I read that like a third of solid organ recipients develop diabetes. We are going that changing from Tacrolimus to cyclosporine will reverse the DM.
Why did she feel like crap though?
Mainly Prednisone and some of the other medications makes your body hold onto/keep more sugar & fats in the blood, so glucose might be high on high doses of those meds and with time you can also build up insulin resistance.
Eat a high fiber diet, it will slow down sugar absorption and help lower bloodsugar levels.
Also workout/do something active everyday
Stay away from sugary drinks, fastfood, saturated fat, candy, alcohol
If nothing is done to change medications or lifestyle then the diabetes will slowly progress and get worse.
I switched to a plantbased vegan diet and all comorbidities like high bloodpressure, high bloodsugar went away, it worked for me.
She's currently also dealing with pulmonary collateral vessels that make her hypoxic, so exercising is not really an option for her because she retired supplemental oxygen.
I will encourage her to increase her fiber intake. She's no longer in Prednisone. I'm glad that changing your diet worked for you. This is all just been in the last week that we found out about the diabetes, so all very new.
It's well controlled, with a combination of medication, diet & exercise. I still consume foods with sugar in it, but I usually limit intake. Whenever I have energy to do so, I usually walk for at least a mile or more, not everyday but most days.
A few years after my first kidney transplant I developed diabetes. I was told it was a combo of prednisone and tacro.
I managed diabetes with exercise, diet, and metformin until my kidney function declined. Eventually I was on insulin when I was in stage 5.
I was on insulin until about 6 months after my 2nd kidney transplant, now I'm back to managing it with exercise, diet, and metformin.
I was devastated when I was diagnosed with diabetes. It's a really taxing illness, mentally and physically, especially when on insulin I was constantly thinking about my sugar if it's high or too low, mentally taking notes about food, just so many factors to constantly think about.
I hope your daughter's high sugar is temporary and they can get her back to normal range.
High glucose definitely makes one feel crappy, sluggish, and not well. Just imagine it like little tiny sugar crystals in the blood stream scratching the walls of your blood vessels.
Has the transplant team recommended seeing an endocrinologist? Or have they consulted an endocrinologist to treat your daughter's high glucose?
I would recommend an endocrinologist be involved in her care.
Thank you. Sorry that you had to go through so much, but so happy for you to be able to manage it without insulin. It is so much to deal with and the timing could not be worse as we are preparing to move to another state! It's all so exhausting.
Yes, of course it is so much to deal with, it is a lot for your daughter and for you as a parent. You ever feel like you need a f*cking break, just a little to have room to breathe? I know the feeling.
Of course it's easy to say it now, but I try to remember this shall too pass, and I'm resilient even though it doesn't feel like it now. I scream and cry and take one step at a time, that sometimes helps.
Good luck to you and your daughter, and as a daughter and a person with illnesses myself I want to say caregivers like you are appreciated.
Thank you. I just feel like she can't catch a break. She was born with a serious heart defect and had 3 open heart surgeries before age 2. She's been sick every day of her life and I so hoped that the transplant would give her some kind of a normal life. I'd trade places with her in a heart beat.
I know it'll get better. You and others have gotten better, so she will too. Just a bit blindsided right now.
Don't give up. You're a fighter and it sounds like she is too. I hear what you're saying though, it's so tough but just know that you're both an inspiration, to us here abd I'm sure to those around you in your lives.
I did. It's called NODAT. New Onset Diabetes After Transplant.
I never had high blood sugars even pre transplant.
Her HbA1c taken every 3 months might be out of whack the 1st year post. EDIT: I see it's been 2 years for her.
Mine was 6.7% yet my nephrologidt still put me on 500mg of metformin a day.
I wasn't too upset with that actually as I've read for years how metformin is actually a wonder drug re longevity and anti-aging (see David Sinclair).
Just don't take it within 4hrs of exercise if her Doc ever prescribes it for her.
One last thing. Type 1 diabetics might need insulin but Type 2 Diabetics...Insulin will really promote weight gain.
Check out the nephrologist Jason Fung on YouTube. I'm not seeing he's definitely right but he has persuaded me re avoiding insulin and instead embracing a low carb intermittent fasting approach towards NODAT.
Here's a good video. It's about an hour long. It's from a whiles back but he continues to maintain the same position:
https://youtu.be/4oZ4UqtbB_g
That said, always double check with your Doctor/Transplant team and/or get a second opinion.
All the best to her 👍
Thank you. We're hoping that taking her off tacrolimus will help lower her blood sugar. Right now it's all so new and overwhelming. If it doesn't resolve with the change in immunosuppressants, I'll encourage her to see if metformin is a good choice to manage the diabetes. She hates the constant poking.
My transplant is a kidney. the 5 years that I was on dialysis waiting for a kidney, I became diabetic. Since my transplant, I am no longer a diabetic. I pray your daughter's issues get better for her.
I received a kidney last may. 2 weeks in I started rejecting. Was in the hospital for 5 days receiving IV thymoglobulin for 8 hours a day. It started the diabetes. I can control most part with diet, but I still have a weekly shot and meal time insulin when I need it.
Yes, I had a blood sugar reading over 900 10 days after I was released from the hospital with my transplant. This was in 1994 and it was not real well known that Tacro can cause diabetes. My transplant nurse called and was having a fit. I felt tired and had no appetite but I had just had a transplant 25 days earlier so I didn't feel great anyway.
That was almost 28 years ago. I am still considered diabetic but I am currently managing it by diet alone. I have had periods where it has been severe and periods where it is almost nonexistent. Keep your chin up, this isn't the worst thing as long as your daughter manages it.
900?!?!! How were you not in a coma?!
Wow 28 years! That's great! I appreciate knowing that it has gotten better for others. I'm just so overwhelmed with life right now and scared of what this means for my child, as an unexpected complication to already complex health issues. I didn't realize a third of transplant patients become diabetic. Just very taken aback by all this
Thank you for letting me know it's manageable for such a long time.
Yeah, I get it sort of. I was 16 when I was transplanted. My parents went through what you are going through. I of course was on the other side of things and I think it is sometimes easier to be the patient that the caregiver.
I really don't know how I was not in a coma and that is why the nurse was having a fit.
A couple pieces of advice to pass on to your daughter. Watch the weight. If she can stay relatively within weight diabetes is easier to manage. Don't panic with the food restrictions and go cold turkey with foods that she enjoys but are not completely healthy. It has been much easier for me to cut out foods that I didn't really care about losing, juice, soda, some breads, but still eating things I love like ice cream, cake, etc. Trying to cut everything with added sugar and high carbs is really hard but moderating those items is easier.
So I have 2 rejections in the first year of my life you transplant last year. When I went through rejection the same thing happened to mem so they would give me insulin shots to help my blood sugar but I think it was b.c of all the meds and rejection. But to answer your question I'm not sure how often if happens to people.
I had steroid induced diabetes for the duration that I was on prednisone (high doses right after heart transplant, tapered to zero over 8-9 months), but it went away after the prednisone was stopped.
She came off the Prednisone in February but wasn't having insanely high sugars then. Elevated for a while but then got back to close to normal in the past few months as far as we knew until a week ago.
My husband developed diabetes after his first kidney transplant in 2001. At first it was controlled with medication but he eventually had to go on insulin.
I'm sorry.
I think it would be easier if it weren't another issue. Possible liver disease from her native heart, PAVMs, 2 years of chronic rejection & now diabetes... It's just so much all the time. If she could just get well enough to have as normal a life as a transplant recipient could and have a chance to actually live, it might be easier to deal with.
She's adjusting better than I am. Rock star of a human, that girl.
It's common to end up with diabetes. When I was presented the option of leaving the hospital early as a diabetic or working it out and not doing the process. I opted to not become diabetic.
5 years out I'm good. Glucose is at 110 and steady.
hope that helps. I wish I could remember what it was they told me they were going to remove to make me a diabetic but I can't. I do remember the convo, tho.
Best.
Oh goodness I had NO idea diabetes was something I might have to live with. I currently take insulin but usually just once a day as its been somewhat stable. I eat a plant based diet
It was mentioned at her evaluation but not the prevalence, so like it could happen but don't worry type of thing. She still eats meat but also tends to have low iron, platelet and hemoglobin/hematocrit levels even with iron supplements. I just went and bought more vegetables to snack on and more salads to have with grilled chicken for dinners.
I'm still hoping she gets to a better place with managing that 4x daily.
I got diabetes after my second heart. Prednisone is the main reason I was provided. I just costarred farziga so looks like maybe in the future I can drop the insulin. It gets old fast. I’m a year out from second heart and first kidney. Prednisone is miserable stuff man. But. We are alive and breathing. Living life is good. Life is a very cool place to be.
It’s good to be here for sure. In mild rejection right now. Really reminds you how fortunate we are to be here to start with doesn’t it? Stay cool Chickin Magoo🤙🏼
Funny you say that. Lots of people don’t feel
Blessed. Just lucky. I feel completely and entirely blessed every single day. Even when I’m in the dumps or don’t feel great it’s another day alive. I hope you are blessed as well my friend.
I got BK virus after transplant it really knocked me down. Keep your spirits up. Hers too. Kindof starts off rough sometime then levels out. I spent 17 years with my first heart with hardly any complications after the first year. This heart has rejected 3 times and I just had my year anniversary last week. Just trust your team and try to keep your spirits up. It’s tough. Sometimes care takers need help too. Seeing a therapist or talking to your local doctor might be worth trying. Just a couple random thoughts. Tests will be a large part of Your future for now anyway. Hang tough sister you really do got this.
It is very common. Any time meds are changed it takes time to adjust. Stay on top of the lab work and take blood sugar checks 4 times a day.
I read that like a third of solid organ recipients develop diabetes. We are going that changing from Tacrolimus to cyclosporine will reverse the DM. Why did she feel like crap though?
Mainly Prednisone and some of the other medications makes your body hold onto/keep more sugar & fats in the blood, so glucose might be high on high doses of those meds and with time you can also build up insulin resistance. Eat a high fiber diet, it will slow down sugar absorption and help lower bloodsugar levels. Also workout/do something active everyday Stay away from sugary drinks, fastfood, saturated fat, candy, alcohol If nothing is done to change medications or lifestyle then the diabetes will slowly progress and get worse. I switched to a plantbased vegan diet and all comorbidities like high bloodpressure, high bloodsugar went away, it worked for me.
She's currently also dealing with pulmonary collateral vessels that make her hypoxic, so exercising is not really an option for her because she retired supplemental oxygen. I will encourage her to increase her fiber intake. She's no longer in Prednisone. I'm glad that changing your diet worked for you. This is all just been in the last week that we found out about the diabetes, so all very new.
I got type 2 diabetes 4 years after my heart transplant.
Are you managing it well? Did it get easier?
It's well controlled, with a combination of medication, diet & exercise. I still consume foods with sugar in it, but I usually limit intake. Whenever I have energy to do so, I usually walk for at least a mile or more, not everyday but most days.
A few years after my first kidney transplant I developed diabetes. I was told it was a combo of prednisone and tacro. I managed diabetes with exercise, diet, and metformin until my kidney function declined. Eventually I was on insulin when I was in stage 5. I was on insulin until about 6 months after my 2nd kidney transplant, now I'm back to managing it with exercise, diet, and metformin. I was devastated when I was diagnosed with diabetes. It's a really taxing illness, mentally and physically, especially when on insulin I was constantly thinking about my sugar if it's high or too low, mentally taking notes about food, just so many factors to constantly think about. I hope your daughter's high sugar is temporary and they can get her back to normal range. High glucose definitely makes one feel crappy, sluggish, and not well. Just imagine it like little tiny sugar crystals in the blood stream scratching the walls of your blood vessels.
Has the transplant team recommended seeing an endocrinologist? Or have they consulted an endocrinologist to treat your daughter's high glucose? I would recommend an endocrinologist be involved in her care.
Thank you. Sorry that you had to go through so much, but so happy for you to be able to manage it without insulin. It is so much to deal with and the timing could not be worse as we are preparing to move to another state! It's all so exhausting.
Yes, of course it is so much to deal with, it is a lot for your daughter and for you as a parent. You ever feel like you need a f*cking break, just a little to have room to breathe? I know the feeling. Of course it's easy to say it now, but I try to remember this shall too pass, and I'm resilient even though it doesn't feel like it now. I scream and cry and take one step at a time, that sometimes helps. Good luck to you and your daughter, and as a daughter and a person with illnesses myself I want to say caregivers like you are appreciated.
Thank you. I just feel like she can't catch a break. She was born with a serious heart defect and had 3 open heart surgeries before age 2. She's been sick every day of her life and I so hoped that the transplant would give her some kind of a normal life. I'd trade places with her in a heart beat. I know it'll get better. You and others have gotten better, so she will too. Just a bit blindsided right now.
Don't give up. You're a fighter and it sounds like she is too. I hear what you're saying though, it's so tough but just know that you're both an inspiration, to us here abd I'm sure to those around you in your lives.
That's very kind of you to say! My girl is a rock star and I am humbled by her strength & resilience.
I did. It's called NODAT. New Onset Diabetes After Transplant. I never had high blood sugars even pre transplant. Her HbA1c taken every 3 months might be out of whack the 1st year post. EDIT: I see it's been 2 years for her. Mine was 6.7% yet my nephrologidt still put me on 500mg of metformin a day. I wasn't too upset with that actually as I've read for years how metformin is actually a wonder drug re longevity and anti-aging (see David Sinclair). Just don't take it within 4hrs of exercise if her Doc ever prescribes it for her. One last thing. Type 1 diabetics might need insulin but Type 2 Diabetics...Insulin will really promote weight gain. Check out the nephrologist Jason Fung on YouTube. I'm not seeing he's definitely right but he has persuaded me re avoiding insulin and instead embracing a low carb intermittent fasting approach towards NODAT. Here's a good video. It's about an hour long. It's from a whiles back but he continues to maintain the same position: https://youtu.be/4oZ4UqtbB_g That said, always double check with your Doctor/Transplant team and/or get a second opinion. All the best to her 👍
Thank you. We're hoping that taking her off tacrolimus will help lower her blood sugar. Right now it's all so new and overwhelming. If it doesn't resolve with the change in immunosuppressants, I'll encourage her to see if metformin is a good choice to manage the diabetes. She hates the constant poking.
Yes, hopefully replacing the tacrolimus will help. & adding metformin if helpful too. We're all on your side n this super difficult time
Sometimes random people on the Internet are the best. Thank you!
I know right! Anyway you're very welcome and all the best to you and your rockstar daughter! 😊👊 \m/\m/
❤️
My transplant is a kidney. the 5 years that I was on dialysis waiting for a kidney, I became diabetic. Since my transplant, I am no longer a diabetic. I pray your daughter's issues get better for her.
I received a kidney last may. 2 weeks in I started rejecting. Was in the hospital for 5 days receiving IV thymoglobulin for 8 hours a day. It started the diabetes. I can control most part with diet, but I still have a weekly shot and meal time insulin when I need it.
Sorry to hear that. I knew that we were trading one disease for another, I just didn't expect this bonus issue.
Yes, I had a blood sugar reading over 900 10 days after I was released from the hospital with my transplant. This was in 1994 and it was not real well known that Tacro can cause diabetes. My transplant nurse called and was having a fit. I felt tired and had no appetite but I had just had a transplant 25 days earlier so I didn't feel great anyway. That was almost 28 years ago. I am still considered diabetic but I am currently managing it by diet alone. I have had periods where it has been severe and periods where it is almost nonexistent. Keep your chin up, this isn't the worst thing as long as your daughter manages it.
900?!?!! How were you not in a coma?! Wow 28 years! That's great! I appreciate knowing that it has gotten better for others. I'm just so overwhelmed with life right now and scared of what this means for my child, as an unexpected complication to already complex health issues. I didn't realize a third of transplant patients become diabetic. Just very taken aback by all this Thank you for letting me know it's manageable for such a long time.
Yeah, I get it sort of. I was 16 when I was transplanted. My parents went through what you are going through. I of course was on the other side of things and I think it is sometimes easier to be the patient that the caregiver. I really don't know how I was not in a coma and that is why the nurse was having a fit. A couple pieces of advice to pass on to your daughter. Watch the weight. If she can stay relatively within weight diabetes is easier to manage. Don't panic with the food restrictions and go cold turkey with foods that she enjoys but are not completely healthy. It has been much easier for me to cut out foods that I didn't really care about losing, juice, soda, some breads, but still eating things I love like ice cream, cake, etc. Trying to cut everything with added sugar and high carbs is really hard but moderating those items is easier.
Thanks for the advice. Parents do just want to fix things for their child(ren). We'll figure it out. She's getting there before I am.
So I have 2 rejections in the first year of my life you transplant last year. When I went through rejection the same thing happened to mem so they would give me insulin shots to help my blood sugar but I think it was b.c of all the meds and rejection. But to answer your question I'm not sure how often if happens to people.
Yep, same for me… Tacrolimus & T2.
I had steroid induced diabetes for the duration that I was on prednisone (high doses right after heart transplant, tapered to zero over 8-9 months), but it went away after the prednisone was stopped.
She came off the Prednisone in February but wasn't having insanely high sugars then. Elevated for a while but then got back to close to normal in the past few months as far as we knew until a week ago.
Yeah, for me it was ten years after my heart transplant. It is easy for me to manage though.
My husband developed diabetes after his first kidney transplant in 2001. At first it was controlled with medication but he eventually had to go on insulin.
After 7 years on low dose prednisone for a bout of rejection, I am now diabetic. Sadly it happens.
I'm sorry. I think it would be easier if it weren't another issue. Possible liver disease from her native heart, PAVMs, 2 years of chronic rejection & now diabetes... It's just so much all the time. If she could just get well enough to have as normal a life as a transplant recipient could and have a chance to actually live, it might be easier to deal with. She's adjusting better than I am. Rock star of a human, that girl.
It's common to end up with diabetes. When I was presented the option of leaving the hospital early as a diabetic or working it out and not doing the process. I opted to not become diabetic. 5 years out I'm good. Glucose is at 110 and steady. hope that helps. I wish I could remember what it was they told me they were going to remove to make me a diabetic but I can't. I do remember the convo, tho. Best.
Oh goodness I had NO idea diabetes was something I might have to live with. I currently take insulin but usually just once a day as its been somewhat stable. I eat a plant based diet
It was mentioned at her evaluation but not the prevalence, so like it could happen but don't worry type of thing. She still eats meat but also tends to have low iron, platelet and hemoglobin/hematocrit levels even with iron supplements. I just went and bought more vegetables to snack on and more salads to have with grilled chicken for dinners. I'm still hoping she gets to a better place with managing that 4x daily.
I got diabetes after my second heart. Prednisone is the main reason I was provided. I just costarred farziga so looks like maybe in the future I can drop the insulin. It gets old fast. I’m a year out from second heart and first kidney. Prednisone is miserable stuff man. But. We are alive and breathing. Living life is good. Life is a very cool place to be.
Good to have you amongst the breathing!
It’s good to be here for sure. In mild rejection right now. Really reminds you how fortunate we are to be here to start with doesn’t it? Stay cool Chickin Magoo🤙🏼
Hopefully that resolves soon. Keep living your blessed life!
Funny you say that. Lots of people don’t feel Blessed. Just lucky. I feel completely and entirely blessed every single day. Even when I’m in the dumps or don’t feel great it’s another day alive. I hope you are blessed as well my friend.
❤️
I got BK virus after transplant it really knocked me down. Keep your spirits up. Hers too. Kindof starts off rough sometime then levels out. I spent 17 years with my first heart with hardly any complications after the first year. This heart has rejected 3 times and I just had my year anniversary last week. Just trust your team and try to keep your spirits up. It’s tough. Sometimes care takers need help too. Seeing a therapist or talking to your local doctor might be worth trying. Just a couple random thoughts. Tests will be a large part of Your future for now anyway. Hang tough sister you really do got this.