Be Careful of Supplements & Remedies

 Sometimes, like most people with chronic illnesses, I get to feeling a little desperate about my health. I'll think that there must be something to help my kidneys heal or that I should be able to find something to help fight back against the effects of sarcoidosis. In addition to those things and battling depression, and getting older, I struggle to maintain a healthy weight. So I will often go searching out something - anything - to help with all of that. (I've even thought briefly of going back to smoking just to lose a few pounds.) And, then, every now and then, I get a reminder to be careful.

The other day, I saw this news headline: "Congressman’s Wife Died After Taking Herbal Remedy Marketed for Diabetes and Weight Loss".

Hold up. Hold up. What?

Yeah. Go read the entire article. In summary, she:

died from dehydration due to gastroenteritis — an inflammation of the stomach and intestines — that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner...

She was my age and, from photos, she appeared to be in much better physical shape than I am. 

It's very easy to get hopeful about finding a supplement or treatment that can help us look and feel better. Not many months ago, I actually bought a bottle of collagen peptides because I'd heard they could be useful for weight loss. And, of course, I'd also heard so much about the other benefits of collagen being good for skin, bones, muscles, hair, etc. Sounds great, right? I thought so until I realized that excessive intake can cause oxalate deposits. I try to limit foods and supplements high in oxalates. I even refer to a list of certain foods to monitor in order to protect my kidney function. There is one list I keep in my OneNote folder. But I was hyped about that collagen...

I got the same kind of hyped when I heard about Chitosan supplements. Chitosan is said to be possibly beneficial for lowering creatinine. Yeah, yeah, yeah. The thing is, I had trouble trying to find one without added calcium and phosphorous. When I did find one, the reviews from CKD sufferers were not encouraging. Some said their creatinine only went down by tiny amounts after weeks of taking a supplement. Some said that they couldn't deal with the side effect of terrible constipation after just a matter of days. So that is something I am going to have to talk about with my specialist. I think that this is the kind of supplement that I will want as a prescription. Too many supplements are not well-regulated if they are regulated at all. And we are talking about my kidneys here...

I'm not saying that every supplement is bad. For my own personal health, I do try to be careful of knowing as much as I can about any supplement. I always check with my GP, rheumatologist, and nephrologist before I get excited about any vitamin, supplement, or other "remedy".

Just understanding the nutrients, vitamins, and minerals in my basic food diet is complicated. When it comes to adding supplements, things can get really tricky.

Talk to your doctor or treatment team about adding anything - even vitamins - to your routine. I was taking a multivitamin for a few years and my doctor recently had me switch to a different kind. At this time, I don't need the excess iron that I was getting in this particular vitamin. Thankfully, I have an attentive medical care team watching my lab reports and they were paying attention as things were changing but they only know about the vitamins and supplements that I tell them about. So, I'm sure to add anything new.

These are the other lists on the same page such as...

After reading about this woman's death, I am even more determined to deal with my health more carefully. Sure, I still want to lose 20 pounds (I'm lying, y'all, I want to lose a lot more than that!) but I will be relying on exercise and willpower.

By the way, I still love and rely heavily on FREE resources such as the Cronometer app. I stepped back from the paid version but the free one is still a favorite. I use it daily. If you can afford to, the paid version is great and I like to donate to the project when I can.

There are a LOT more details than shown here

Be safe, be sensible, and don't give in to quick-fix trends. 

Peace

--Free

The Renal Diet is Working

 If I could say anything to anyone starting out with CKD issues, it would be this: "Be your own advocate. Do your own research. Ask questions until you understand the answers."

Even knowing about my CKD for a while, I didn't understand the full impact of diet and exercise until the past several months. My original nephrologist didn't tell me that eating a "healthy" diet wasn't the best thing for someone with CKD. He never explained lab results in layman's terms. And I didn't push for answers.

I had my latest appointment with my new nephrologist yesterday. Actually, she is my new nephrologist because my other one is out of the country for now. I will be seeing this lady from now on because the other one works with more critical patients and...

... I am currently doing great!

I had an ultrasound and new labs done last week and the results were outstanding. My filtration numbers are the best they've been in several months and I am at only 20% less function than a healthy person in my age range. My kidneys are a good size, shape, and texture. My urine is clear and protein-free. There is calcification, masses, or obstruction. (I'm reading from the results now and have no idea what most of this means except that it is all positive stuff!)

I discussed my diet with the doctor and she agreed that there is not enough information about the differences in a healthy diet for a "normal" person vs one with CKD. She loved the Cronometer app that I am using. She will be looking into it to see if it will be of use to others.

I went into this appointment absolutely terrified. The ultrasound is the first I have had since I was diagnosed. My biggest fear was that the results would show previously unknown damage.

This doctor also understood my concerns about the lack of diet information out there. She encourages me to keep doing what I am doing (except she says I can lighten up a bit on my food restrictions) and encouraged me to call with any questions or concerns.

I left this appointment almost floating. (With this Iowa humidity, I could have swum out the door.) I came home and immediately passed out into a nap. I haven't slept well since having the ultrasound and worrying about it. 

So this diet is working. And it's not difficult at all. I center my meals around a lot of pasta and chicken and white bread. Snacks are the cashew milk "ice cream" and popcorn (Boom Chicka is the best). I drink so much water that my bladder has gotten stronger. And my doctor has no problem with my 3 daily cups of instant espresso powder lattes. Of course, I use macadamia milk (which I've come to love) and I only add the smallest amount of chocolate.

Today was a good day. Today was an incredibly beautiful and blessed day. Now if only the humidity would go down... I am not playing when I say that the humidity is currently 90%. 

I left the house this morning with my hair looking fabulous. It was positively laid and slayed. By the time I went outside and ten steps to the car, I looked like I was wearing a chia pet for a hat. This Iowa weather does not come to play.

Right now, I am going to go have a coffee. I need it and I can have it.

Peace

--Free