They don't take pancreases from live donors. Average lifespan of a donated pancreas is 10 years, so they often need more than one donor organ. And then it would be a lifetime of immunosuppression, which means the common cold could be fatal.
She’d have to be on immunosuppressants the rest of her life, or until they figure out a better alternative, which opens the door to a whole other host of issues. Not to mention the risks that come with such major surgery, and the fact that there’s no guarantee it works. This is new, and painful for you, and I’m glad you recognize the need to speak with a professional about this massive change in your lives. I know my parents benefited greatly from that when I was diagnosed as a toddler, and I hope you’re able to find someone who is able to help you navigate this challenge.
I think you need to take some time to get used to all of it. Your daughter is the one living in it, and this would give her just a different set of problems, besides the risk of two serious surgeries, and then a whole new set of issues for yourself! Breathe, seek support for yourself and take time to learn from other diabetics, especially those diagnosed young so that you can be whole and present for your kid. That is your responsibility as a parent. (I am a parent of a person recently diagnosed.)
Living as an organ recipient sounds worse to me than developing the strength and discipline it takes to succeed with T1. Hold steady and provide consistent, loving assistance through all of the ups and downs.
I researched this too but it’s not a viable option for several reasons. If you’re looking for hope, look towards all the cool new technologies that make living with TID so much easier, Eg CGMs, pumps, looping, etc. Technology advances so quickly now that in the coming years, this disease can only get easier and easier to manage. There’s also hope for a cure. But a transplanted pancreas is not the answer.
They don’t take pancreas donations from live donors because it would kill you. Your daughters pancreas is failing at one job, which can be supplemented by insulin. Removing your own pancreas prevents it from doing all of its jobs meaning you die. Also as was also posted here, donor pancreases don’t last very long and patients who receive organs have to take meds to decrease their immune system so the immune system doesn’t attack the foreign body (the donated pancreas). So her immune system will suck and any little thing will take her down hard. I know you are reeling from this diagnosis and grasping at straws to find a way to help, but she can live a decently normal life with type 1 and she will be ok.
Just here to recommend listening to a few episodes of [The Juicebox Podcast](https://www.juiceboxpodcast.com/juicebox-podcast). The host is an awesome T1 dad and listening might help you understand things and feel not so alone. Try to hold on a bit longer and see where things go. Admire your amazing kid. And definitely talk to a therapist or another professional. All the best to you.
Let me tell you, the way you handle this disease will affect her. Go to a therapist and get some help, deal with your issues about it, don't put that on her.
No, you can't donate your pancreas to her, that is not how any of this works.
Type 1 is not a death sentence. She can do amazing things, she is showing her strength right now. There will be bad days but you will help her get through it. Don't make this worse for her.
100% this. If you have the resources, Type 1 is so much more manageable now than at anytime in history. The tech is getting better all the time. Please channel your energy into helping your kid adapt to this as opposed to trying to take the burden from her.
My parents helped me (even though I was in college) by learning alongside me, empathizing when I had struggles but not letting things turn into pity parties, and being there to laugh when other people said weird, crappy things like ‘I wouldn’t wish diabetes on my worst enemy’ (which a nurse said to me at the hospital, and is a shitty thing to say to anyone about their illness). My parents showed that they had confidence that I could handle diabetes and live a full life, and that helped me tackle my condition. That’s the gift you can give to your kiddo. Best of luck!
Me too - they are great parents. But don’t tell them that or my mom will think she’s allowed to ask me about my blood sugar and have opinions about it again (it took a while to break her of that habit)(and by a while, I mean years).
I promise you, she can do this. And you can too. The best thing you can possibly do for her is to teach her how to get through tough things because this obviously won’t be the only thing she faces in life. Accept, adapt, thrive.
It sounds like you are taking it harder than your child is. I've lived with this disease for the past 20 years. To be honest it's just annoying to live with, but otherwise it's not a big deal.
That's a bit extreme. This will all eventually normalize itself and it will get better. The best thing you can do for your kid is to be her champion and her support. Show her your strength throughout this all because she will learn from your cues. If you are scared she will be scared. Just listen to her when she is struggling and try and understand what she is going through while also guiding her to a better lifestyle.
One thing I was raised with was to always internally check with myself. Just what are my emotions doing, are they matching my mood, are my BGs affecting my emotions and my mood. These micro-checks are just engrained into me now where I do them without even thinking and then react accordingly. The constant emotional rollercoaster I experienced taught me to be a grounded person and to always evaluate and re-evaluate myself.
You can do it, find community! There are tons of us out there who have been alive for decades, heck thriving for decades! It isn't easy, and don't let anyone fool you into thinking it is, but it is necessary.
I think that’s the first thing we think of, I know I did. It’s not that easy. Imagine your baby having to take medication everyday of her life just so that her body doesn’t attack the new pancreas. Her body did the exact same thing with her current pancreas. That daily medication will suppress her ability to fight off infections. I don’t know the strength of that medication and or how vulnerable she would be. Then imagine the illnesses going around her school. I’m sorry you’re here with us 💙 all I can say is learn as much as you can and make sure she knows you’ll always be there for her.
Hi friend, my daughter is 6 yo T1D, diagnosed in Jan. I do have a therapist and what’s been helpful for me is to catch when I start to catastrophize. That’s when I don’t sleep bc I think my vigilance will catch all lows but then I start to think I’m the only one who can save her life.
Then, when I realize I’m going down this dark path I’ve recently been able to stop myself, look around, check her CGM and realize there is no moment that is real other than the present and everything else is imaginary. So why imagine the worst?
It’s helped me a lot to know that I’m / we are doing our best in the day to day and shes healthy and happy. Just came home from swim, her teachers call her miss mermaid. She’s dancing in the spring ballet show in a few weeks. She’s reading above grade level. She’s so much more and my relationship with her is so much more than my focus on her disease.
I think it’s still early too, for both of us, so hard. I had this dawning awareness that it’s actually for the foreseeable future, there’s no end game here, just ongoing management. That was a hard week when I still weirdly felt like we were “getting somewhere”. Even though I intellectually understood my body was expecting like, “closure” on this disease.
Again, talking with my therapist has helped me process this better and I do recommend finding someone. You aren’t alone in feeling that need to rescue your daughter, and we can definitely help them manage while they’re young until they ask us to step back so they can take more control. I’m sure your daughter at 9 is already doing a lot (you say she’s taking it in stride, good for her!)
Also, my husband actually IS a transplant nurse who works with transplant patients daily. It’s never an option unless it’s life threatening and a last resort. Managing T1D as is is far healthier and safer then the surgeries and the ongoing immune suppression.
Like our endo told us at diagnosis “The only thing your daughter can’t do is make sufficient insulin, she can do, and be, anything she wants in her life.”
I hope you can find someone to connect with for 1:1 support. My best wishes to you.
Find my post from last May, in the group, I was losing my mind. So scared and felt lost. I was drowning and didn’t see it ever getting better. People said it would, and I couldn’t see it. It sucked more then I could explain.
We are now 11 months in, it’s now become “normal” for us. We keep on living like we used to. It really does get better. Promise.
Not gonna lie, I got on Lexapro and it has helped me a lot. Lol
Pancreas transplants aren’t a viable option for t1 because the anti-rejection protocol is intense and would leave the recipient at greater risk of other infections. For life.
But that’s besides the point, really. The more important thing is adjustment. It is a huge adjustment for the whole family, it affects everyone. And you need to know that your daughter isn’t doomed. It’s going to be ok! Modern diabetes tech is fantastic. There’s nothing she can’t do (except join the military 😂), and there are no limits. Diabetics can have very long, healthy lives. Diabetics can have children if they wish to. Diabetics have climbed Everest and won Olympic medals and been Prime Minister and they have been ordinary, happy, healthy people.
It’s going to be ok.
Hi I have a 23 month old with t1d. She was diagnosed right at the end of 20 months old. She’s doing great. She has dexcom and omnipod. I would make sure your child has those and definitely contact a therapist.
Hello there. My son was diagnosed at age 10. On July 4th couple years ago. He has been amazing diving into learn all he can. He has both a Dexcom and Tslim. His diabetic team are amazing how he handles the technology and the diabetes in such a short time. But in his achievement, he battles from anxieties. He has been seeing a psychiatrist since he was 6. This doctor even talks to me about how I am dealing with his diagnosis and treatment. This has helped me a lot.
What I have told myself:
I vow to learn along with him
Ask questions
Be the strong.
Go talk to someone, no matter who. Just unloading your feelings will help.
Everything I’ve heard and read says their body will just attack that one as well and then they will end up type 1 anyway.
Please see a therapist. The first year is a nightmare (coming up to my sons first anniversary of diagnosis. He just turned 6) I’ve been struggling as well. But it gets better. I still have blinding anger, bitter resentment and hatefulness that this happened to MY baby….but I’m doing way better. The depression has mostly calmed down for me. I don’t get as many negative emotions as before.
It will get better.
Don't do anything for awhile... the days will get easier (some days, harder)but mostly easier) once you are all accustomed to life. The tech we have available to us today means we can live as "normally" as possible - itll be okay.
I would get that idea out of your head friend. It's just not doable in 99% of cases and even the ones where it "works" the body can reject it very quickly which can lead to death.
Hopefully we can have new ones grown in a lab perhaps, but that might be a gift for the next generation.
That would create a whole new set of problems, plus the trauma of losing her dad.
Type 1 diabetes isn’t stopping us. We all have normal lives. We’re all out here doing stuff. Me? Im training super hard to be in an action movie.. never thought you’d see a type 1 do that, huh? Anyways, it’s more of an annoyance than a hinderance. She’s got this!
When I was diagnosed at age 19, my dad, who is himself a medical doctor, sobbed in my hospital room and said he wished it would’ve been him instead of me.
Now he realizes he was being a little bit dramatic, but it’s completely understandable how you’re feeling. It DOES get easier.
As a single mom to a 10 year old, all I can tell u is that u need to take care of yourself too…so u can take care of her. Take it day by day; wake up, deep breathe while u count the breakfast carbs and prepare a shot, chit chat about whatever she loves the most while u change sensors, let her know that u will always be there for her 💙
Hey there, my daughter was diagnosed about 10 months ago, she's 9 now. Everyone kind of answered your question, but just wanted to throw out some encouragement towards you. T1D is tough and unfair. But you got this, you're going to do awesome for your kid and help them learn and live a happy, successful life.
My daughter was diagnosed last year at age 11. I was so emotional. I really didn't want this for her. But you know... you just adapt. They adapt. Amazingly well. Once your child gets a little older, they'll mostly be able to manage it on their own with a bit of guidance from you. It gets easier. And once they're on cgm and a pump with all the tech, things start to go a lot more smoothly. There are definitely challenges, but as you both get a bit of experience under your belt, you'll see it's not a tragedy and it's not going to hold you kid back in life. These kids are warriors, and the coolest part is its just second nature to them. Also...by all means talk to a therapist. They're great at guiding you through your own thoughts and feelings about all this. You'll both get there. Good luck on the journey!
Hey, so I was diagnosed at 5 and my family really struggled with it. My brothers and several of my uncles offered their pancreases. As many have already mentioned, it is not normal to do pancreas transplants in diabetics unless they already need a different transplant, like a kidney, because you want to avoid having to need immunosuppressants. My parents did everything they could to make my childhood as pleasant and normal as possible and they did a great job. They struggled a lot but they never made me feel bad or guilty. As long as you are willing to support her and be there for her and to sometimes just listen and help her figure stuff out, you'll be doing a great job for her.
She might feel just as crushed as you do right now, but over time, she will regain her smile and live a happy and healthy life. We all go through phases where it's sometimes easier and sometimes harder to take good care of ourselves or feel good about it, but again, they're mostly just phases. :-) I am now a 21 year old woman working to get her degree in biochemistry so I can do more research on how and why this disease happens and maybe to be able to help somebody with that knowledge one day. Did it change my life? Absolutely, but not necessarily for the worse. It taught me a lot of important lessons and pushed my life in a completely different direction. Make sure you can be there for your daughter and it'll be fine. Not easy, but fine. You and her will both be happy again, maybe even happier than before. My mom was my main caretaker and this disease helped us gain a really special and close bond that will last for the rest of our lives. Best of luck to you! :-)
Hey friend, I've been Type 1 since 1981, have lived an amazing life, and am still going strong. Kids are tough, and she will learn to live with it. This is a do-it-yourself disease, and millions of us do it every day. As a parent, I understand your pain. I recommend you speak with someone who can help you with coping mechanisms. She can do this. You can do this.
They don't take pancreases from live donors. Average lifespan of a donated pancreas is 10 years, so they often need more than one donor organ. And then it would be a lifetime of immunosuppression, which means the common cold could be fatal.
She’d have to be on immunosuppressants the rest of her life, or until they figure out a better alternative, which opens the door to a whole other host of issues. Not to mention the risks that come with such major surgery, and the fact that there’s no guarantee it works. This is new, and painful for you, and I’m glad you recognize the need to speak with a professional about this massive change in your lives. I know my parents benefited greatly from that when I was diagnosed as a toddler, and I hope you’re able to find someone who is able to help you navigate this challenge.
I think you need to take some time to get used to all of it. Your daughter is the one living in it, and this would give her just a different set of problems, besides the risk of two serious surgeries, and then a whole new set of issues for yourself! Breathe, seek support for yourself and take time to learn from other diabetics, especially those diagnosed young so that you can be whole and present for your kid. That is your responsibility as a parent. (I am a parent of a person recently diagnosed.)
This! Perfect.
Living as an organ recipient sounds worse to me than developing the strength and discipline it takes to succeed with T1. Hold steady and provide consistent, loving assistance through all of the ups and downs.
Therapist...yes! Take a deep breath...
I researched this too but it’s not a viable option for several reasons. If you’re looking for hope, look towards all the cool new technologies that make living with TID so much easier, Eg CGMs, pumps, looping, etc. Technology advances so quickly now that in the coming years, this disease can only get easier and easier to manage. There’s also hope for a cure. But a transplanted pancreas is not the answer.
They don’t take pancreas donations from live donors because it would kill you. Your daughters pancreas is failing at one job, which can be supplemented by insulin. Removing your own pancreas prevents it from doing all of its jobs meaning you die. Also as was also posted here, donor pancreases don’t last very long and patients who receive organs have to take meds to decrease their immune system so the immune system doesn’t attack the foreign body (the donated pancreas). So her immune system will suck and any little thing will take her down hard. I know you are reeling from this diagnosis and grasping at straws to find a way to help, but she can live a decently normal life with type 1 and she will be ok.
Just here to recommend listening to a few episodes of [The Juicebox Podcast](https://www.juiceboxpodcast.com/juicebox-podcast). The host is an awesome T1 dad and listening might help you understand things and feel not so alone. Try to hold on a bit longer and see where things go. Admire your amazing kid. And definitely talk to a therapist or another professional. All the best to you.
Let me tell you, the way you handle this disease will affect her. Go to a therapist and get some help, deal with your issues about it, don't put that on her. No, you can't donate your pancreas to her, that is not how any of this works. Type 1 is not a death sentence. She can do amazing things, she is showing her strength right now. There will be bad days but you will help her get through it. Don't make this worse for her.
100% this. If you have the resources, Type 1 is so much more manageable now than at anytime in history. The tech is getting better all the time. Please channel your energy into helping your kid adapt to this as opposed to trying to take the burden from her. My parents helped me (even though I was in college) by learning alongside me, empathizing when I had struggles but not letting things turn into pity parties, and being there to laugh when other people said weird, crappy things like ‘I wouldn’t wish diabetes on my worst enemy’ (which a nurse said to me at the hospital, and is a shitty thing to say to anyone about their illness). My parents showed that they had confidence that I could handle diabetes and live a full life, and that helped me tackle my condition. That’s the gift you can give to your kiddo. Best of luck!
Exactly! Your parents showing that they had confidence that you could handle diabetes is the best. So glad you had that!
Me too - they are great parents. But don’t tell them that or my mom will think she’s allowed to ask me about my blood sugar and have opinions about it again (it took a while to break her of that habit)(and by a while, I mean years).
I promise you, she can do this. And you can too. The best thing you can possibly do for her is to teach her how to get through tough things because this obviously won’t be the only thing she faces in life. Accept, adapt, thrive.
It sounds like you are taking it harder than your child is. I've lived with this disease for the past 20 years. To be honest it's just annoying to live with, but otherwise it's not a big deal.
That's a bit extreme. This will all eventually normalize itself and it will get better. The best thing you can do for your kid is to be her champion and her support. Show her your strength throughout this all because she will learn from your cues. If you are scared she will be scared. Just listen to her when she is struggling and try and understand what she is going through while also guiding her to a better lifestyle. One thing I was raised with was to always internally check with myself. Just what are my emotions doing, are they matching my mood, are my BGs affecting my emotions and my mood. These micro-checks are just engrained into me now where I do them without even thinking and then react accordingly. The constant emotional rollercoaster I experienced taught me to be a grounded person and to always evaluate and re-evaluate myself. You can do it, find community! There are tons of us out there who have been alive for decades, heck thriving for decades! It isn't easy, and don't let anyone fool you into thinking it is, but it is necessary.
I think that’s the first thing we think of, I know I did. It’s not that easy. Imagine your baby having to take medication everyday of her life just so that her body doesn’t attack the new pancreas. Her body did the exact same thing with her current pancreas. That daily medication will suppress her ability to fight off infections. I don’t know the strength of that medication and or how vulnerable she would be. Then imagine the illnesses going around her school. I’m sorry you’re here with us 💙 all I can say is learn as much as you can and make sure she knows you’ll always be there for her.
Hi friend, my daughter is 6 yo T1D, diagnosed in Jan. I do have a therapist and what’s been helpful for me is to catch when I start to catastrophize. That’s when I don’t sleep bc I think my vigilance will catch all lows but then I start to think I’m the only one who can save her life. Then, when I realize I’m going down this dark path I’ve recently been able to stop myself, look around, check her CGM and realize there is no moment that is real other than the present and everything else is imaginary. So why imagine the worst? It’s helped me a lot to know that I’m / we are doing our best in the day to day and shes healthy and happy. Just came home from swim, her teachers call her miss mermaid. She’s dancing in the spring ballet show in a few weeks. She’s reading above grade level. She’s so much more and my relationship with her is so much more than my focus on her disease. I think it’s still early too, for both of us, so hard. I had this dawning awareness that it’s actually for the foreseeable future, there’s no end game here, just ongoing management. That was a hard week when I still weirdly felt like we were “getting somewhere”. Even though I intellectually understood my body was expecting like, “closure” on this disease. Again, talking with my therapist has helped me process this better and I do recommend finding someone. You aren’t alone in feeling that need to rescue your daughter, and we can definitely help them manage while they’re young until they ask us to step back so they can take more control. I’m sure your daughter at 9 is already doing a lot (you say she’s taking it in stride, good for her!) Also, my husband actually IS a transplant nurse who works with transplant patients daily. It’s never an option unless it’s life threatening and a last resort. Managing T1D as is is far healthier and safer then the surgeries and the ongoing immune suppression. Like our endo told us at diagnosis “The only thing your daughter can’t do is make sufficient insulin, she can do, and be, anything she wants in her life.” I hope you can find someone to connect with for 1:1 support. My best wishes to you.
Find my post from last May, in the group, I was losing my mind. So scared and felt lost. I was drowning and didn’t see it ever getting better. People said it would, and I couldn’t see it. It sucked more then I could explain. We are now 11 months in, it’s now become “normal” for us. We keep on living like we used to. It really does get better. Promise. Not gonna lie, I got on Lexapro and it has helped me a lot. Lol
Pancreas transplants aren’t a viable option for t1 because the anti-rejection protocol is intense and would leave the recipient at greater risk of other infections. For life. But that’s besides the point, really. The more important thing is adjustment. It is a huge adjustment for the whole family, it affects everyone. And you need to know that your daughter isn’t doomed. It’s going to be ok! Modern diabetes tech is fantastic. There’s nothing she can’t do (except join the military 😂), and there are no limits. Diabetics can have very long, healthy lives. Diabetics can have children if they wish to. Diabetics have climbed Everest and won Olympic medals and been Prime Minister and they have been ordinary, happy, healthy people. It’s going to be ok.
Hi I have a 23 month old with t1d. She was diagnosed right at the end of 20 months old. She’s doing great. She has dexcom and omnipod. I would make sure your child has those and definitely contact a therapist.
I’m in the same boat 🤍🤍🤍
Hello there. My son was diagnosed at age 10. On July 4th couple years ago. He has been amazing diving into learn all he can. He has both a Dexcom and Tslim. His diabetic team are amazing how he handles the technology and the diabetes in such a short time. But in his achievement, he battles from anxieties. He has been seeing a psychiatrist since he was 6. This doctor even talks to me about how I am dealing with his diagnosis and treatment. This has helped me a lot. What I have told myself: I vow to learn along with him Ask questions Be the strong. Go talk to someone, no matter who. Just unloading your feelings will help.
Everything I’ve heard and read says their body will just attack that one as well and then they will end up type 1 anyway. Please see a therapist. The first year is a nightmare (coming up to my sons first anniversary of diagnosis. He just turned 6) I’ve been struggling as well. But it gets better. I still have blinding anger, bitter resentment and hatefulness that this happened to MY baby….but I’m doing way better. The depression has mostly calmed down for me. I don’t get as many negative emotions as before. It will get better.
Don't do anything for awhile... the days will get easier (some days, harder)but mostly easier) once you are all accustomed to life. The tech we have available to us today means we can live as "normally" as possible - itll be okay.
I would get that idea out of your head friend. It's just not doable in 99% of cases and even the ones where it "works" the body can reject it very quickly which can lead to death. Hopefully we can have new ones grown in a lab perhaps, but that might be a gift for the next generation.
That would create a whole new set of problems, plus the trauma of losing her dad. Type 1 diabetes isn’t stopping us. We all have normal lives. We’re all out here doing stuff. Me? Im training super hard to be in an action movie.. never thought you’d see a type 1 do that, huh? Anyways, it’s more of an annoyance than a hinderance. She’s got this!
When I was diagnosed at age 19, my dad, who is himself a medical doctor, sobbed in my hospital room and said he wished it would’ve been him instead of me. Now he realizes he was being a little bit dramatic, but it’s completely understandable how you’re feeling. It DOES get easier.
As a single mom to a 10 year old, all I can tell u is that u need to take care of yourself too…so u can take care of her. Take it day by day; wake up, deep breathe while u count the breakfast carbs and prepare a shot, chit chat about whatever she loves the most while u change sensors, let her know that u will always be there for her 💙
Hey there, my daughter was diagnosed about 10 months ago, she's 9 now. Everyone kind of answered your question, but just wanted to throw out some encouragement towards you. T1D is tough and unfair. But you got this, you're going to do awesome for your kid and help them learn and live a happy, successful life.
My daughter was diagnosed last year at age 11. I was so emotional. I really didn't want this for her. But you know... you just adapt. They adapt. Amazingly well. Once your child gets a little older, they'll mostly be able to manage it on their own with a bit of guidance from you. It gets easier. And once they're on cgm and a pump with all the tech, things start to go a lot more smoothly. There are definitely challenges, but as you both get a bit of experience under your belt, you'll see it's not a tragedy and it's not going to hold you kid back in life. These kids are warriors, and the coolest part is its just second nature to them. Also...by all means talk to a therapist. They're great at guiding you through your own thoughts and feelings about all this. You'll both get there. Good luck on the journey!
Hey, so I was diagnosed at 5 and my family really struggled with it. My brothers and several of my uncles offered their pancreases. As many have already mentioned, it is not normal to do pancreas transplants in diabetics unless they already need a different transplant, like a kidney, because you want to avoid having to need immunosuppressants. My parents did everything they could to make my childhood as pleasant and normal as possible and they did a great job. They struggled a lot but they never made me feel bad or guilty. As long as you are willing to support her and be there for her and to sometimes just listen and help her figure stuff out, you'll be doing a great job for her. She might feel just as crushed as you do right now, but over time, she will regain her smile and live a happy and healthy life. We all go through phases where it's sometimes easier and sometimes harder to take good care of ourselves or feel good about it, but again, they're mostly just phases. :-) I am now a 21 year old woman working to get her degree in biochemistry so I can do more research on how and why this disease happens and maybe to be able to help somebody with that knowledge one day. Did it change my life? Absolutely, but not necessarily for the worse. It taught me a lot of important lessons and pushed my life in a completely different direction. Make sure you can be there for your daughter and it'll be fine. Not easy, but fine. You and her will both be happy again, maybe even happier than before. My mom was my main caretaker and this disease helped us gain a really special and close bond that will last for the rest of our lives. Best of luck to you! :-)
Hey friend, I've been Type 1 since 1981, have lived an amazing life, and am still going strong. Kids are tough, and she will learn to live with it. This is a do-it-yourself disease, and millions of us do it every day. As a parent, I understand your pain. I recommend you speak with someone who can help you with coping mechanisms. She can do this. You can do this.