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

Bracing for the Nephrologist...

 The appointment that I am both dreading and looking forward to is coming up fast. The good Lord willing, I will be seeing the nephrologist on the 4th - just about a fortnight away...

I'm nervous because I am really worried about what the doc could have to say. But I'm kind of ready - ready to hear whatever, ready to know where I'm at, ready to know what I can do from this point on.

It's only been about 2 weeks of eating what I hope are all the right things. I'm so sick of tofu that I don't even want to drive past the soybean fields that surround my town. I can't remember ever loving a tall glass of water. I drink so much water these days that I think I dream of floating, drowning, or being waterboarded. I'm pretty sure that the Instacart delivery folks hate to see my order come up because they are going to be toting at least 2 cases of water for my deliveries. Bless them all, they really are the sweetest people. They might hate me but they never let on.

Oh, and this is fun: when my sarc is acting up and I can't remember anything for more than 5 minutes, I have trouble keeping track of just how much water I've consumed. I try to do a minimum of 4 of the 16.9-ounce bottles per day. I'll get to midday and I'm rooting through the recycling to see how many I have left to go. Now I've just started saving all the empties until I go to bed so I can track them. And it's a good thing I have a decent bladder or I'd spend half my day trotting to the toilet.

Can you tell I'm in a whining-ass mood today? I'm trying hard to be thankful for all the good in my life - and there is so much - but I do like to whine.

Tell you what, I have learned to cook just about any and everything in that dang Ninja. Give me a little time and I'll learn to make toast and scrambled eggs without getting near my stove. Popcorn, I can do in the Ninja. I've baked, roasted, air-fried, and steamed tofu (don't ask about the steaming results because that looked like a steaming pile of pale grossness!). 

Black coffee has become my morning rescue. Either black or with a little rice milk in it to cut the bitterness. If you'd told me just 5 years ago that I would be buying so much rice milk, I'd have done an Eddie Murphy riff on you.

By the long-way-round, I am wondering if I'm not still partially in menopause. I notice that with all this tofu I'm eating, I feel a little less bitchy, snappy, and not-calm. In the past week, I have not once wanted to bitch slap that one annoying neighbor who tries to force me to be social every time he catches me at the mailbox. All my other neighbors know that I'm not social past vague greetings or - at the most - a minute-long exchange about this crazy Iowa weather. Why can't this one person read my vibes???

Anyway.

I'm a little scared and I no longer have my best friend to help me be a little less scared. I hate freaking out my family with my freakouts. I sometimes let my brothers' calls go to voicemail because I worry I will get choked up. That would invoke trouble. The sibling bat signal would light up and I'd have those guys flying in from all over to make sure I'm okay. And isn't that a beautiful thing to have to worry about? To be that loved? Yeah, so I need to cut this whining crap out. I am blessed, blessed, and blessed some more.

I was thinking about these health problems and losing-people problems and I remember what Zora said about the years that ask and the years that answer. I always want to add that there are years that give and years that take away. And I know that I have been shown so much of God's favor because no matter how much is taken, I always have an abundance left over.

I'll stop now before I get myself too worked up. 

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