I went to see my Endo today hoping for some good news insted of the usual bad news I get. Well insted i get told i have ACR leakage (For those who dont know has to do with your kidneys.) Then he tells me it can very quickly turn into kidney failur but not how quickly. Seeing as only 3 months ago i didnt have this i think quickly. I called my mom and quickly broke down exspecialy when she told me my aunt has Polycystic kidney disease. I know he said its treatable if i can just get my sugars back under tight control but he also said it mite not work and ill have to go on medications for it. But im scared of the one side afect of the medication causeing birth defects in babys. All of this has scared the crap out of me.
im sorry that this is happening 2 u and i hope you get better
Hi Daniella,
I felt really bad for you when I first read this, then I noticed that you look very young, and your profile says that you have only had diabetes since last year? Okay, I will be the first to admit that I am NOT a doctor, but, I think it's entirely possible your doctor was trying to scare you, or misread your test or SOMETHING. I cannot believe that you have early stage kidney disease after only a year! I've had T1 for 24 years, had 2 kids, (one over 11 pounds) and spent the first 15 years just taking 2 shots a day and pretty much ignoring my diabetes, and I don't have kidney issues. Don't get me wrong, I am NOT advocating ignoring diabetes and sticking your head in the sand at all! But I would really get a second opinion. I once talked to my kids pediatrician about in a non-chalant way about how I "knew" I had probably done damage to my body (after maybe 6 years at that point), but he immediately got very annoyed and told me that after such a short time that I could not have done any irreversible damage. Once, within a year of my diagnosis I noticed one of my toes was numb on one side, and I had a doctor tell me that it could be nerve damage from diabetes. Another doctor told me that there was "no way" I had nerve damage after a year, then I started to pay attention and realized my ski boots were way too tight. If this kidney test is based on finding protein in your urine, there cold be lots of other reasons for that, including menstration, recent weight loss, high protein diets, etc. Talk to another doctor. Not all doctors are created equal. But take good care of yourself even if there is nothing wrong!
Cindy
hi daniella-
first of all, it sounds like you need to talk to your endo again about your concerns. it doesn't sound like he answered all of your questions.
what did he say you had? are your kidneys spilling protein? if that's the case, then that's not abnormal at all! i've been on medication for my protein spillage for a long time, with no bad affects. as far as birth defects, as long as you stop the meds before you try to get pregnant, you should be fine.
and cindy's right. if your endo doesn't answer your questions or you don't feel right about what's happening, then i'd get a second opinion.
good luck!
I'm so sorry to hear this. I actually just got my first complication news on Tuesday (retinopathy). It's never easy to hear, I broke down, too. Hopefully you and I will both get through this and come out as stronger, more diligent diabetics. Best of luck.
Hey there-
I've had stage 1 since I was 14 years old and I'm 30 now - I was diagnosed at 7. I started spill protein about 8 years ago and they put me on ACE inhibitors to protect my kidneys. I was on the ACE inhibitors for 2 years and worked w/ a nutritionist to decrease my protein intake and then they took me off the ACE inhibitors b/c my kidneys weren't spilling any more. I do a 24 urine test twice a year just to make sure all is ok. And yesterday, I went to to pregnancy clinic for people with diabetes and they reviewed all my recent labs and say I'm in good shape to carry a baby. So in my opinion, I think you need to speak w/ a kidney specialist and also work w/ a nutrionist. Sometimes doctors lack 'bed-side manner' and things they say can be rough. I would make another appt and ask some more questions. Good luck !!
I agree with Cindy - that seems really fishy to me. Maybe make an appointment with another endo, or contact your endo back and ask for more details. I hope you get to the bottom of this!
Dylan
I've also taken ACE inhibitors for about 7 years. Since taking them I'm no longer spilling protein and kidney function is fine.
Are you expecting a baby? Unless you're planning to get pregnant right away, I would take the ACE inhibitors. I had an unexpected pregnancy while taking them and just went off them quickly when I found out I was expecting. My son is 5 now, totally normal (though he is kind of sassy and opinionated,,, not sure where he gets that from).
Daniella-
First things first, YOU ARE NOT ALONE!!! I had to remind myself of that when I FINALLY decided to take the actions needed to see what damage I had done to my body after about 14 years of not taking care of it at all. (Only took my long acting insulin to prevent me throwing up in the morning from highs, literally never correted and never tested). I went in and found out that I didn't have any present complications showing. It's been 3 years now that I have been on the pump and gradually over that 3 years I started taking better care. Just this last month I went to an eye specialist and found out I have stage 2 retinopathy, I freaked out and thought for sure I'd be going blind just as my Mom warned me could happen. But then I start researching and also find support and strength and confidence in this site and reading that LOTS of people have been through this too and have many success stories! At one point in time they thought my kidneys were spilling proteins but after a re-check in was confirmed to be negative. ALWAYS, ALWAYS, ALWAYS seek a second opinion when it comes to major things like this. It won't hurt anything to be sure that your doctor is on spot with his tests and facts. And you never know on the kids part, I always thought for sure I wouldn't be able to have kids, I recently spoke with my Endo and he said there should be no problems, even with my history. Don't give up!!! Push yourself to do better and if you believe in prayer, pray.
Cheer up! I hope that helps you a little. And I'm sure I can speak for all of us...we are all here any time if you need us! We're each others support team!
-Nikki
Type 1 since 1992, at age 6. Pumping since 2008, CGM as of today!!