Comment by snowangel66 on January 9, 2009 at 7:15pm

wow barb its strange that this would happen to your kidneys when you've only been diagnosed for a couple of years and have an amazing a1c, it actually makes me afraid for myself! lol I think you should always get a second opinion and act on the problem right away, don't worry too much about it until you completely know for sure :)

good luck!

Comment by Barbara on January 9, 2009 at 9:52pm

Yeah, I really can't believe it either, but as I was told by a friend, "There's no separate number list for normal adults and one's with CKD". I was also told (both on the site and through my friends) that if you have a family history of this (which I do indeed; father died of kidney failure while on dialysis waiting for a kidney and my aunt (his sister) played the same fate; both were type 1 diabetes too).

So, all I can do is waiting this long agonizing weekend wait until Monday rolls around so that I can start hitting the phone book and finding a doctor who doesn't need a referral to be seen.

Please think about me as I have been doing nothing but reading, reading and researching only to come up with the same answer...

Comment by Kristin on January 9, 2009 at 9:56pm

Hi Barb, I'm so sorry to hear about this... it is good that you are so proactive. I hope that you are able to find more answers about how serious this is and what you should do soon.

Have you tested your daughter's blood sugar? Does she show signs of diabetes as well?

Comment by Barbara on January 9, 2009 at 10:04pm

well, the doctor's wont send me because they say that every time she's ever had a UTI she has no sugar levels?! Besides that, she is one of the only ones out of the three that doesn't really show any obvious signs of diabetes.

I know that this week coming up will be a long one, but as soon as I find out what's wrong with me I'm going to start demanding (strongly) that they send her out to a kidney specialist as well. I know that both of my other children (middle and oldest) are diagnosed with border diabetes (?).

I'm just so scared right now with all of this and can only think of the worst.

Here's where I found my information too...

http://www.kidney.org/kidneydisease/ckd/knowGFR.cfm#chart

Comment by Sohair Abdel-Rahman on January 9, 2009 at 10:11pm

Barbara:
You are still in honey moon,the glomerular filtration rate increase early in diabetes if it is not well contolled then later it will decrease gradually ( if not controlled)
Forget it love,and send me the line to vote for you,still cannot get it.
Have a great time,well done with A+ grades.

Comment by landileigh on January 10, 2009 at 12:28pm

as someone with stage 3 CKD, forgetting it and just thinking "oh i'm in the honeymoon phase" is not correct. you can have CKD with or without diabetes. i had CKD for a long time before i ever had diabetes. I am sending you a PM with my email so that we can discuss this further.

Comment by Barbara on January 10, 2009 at 3:41pm

@ landileigh

Thanks and I received the email...I've replied and will await your reply too. Thanks again and as I said before, any bit of information would be grand. At this point my husband thinks it's another way of me being "hypochondriac" LOL (I think)...

Comment by Kaayle on January 5, 2011 at 9:43am

Have you gotten a second opinion yet? I would try three different doctors on this one and see what each of them say. Most Dr.'s would encourage this...

Comment by Barbara on January 5, 2011 at 9:49am

@Kaayle,

I've gone to about four different doctors over the years and they all have no idea what's going on. For almost a year now, I've also developed a swollen left leg and foot. If I take a warm shower, it gets extremely red, burns, and swells even more. They've thought and tested me for gout, but without the ongoing pain (which subsided about six months in) they can't really figure it out. They say gout can only be detected if the pain is there...

I've got so much going on and no insurance to pay, so I just deal with the sugar highs and lows, my constant kidney pain (and smell of amonia) and my swollen leg...which by the way--kills me because I can no longer wear sandles. I get imbarrassed because my left foot is sooo much bigger than the other.

Comment by Kaayle on January 5, 2011 at 10:18am

That is crazy! My cousins have been trying this out and swear by it... I'm not sure if it will help you in the swelling department but when it comes to balancing your sugar levels and such they swear by it... It's a book by Dr. Young called The PH Miracle for Diabetes. If you are trying to balance everything without insurance, it couldn't hurt to try. If you do decide to give it a go, please let me know what you think and your results... I noticed a big difference when I stick to veggies and no meat... unfortunately I enjoy my meats too much! LOL... So doing this diet consistently isn't in the card for me right now... But if I didn't have insurance, I would definitely look into it more so than I have thus far. Again, let me know if you do it or not... Also, I will keep my ears open for specialists that may be able to assist you. My prayers and heart are with you!

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