Post-transplant Type 2 Diabetes

[Stu]

*Mods - please move this if it's in the wrong place, thanks*

This question might seem a little backwards, as I'm aware that diabetes is a major cause of kidney failure, I'd just like to come at it from the other side, and ask the experts a question:

I received my transplant just over six months ago. When I was on dialysis, my nephrologist (top bloke, by the way) told me that transplant patients have a roughly 50% chance of contracting type 2 diabetes after the transplant.

Since the transplant, my glucose levels have skyrocketed - up to the point of being 7.8. My understanding is that once the glucose level goes over 8, you're considered to be a diabetic.

I feel totally ripped off by this, I feel like I've just got my kidney after over five years on dialysis, and now I face a whole new slew of dietary restrictions. I almost feel like the restrictions on dialysis were in some ways a little easier to deal with. It's really easy to avoid that chocolate coated banana split when you know it could leave you dead in six hours from hyperkalemia. It's not so easy to watch what you eat as far as glucose levels go because it won't kill me straight away.

I'd be lying if I said I hadn't over-indulged in the "finer things in life" since the transplant (I've put on about 8Kg), and I understand that this would be a contributing factor to the rise in glucose levels, as well as the drugs I'm now taking. I'm getting better at watching what I eat, and starting to exercise, so hopefully this will help.

The questions are thus:

1) Are there any other people on the forum who've contracted type 2 diabetes post transplant?
2) If so, how did it affect your lifestyle, and how did you deal with it?
3) What are the dangers of post transplant diabetes, and have you suffered from any of them?

I'd really appreciate any feedback on this subject, as I'm a complete n00b when it comes to diabetes.

[livecam]

*Mods - please move this if it's in the wrong place, thanks*

This question might seem a little backwards, as I'm aware that diabetes is a major cause of kidney failure, I'd just like to come at it from the other side, and ask the experts a question:

I received my transplant just over six months ago. When I was on dialysis, my nephrologist (top bloke, by the way) told me that transplant patients have a roughly 50% chance of contracting type 2 diabetes after the transplant.

Since the transplant, my glucose levels have skyrocketed - up to the point of being 7.8. My understanding is that once the glucose level goes over 8, you're considered to be a diabetic.

I feel totally ripped off by this, I feel like I've just got my kidney after over five years on dialysis, and now I face a whole new slew of dietary restrictions. I almost feel like the restrictions on dialysis were in some ways a little easier to deal with. It's really easy to avoid that chocolate coated banana split when you know it could leave you dead in six hours from hyperkalemia. It's not so easy to watch what you eat as far as glucose levels go because it won't kill me straight away.

I'd be lying if I said I hadn't over-indulged in the "finer things in life" since the transplant (I've put on about 8Kg), and I understand that this would be a contributing factor to the rise in glucose levels, as well as the drugs I'm now taking. I'm getting better at watching what I eat, and starting to exercise, so hopefully this will help.

The questions are thus:

1) Are there any other people on the forum who've contracted type 2 diabetes post transplant?
2) If so, how did it affect your lifestyle, and how did you deal with it?
3) What are the dangers of post transplant diabetes, and have you suffered from any of them?

I'd really appreciate any feedback on this subject, as I'm a complete n00b when it comes to diabetes.

Yes type II diabetes can occur after a transplant or an existing case can get worse.  It is a side effect of a couple of the transplant meds usually Prograf and Prednisone.

I wouldn't feel too ripped off.  Look at the benefits you're getting from that great transplant!  Type II diabetes is pretty manageable and compared to living on dialysis the bargain isn't bad.

I was a type II diabetic prior to transplant and it was the cause of my kidney failure.  Prior to transplant it was easy to control with oral meds only.  After the transplant I found that my blood sugars were running higher than ever due to the fact that a good kidney clears oral diabetes meds from the bloodstream much faster than dialysis does and the effects of Prograf and Prednisone.

It was obvious that insulin was needed so I asked for a prescription.  At first they started me on long acting type "N" but it didn't really do the job.  A visit to my HMO resulted in two insulin types being used, type "N" once per day and type "R" with meals.  The results were good but there were many ups and downs with some hard crashes added in.

I heard about another insulin mix that resulted in more balanced blood sugar levels namely the combination of long lasting "Lantus" and fast acting "Novolog" and started on them about 4 1/2 years ago.  That mix seems to be the best I've tried so far.

How does it affect my lifestyle?  Honestly not much...dealing with it is routine and much much easier than dealing with dialysis.  I've had no adverse side effects or any other problems other than occasional high and very low blood sugar, about what would be expected in most diabetics.

The bottom line is that it really isn't that big a deal and is nothing compared to having to deal with dialysis.

[Stu]

 The results were good but there were many ups and downs with some hard crashes added in.

Thanks Livecam. 

Could you tell me about these "crashes" you've written about? Are they similar to a BP crash on dialysis? What are the symptoms and what did you have to do when you crashed?

[livecam]

 The results were good but there were many ups and downs with some hard crashes added in.

Thanks Livecam. 

Could you tell me about these "crashes" you've written about? Are they similar to a BP crash on dialysis? What are the symptoms and what did you have to do when you crashed?

Going hypoglycemic or having blood sugar go low is also known as crashing.  Depending on how far it is allowed to get the affects can be very profound.  This happens when there is more insulin in your system than needed and it pushes blood sugar below where it should normally be.

What you do is to put more sugar into your body fast.  You can do that with any sugar source that is handy although the best way to do it is with glucose pills or in an emergency a glucogen injection kit.

It is not similiar to a blood pressure crash.  It is kind of like a car running out of gas...if you let it go too far the car will stop.  That can happen to your body too.  Going low and and not fixing it can put you into a diabetic coma and kill you.

[paddbear0000]

Stu, I'm a type 1 diabetic and have been for 24 years, so I may be able to help a little. You said something about having to "face a whole new slew of dietary restrictions." It's not as bad as you think it is. Diabetes medication can do wonders if used properly. If you go on insulin, that can work even better than the usual type 2 pills. On insulin, you can pretty much eat whatever you want, as long as you take the medication to cover the carbohydrates in it--even your chocolate coated banana split! It takes some learning and practice, but it can be done. Yes, you still have to watch fat intake, but they do make some very good low fat ice creams out there. It's all in how much you eat.

Check out these forums on the American Diabetes Association's website. The posters are all fellow diabetics, and just like on this site, you will learn more from the patients on that site than you will ever learn from a doctor. People are constantly posting and thanking fellow members for helping improve their health and making their lives easier. It's a great site and it will answer any of your questions. I suggest you post questions there too.

http://community.diabetes.org/n/pfx/forum.aspx?webtag=amdiabetesz&nav=index

[stauffenberg]

The statistics I have read have said that the highest risk for developing type 2 diabetes post-transplant is found among Blacks who have a 25% rate of new type 2 diabetes after getting a new kidney.  For other racial groups the rate is much lower, according to all the published statistics.

There are modifications to your medication regimen which can help you avoid developing type 2 diabetes, or can assist you escaping it if it has already developed.  If you can go on a prednisone-free regimen and switch from cyclosporine to any of the other major immunosuppressants, such as tacrolimus or sirolimus, the damage to your pancreas by the drugs will be considerably reduced.

Diagnosing type 2 diabetes is a judgment call, but a study of your blood sugar level over a three-month period, determined by an HbA1c test (a measure of glycosylated hemoglobin) will give a more accurate picture.  A value above 6 is often considered diabetic, depending on the doctor.

The usual advice is to do everything humanly possible to stay off of insulin if you can manage it.  This you can do by exercising, losing weight, eating healthy foods, and avoiding sugary or starchy substances.  If you can get your medication program altered this may in itself repair the whole problem.  Going on insulin means not only multiple daily injections, but a heightened danger of severe hypoglycemia, which can cause permanent brain damage and even death.  Often, fortunately, type 2 diabetes can be controlled with diet and medications to stimulate the  pancreas to secrete more insulin, and these are much safer to take than insulin, since their capacity for causing severe low blood sugar is infinitely less than insulin's.

[jbeany]

I've been a Type 1 diabetic since I was 13.  I was on the old "exchanges" diet back then and it was horrible.  Now I'm on the carb-counting diet that paddbear was talking about, as well as the long term and fast-acting insulin combo that livecam uses.  My A1C counts are always under 6, and I don't use sugar-free anything. (I hate the taste of artificial sweetners - bleeeah.)  I eat whatever I want without worrying about my blood sugar because I know how to control it.  Like a dialysis diet, it takes a bit of time to learn, but after a while, you can figure carbs without even reading a label, and calculate exactly how much insulin you need.  They also have insulin pumps out now that are practically an artificial pancreas - they will even continuously monitor your blood sugar and automatically dose you if you are high and sound a warning if you are low.  (Someone I know just got one, and she loves it - no boluses, no shots, no finger sticks.)  It stinks that you might have to deal with diet restrictions again, but diabetes is a lot easier to deal with than it used to be!

[rimbo74]

I just received my transplant 4 weeks ago and I'm diabetic now where I wasn't before the transplant.  They told me mine would most likely go away once when the taper down my prednisone medicine.

[angela515]

I just received my transplant 4 weeks ago and I'm diabetic now where I wasn't before the transplant.  They told me mine would most likely go away once when the taper down my prednisone medicine.

I had to monitor my blood sugar for the first month after transplant but then it went to normal.

[paddbear0000]

They also have insulin pumps out now that are practically an artificial pancreas - they will even continuously monitor your blood sugar and automatically dose you if you are high and sound a warning if you are low.  (Someone I know just got one, and she loves it - no boluses, no shots, no finger sticks.)  It stinks that you might have to deal with diet restrictions again, but diabetes is a lot easier to deal with than it used to be!

I too am on a pump and love it! But regarding your friend on the pump--even if she is using a pump that continuously monitors her blood sugar, she MUST still do finger sticks once or twice a day! The way the machines test your blood sugar is different than the blood method in the fingers. It tests fluid in your skin, which is a less accurate method than by blood. There is a time lapse of about 15 minutes between the skin fluid and blood that must be accounted for. This means there is a difference of 15 minutes in your blood sugar  levels, which if you are low, can be very dangerous. You also need to do finger sticks when you start using a new glucose monitor every 3-4 days, once or twice a day to make sure the pump is calibrated correctly and if you are sick or feel low (due to the time/reading discrepancy). They can mis-calculate very easily! If your friend is doing no finger sticks, I highly suggest she find a new doctor who will teach her how to do it right (although she may be choosing not to do the sticks all on her own). This can be very dangerous and lead to serious complications.

[jbeany]

Paddbear, the reason she loves this meter is because she hardly ever checked her sugar before, even when she was supposed to.  At least with this one, something is checking!

[st789]

If Cyclosporine increases one chance of getting diabetic then I make consider switch it but so far my blood sugar is doing fine post transplant 2 yrs.

[mmmmdeedee]

I just found out today that I am borderline diabetic. But number they gave me was 148 tho. Not sure because that does not correlate with the numbers you guys are getting. I talked the clinic into letting me try dietary restrictions first before getting on medication.

I did not know this was a problem. Not until right now did I realize that it appears to occur in 20% of transplant recipients. Does anyone have a site that I can go to for guidance on diet? Or does anyone have any suggestions? I am to see a diabetic counselor in the near future.

[goofynina]

For right now i would say to stay away for all sweets and carbs and white food (potatoes, rice, crackers, etc...)  Sorry this is happening but i am glad they found it early and perhaps you are able to control it with diet and exercise and not have to take meds.  Good Luck mmmmmdeedee and remember, we are just a keyboard away girlfriend 

[paddbear0000]

If there is a chance of becoming diabetic after having a transplant, what about for people getting a pancreas transplant along with the kidney, specifically so they aren't diabetic anymore? Does this mean I could still end up diabetic anyway?! What's the point of having both transplanted then?

[stauffenberg]

Except for the black population, which runs about a 25% risk of developing permanent type 2 diabetes post-transplant, the chances of developing diabetes from immunosuppressive drugs are small enough that diabetics having a combined pancreas and kidney transplantation still makes sense.  Also, pancreas/kidney transplants are limited to type 1 diabetics, while the type of diabetes that develops post-transplant is type 2, which is a very much milder form, so again, it makes sense to have the combined pancreas/kidney transplant despite the risk of developing type 2 later.

MMD's blood sugar of 148 was measured on the old scale, prior to the introduction of SI (system internationale) units which all labs are supposed to follow post-1985.  For some reason American labs are the only hold-outs still using the old-fashioned units for all physiological values.  If 148 is a fasting blood sugar value, then it is slightly high, since the normal fasting range is 80 to 120 mg/%.  But since true diabetics present with a blood sugar anywhere from 200 to 800, depending on the ability of the kidney to retain that much sugar in the body without spilling it into the urine first, so 148 still gives you a lot of time to avoid developing full-blown type 2 diabetes.  Things you can do are 1) lose weight; 2) follow a diet low in sugars and fats; 3) exercise.