Mayo visit update (3rd appt) : FSGS Sucks

I had my appointment with Dr. Fervenza today.  Some numbers are good, some not so good.

The good news is that my protein has bone from 15.2 to 6.7.  You'd think I'd be elated, but folks, I've been here before.  The EXACT same thing happened when I started the clinical trial with Humira, ad we all know how that turned out.  So, I'm just thankful it didn't go up.

Great news is that my albumin is going up.  It's at 2.0 right now, and has been hovering around 1.5 for about a year, so this is definitely an improvement.  It also helps to explain why my swelling has greatly diminished.  At least there appears to be a reason for it, rather than just randomness.

Bad news is that my GFR is now at 39, my RBC is high (although I really am unsure as to what that means for me....it's just BRIGHT RED on my lab results, and red is never good).  My creatinine is 1.5 (was 1.4 last month, it was 0.7 this time last year)...blah blah blah.

You know, it's funny...its kind of anti-climatic.  I live in a state of hyper-anxiety with this disease, and it's been progressing rapidly lately.  To hear numbers like this gives me a bunch of mixed emotions.  I'm not happy.  I'm not sad.  I just.....am.

I am exhausted.  I'm beyond anxious....it's like I can't take a deep breath, or if I do, the tightness comes back right away.  I feel as though I haven't slept for 2 days, physically.  I did yoga yesterday (yay me) but am now sore as hell.

I'm still incredibly thankful that my swelling hasn't come back yet, but there it is.....that word....."yet".  Some of you understand what I mean....it's nearly impossible for me to celebrate any "victories" because I don't feel like they truly are.  There's always something lurking around the corner.  This isn't going to "go away".  The likelihood of me going into remission are REMOTE...yet I'll keep doing what I can.  We're going to increase my prograf a little more, which means more tremors, maybe some headaches, a higher creatinine and a lower GFR.  But Dr. Fervenza promised me only 6 months of this....no more, and he reiterated that today.  Only 3 1/2 more months to go :)

Holy hematoma : FSGS Sucks

This is what happens to me when I have a tiny itch.

Two days ago, when I was meeting with the ladies from NKF, I started scratching this area. It was irritated from crossing my legs, being all ladylike, and I started itching it. Now, for normal folks, it would stop e, but eczema combined with kidney disease puts this on a whole different irritating level.

It finally stopped, but then I tried to cross my legs again yesterday, and the pain was ridiculous. That's when I noticed this beaut. I'm guessing that bruise will last at LEAST a month. Awesome.

I know this seems like such a stupid post, but it just highlights one of the everyday things I deal with. My body is covered in little bruised like this. Getting a blood draw makes me look like I'm shooting heroin sometimes. I'm just highly annoyed right now.

Here's my quick and easy breakfast : FSGS Sucks

So I'm on a lot of community forums for kidney disease and the one thing that keeps coming up is diet.  

This is a tricky subject, because it is so incredibly important to speak with a renal dietician who knows YOU'RE particular situation.  I have done it, but unfortunately not everyone can.  Because I lose so much protein and am on so many diuretics, I can't follow The Kidney Diet (DASH).  My goal is to get a decent amount of good protein, use a little sodium as possible (but let's face it...I love food, and flavor is incredibly important to me.

Breakfast started to become the biggest issue.  After I was diagosed with colitis, I noticed that I would wake up nauseous most days, so I didn't really eat much breakfast, and I've always preached that it's the most important meal of the day, so I had to figure out what to do.  I needed protein to last me through the day, and I wasn't getting enough.  Plus, I'm not a morning person, and don't get up early enough to do this every day, so I decided to make these breakfast muffins on Sunday, which gives me enough for 6 days.

I start off by filling a muffin tin with about a 1/2 cup all-nature shredded potatoes.  I put these in the oven until they start to turn golden brown.

While those are cooking, I chop up some low-sodium ham and bacon, but you could add onions, green peppers, whatever you wanted.

Then I take anywhere from 12-16 eggs, add about a 1/4 cup of milk and beat them.  I also add in some fresh chives and dill from my window herb garden.

Once the potatoes are done, I add the egg mixture to the pans, and then add the meat and some cheese.  I let it bake about 20 minutes.

And voila!  Yummy, easy breakfast muffins full of protein (and probably more salt than most are comfortable with but it works for me.

I let them cool, add them to a plastic bag, and in the morning, I take out 2 of them, pop them into the microwave for a minute and eat them with some salsa.

I'm really into the "real" food movement.  I use real butter, I don't use low-fat or fat free or sugar free anything.  For me, it's all about as natural as possible, and moderation. I'm not perfect, nor do I claim to be, but I also believe that if it all came down to nutrition, we'd all be cured, so I'm a realist trying to strike a balance doing the best I can and keep my life "normal".

NKF and Peeeeeeee : FSGS Sucks

Last night, I had the chance to meet with Kristin and Breanne from the National Kidney Foundation serving Minnesota, the Dakotas and Iowa.  I was told by Troy Zimmerman from the NKF (who I met in Washington, DC during Advocacy Day) that they have a very active chapter here, so I was excited for the opportunity to be involved.  Nephcure doesn't have a chapter here yet, and I don't quite have the time to start one up, but I still want to be involved in any way possible, so I sent them a message on Facebook and they were kind enough to come out and meet me last night,.

We talked about all of the activities that they have, and the volunteer opportunities, so I'm really excited to be a part of something already well-established.  Hopefully I can volunteer some of my photography services, as well as meet new people with all types of kidney diseases (not just FSGS), donors, nephrologists...you name it.  So THAT was very exciting! Thanks ladies!

And today, I'm working from home (although taking a tiny little break right now to write this) so I can do a 24-hr urine collection.  I have an appointment at Mayo at 8:00am tomorrow (fasting, no less), and I don't have my friend, Caroline, with me to keep me company, so it's going to be a boring, hungry drive down there, but it's always worth it to see Dr. Fervenza.  I'm not sure if anything is working, which is why I'm so anxious about the labs.  I had a glucose test done last week and I'm borderline on that, but my A1C is just fine, so we'll keep an eye on it,.

I've been feeling great.  Still very little swelling...it started a little yesterday, but I completely attribute that to sitting at a desk all day.  The more I move, the better it is, so a desk job feels like a handicap sentence at this point.  I propped my legs up last night, and all is well again today.  I've even been able to sport some dresses and shoes that I haven't worn in over a year, so I'm still riding the top of this wave.  Keep your fingers crossed for me!!

Interesting information for your Monday : FSGS Sucks

Here's a couple of things I ran across while perusing the internets lately....


You have to watch this video.  Powerful.
  

 And an article in The Atlantic magazine...

And a story about the oldest living kidney donor

With amazing highs, comes amazing lows : FSGS Sucks

It's funny....I started writing this post last weekend (Memorial Day) and never got the chance to publish it, so it might be a little delayed, but the info is still pertinent.  Plus I wanted to remember this...

GREAT Memorial Day weekend with Izzy.  I had TONS of energy...even bought a pair of roller skates :)

And the swelling is GONE.  Not a little, most almost ALL OF IT.

But them, as typically happens, the bottom fell out.  I could NOT...DID NOT...sleep Monday night.  Maybe it was the stress of going back to work...maybe it was the Acthar shot..who knows.  I just know that I lie there all night, watching countless episodes of Private Practice on Hulu plus, praying for some shut eye.  But I didn't get any.  And my fact started to puff up and get all red....felt like it was on fire.  

Sooo, another day off of work (I've totally exceeded my sick days for sure), somehow I got Izzy to daycare (because, to add more difficulty to it, Joacim was traveling), and I went home and took a sleeping pill.  It worked, but either something in my body, or all of the lying down, made my eyes, sinuses and nose get all puffy.  I'm such a sexy beast in this photo.

And here's a little video of how truly awesome I felt.

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But do you know what's even more amazing?  I have had skinny legs and ankles ever since.  Even today...still skinny.  My family was up from Indiana visiting this weekend, and they all commented on how good I looked...how thin I looked.  I even went to a concert last night dressed up in my pretty red wedges that I absolutely LOVE but usually can't fit over my feet or tie around my ankles.  I'm feeling like a sexy, vibrant little thing.  I wish I could draw some crazy conclusion as to why this happens, but I can't.  Nothing makes sense..I've been eating like crap...had a few beers and glasses of wine, my sleep is awful, and have been completely forgetting my medicine.  So essentially, if I do everything that I'm NOT supposed to do, then I feel better?  Wonder what my doc is going to say about this :)

We'll also see what happens today.  I'm back at work, where life isn't so happy, so we'll see if I have a physical reaction (swelling) to being here.  I'm working at home tomorrow because I have my 24-hour urine to do for my monthly appointment at Mayo on Wednesday.

I had a glucose test (not a tolerance test, but a fasting glucose).  My fasting glucose was 118 (their range is 65-100), but my hemoglobin was still within the normal range, so nothing will probably be done.  Even though I swing wildly, sometimes up near 300, until I get in to see her to show her my labs, I'm guessing it'll not change.  I should probably do a much better job of taking these damn readings throughout the day, but that damn needle HURTS!  And I forget.  And I'm wondering how many more reminders I can set up on my phone to drive people crazy.... :)