I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: talon999 on July 30, 2008, 07:30:02 AM

Title: D & D who's got it?
Post by: talon999 on July 30, 2008, 07:30:02 AM
Hey Folks,

I have Diabetes and Kidney Failure. Since my Kidney's have shut down I am having a very difficult time managing my bloodsugars. I wear an insulin pump and I have changed my carb to insulin ratio and my insulin sensitivity but I am still having problems. My sugars were never that great but much better than they are now. What is everyone doing for this? Am I alone in this or do others have similar problems?

MODS: I would have put this in the diabetes section but there is not much action there.


Mark

Modified: some dumb a$$ cannot spell
Title: Re: D & D who's got it?
Post by: Joe Paul on July 30, 2008, 07:45:26 AM
My kidneys shut down 2 and a half years ago, after having sugar for 34 years. Before kidney failure, my sugar was all over the place, but since then I have better control. I still have spikes, but not as often and they are usually stress related.
Title: Re: D & D who's got it?
Post by: talon999 on July 30, 2008, 07:57:15 AM
Joe Paul,

That's funny, my experience is almost the opposite. My kidneys failed in June of this year and I too have been a diabetic for 32 years. I had some serious lows this spring as my kidneys were steadily getting worse. I was told that this was because my kidneys were no longer filtering out the insulin at a "normal" rate. The docs and I are still working on this by adjusting my pump settings.


Mark
Title: Re: D & D who's got it?
Post by: stauffenberg on July 30, 2008, 09:48:34 AM
Diabetics with renal failure can experience unexpected hypoglycemia because the kidneys are involved in the metabolism of insulin.  When the kidneys decline in function or fail, the metabolism of insulin is slowed and so it continues to operate for a longer time in the body, thus becoming more effective in reducing blood sugar.  But on the other hand, dialysis causes a continual state of hormonal chaos, and as every diabetic patient knows, unstable hormones during the teenage years can cause both high and low blood sugar spikes, so again, the blood sugar becomes more difficult to control.

The overriding consideration for diabetics with renal failure is that for them, getting a transplant and getting off dialysis as rapidly as possible is medically much more important than it is for other patients.  Diabetics have a very much lower life expectancy on dialysis than others do, and their complications are made worse by the fact that excess sugar remains sequestered in the blood much longer than in patients with normal renal clearance, since the kidneys normally serve as a 'second pancreas' by removing excess sugar from the blood.  While a transplant doubles the life expectancy of the average dialysis patient (depending on age, of course), it triples the life expectancy of a diabetic dialysis patient. Diabetics on PD also have the problem that the dialysate is based on glucose, which elevates both blood sugar levels and blood lipid levels.

Interestingly, there is increasing evidence that diabetic renal failure is not caused by high blood sugar levels.  The fact that there is an extremely sharp peak of new cases of diabetic renal failure 17.5 years after onset of diabetes, despite the fact that there is a fairly flat Bell curve distribution of excess blood glucose levels in that population, suggests that something else, quite possibly some gene inherited along with the genes for diabetes, is causing renal failure.  The astonishing fact that very few diabetics who do not develop renal failure within 20 years of diabetes onset ever go on to develop it later, however high their blood sugar is for however many more decades they live, strongly points to something other than high blood sugar causing diabetic renal disease.  The recent research by P. Aaltonen, et al, "Antibodies to Nephrin in Patients with Diabetic Nephropathy," Nephrology, Dialysis, Transplantation (2007) 22 (1) 146-153, suggests that the real culprit in diabetic renal failure may be the continuing autoimmune attack on the body which first began years before with the attack on the beta cells of the  pancreas.

Title: Re: D & D who's got it?
Post by: talon999 on July 30, 2008, 10:00:27 AM
Diabetics with renal failure can experience unexpected hypoglycemia because the kidneys are involved in the metabolism of insulin. When the kidneys decline in function or fail, the metabolism of insulin is slowed and so it continues to operate for a longer time in the body, thus becoming more effective in reducing blood sugar. But on the other hand, dialysis causes a continual state of hormonal chaos, and as every diabetic patient knows, unstable hormones during the teenage years can cause both high and low blood sugar spikes, so again, the blood sugar becomes more difficult to control.

The overriding consideration for diabetics with renal failure is that for them, getting a transplant and getting off dialysis as rapidly as possible is medically much more important than it is for other patients. Diabetics have a very much lower life expectancy on dialysis than others do, and their complications are made worse by the fact that excess sugar remains sequestered in the blood much longer than in patients with normal renal clearance, since the kidneys normally serve as a 'second pancreas' by removing excess sugar from the blood. While a transplant doubles the life expectancy of the average dialysis patient (depending on age, of course), it triples the life expectancy of a diabetic dialysis patient. Diabetics on PD also have the problem that the dialysate is based on glucose, which elevates both blood sugar levels and blood lipid levels.

Interestingly, there is increasing evidence that diabetic renal failure is not caused by high blood sugar levels. The fact that there is an extremely sharp peak of new cases of diabetic renal failure 17.5 years after onset of diabetes, despite the fact that there is a fairly flat Bell curve distribution of excess blood glucose levels in that population, suggests that something else, quite possibly some gene inherited along with the genes for diabetes, is causing renal failure. The astonishing fact that very few diabetics who do not develop renal failure within 20 years of diabetes onset ever go on to develop it later, however high their blood sugar is for however many more decades they live, strongly points to something other than high blood sugar causing diabetic renal disease. The recent research by P. Aaltonen, et al, "Antibodies to Nephrin in Patients with Diabetic Nephropathy," Nephrology, Dialysis, Transplantation (2007) 22 (1) 146-153, suggests that the real culprit in diabetic renal failure may be the continuing autoimmune attack on the body which first began years before with the attack on the beta cells of the pancreas.






JEEZ !!!! Who is this person ????

I've gone to doctors who don't know this much !!!!


Mark

Title: Re: D & D who's got it?
Post by: paris on July 30, 2008, 12:36:06 PM
Stauffenberg is one of our resident experts.  I have learned more from some of our members than I have from any doctor.    Hope you find an answer to your question.
Title: Re: D & D who's got it?
Post by: kellyt on July 30, 2008, 12:38:28 PM
Stauffenberg is one of our resident experts.  I have learned more from some of our members than I have from any doctor.    Hope you find an answer to your question.


I whole heartedly agree!  I love my Nephrologist, but I have learned far more here (and from stauffenberg) than from my doctor(s) or anyone else!
Title: Re: D & D who's got it?
Post by: jbeany on July 30, 2008, 07:36:40 PM
what kind of insulin are you on?  My A1c was a mess until I started on Lantus, combined with Humalog at meals.
Title: Re: D & D who's got it?
Post by: G-Ma on July 30, 2008, 08:33:53 PM
Diabetes diag in 1987, finally able to get off any form of insulin and finally have A1C in good control, stress was a major culprit.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 04:49:03 AM
G-Ma, I am a Type 1 diabetic and will never get off insulin unless I can get a pancreas. Good for you in getting your A1c under control.

jbeany, I am on an insulin pump and I use Humalog. The docs have brought up the fact that I may have to change insulin. I take it that you are not on a pump. How do you like the lantus? I have heard mixed opinions about it.

We continue to tweak my pumps settings, I guess it will just take some time.


Mark
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 06:50:03 AM
Hey Folks,

I have Diabetes and Kidney Failure. Since my Kidney's have shut down I am having a very difficult time managing my bloodsugars. I wear an insulin pump and I have changed my carb to insulin ratio and my insulin sensitivity but I am still having problems. My sugars were never that great but much better than they are now. What is everyone doing for this? Am I alone in this or do others have similar problems?

MODS: I would have put this in the diabetes section but there is not much action there.


Mark

Modified: some dumb a$$ cannot spell


I had that same predicament when I had kidney failure and was on the pump. At first I was just on shots, then switched to the pump. The pump did help, but I still would have problems, just not as frequent. I also didn't know when I had lows. My whole diet changed (besides being on a renal diet) on how much to eat and then spread it out over the day. After that I just had problems with the pump wither time to change the tubing for some unknown reason, a pump problem, or the canula coming off during the day.
Title: Re: D & D who's got it?
Post by: G-Ma on July 31, 2008, 06:54:06 AM
Mark, my neph in ND initially talked to me about a kidney/pancreas transplant but then said my body is insulin resistant so would not need the pancreas.  I understand they do the pancreas tx first and then a few weeks later the kidney or when available.  Are you on a list for a pancreas?  Good luck on this journey.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 07:15:38 AM
Chris,

I hear you on the pump problems. They are a big advance but not perfect. I have plenty of mechanical problems with the pump also. I can handle that alright. My concern is getting the basels set correctly.

 G-Ma,

That bites about the insulin resistance thing. I have been a diabetic for 32 years so a few more should not bother me. I would like to get a kidney ASAP as Dialysis is not all it's cracked up to be. I am just getting on the lists for a kidney. I am working on getting info on places that do both that my insurance co. will cover.  The details in red tape are killing me on this.


Mark
Title: Re: D & D who's got it?
Post by: G-Ma on July 31, 2008, 07:40:27 AM
The red tape has got to be terrible.  Is there not some sort of case manager on your insurance that can help you?  Also, Dr. D seemed to feel that he thought the pancreas first was a good idea to work on the diabetes and then the kidney...this was just his thought but he is one of the best Dr's I have ever had...very thoughtful...he also is in remission from bone cancer again so knows of what he speaks.
You are absolutely correct...dialysis is NOT a comfy chair to lounge in...I firmly believe everyone who works in dialysis should have to follow all the patient procedures one day a year for their own evaluation and I have suggested this and was met with mumbles.
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 07:56:31 AM
Chris,

I hear you on the pump problems. They are a big advance but not perfect. I have plenty of mechanical problems with the pump also. I can handle that alright. My concern is getting the basels set correctly.

Mark

You may or may not be doing this, but the way that helped me was working with the diabetes educator and dietitian at the same time in the same meeting. I would keep a diary of what I ate, glucose readings before and sometime after eating to adjust my basal rate correctly. It wound up to be a .7 basal rate, I wish I was doing the carb count years ago at the time. I thought it would be hard when they first talked about and the book didn't help with the diagrams, but as they went over it, it was easy.

Also the site where your infusion is at may play a part due to absorption rate of insulin.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 09:09:06 AM
Hey Chris,

I am trying to do the samething. My problem is that I do not test my sugars enough to get complete information. I lack the discipline to do this weel. As you know Diabetes in itself is a fulltime job. If you add dialysis and a real job to the mix you quicky become a tad overburdened.  Carb counting is a great system for controlling BS. I too wish that I had learned this a long time ago.


Mark
Title: Re: D & D who's got it?
Post by: stauffenberg on July 31, 2008, 09:31:54 AM
For some type 1 patients, the inherent instability of the disease is so great that there is simply no way to keep the blood sugar values in the desired range.  This is because the spontaneous variation in the autoimmune attack which throughout the patient's life ontinues to destroy new pancreatic beta cells as they grow back is so great that some days the patient has a high production of native insulin, while other days he has none.  In my own case, if I eat exactly the same food in the same measured amounts at the same time of day with the same blood sugar level and the same insulin dosage to start, the level of the resulting blood sugar level two, four, or six hours later can vary by as much as a factor of four.  No planning can possibly deal with that situation. 

But since I have so far lived with this situation for 42 years, while many of my diabetic friends with excellent blood sugar control have died of complications after less than 20 years, something else is obviously going on in causing diabetic complications than blood sugar control.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 09:37:04 AM
stauffenberg,

Did you mean Type 2 diabetes? I am under the impression that type 1 diabetics (me) do not produce any insulin. That type of variation has to be rough to handle. I think the long term effects of diabetes varies greatly on each person. Too many other factors enter into the equation.

Mark
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 09:37:42 AM
I too hated testing blood.. When the meters first came out that still used the color coding strips, I hated testing my blood. The lancet devices where painful to use. Then new meters came out and a new type of lancet device came with it too. I would test as told but became laxed after awhile. Something always came up that would start me to test more and then dwindle down. With hypoglycemic unawareness I started to test more, but still not enough. Then came dialysis and in order to get the pump, I had to test more especially when they were testing out the continuous glucose monitor. It's gonna be hard, but sometimes you have to force yourself to test to keep records.  I ended up testing more than 8 times a day while on dialysis out of necessity. However, your insurance may become an issue, so a prescription may need to be changed for more testing supplies.

However, even after transplant I am suppose to check my BS once to twice a day and I don't. I have become laxed over the years in testing and I shouldn't.

Testing is more of a mental game, at the time I felt I needed and have to to stay in as much control as possible. Now it is I feel good, blood sugars run great each month, HbA1C is great, and I just feel like I can do it tomorrow or the next day. Which just leads me to not test and make up numbers when the doctor ask.

Just don't do that. try to test as much as you can especially when you notice differences during certain events or foods that you eat.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 09:50:11 AM
Chris,

I know exactly what you mean. The meters were a great improvement over testape. I never had too much trouble picking my fingers. The cost always bothered me. I have had insurance and no, you never get enough strips. The cost of strips alone would be $5.00 to $10.00 per day let alone insulin, special diet and whatever else you needed. I am working on the testing thing, slow progress...

Mark
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 01:21:14 PM
Yep, Testing routine is a slow progress to do for me too. I now have an over abundance of test strips and lancets for not testing 4 times a day like my doc wants me to do now days. But my strips are for a talking meter by advantage or advance. I can't even remember the brand since I barely use it and it's a fairly new meter.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 02:06:18 PM
Chris,

I'm sorry, are you still on the pump? If so, what kind of pump. My meter talks to my pump and transmits my glucose readings directly to the pump. Yhe pump then calculates what I need for insulin. A great advancement. One step closer to continuous glucose monitoring. The meter is put out by Lifescan (onetouch). It is designed to work with the minimed brand of pumps (522 & 722).
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 05:45:20 PM
Nope, I had a simultaneous kidney and pancreas transplant, but doctors still want me to test blood sugars. Depending on which doctor coocoobananas I talk to, one says to test 1 to 2 times a day and the other says 4 times a day. ??? ::)

I was on an old MiniMed 507 pump. At the time I was testing MiniMed's continuous monitor, it was the size of a glucose meter that you kept in for 72 hours. The meter I have is more for diabetics with low vision. Not the best thing, but far more advance than One Touch offers and what Accu Chek offered till last year. They are dinosaur meters with speech output compared to what is now available and what is coming out(according to Voice of the Diabetic newspaper)
Title: Re: D & D who's got it?
Post by: stauffenberg on July 31, 2008, 06:14:27 PM
Talon:  Interesting recent research by Dr. Denise Faustman at Harvard University has shown that the autoimmune attack that initially causes type 1 diabetes also continues for the lifetime of the patient, at the same time as the beta cells of the patient are spontaneously trying to grow back.  Thus the high blood sugar the patient experiences is really a measure of the balance between the autoimmune attack and the regrowth of beta cells at any given moment.  Since both the strength of the autoimmunity and the rate of regrowth of the beta cells can vary, the blood sugar level and the insulin requirements will vary, depending on the equilibrium point reached at any given moment by the two competing forces.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 06:58:56 PM
Chris,

I had a minimed 508, it was OK. The 722 is much better. That is great that you got a 2fer. I am trying to get that myself. I have to do some homework on a center that will do this and be covered by my insurance. I have also used the CGM. I am not sure the CGM is there yet. Close but not quite. How are you handling the anti-rejection drugs? Any serious problems? Sorry to hear about your vision problems. I know that I cannot look at anything white without seeing a mist in front off me.

stauffenberg,

That is incredable, the first I have heard of this. I assume that someone is looking into drugs that would suppress the attacking immune system. Are the current anti-rejection drugs effective at all?


Mark
Title: Re: D & D who's got it?
Post by: Chris on July 31, 2008, 07:11:03 PM
Chris,

I had a minimed 508, it was OK. The 722 is much better. That is great that you got a 2fer. I am trying to get that myself. I have to do some homework on a center that will do this and be covered by my insurance. I have also used the CGM. I am not sure the CGM is there yet. Close but not quite. How are you handling the anti-rejection drugs? Any serious problems? Sorry to hear about your vision problems. I know that I cannot look at anything white without seeing a mist in front off me.

Mark

My friend was on the 508 and she switched to the 722 and likes it better also. I prefer getting two organs than having two seperate operations from two seperate people. Get it over and done with so I can get on with my life. The anti-rejection meds I am on haven't been a real problem compared to others on the same regimene. I just have hand tremors, but are barely noticable now, but up my dose on the other med, then I am in the bathroom for awhile. Stuff that has happened that I do have an answer for is due to having diabetes for so long, being on dialysis, transplant medications, and a lack of dairy and vitamin rich food intake. Vision problems, just a part o life to me, I adapt as much as I can and technology allows me too.
Title: Re: D & D who's got it?
Post by: talon999 on July 31, 2008, 07:36:44 PM
Chris,

Sorry for asking so many questions, (but....) how often do you have to adjust your meds? How do you know you need to adjust? Do you make the decision or does the doctor? (I like to be independant. Not easy on dialysis)

Mark
Title: Re: D & D who's got it?
Post by: Chris on August 01, 2008, 04:51:01 AM
No problem. The anti rejection med dose is based on monthly labs done or if needed, more lab work is done. There are more labs taken right after transplant and doctors adjust meds based on that. They just adjusted one of my doses due to the readings, so I now take a lower dose/1 less pill.
Title: Re: D & D who's got it?
Post by: talon999 on August 01, 2008, 09:02:06 AM
Chris,

Thanks for the explanation on the anti-rejection drugs. That makes sense to me now.
Less meds are always better !

Mark
Title: Re: D & D who's got it?
Post by: stauffenberg on August 01, 2008, 09:21:17 AM
Talon: Dr. Faustman has found that two things are necessary in principle to cure type 1 diabetes: first, the autoimmune attack in the patient has to be halted, and second, some stimulus to the regrowth of beta cells has to be given, since after many years of the autoimmune attack, the regrowth becomes too feeble to allow patients to escape the need for injected insulin, to become able to eat what they want, and to keep blood sugar completely normal.  One of the substances being tested now to stimulate regrowth of beta cells is INGAP polypeptide, which seems to work well in animals.  Faustman's goal is to find some new class of less toxic immunosuppressive drugs to stop the autoimmune attack, since most diabetics are not already taking immunosupressives for other reasons, and the argument could be made that the toxic effects of the present immunosuppressives are worse than those of diabetes itself.

A more promising avenue to cure diabetes is now being pursued in New Zealand by Dr. Bob Elliot with the Living Cell Technologies Company.  They are implanting into diabetics pig panceatic islet cells encased in a differentially permeable membrane which lets in blood and other nutrients and lets out insulin, but blocks the entrance of the body's immune cells, so the pig islets are safe from attack without the need for immunosuppression.  Human trials have already been conducted in Russia and a few patients have been able to give up injected insulin entirely, but that result was achieved only with the minimum dose of islets used to establish the safety and effectiveness of the procedure.  Dr. Valdez in Mexico about 5 years ago already achieved similar results in humans, but the medical community rejected his work because they found it unethical, since it was conducted on children without prior testing in monkeys, and his procedures were not rigorously documented.
Title: Re: D & D who's got it?
Post by: talon999 on August 01, 2008, 10:09:13 AM
stauffenberg,

That is good news. I am uncomfortable with testing this stuff on children. It may be that they were dieing and this was a last resort but you are right, the medical community would crucify anyone over that. I am encouraged with the talk about stem cells also. I think that the researchers are on the brink of some major advances here. Time will tell. Just hope to be here to enjoy some of it.

Mark