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strugglinDiabetic

Kombiglyze XR and Kidney Damage

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strugglinDiabetic

Well.., I actually met with this nutritionist/dietitian on yesterday. I was really hopeful that she would give me major insight on things to do that I "didn't already know"  She was very nice and comforting however, at the end of the day, if it's not an asset to me (where I am in my walk) it's considered a liability...  With all that she said, we were able to discover that my total carb intake should be between 60 - 75 grams per meal. This is mainly because of my height and weight. I'm 6' 4" and about 240 lbs.... She was very concerned that I wasn't seeing an Endochronoligist yet though. I told her that my primary doctor hadn't referred me as of yet. She was perplexed concerning that decision and now so am I. As I told everyone on this forum, that I've received more information here than my own doctor... It's very terrible because I am doing all I know to do just to stay alive and live a healthier life but with no help from the individuals who are suppose to e here to help me per their Hippocratic oath. So, I now need to find a "kidney" dietitian because with renal disease (which I also have develop because the "doctors" weren't managing the other 2 drugs they had me on and it did a job on my kidneys, which are now 13% functional) I can only eat certain foods which are not high in potassium and/or phosphorus and it's to my understanding that the Renal diet is the hardest diet to truly navigate PLUS I'm a type 2 diabetic....  lol  At this point, I am really scared as heck of where this seems like it's going. Dialysis is a scary thought because I've read about and seen so many bad experiences with it...and it this point, it almost seem like my life is coming to an end (at only 53 yrs)...   So, I'm trying and striving to do ALL that I can do to help my situation. This is why I am sooooooooooo grateful that I found this forum. Again, thank you all for your input, suggestions and advise..

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predb4
Everyone keeps suggesting that I "eat right" and believe me..., that is exactly what I am so desperately striving to do, however, my challenge is, every time I think I got it right and I'm eating what I've read or what was suggested that will work for me, someone else says it's "not good" for me

 

 

hi guy, your meter is your friend, listen to it.  Let the rest eat brioche.

 

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Kit

I can understand your frustration.  You are butting up against a number of challenges.

 

1)  Most dietitians will recommend a huge number of carbs a day and low fat diets, which don't exactly work with diabetes.  Old stuff and stupid as all heck IMO.  I personally would ignore the dietician you saw as she gave you the standard ADA run of the mill crap that they give everyone and she wasn't able to really help you with the renal side of things either.

 

2)  With your kidney problems, you have further restrictions on diet which can be really difficult to navigate.  And unlike diabetes where you just have to look at the label for carb count, they don't have to say diddly squat for potassium and phosphorus.  So it can be really hard to know exactly what is in what food.

 

3)  Too many doctors out there are really partial to keeping the patient in the dark on what is going on.  They say its so they don't worry patients.  I think its so patients don't know how piss poor their recommendations are.

 

 

I agree you likely need an Endo as well as a dietician who specializes with renal patients, especially with ones who are diabetic.

 

Going very low carb is very difficult on a renal diet.  Insulin might be required in order to properly balance the two conditions and in all honesty you need a doctor who knows how to do that better than the average GP.

 

I wish you luck and hope you manage to get into good specialists who know what they are doing.

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Kit

Oh, and Metformin doesn't stress your kidneys.  If you are having kidney problems, they might not be able to filter the met out of your system so it can build up.  This can lead to a dangerous condition called Lactic Acidosis.  Its pretty standard procedure to take a patient off Metformin if they develop kidney issues for that reason.

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strugglinDiabetic

Hello everyone,

 

It's been a few days since I last posted and a lot have happened. I was able to see a ENDO and like you said (KIT) he told me that the Januvia was a weak drug and I needed something stronger because of the carb load and the other drugs that were available would or might damage my kidneys more. He put me on 8 to 10 units of insulin once a day before I go to bed. After about a week, I have been seeing the results and it seems pretty good. My readings before meals have been 98 (and in that area) and my readings 2 hours after have been around 155. I'm trying to get it down to 140 or 130. I want my a1c to be great come March 2016. As far as the CKD, it hasn't worsen...it's sort of stable right now. I'm still moving forward with APD as I only have 13% function, but I'm staying positive and keeping hope alive...smiles!

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predb4

Hello everyone,

 

It's been a few days since I last posted and a lot have happened. I was able to see a ENDO and like you said (KIT) he told me that the Januvia was a weak drug and I needed something stronger because of the carb load and the other drugs that were available would or might damage my kidneys more. He put me on 8 to 10 units of insulin once a day before I go to bed. After about a week, I have been seeing the results and it seems pretty good. My readings before meals have been 98 (and in that area) and my readings 2 hours after have been around 155. I'm trying to get it down to 140 or 130. I want my a1c to be great come March 2016. As far as the CKD, it hasn't worsen...it's sort of stable right now. I'm still moving forward with APD as I only have 13% function, but I'm staying positive and keeping hope alive...smiles!

 

Good to hear, keep it up and keep us posted of your progress.

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Kit

That's great news so far.  Keep working on those post numbers.  The closer you get to non diabetic numbers, the less likely you might cause more damage to your kidneys.

 

Definitely keep us posted.  We can be nosy at times.  :D

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janice21475

Hello everyone,

 

     . . . . I was able to see a ENDO . . . . He put me on 8 to 10 units of insulin once a day. . . .  been seeing the results. . . .  As far as the CKD, it hasn't worsen. . . . staying positive and keeping hope alive...smiles!

Hello strugglinD,

 

That is very good news. I am very happy for you. Keep up the good work & do post as often as you can. Seeing your improvement does my heart good. Thanks for your very uplifting post.

 

Kind regards,

Janice

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Cora

Hi StrugglingDiabetic. Sorry it took me so long to get to this thread. I won't dump too much info on you, but you can always ask me questions either here in public or via PM.

 

First off, can you tell me what your creatinine, potassium, and BUN are? Those are good indicators of how you are doing. Don't go by eGFR too much as it is quite unreliable.

 

Next, my suggestion to you is to not take diet advice (sorry everyone) from anyone who is not acquainted with renal issues. I would definitely see a renal dietitian. This person does not need to specialize in diabetes, as the renal folks are used to dealing with diabetes. Right now, one diet has to trump the other and since yoiu've had issues with high potassium (which is very dangerous), to my mind the renal diet should trump and then secondarily, you will need to work to find a way to keep your blood sugars under control. Here's how I always looked at it. What happens if you don't follow the renal diet properly? Well, high potassium can kill you or other things will push you more rapidly towards dialysis (ugh). What happens if you don't follow the diabetic diet properly? Well, you could get kidney damage. Oh, wait. You're there already. A good renal dietitian should be able to help you eat low carb, but still remain renally friendly. Most of the ones I know will take what you eat (there's no "set" renal diet the way the diabetic dietitians have a set program) and then try to make it work. I especially would not want to eat as many carbs as this person is suggesting. You can eat lower carb  and be renal friendly.

 

Finally, if you don't have a lot of swelling, make sure you keep hydrated with non-caffeinated beverages. It helps the kidneys in part because it's easier to push a thinner fluid through a filter than something that's more akin to oatmeal (sludgy with sugar and all sorts of other stuff).

 

Anyway, that's my initial comments. Feel free to ask me questions. I'm not a doc, but play one in my own life and my nephrologist treats me as a team member and peer when it comes to my care.

 

ETA insulin is often the diabetes med of choice as it has no significant renal repercussions. don't be afraid of it. It just takes a bit of work.

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strugglinDiabetic

Thanks everyone...,

 

Cora, my Creatinine, Serum was 5.51, Potassium Serum was 5.0 and my BUN was 54. The eGFR was 13.2  It hasn't moved since October 2015. I'm striving really hard to locate a renal dietitian. And yes, I realize that potassium can kill. That was the reason I was sent to the emergency last year because my potassium levels were too high. I was blessed that I didn't have to have an emergency catheter placed through my next next to my heart. At the time, I really didn't know what was going on because I felt fine. My nephrologist called and told me to rush to the emergency (after they got my lab results from the lab). Now....., I understand what was going on and what could have happen (thank God it didn't go that route). I understand that my numbers are still high, however, my a1c was higher than 6.4 (which is what it is now) and closer to 10 at one time. I've lost weight and eating much better and now, I'm concentrating on getting all of my numbers under control....

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Cora

Thanks everyone...,

 

Cora, my Creatinine, Serum was 5.51, Potassium Serum was 5.0 and my BUN was 54. The eGFR was 13.2  It hasn't moved since October 2015. I'm striving really hard to locate a renal dietitian. And yes, I realize that potassium can kill. That was the reason I was sent to the emergency last year because my potassium levels were too high. I was blessed that I didn't have to have an emergency catheter placed through my next next to my heart. At the time, I really didn't know what was going on because I felt fine. My nephrologist called and told me to rush to the emergency (after they got my lab results from the lab). Now....., I understand what was going on and what could have happen (thank God it didn't go that route). I understand that my numbers are still high, however, my a1c was higher than 6.4 (which is what it is now) and closer to 10 at one time. I've lost weight and eating much better and now, I'm concentrating on getting all of my numbers under control....

Hey there StrugglinD. I'm sorry to tell you this, but you are past the point where many centers will start teaching you about the different modalities for dialysis. Don't get too freaked out about the BUN. It will make you look yellow and feel a bit "off" but there are no really significant repercussions. You'll just feel a bit flu-like. Depending on how you feel, it may still be some time before you need dialysis (I was about 10 or 11 before I went on - but I left it too long). My personal preference would have been for the dietary flexibility and mobility flexibility of peritoneal dialysis (PD). Calorie King can help you to keep your potassium in check but I also liked Corinne Netzer's Complete Book of Food Counts as it had phosphorus in the levels as well - and that's often left out.

 

At this point, it's quite possible that you feel fine, but unfortunately you are one "accident" away from being put on dialysis on an emergency basis. I left it too long, and didn't plan ahead and I should have. I went to a conference across the country, got food poisoning, double pneumonia, a small MI, and got put on dialysis. Believe me, it was not fun flying home after a month in hospital. So I would suggest that as soon as possible you decide on a modality and get the necessary (small) surgery to be prepared. That way you will maintain your health much better. Any illness like flu/food poisoning could push your kidneys past the point of no return and you'd be stuck. DaVita has good info on their site and I would also check out I Hate Dialysis (also an excellent site) to speak with other kidney patients to see how they've coped and planned.

 

Best of luck. Be prepared.

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strugglinDiabetic

Thank you Cora,

 

Yes, I have selected a modality and have relied that information to my nephrologist. He has already submitted it to my insurance and I believe next month when I see him at my next appointment, he's going to schedule me to go up North to Bakersfield, where they will place the catheter in my stomach. So yes, I have already started on that journey, however, I'm still striving to gather all of the information that will benefit me and research all of the avenues I'll need to travel...  (WOW) this is so overwhelming, however, I'm trying to get it all. When I think I got it or close to understanding most of this journey, something else surfaces and I discover even more I need to know or I didn't know....So, here we go.... smiles!

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Cora

The good news for you regarding PD and travel is that Baxter tends to ship worldwide. It's easy enough throughout North America, but I believe they will also ship to Europe and Asia, so if you are on the cycler, it's like carrying a small printer onboard as carryon. The nice thing in the summer when it's hot is that you can not heat the fluid up to "normal" temps and do a twin bag method during the day and cool yourself off from the inside out. There are hemo dialysis cruises, so I'm sure that taking PD supplies onboard should be easy enough. Just like with diabetes, there are always ways to figure out how to get what you want. it just takes a bit of effort and applying your brain.

 

Best of luck, and check out the IHateDialysis site. Lots of nice people there. I'd also firmly suggest getting tested for transplant. Scary, I know. But transplant is terrific!

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strugglinDiabetic

Hello (and thanks for asking "Moonpie"

 

Currently, my nephrologist hasn't scheduled me to have the catheter implanted in my abdominal cavity yet. As a matter of fact, after going to my last visit about a month ago, he saw the lab results and stated that my kidneys went from 12% functioning up to 15% functioning. He said that he saw improvement and for me to continue doing what I was doing (eating right foods, exercising, etc...)

 

He then scheduled me for my next appointment 2 months after, instead of the normal 1 month he had been doing.

 

I'm doing a lot of praying (smiles)

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BigMouithXXX

Congratulations for all this positive information.  You are not out of the woods but you are hanging in there.  I am sure you have your peddle to the metal just to do that. Serious life style changes can make a difference. 

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