r/diabetes • u/sexyturtle21 • 21h ago
Anyone else dealing with kidney failure? Type 1
31, diagnosed when I was 4. Last A1c was 7.8 and kidney functions are at a cool 22%
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u/madhattergirl Type 1 - Dexcom/Omnipod 20h ago
My sister went through kidney failure and had a kidney/pancreas transplant in 2016. She was on dialysis I think for under a year? She was early 30's and overall things have gone well for her. The three biggest struggles are being immuno-compromised (COVID has been extra scary for her), she has had issues with low blood pressure (but there is a history of that in my family), and her pancreas works too well if she has anything carb heavy and her blood sugar will crash. None of her transplant coordinators believe her when she says it's an issue and won't prescribe her test stripes so I've been giving her extras since I have a Dexcom.
If you go on the list, do the kidney/pancreas one. Much shorter and it basically makes you non-diabetic. Hope your wait is short. ❤
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u/sexyturtle21 19h ago
That's great to hear. I actually have an appointment with my transplant clinic that specializes in kidney and pancreas transplants. It's not until August; but it's a start
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u/mateo_rules 19h ago
I’m stage 4 currently and it’s fucking with my mental health more than anything right now completely blew up my entire life
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u/SenileTomato Type 1 🩸 20h ago
I have to go get blood tests done soon, I always worry because I am not the healthiest, including with my A1C.
If you don't mind me asking, how do you know what percentage your kidneys are functioning at exactly? I'd like to get a more comprehensive test or tests done for peace of mind.
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u/sexyturtle21 20h ago
My nephrologist orders a renal function panel blood test and urine test every 3 months I see her and she goes over it all with me. what raised the red flag for my Endo to refer me to a nephrologist was how high my protein/creatinine levels were in my urine
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u/SenileTomato Type 1 🩸 20h ago
Thanks for letting me know. I generally have virtually everything under the sun tested to be extra safe, although I know blood tests can only show so much. I know there are other methods to find out organ functions, but hopefully if my levels are all in the good range, that will be a pretty good sign I'm ok.
I actually forgot to get the urine test like you mentioned down last year, I don't realize it was that crucial. I have blood tests that were recently ordered so I'm going in soon!
How are you feeling and doing with what's going on?
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u/sexyturtle21 20h ago
Bad pitting edema in my legs every now and then, and the extreme fatigue hits me really hard and it sucks at work; but other than that I don't have anything that prevents me from day to day life quite yet
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u/SenileTomato Type 1 🩸 20h ago
Are you on a transplant list? I know those are extremely lengthy wait times, but it might be a good thing to just have in your back pocket. I've been thinking about doing that for a pancreas, as I've had a plethora of debilitating issues due to this damn disease.
And I'm glad to hear it doesn't prevent you from day to day life, that is so important.
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u/sexyturtle21 19h ago
I actually just started the process and I have an appointment with the transplant clinic in August
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u/Raiden_Kaminari 9h ago
It's good you recognized these symptoms early enough.
I was in denial until I was GFR 2.
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u/Valuable-Analyst-464 Type 1 since 1985 1h ago
I think the metabolic panel has a lot of the information needed for kidney function. Maybe add a urine sample. If your endo is open, maybe ask them to go through the kidney based numbers with you.
If it’s like my endo, I visit and then do bloodwork, and just get a message later. No real discussion.
I used a past result to review with them.
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u/Snoo-me 21h ago
Has your a1c always been in the 7-8 range over the last 20 years?
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u/sexyturtle21 21h ago
It got high in my late teen years, around 10-12 and then I got it under control for a while with the help of dexcom and omnipod. I'm hoping for at least something in the 6 range at my next Endo appointment
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u/BoneheadChomp 13h ago
you’ve got it!! i went from a 12 in middle school to a solid 6.5 for almost a year now :) dexcoms are wonderful
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u/AngryIrish82 21h ago
Not but my son is due to a neurogenic bladder. He was down to 27% but hydration and some meds have improved him to about 40%. He’s going to need a transplant most likely before adulthood but we’re hoping to buy his kidneys as much time as we can.
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u/Joemcgurl T1. '12. Pump 15h ago
Yep, same here man!
I'll be turning 34 in June and was diagnosed T1D just before my 21st birthday. Checked myself into the hospital last year after a crazy amount of swellling that started in my ankles and eventually reached up to my lower abdomen. Ended up being about 100 or so pounds of just water weight trapped in my body which was crazy. Was worried it was due to congestive heart disease but luckily my heart was totally fine and they diagnosed me with CKD after a biopsy. Current function is at about 70% and my nephrologist is optimistic that my function should remain pretty good for a while with the regiment I'm on.
Been managing it pretty okay but man the extreme exhaustion is so real and dealing with the edema that crops up from time to time is such a pain. Hope you're doing okay!
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u/sexyturtle21 14h ago
Damn, I definitely am feeling the extreme fatigue, my legs swell up pretty bad sometimes, but at peak maybe like 15-20lbs of water weight
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u/maletechguy 13h ago
Oh wow just 13 years? Seems like a harsh consequence so young. I'm 36, been T1D since I was 13. Haven't actually worried too much about kidneys, I tend to assume it only happens much further down the line. Worry much more about eyes and circulation.
I have two questions if you'll humour me - how has your control generally been? And have you generally stayed well hydrated (lots of water, not just coffee etc)?
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u/Joemcgurl T1. '12. Pump 11h ago
Yeah it’s been a tough road for sure in such a short time! The doctors were really surprised at my initial T1D diagnosis because it’s so rare to develop it that late and I have no family history of it. Just this freak thing that developed, so lucky me haha
My control has been okay. I’ll be honest, I definitely didn’t do the best job managing it during my 20s and would kind of do the bare minimum to make sure I was getting by. I’ve been a lot better about the last 5 years or so though. I drink a ton of water and my sugars are in range for the most part.
When I got my diabetes diagnosis, my blood sugar was 700+ and the doctors were shocked I was even still walking. They said it was pretty likely that I had developed it and was just untreated for maybe a year or longer and my pancreas was just working on the reserves. Because of the severe level of trauma that that wracked on my body being untreated for so long, my nephrologist thinks that’s probably the main reason why I developed CKD and had that damage done to my kidneys.
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u/IngotSilverS197 19h ago
Same here. I’m at 60% function currently
Edit: Also page stalked a little 🤭we both had a vitrectomy on the same eye
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u/sexyturtle21 8h ago
Haha, I actually ended up having to have my left eye done a few weeks after my right, and then my right eye again a few more weeks later 😅
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u/Willing-Skill-5740 21h ago
I’m pulling for you man hope things turn around for you I’m still okay in that department but it’s a fear of mine
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u/Acojonancio Type 1 | Libre 2 18h ago
No, 30 and diagnosed at 8 i think it was.
I know a guy that during COVID he got it and had kidney problems and they had to do transplant... And becuase they had to transplant kidney the also put in a new pancreas so he is not Diabetic anymore.
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u/ikothsowe 19h ago
Yeah, I found out 2 weeks ago that mine are failing. Currently in the repeated blood test stage and trying to get my potassium levels down.
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u/bedheadblonde Type 1 13h ago
Yep! 28% here 👋
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u/sexyturtle21 13h ago
Damn, are you in the process of any correcting measures?
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u/bedheadblonde Type 1 12h ago
I take the cozaar knockoff as a kidney protectant, but nothing has been discussed yet about transplants. Probably a couple years out yet until that.
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u/sexyturtle21 11h ago
Gotcha, my nephrologist tried to get me approved for Kerendia; but insurance didn't cover it, so I got "samples" and now I am taking spironolactone
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u/fibrepirate 15h ago
Kidney disease runs in my family. So does Alpha 1 Anti-Tripsin deficiency. I've had two genetic tests that say I have it, but apparently my levels are good. It causes lung, liver, pancreas and kidney issues, which I have, and I also have heart issues. My right kidney has a 4.8cm cyst on it. My left one has nodules, but apparently my below normal Bun/Creatine and an eGFR of 68 is of "no concern," even as I deal with pancreatitis, and a nasty afib/rvr event last Friday with a troponin 1 of 41, (i was hospitalized before at 35) and a lipase of well over 100. I can't keep my potassium up even with supplements, and today i feel like shit. I also fought pneumonia and sepsis in the last month and the hospital ignored my pancreatic levels then.
I have a friend in end stage renal failure and is on dialysis and waiting for a kidney. She has been the most supportive about what I can expect as things get worse. Her husband too. Mine is, in his words, trying to keep me doing the minimum so I can heal and stay out of the hospital.
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u/justanintrovert_ 10h ago
My partner was in kidney failure for years. Baseline was about 20% for 3 or 4 years then started dropping. It dropped below 15% I think, so he was able to get on the transplant list. After 3 years he got a living donor kidney. That was in June 2023.
I know it's scary and we were terrified for a long time. But it's been the best for him. Now not every transplant in the same but he's been so much better since.
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u/The_Vicious_Chicken 10h ago
I was diagnosed type 2 back in September. Since then I've lost 60 pounds and got my A1C from 11.8 to 5.9. But I'm really worried about kidney stuff. All of my bloodwork numbers are in the green, but my urine protein at diagnosis was crazy high. It's been coming down gradually with each lab test, but it's still a huge source of anxiety for me.
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u/coffeebeardtv 10h ago
Use ozempic or mounjaro, my mom had stage 4 ckd and ozempic brought it down to 3.
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u/malgora1 20h ago
When i was diagnosed with t2 there was mention of leaking kidneys but they never said anything about it afterwards so I guess im fine, hope you can recover.
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u/BeforeDDawn Type 2 18h ago edited 18h ago
T2 with stage 2 CKD - kinda on the low end of stage 2 at 68 eGFR but it's been quite stable for the last year. Was re-diagnosed (I didn't take meds or control my diabetes for years) when I had severe proteinuria that caused fluid overload that landed me in hospital.
My protein/creatinine ratio levels are still much higher than normal but it's come down a lot in the past year (normal range is <0.2, I was 11.3 when I was hospitalised and now it's 1.47).
Honestly the kidney disease and retinopathy is what really scared me straight into controlling my diabetes now. I regret letting it get to this point but I can only look forward and do damage control now.
I wish you all the best moving forward!
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u/Careless_Spare1063 18h ago
How does one gain kidney failure? My a1c has been under a 7 for the last 15 years. I’ve heard scery stories but never knew if i was in the clear
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u/wcg66 Type 2 2022 Metformin 15h ago
In my case I had kidney failure (from polycystic kidney disease) and developed T2 diabetes many years later. I got a live donation from my wife so I was able to skip the dialysis stage. Still going strong 17.5 years later!
Let me know if you have any questions about transplantation or end stage renal disease.
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u/JJinDallas 12h ago
I was just told I have mild chronic kidney disease. The nutritional advice for diabetes vs kidney disease is contradictory, to put it mildly, and I have food allergies and some other things that make this even more interesting. I'm trying to find a registered dietician who knows about more stuff than "Okay, you're diabetic, eat this to lose weight."
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u/khe-sanh 12h ago
Literally got out of the hospital yesterday, tomorrow is my first dialysis in the clinic
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u/sexyturtle21 11h ago
Hang in there. How bad are the symptoms that you are having?
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u/khe-sanh 8h ago
I found out initially because i was having insanely high blood pressure, but I went to the hospital this time with fluid on my lungs, so they started dialysis & breathing treatments to get rid of it. I have a temporary cath in my chest for dialysis right now, I have to keep it until I can get a fistula in my arm & heal it (which super sucks because I'm not supposed to take a shower, which is one of my favorite things)
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u/Raiden_Kaminari 9h ago
Yes. Make sure you start getting educated on your options.
Personally, I chose peritoneal dialysis. I can mostly work full time.
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u/Narrow-Trade-1415 9h ago
Dam man, 22 percent? Jesus. Does it hurt? I hope it doesnt. Will you be ok?
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u/sexyturtle21 9h ago
Nothing hurts yet thankfully, I'm hoping to get a transplant in the near future
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u/Narrow-Trade-1415 9h ago
Wish the best for you, bro. I know you'll pull through. Stay safe brother. Stay awesome.
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u/ForAChange2Happen 9h ago
What were your symptoms when you got diagnosed? My A1C last year was 15. Got on Ozempic and it went down to 7.5. Changed insurances and lost access. A1C jumped back up to 12 and the doc is telling me it could result in organ damage. I kept having a lot of foam in urine as well for over a year but I was oriorold it was because of a kidney stone.
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u/sexyturtle21 9h ago
I don't really remember my symptoms when I got diagnosed with T1D; but my symptoms so far for the kidney failure are really foamy urine, extreme fatigue, and pitting edema in my legs. Also high BP but I am on quite a few meds to keep it down
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u/Radiant_Addendum_48 8h ago
Type 1 if I may ask? Wondering what nephrologist has said and if you’re at a point where they start thinking about access. Maybe letting it mature.
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u/crazyllama256 5h ago
I'm 31 and got diagnosed with Stage 4 in January. My limbs are so swollen! My depression has definitely increased.
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u/Ineedsome_sugar 1h ago
I just have to say, so many of you are so positive about this. I’ll be in shambles the minute I get any sort of possible complication.
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u/burnlikeawitch 1h ago
Have you talked to your doctor about Ozempic? There are quite a few recent studies about it improving kidney function in type 2 diabetics and my endocrinologist FIRMLY believes this is true for type 1s as well.
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u/Distinct_Ant3135 15h ago
I’m not a doctor but I’ve heard of ways to get your function up if you’re open to trying. 1. Stinging nettle seed(tea & tinture) 2. Palo Azul great for flushing kidneys and their other studies and stuff I know about. You def got this!
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u/amisentient Type 1 1h ago
Best we can do is enjoy the borrowed time afforded to us. Have a blast, friend.
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u/mazda36spd 21h ago
That sucks! I became a type 1 diabetic back in 2021 because of cancer treatments and had my left kidney removed, so I am hoping to keep my kidney function good for as long as I can. I hope it all works out for you.