Chitosan & This CKD

 Recently, I made a post about being careful of supplements. Most of us with a chronic disease will often feel desperate enough to try every new treatment or supplement we hear about. Ironically, before and after I was writing that post, I heard of a new one.

Chitosan is:

"a natural polycationic linear polysaccharide derived from chitin" (source)

Chitin is (according to the same source):

"Chitin is the structural element in the exoskeleton of insects, crustaceans (mainly shrimps and crabs)..." 

What got me interested in chitosan was hearing from someone that it's supposed to be good for kidney health. Of course, I then did a search and read that it might have a "beneficial effect on renal function". According to a clinical trial, 

"Significant reductions in urea and creatinine levels in serum were observed after 4 weeks of chitosan ingestion. The feeling of physical strength, the appetite and the sleep of patients in the treatment group had improved significantly after 12 weeks of ingestion, compared with those of patients in the control group. During the treatment period, no clinically problematic symptoms were observed. These data suggest that chitosan might be effective treatment for renal failure patients, although the mechanism of the effect should be investigated further." (source) [my emphasis]

 NOTE: Keep in mind that I have no medical training. Do not rely on my laymen's research. Only get medical advice from professionals. That said, I myself am a sarcoidosis and CKD patient. It took me several days to find and even attempt to understand what I was reading during this info search. It's a shame that I (as a patient) have to even do this kind of research but my mantra is to be my own advocate. That's a real problem sometimes due to my cognitive issues but such is the current health care system.

(Source)
The 3 I love

Barring any serious problems with lab tests, I see my nephrologist around every 3.5 months and I get labs with my Remicade infusions every 7 weeks. I was in between these appointments when I heard about chitosan and decided to try it for at least a couple of weeks.

When I looked for a chitosan supplement, I noticed that most of them include as much as 500mg of chromium, 200mg of calcium, and 150-200mg of phosphorous. I know that I'm not to take any additional calcium and phosphorous (I keep a list of things my doctor has warned me about) so I found a brand that didn't include those two things. That was tricky but I found one that was fairly affordable to boot.

Reading reviews from several sources, I got the impression that the brand I was going to try either did nothing for the user or - and this is horrifying - caused bloating and constipation. Apparently, it only took most users a couple of days to experience the bloating and constipation. Users who had little or no results based on labs realized the lack of effect within 1 to 2 months of use.

Okay then.

I decided that I would try the supplement for at least 2 weeks. I would be having infusion labs done within a week and a half of starting. Of course, I'd stop if I had any of the more uncomfortable side effects. 

(source)

The capsules are the standard size for filled gelatin caps. There is a very slight fishy taste to the capsules if let them melt the least little bit on my tongue. The odor didn't last and I had no aftertaste (or smell) from them.

The suggested use of the brand I have is to "take 3 capsules immediately before the two main meals of the day", not to exceed 6 capsules per day. The capsules are to be taken at least 4 hours before or after taking any fat-soluble vitamins (which are vitamins A, D, E, and K). I learned that there is a reason for that and it leads to why most non-CKD people take the supplement.

Chitosan blocks dietary fat absorbtion.

Ahh...

The thing is, while I am hoping that the chitosan will help with my CKD, I wouldn't count on it for weight loss. According to this:

"Analyses involving all trials indicated that chitosan preparations result in a small but statistically significant greater reduction in body weight..." (my emphasis)

(source)

So, yeah. I don't remember from reading all those reviews that I waded through whether or not people had weight loss success with the supplement.

The good news for me is that, after 3 days of taking these capsules, I have not had any problems with bloating or constipation. I suffer from chronic constipation and I got some relief from it. Go figure.

When I have my labs done and meet with the nephrologist, I will be able to do an update on how this is all going. It might be that the doctor has me stop taking the supplement. Maybe there won't be any "Significant reductions in urea and creatinine levels" but I can hope, can't I?

Peace

--Free

 It's been a while since I have posted here - or on any of my blogs. I am dealing with some depression stronger than usual. 

I wanted to do a little update to apologize and say that I will be back posting when things get better. In the meantime, here is a little humor to brighten y'alls day.

And this one to remind you of something important: And the most important thing of all: I remind myself every day that God's got this. 

And the most important thing: 

Even if the disease(s) kills me, my soul is already safe. 

Peace

--Free

**All images are from a basic search & I own no copyrights**

After the Nephrologist

After my panic and stress over being staged at 3b, I now feel such relief.

I saw the nephrologist yesterday and I had worked myself up so that I was almost weeping by the time he came into the exam room. The poor nurse who had to take my vitals didn't know what to do with me but be as nice as possible without calling the psych ward.

The doctor immediately put me at ease. First, he taught me how to say his name. He is Indian but his name isn't too difficult for my Amerian tongue. I'm sure his introduction was meant to be a stress-reducer. It worked. He had me smiling about 3 minutes into the appointment. 

I went very prepared. I had the printouts of my Cronometer nutrient diary, a copy of my latest labs, and a list of questions written out in a tiny notepad. He already had my labs and he only glanced at the Cronometer printout. He moved my pen and notepad to the side. He then explained that I didn't need to be as strict with my diet as I've been. He also warned me that stress is not good for my health in general.

By the time I left the appointment, I was assured that with his care and some dietary cautions - not my manic and obsessive food-tracking - I won't need to worry about dialysis for another 20 to 25 years. He said that we are going to work together as a team. We. I like that. Between him watching over my kidney function and my other doctors monitoring my neurosarcoidosis, I am going to be alright.

I'm not sure what I was most relieved about: not having to forever give up yogurt and collard greens or not having to think about being hooked up to a machine 3 times a week.

Of course, I do need to be careful about food. I just don't have to be as self-depriving as I've been. I need to drink a lot of water, keep getting moderate exercise, and stay on top of my meds.

I don't think I've thanked the Lord Jesus so much since I recovered from the aphasia when I first got this dang disease.

Anyway. 

I will be going back for a follow-up appointment in about 6 weeks and I will, of course, have regular urinalysis and blood checks. At the most, I might have to have an ultrasound down the road or maybe a kidney biopsy. And that is only because this neurosarc is crazy and unpredictable.

When I walked out to the car, my brother and SIL could tell from my expression that things had gone well. I probably had worried them sick with all my worrying. 

Yesterday was such a good day. Today is a good day. I will savor this.

The thing is, even though the doctor has given me permission to ease up on my dietary restrictions, I've kind of gotten used to eating the way I have been. If I am completely honest, the only thing I really miss is having my homemade pinto beans with ground beef and cornbread. 

I'm so thankful and I really appreciate so much the folks in the subreddit for CKD. Everyone there is so sharing and supportive of each other. I'm also still in love with this Cronometer app. I'm keeping that, for real.

So that's my good news. In spite of the neurosarcoidosis and all its annoyances, I'm happy today. I'm going to go and have a second cup of coffee with some brown sugar the cashew milk I discovered. Tonight, I might make my beans and cornbread for the week.

Peace

--Free

I've Been Staged at 3b

 I'm feeling a little gut-punched. Finally got to meet my new rheumatologist (my old one transferred out of town) and she's great. However, I wasn't thrilled after the first appointment. She did labs and staged my CKD at 3b.

What???

I'm thankful that I was doing my own research about foods and such. In just the few weeks since my scary labs (where my eGFR was something like 27), things improved somewhat with the new labs. My eGFR is up to 32.1. Also, my creatinine is down - just by a little, but still.

I had a full day of deep depression. I couldn't think or eat or sleep. Right now, I'm in a "this is my life now" mode. I just want to do what I can to keep things as they are or better. No more getting worse, if I can help it.

And I am mad. I'm mad at myself for not getting serious about this before now. I'm mad at the kidney doctors from the past for not helping me to realize I needed to be more serious. I didn't even really understand the different stages until I did my own research. I was still taking aspirin every day. I didn't know that aspirin isn't great for my kidneys. I already mentioned how I didn't know how bad some "healthy" foods are for CKD patients.

At any rate, this is my health - not my docs - so I am going to be asking so many more questions and demanding more information. I definitely want a referral to a dietician now. 

This is so frustrating.

Anyway. Here I am. CKD 3b. As if this damn sarcoidosis and its treatments haven't touched on too many other parts of my health: my brain function, my skin, my teeth, my bones. Every time I adjust to one thing, something else pops up. 

I'm trying hard to remain more grateful for the good than I am focused on the bad. I'm thankful for my faith and how it sustains me. I'm thankful for my amazing family. Even the sister of my late best friend has become part of my support system. And I am thankful for the good doctors - the ones who are blunt and honest and don't hold back. 

I guess I just needed to vent. I'll be back to whine and fuss some more after I see the nephrologist next week...

Peace

--Free

Mistakes Were Made...

Lab Tests & the Fear Factor

I've been aware of my kidney issue for at least 7 years. Before it was a matter of "keeping an eye on things". When my labs started to look good, I only needed to see a nephrologist if things went wonky again. Well, things were pretty good for a while, then up-and-down-iffy for another little while, then they started looking more-iffy-than-not.

And there I was, feeling a little panicked and scrambling to get on top of my diet on my own until I could get back in to see a nephrologist. 

Why Guidance & Research Is Important

Now here starts the story of how I was probably doing more damage than good - without meaning to. I want to encourage other people to do their research before they go off trying to solve a problem they might not understand. That's what I did. 

So my lab numbers were not looking good at all. I wanted to take charge of putting things right.

The first thing was to go through my kitchen fridge and pantry to see what I was working with. Answer: Too much healthy food.

Not All “Healthy” Food Is for Everyone

You read that right. I had way too many of the things that might be healthy for most people while being a little dangerous for me. And that happened because I didn't do my research.

Last year, when I took the initiative to "eat healthier" just because that's what we should all be doing, I switched out my whole way of preparing and eating meals.

I gave up processed meats - no more delicious garlic roasted deli turkey of smoked ham. I gave up (for the most part) my beloved smoked neckbones and smoked turkey legs and wings. I stopped drinking anything that wasn't coffee or water or fruit juice. I gave up orange juice because I'd been warned that that was a no-no. I cut back on eating cheese.

SO healthy - for most folks

My new diet consisted of lots of plain Greek yogurt (I'd drizzle a tablespoon of natural honey on it), fresh collard greens (minus the smoked neckbones or turkey and cooked with olive oil instead of "drippings"), and lots of spinach and sweet potatoes. I started eating a lot of shrimp and salmon (going damn near into debt to do so). I stocked up on bags of frozen mixed berries to blend into chia and flaxseed smoothies. 

I was doing so well (and actually enjoying it) that my family got me a bread machine for Christmas. I was making whole grain bread. I made bread with raisins, bread with sesame seeds and pine nuts,  bread loaded up with flax and sunflower seeds.

This list here should
come with a warning!

My new favorite "comfort sandwich" was toasted whole wheat bread with avocado, sweet onions, tomatoes, with a smattering of flaxseed and a tiny bit of mayo.

Further in, I started swapping out my sugary-sweet coffee creamers for half-and-half or plain Coffee-Mate. If I was not feeling well or just more tired than usual, I would whip up some bullet-proof coffee - using some grass-fed butter in place of coconut oil or anything else. I even found ways to, at times, drink my coffee black.

When Greens Can Be Mean (to your kidneys, that is)

My most loved collard greens (and many other leafy greens) are apparently "rich in potassium". I could Google that phrase and get millions of verbatim results. 

Now, at this point, I have not met with the nephrologist or a dietician yet. It's possible that I don't have to cut back on my collards and their friends. It's possible - but I don't want to chance it.

When trying to research what I should or shouldn't be eating with CKD, I went on a Googling marathon. I searched for "CKD-friendly foods", "foods safe for the CKD diet", "is ____ bad/good for the CDK diet", etc.

The results were confusing. There is quite a bit of contradictory information out there. There was no way I could come up with a decent grocery list. I had information overload and my brain couldn't hang. 

Then I tried just coming up with the specific nutrients and ingredients to watch for. What I found is that all of us - CKD'd or not - are getting way too much of certain possibly harmful things in our diets. 

But back to me. What could I use to come up with a grocery list and eating plan?

The Big Three

I decided there are 3 main things to monitor in my diet:

1. Sodium
2. Potassium
3. Phosphorus

Do some research on how those 3 things can affect CKD'd people. I was rather shook...

All that "healthy" food I was putting on my credit cards? Yeah, most of that was potential trouble for me.

Where the Big Three Hide

My problem is not being able to adequately track the Big Three in my diet - at least, not from reading nutrition labels. First of all, labels can be tricky and confusing. I think that, in some cases, they are meant to be.

What I needed, I realized, was help. There are a ton of apps and programs out there to help track your diet and fitness and blah-blah-blah. I needed something to not only track the Big Three but to find them in my foods.

by the way, there are things on the "Enjoy" part

of this chart that I have to avoid for other reasons:

potassium in bananas; grapefruit messes with BP meds; etc.

Just about everything that I LOVE is on the no-no list.

Thankfully, I found an app that does help me track and visualize the Big Three - along with a bunch of other stuff. Also good is that I can use the app on both my phone and computer. 

Cronometer (and, no, I'm not being sponsored)

In the past, I have used My Fitness Pal and a couple other apps - all really, really good. I even played around with the basic version of Cronometer back when I was just trying to lose weight. What I didn't like about it then is what I love about it now: it goes into a lot of detail.

I will probably do a separate post on Cronometer. For now, go check it out for your phone (Android and iOS) or online. I am paying (just under $10 a month with tax included) for the Gold Plan. I cut out another subscription I had in order to the money toward Cronometer. This is my health we are talking about here, right?

Not only can I track my nutrition in high detail, but I can print out reports to share with my doctors. There is also a way to let your medical team sign into your information (?) or something like that. I haven't gotten to that point yet. 

In case I don't do a post about the app, let me share this photo of the different plans.

So What Now?

Currently, I have an upcoming appointment with the nephrologist. I should have a better idea of my situation after that. I will keep you posted as I can.

Peace

--Free

My Starter Grocery List

 I don't know what changes my doctor(s) will make to this list - especially after I see the nephrologist. For now, I am just pleased to have a list of foods to shop for groceries from. It's designed to keep my Big Three numbers down to safe levels. Here goes:

• House Foods Tofu, extra firm  - entire 16-ounce container with sodium (SOD) = 50mg; potassium (POT) = 470mg

• Silk Oat Yeah Oat Milk Vanilla Creamer - 3 Tbl. with SOD= 45mg

• Fremont Fish Market Tilapia 4 servings per pack each serving with SOD= 30.5mg; POT= 7340.13mg

• Fremont Fish Market Flounder Fillets 4 servings pr pack each serving with SOD = 270.07mg; POT = 189.84mg

• Bake Shop Lemon Sliced Loaf Cake - 10 slices per pack each slice with SOD = 190mg; POT = 0.06mg

• Aldi's Atlantic Salmon (never frozen!) - entire 16-ounce container with SOD = 240mg. 

Okay, it's just the start of a grocery list, but it is a start. That's better than what I had a couple of weeks ago.

Today, I made some tofu bites seasoned with a little bit of sea salt and breaded with some ground-up panko crumbs. I ate the crispy little nibbles with a tablespoon of ketchup. I have to admit, I have always liked fixing tofu this way so this was a satisfying meal. I did not miss any actual meat and tofu always fills me up.

Here is what my grocery haul looked like this week:

And... it's all CKD healthy

Not bad. I have enough food to last for at least 3 weeks and, to be honest, my bill was lower than when I was eating "healthy" before. I paid under $26, not including tax and tip.

As for all that Greek yogurt I still have in my fridge... I guess I can indulge every now and again. I will ask the doctor about that for future grocery shopping. My plan until then is to enjoy a cup of yogurt with a bit of honey about once every weekend. It will be the reward I give myself for being so good the rest of the time.

I loved the tofu nibbles enough that I will be eating more again in the next few days.

The disposable plate is clean but the design is fading off
the plastic! LOL

By the way, I highly recommend that anyone with CKD - or caring for someone with CKD  join the subreddit r/kidneydisease. It's a bunch of smart and sharing individuals who lack the annoying snark of a lot of folks in most Reddit subs.

Peace & wellbeing

--Free

Welcome!

 My other blogs:

• FreeBeingFree
• FreeandFaith
• LottaLaughs

are where I post about my "normal" life. I wanted a place to post about my life dealing with CKD (and my sarcoidosis). 

There isn't a lot out there as I start trying to live with renal problems. When I just started trying to put together a meal-prep diet, I realized how overlooked the whole CKD issue is. I can find a lot of foods, beverages, and information resources for 

• Weight loss
• Diabetes
• High blood pressure
• Keto
• Gluten intolerance
• Vegetarian & vegan lifestyles

Go try to find things for a renal diet and you might not hear crickets but it gets real quiet. And expensive.

There are no super-simple meals plans or very many meal delivery services. Nutrition labels don't always show the Big Three - Sodium, Potassium, Phosphorus - or at least, they sometimes hide those things.

If you try to self-educate, there is quite a bit of contradictory information - about which foods to avoid or indulge in, about nutritional levels, etc.

What I will do here on this blog is share my experience. I can't offer any medical information or even advice - because I'm not, you know, a medical professional. What I will share is my meal plans and grocery items, etc. I will share any resources that I find useful. Oh, and there will be the random ranting and raving.

Peace

--Free