Life's Little Surprises

First off, I need to apologize to the staff of Diabetes Hands Foundation, who so graciously and generously gave me a scholarship to attend the AADE meeting last August -- I am very sorry for not having written anything about it, and I do want to talk about it a little, and also about the turns life has taken for me since then.

Last July, I started to just not feel well. Low energy, tired, out of sorts. In Aug. I went to AADE and got persuaded to give a presentation, because the woman who was supposed to give it had a misunderstanding with her boss, and although she sent her slides, she herself was unable to come. The presentation was on diabetes education for people with disabilities, and her presentation was on the deaf and hearing impaired. Well, it just happens that my master's degree is in that field, and education is education, so I gave the presentation, and it was well received. Then I participated in the Strategic Planning Meeting -- our fearless leader Manny was supposed to attend, but he was ill and couldn't make it.

Well, the second day, I was exhausted, running a fever, and my legs were swollen up like sausages. So I didn't attend much. I did staff the booth for a bit, and it was lovely to get to meet Desiree in person -- she's a perky, charming young woman. I also met Kelly Kunik, who was scouting the floor quite a bit -- that's the great part of these conferences.

After the conference, I spent a day with my long-time friend Ann Williams, who is a member of the board, and very passionate about meeting the educational needs of all people with diabetes. We enjoyed each other's company, and then it was homeward.

By the time I got home, my legs were really bothering me, and I was short of breath, and had a headache that wouldn't stop, so I went to my PCP, and she immediately sent me for a renal panel and a chest X-ray. I guess, because the first thing they think of when they see edema is heart and kidneys.

Well, the chest x-ray yielded a surprise -- my lungs are covered with minuscule spots, and she didn't know what they were, so she referred me to a pulmonologist. Then turns out that he isn't much worried about them, but will watch them to see if they change. I'm not worried either, because cancer doesn't present like that, and if they DO change or grow in the next 6 months, then we will look into it.

My cardio did an echo, and the result was that he said my heart is a little stiff, but not creating any problems at the moment, and he'll just keep a watch on it. He also gave me Lasix for the edema, but it's not particularly working. When I told the pulmonologist about that, he said that when the body doesn't get enough oxygen, it does tend to retain fluids, and diuretics don't work well. So he has scheduled me for a sleep study. Since I don't have a bed partner, I wouldn't know if I stop breathing or snort during sleep. The good part of the sleep study is that he's also giving me something for my restless legs, which is working well, for the first time in my life -- 66 years of untreated restless legs is a bit much to endure!

OK, now for the bad part. The renal panel came out showing stage 3 (out of 5) kidney failure. Not severe enough to need dialysis, and at this point, I don't even need to follow a kidney diet, but this makes it possible that those will become a reality in the future. That shakes me up, because I have enough problems with food because of a combination of being a picky eater, having an eating disorder, having diabetes, and now contemplating the possibility of having to limit my diet because of kidney disease.

I had been very proud of surviving 23 years of diabetes with NO complications, and here I am, smacked in the face. It's not a good feeling. So I'm hoping some of you will read this, and my wonderful, supportive friends here will once again do their magic.

Hey Natalie - i'm so sorry - both for the kidney problems and for the disappointment that you aren't turning out to be among the lucky who never have to face serious complications. If I can offer a little unsolicited and perhaps unwelcome advice, I would recommend following the kidney diet at least to some extent before you "must". It might help slow the progress of the disease and give you additional years of relatively good health.

A big hug and best wishes,


Natalie, I am sorry to hear this! You are always such a great support to everyone here, and I hope you know we are all here for you!! Please take care of yourself, and hang in there. Much love and hugs to you.

Natalie - Sorry to read this. We all hope that with effort and a good attitude that we might be lucky enough to avoid diabetes complications. But luck is just that, something unpredictable.

One of my healthy responses to set-backs like this is to learn all I can about what I face. Then try to do everything possible to minimize the progression. I'm sure keeping your BGs in check will help. Hopefully you'll get some down-to-earth peer info here that will help you.

It's always tough to face these things. Try to be gentle with yourself and don't get suckered into any self-blame or other non-productive mind games. Get some talk therapy, if you think you need it. Thank you for sharing your difficulties. Take care and know that we care for you here.

Wow, I'm sorry to hear this. I don't think I have anything to say that's of help. I hope that you are able to keep your kidneys as healthy as possible for as long as possible. Good luck, and hopefully those here who are living with kidney disease will have some good advice to offer.

Incidentally, I am also being evaluated for sleep apnea. I wake up occasionally feeling like I can't breathe, and I recently slept at my parents' house where my aunt said my breathing isn't right and I sound like I'm suffocating. So I can relate to that bit. I have also had problems with edema for years (which really bothers me because I'm only 33, though my heart and kidneys have been checked), so what your doctor said about edema and not getting enough oxygen is interesting.

Good luck!

Hi Nathalie, So sorry to hear of your problems! It's good that you don't have to follow any diet for the moment! I hope that it stays stable for a long time! Take care and keep connected!

hopefully it’s just high Creatinine because you’re not well and a false eGFR reading. Have they booked you in for a more definitive CKD testing?

This costs nothing and may or may not help, but I would try it with Kidney CKD
Dr. Bernstein (diabetes solutions) is well know and recommends 30g carbs, which is ketogenic and he said with normal BG he reversed his CKD like they do in mice

Lots of links to mice study

At 8:30 into the video

it’s a long page and a few good video’s on ketogenic diets

Oh my. A "stiff heart"...Whoa. Not any words I care to hear from a doc. What does it even mean?!...

But the kidney problems I get. My mom died of kidney failure in 2010, but guess what?: she was 89 and had kidney problems off and on since she was 15 years old.

I know, Dearheart. this is a difficult passage. But please keep us all in "the loop"....there are some things to do to stabilize such a diagnosis and slow the progression. I'd really like to be a crotchety Old Lady with you for a lot of years yet!

Wow!! Thanks for sharing both your report on the AADE and your story about your travails!

There's a dialysis place that opened near my house and they are booming. I had no idea that kidney disease was so common but apparently there's lots of it going on. I'm glad you're medically sophisticated as an untouted side affect of D and will be able to manage all of this well.

Thanks for sharing this. I attended AADE in 2013 and it was a bit of an eye opener. I found the discussions interesting as I talked with many of the educators. The members of AADE are an aging crowd and disturbingly many of them are themselves have diabetes and are overweight. And as I talked with educators about nutrition there is some real conflict in the ranks over things like diet and selling out to Pepsi. The conference was right next to Reading Market and every day ream of members would eat lunch there. It was amazing to see how many chose low carb and a number of them quite willingly shared their views on the subject.

I hope your health turns up. I think many of us struggle at times as we face challenges from our diabetes and we get older.

Hi Natalie. Your little surprises are certainly unpleasant ones. I wish you well, and have to add to the voices that are suggesting changing your diet little by little, starting right away. I know it's a pain to change your diet; I had to do just that when I developed Celiac Disease symptoms. It can be done, and you can do it!