Scared: May need a pancreas transplant

Posted by lovette26 @lovette26, Oct 25, 2019

What do you do when you’re doctor gives up on you. I get much HELP dietitian exercise and he says there nothing can be done I have faith but when you doctor gives up on you im only 54

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@lovette26, Good Morning and Welome to Mayo Connect. I am a liver and kidney transpant recipient (2009 – Mayo). I am concerned about hearing that your doctor says he is giving up on you. I have experienced doctors sending me to a higher qualified specialist on my transplant journey. And once I was even unlisted from the transplant list for a period of time. I was able be treated and relisted for my transplant only because my local transplant knew to send me to Mayo for the specialty care that I needed.
Have you considered changing doctors, or seeking a 2nd opinion? Is an organ transplant in your future?

Liked by Retired Teacher

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@rosemarya

@lovette26, Good Morning and Welome to Mayo Connect. I am a liver and kidney transpant recipient (2009 – Mayo). I am concerned about hearing that your doctor says he is giving up on you. I have experienced doctors sending me to a higher qualified specialist on my transplant journey. And once I was even unlisted from the transplant list for a period of time. I was able be treated and relisted for my transplant only because my local transplant knew to send me to Mayo for the specialty care that I needed.
Have you considered changing doctors, or seeking a 2nd opinion? Is an organ transplant in your future?

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Good morning He is my second the first doctor misdiagnosed me had me on pills when i should have been on insulin. Now my numbers if i can get it to 170 once a day im happy my normal even with the pump is 320 i can't seem to keep it down I'm afraid to eat a lot of the time. But my crashes are so brutal it will drop to 35 or 40 and it doesn't feel good at all

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@lovette26

Good morning He is my second the first doctor misdiagnosed me had me on pills when i should have been on insulin. Now my numbers if i can get it to 170 once a day im happy my normal even with the pump is 320 i can't seem to keep it down I'm afraid to eat a lot of the time. But my crashes are so brutal it will drop to 35 or 40 and it doesn't feel good at all

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@lovette26 Welcome to Mayo Connect. We are a diverse group of people here, who share our experiences, and offer guidance and support to fellow patients, caregivers, and family members with a wide variety of disorders. We cannot diagnose nor offer medical advice. Reading your second post, it sounds like perhaps you are speaking about a diabetes issue? Are you also working with a disorder that involves a transplant possibility? Here are some members that also have diabetes, who may be of some help @retiredteacher @chocolate5lover @hopeful33250 @earlyrn @marvinjsturing and @kamama94 Beyond that there is a group here on Mayo Connect that may be of interest to you https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/ [Clicking on the link will take you to that group. You can read different discussions and post to any of them.] I hope this post finds you a bit less scared, and that we can support you in your journey.
Ginger

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Hi again, @lovette26 Another lovely picture!
I am very concerned that your doctor has given up on you. Why would he say such a thing? It sounds from here and from what you posted in the other discussion, as if you are adhering to a diabetic diet, and you mention exercise — perhaps you could increase the exercise, it is very helpful also.

I would seek out another opinion, preferably from a doctor associated with a major medical center. They tend to be the most well-informed because they see so many patients with so many problems. I presume you are not in the Boston area. Joslin Clinic there is I believe the foremost diabetes facility in the country — "Joslin Diabetes Center is the world's largest diabetes research center, diabetes clinic, and provider of diabetes education."

I wish I/we could advise you better but we too are patients and sharing our experiences, we are not experts and most of us have not worked in medical fields. Do feel free to ask questions though if there is anything that might help you with doing the most you can for your diabetes. That's what we are here for.
I look forward to hearing more from you.
JK

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@lovett26 Hi from Mayo Connect. I am so sorry that you had a dr. say such a horrible thing to you. I think you need to find an endocrinologist. That's what I did when I was diagnosed. You have been to two doctors, were they both primaries or were they specialists? An endocrinologist is able to run tests that tell him what all of your components are—high, low, in range (means okay). They also can get you to a dietician to plan a menu that will work for you. My endo and dietician helped me do that. You should be told how many calories a day you can eat to lose weight and what the different food groups should be. These are different for everyone. Fruits are on the diabetic list, but I can't eat fruits, so I omit them. My diabetes likes green veggies, so I concentrate on those. I love vegetables so it's not a problem.I could go without meat and be fine, but I do eat chicken and turkey and occasionally beef or pork tenderloin. It's just really an individual thing, but a dietician will know how to help you plan your meals. Then a commitment to exercise is a big help. It doesn't have to be in a gym for all day every day, but moving and not being a couch potato helps your blood numbers. It all works together to try to keep your numbers close to the same each day. Sometimes that doesn't work. Right now I am having trouble with my numbers and we don't know why, but we're trying to find out. Do you live in an area that has an endocrinologist or a health care center where you have access to what you need to get control of your diabetes? Do you know what your A1C is? There are lots of questions you need to ask a good doctor. Please try to find one. Will you stay in touch and let us know what's going on?
Carol

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@lovette26

Good morning He is my second the first doctor misdiagnosed me had me on pills when i should have been on insulin. Now my numbers if i can get it to 170 once a day im happy my normal even with the pump is 320 i can't seem to keep it down I'm afraid to eat a lot of the time. But my crashes are so brutal it will drop to 35 or 40 and it doesn't feel good at all

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Why is my email been repeated in sections

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@lovette26

Why is my email been repeated in sections

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@lovette26 Your posts will show up in the group you are replying to. If you get an email notification, and click on the "view and reply" it will go to that post. If you reply to that, it goes to that group/discussion. For example, this post is under "Transplants" group. I am seeing you are posting under both the "transplants" group, and "diabetes" group. I am tagging the moderator for the diabetes group to ask him to move your conversation over there [from transplant]. @ethanmcconkey will you do this, please?
Ginger

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@gingerw

@lovette26 Your posts will show up in the group you are replying to. If you get an email notification, and click on the "view and reply" it will go to that post. If you reply to that, it goes to that group/discussion. For example, this post is under "Transplants" group. I am seeing you are posting under both the "transplants" group, and "diabetes" group. I am tagging the moderator for the diabetes group to ask him to move your conversation over there [from transplant]. @ethanmcconkey will you do this, please?
Ginger

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I wanted to be in both I'm researching about a pancreas transplant it was mentioned at my last doctors visit and i want to research

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@lovette26

I wanted to be in both I'm researching about a pancreas transplant it was mentioned at my last doctors visit and i want to research

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@lovette26 Ahh! Now, posts showing up both places makes sense.
Ginger

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@contentandwell

Hi again, @lovette26 Another lovely picture!
I am very concerned that your doctor has given up on you. Why would he say such a thing? It sounds from here and from what you posted in the other discussion, as if you are adhering to a diabetic diet, and you mention exercise — perhaps you could increase the exercise, it is very helpful also.

I would seek out another opinion, preferably from a doctor associated with a major medical center. They tend to be the most well-informed because they see so many patients with so many problems. I presume you are not in the Boston area. Joslin Clinic there is I believe the foremost diabetes facility in the country — "Joslin Diabetes Center is the world's largest diabetes research center, diabetes clinic, and provider of diabetes education."

I wish I/we could advise you better but we too are patients and sharing our experiences, we are not experts and most of us have not worked in medical fields. Do feel free to ask questions though if there is anything that might help you with doing the most you can for your diabetes. That's what we are here for.
I look forward to hearing more from you.
JK

Jump to this post

I had the gastric sleeve i lost 72 pounds my weight is still down i walk eight hours a day im a merchandiser and the pool 3 days a week my PANCREAS just is being lazy. I fast twice a week just water i don't eat starch i don't drink sodas. I have learned a little about having this pump on when my numbers get to 150 i turn my pump off it stays there then when it goes up a little i turn it back on. And when i eat i take the correct amount of insulin.

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@lovette26

I wanted to be in both I'm researching about a pancreas transplant it was mentioned at my last doctors visit and i want to research

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@lovette26, I would like to share and invite you to this discussion – Looking for other pancreas only transplant recipients – you can read what others have experienced, and you can join in anywhere.
https://connect.mayoclinic.org/discussion/looking-for-other-pancreas-only-transplant-recipients/

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Hi @lovette26, I'd also like to add my welcome. I encourage you to upload your beautiful picture to your profile page. Here's how to update your profile.
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

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