MD’s only spoke with my parents, just left me to wonder what was wrong.

      5 years ago Log in to Reply
    17. Becky Hertz

      I don’t know for sure but I doubt it. I Summit feel bad, just peeing and drinking and losing weight.

      5 years ago Log in to Reply
    18. AnitaS

      Yes, I was in DKA and lapsed into a coma at the hospital. Total time in the hospital was about 7 days. That was in 1973 and I was 9yrs. old at the time.

      5 years ago Log in to Reply
    19. LizB

      After feeling run down for a few weeks and then starting to feel really bad, unsable to do anything but drink and pee, I finally saw a doctor. He asked me to pee in a cup and then looked really scared. He told me to go to the ER immediately, don’t stop to go home for anything. He wrote a note asking them to take me right away. I still had to wait at least half an hour in the waiting room!
      In the ER the doctor there said she couldn’t believe that I was still conscious. She told my mother I should be dead. I got moved to a room very quickly where I was hooked up several IVs and monitors. Nobody really explained anything to me. I was begging them for a drink but wasn’t allowed anything. After 4 days they finally started to get everything in range and I was allowed to eat & drink. I spent 8 days in the hospital.

      5 years ago Log in to Reply
    20. Henry Renn

      Don’t know for sure but wasn’t really sick when insulin was begun at home.

      5 years ago Log in to Reply
    21. George Lovelace

      Father was LADA T1, I was Dxed in 1964, age 15. Surprised both Parents didn’t notice the 27 lb. weight loss, probably DKA caused.

      5 years ago Log in to Reply
    22. Denise Lyons

      Went to my Dr concerned that I might have type 2 diabetes. He brushed it off without any testing because I was a fit runner. Two months later I was found DKA, non responsive at home. Well he was right I’m not a type 2 diabetic…. This was 2020 at age 50.

      5 years ago Log in to Reply
      1. Karen Newe

        Stores like these frustrate me so much. A simple finger stick would have provided the information needed. I wish this became as standard as the blood pressure test.

        5 years ago Log in to Reply
    23. BOB FISK

      I was diagnosed in 1963, after a long series of mishaps that prevented me from going to my doctor. By the time he saw me, there was no doubt I was diabetic. He did a Benedict’s test, which of course was 4+. I was admitted to the hospital that evening and became unconscious during the night because of DKA that had existed for quite a while.

      5 years ago Log in to Reply
    24. lis be

      I don’t know, it was over 40 years ago. My mom brought me to the doctor because I was drinking a lot of water, peeing a lot and super thin. She saved my life! but I don’t remember hearing the term DKA until I was in my 20’s

      1
      5 years ago Log in to Reply
    25. PamK

      I was 2 1/2 years old, so I really don’t know if I was showing DKA symptoms.

      5 years ago Log in to Reply
    26. Molly Jones

      No DKA for me. I was diagnosed as type 2 during my annual check up at the age of 30. I don’t remember feeling any symptoms. The medications didn’t affect my BG and a around a month later the diagnosis was changed and spent a few days in the hospital getting adjusted to insulin.

      5 years ago Log in to Reply
    27. Beth Franz

      Yes with symptoms spanning over 2 months. Stopped eating, lost 40 lbs and barely walked upright into the ER that day with 500+ bg and zero potassium reserves. I had just moved into this city and had no PCP yet nor the ability to get into see a doc beyond the ER. I saw the look on that nurse’s face in the ER once my results started coming back as I got wheeled into the ICU. Apparently I was hours away from a coma. Misdiagnosed as T2, put on wrong amounts of insulin/meds and sent home. Retooling my diet, insulin amounts/types, and reading copious amount of information online is what has kept me alive!

      5 years ago Log in to Reply

    Were you experiencing DKA (diabetes-related ketoacidosis) when you were diagnosed with T1D? Cancel reply

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