I had a sneaking suspicion that it was coming… I have been having troubles with kidney stones for the last year and half so had some tests this summer to help figure things out. Had a 24-hr urine sample now 3 times and blood tests also.
The other day my GP told me that I had stage 3 CKD. I tested with a GFR of 54 mL/min last month but now am above 60. I met with a dietitian and she complicated my life. I have been focusing on my HA1c by maintaining a low-carb diet and now she said that I need to cut down on proteins. The CKD was a surprise and am not sure how to deal with it. He mentioned starting lisinopril-HCTZ, not for my BP but to help save my kidneys. What is the consensus here about that drug and how to maintain a good diet that won’t send my BG skyward? I have seen a Urologist and my GP is chatting with a Nephrologist; any recommendations on who I should see next?
My last visit to the nephrologist, confirmed that I was still at Stage 3 of Chronic Kidney Failure, so I guess that is a good thing. I too, am leery of dialysis, and with my load of medications, if that happens, I will feel like I am living just to take medications to keep me alive! Major problems, yes?
I began dialysis this week, and it went more smoothly than I anticipated. I had an a/v fistula put in back in May, since I knew my kidneys were not going to get any batter. I was Stage 3 then. I got to Stage 4 this summer, and thought I would be bransplanted before I needed dialysis, but Stage 5 arrived suddenly a couple of weeks ago. At least I don’t have to have a central venous catheter - the fistula is working well. Two things I wasn’t expecting: I don’t need blood pressure meds at all on the days I dialyze, and the diet doesn’t loosen up all that much – now they’re pushing protein at me, so it’s changed, but still strict. I do feel noticeably better after dialysis (though worn out). Good luck to my fellow travelers on this road – let’s keep each other updated!
Andrea - I only took my bp meds on non-dialysis days. I didn’t need them on the days I was on the machine. I would have preferred pd as the diet is much less restrictive. Glad you feel better.
Todd - lisinopril is the gold standard in patient care. It has been shown to slow, or even in some cases, stop the progression of kidney disease. I was one of the very early adopters of an ace inhibitor in the 80s whe they first started using them, and it took mroe than 20 years for me to progress to dialysis. I would definitely see the nephrologist, They will be able to give excellent diet tips as they are used to diabetic patients.
Am I going to die? I got my test result and now I have to see my doctor to find out about my kidney. My CREATININE 0.7 (low), Random Urine Creatinine 159.7(high), Random Urine Microalbumine 42(high) and Albumin to Creatinine Ratio 27.
Miss Robbie- those numbers are only slightly abnormal. It probably means you have kidney disease but most diabetics with kidney disease don't get kidney failure. Also, according to your page, your A1c over the summer was way higher than it is now. If you can keep it down, it sounds like your kidney disease is early enough that it might be reversible.
Miss Robbie, I'm going to sound harsh here, but I mean it in the nicest way. Don't be ridiculous. You are not going to die. Your levels are almost normal. My creatinine was over 10 before I went on dialysis and that took over 20 years for me to get there. With the advent of modern drugs and treatments it is entirely possible that things may not progress for you at all. Things are very positive for folks in the earliest of stages (things are barely noticeable from your labwork). Talk to the doc. You may be put on an ACE inhibitor which is a drug that can help protect your kidneys. Best of luck.
I left out something and that's why I am very worried . In 1999, I was told i had kidney damage but I wasn't treated for the disease because it was in the beginning stages. Fast forward 13 years later, I final have health insurance again to see a doctor and I know my kidneys can't still be in a the early stages after 13 years of uncontrolled diabetes.
Your kidney disease can certainly still be in early stages; kidney disease doesn't always progress, even with poor control. You're still in early stages. At this rate (and it doesn't have to progress evenly or at all), if you already had kidney disease, it's progressing so slowly it'll probably never kill you.
About three years ago I got some test results that were almost the same as what you've got. It was only two years after I was diagnosed with diabetes, my control was as good as I could get it (in the 6s) and I freaked out! All my anxiety about diabetes and about everything just came together and I felt like I was just waiting to die. Fog is a good word for how I felt. It was worse than when I was diagnosed with diabetes. That year I had a whole bunch more health diagnoses, and finally I got myself into therapy. I probably should have done that first.
My follow up bloodwork and 24 hour creatinine were better, almost normal. Since then my urine tests have been very dramatically abnormal when I've been very sick with other stuff (when I had gallstone pancreatitis, my urine protein was the highest they measure), and totally normal the rest of the time. My blood creatitine is always abnormal but it's been exactly the same for the last few years; no progress. My endocrinologist says that he's not even convinced that it's diabetes that's making my kidney stuff abnormal but that it's close enough to normal that I don't need to see a nephrologist at this point.
Hello folks, well this day has been coming for a while now. So it's time to look to others to get questions answered.
I saw my endo yesterday and my BUN and creatinine were both way out of spec high. One was 9.0 and the other was 97 (I never can remember which is which).
I am supposed to be seeing a surgeon next week to get the plumbing all setup. My wife is the one who is going to need a someone to talk to about diet and her own feelings. She is on Tu and I will try and get her to join this group.
Tu has been so much help for me with my diabetes. Now I just look for help for this latest problem.
Hi there Sparky. What type of dialysis are you going to do. Both forms (hemodialysis and peritoneal dialysis) require some "plumbing". Here is the good news for you. Nothing is ever going to be as bad or as scary as you think it's going to be. It won't always be a barrel of laughs, but you will come out the other side, sigh deeply, and say "that sucked, but I could do it again if I had to". Are you also being worked up for transplant? I was on hemo for a year, tried pd (would have preferred it but couldn't do it due to female plumbing problems) and then had my transplant almost 10 years ago. Ask all the questions you want. I've probably been there, done that, and bought the tshirt.
Cora, you dont know how much I appreciate your kind words. Male or not I cannot even talk to anyone about this right now without getting all teary eyed.
The worst part, my wife and I had planned on taking a cruise in December for our 40th anniversary.
I am going to be getting hemodialysis. I have been told by the kidney doctor that I would not be a candidate for PD.
My eldest daughter wants to be tested to see if she can donate a kidney. With all of my other health issues (heart disease for one) I do not know if I would be a candidate for a transplant or not. Haven't even discussed that yet.
The thing that strikes me as odd is they keep saying that my lab results are critical yet I see no real urgency to get me hooked up to a machine. I guess I just figured they would toss my fat butt in the hospital, put in the central port in the shoulder and start the treatments and while in the hospital do the fistulas. Guess not.
So thanks for the info. I will be asking more questions.
Hi again Sparky. It's a tough road but you will be ok. Did you know that there are dialysis cruises?
I hope you are seriously considering accepting the kidney from your daughter. It is often hard to accept such a gift, but think of it this way. You would rush into a burning building to save her, wouldn't you? Well, she is doing the same thing for you, only giving a kidney is much, much safer.
How are you feeling? If you feel ok they won't slap you into the hospital and get things done on an emergency basis. It is important to get it done, but they will schedule you. It's less scary that way too.
Hi guys, I am Sparky's wife (brokenpole) and thanks for your responses Cora. I know our oldest daughter would not be able to be a match, but my youngest daughter has his exact blood type and I am O neg. I believe Laura and I both would consider donating, but Laura has asthma pretty bad and no health insurance. Main thing is I think its way too soon to consider transplant. We are all still in shock here. Not lived here in Vicksburg very long and don't even have any friends I can talk to. I do know that I can adjust to this new bump in our life together and will do whatever we have to do to help Sparky be happy and comfortable. Our oldest daughter lives nearby, and our youngest daughter Laura lives with us. In fact, she is on TU with us as well. We are all scared about whats going to happen to him. All 3 kids (our son lives in Michigan with his wife)are worried for him and in shock. Just trying to find out as much as I can about dialysis, but there seems to be no way of knowing how disrupting and upsetting it will be till we go through it. Thanks again.
An excellent site to learn about dialysis is IHateDialysis.com. There are all sorts of forums about different modalities (including transplant) and a lot of folks hang out there. You will get some good into there. Take a peak.
Someone here recommend the site "I hate dialysis" and I want to thank them because it is going to be helpfull to me. My husband brokenpole has been to the surgeon and will have an ultrasound done on his arm next week to see about putting a fistula in so it can heal for him to have dialysis at a center. No one, not even our family dr has tried to help us get ready for this. We vaguely have an idea about what to expect. His nephrologist gave him a booklet, but its so generic its not very usefull. This site http://www.ihatedialysis.com/forum/ has been a lot of help as I have been reading through the forums. We are both scared and not sleeping very well trying to take it all in. Thanks guys
Now that I've had my transplant, I visit their transplant forum. I have found the folks caring and informative. Glad you found some help. I was on hemo for a year so feel free to ask me any questions too.
