Saw the doc today

Saw the doc today

I just saw my nephrologist, thought I’d post a quick update.

First, I’m almost a month in of very clean renal diet eating (I’ve lost about 10 lbs in the process yay), and haven’t had a drop of alcohol in over 3 weeks, so I have to say I’m feeling pretty darn good right now. With my super social lifestyle, I don’t think I’ve gone 3 weeks without some sort of a drink in years. It’s amazing how it clears your head out.  Anyway I’m gonna continue this trend as things are looking good, and most importantly I’m feeling amazing.

My protein / creatinine ratio jumped up to 4.9 (from 4.6) – which isn’t good – because my protein count in urine jumped a bit… but all my other numbers (potassium, phosphorus, sodium, calcium, iron, blood pressure, many other things that are way over my head) are all VERY GOOD and NORMAL readings. This is a direct result of diet I’m positive. He’s still concerned about my protein level in my urine (from the Acute Tubular Necrosis they found in the biopsy), but still wants to wait it out awhile as I’m not in “dire” shape and there’s still time to improve.

I’ve been on a high dose of prednisone the last month, and he’s going to start weening me off of it over the next month. I can’t just “stop” taking it, as my body would freak out – so I have to taper off of it for a month.  I’m glad because this drug makes me very wiry – can’t sleep half the time (it’s why I’m up at 2 or 3 am some nights wide awake and not tired).  So hopefully after weaning off of this I can get back into some normal sleeping habits again.

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The BIG news though – which makes this whole thing as “real” as possible, is he’s referring me to a surgeon to get an Arteriovenous Fistula put into my arm.  (click that link for more details of that). This is the first step in preparing for possible dyalisis treatment. Now don’t be alarmed – I’m not a dialysis candidate right now. But it takes awhile for this thing to heal up and become functional – he just wants it to be ready should the time come that I need it.   My kidneys are at 22-25% functionality right now – should it ever dip below 20%, (and I start feeling the effects – which I don’t at all right now) the prospect of dialysis becomes very real.   So it’s better to be prepared with the “preferred” method than to have to do it other more risky and pain-in-the-rear ways.  Apparently this is “The way to go” so I’m all for getting prepared for it should I need it.

It’s an outpatient surgery – basically they fuse an artery to a vein in your non dominant arm, which increases blood flow speed through the vein.  This thickens the vein walls, sort of creating a “super vessel”, so to speak, with fast rushing blood.  That site could then be used for the exit and entry of blood to a dialysis machine. He says you can actually put your finger to your arm and feel the blood pumping through it – it’s called the “thrill”.  You can also hear it with a stethoscope – that’s called the “bruit”.

It takes a few months for that to heal up and take shape – so that’s why he wants me to get it going and have it “Ready” for down the line (which could be months, years, whatever) should I ever need it.

So the next plan is – see the vein surgeon, get the AV Fistula procedure done, continue my prescribed medication, and see my nephrologist in another month to continue monitoring my kidney function.

In the meantime, I’m gonna continue this very kidney conscious diet and lifestyle, continue to lay off the suds, and use this time to my advantage to find creative things to do with myself.  Right now, Netflix, Rosetta Stone Spanish lessons, and Uber driving are taking up a lot of that time – I just wish it would warm up so I can break the bike out and get some fresh air!

Another update forthcoming in the next month or so.

Well the Doc called, decent news I guess.

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Kidney biopsy results are in – Good news, bad news, but good news.

Good news #1 – It’s confirmed that I have the same kidney disease I was diagnosed with 25 years ago – FSGS (Focal Segmental Glomelurosclerosis). This is scar tissue – it’s not reversible, it’s basically just destroyed kidney tissue. Nothing drastic has happened with it  – it has gotten worse over time but it’s not to the point of complete failure.  When it gets worse it transforms to FGS (just take the word “Segmental” out) – and it’s full blown scar tissue through the whole kidney, and that’s really bad news.   He’s happy that they didn’t find that issue with me. So status quo on the FSGS is good, so I’m gonna roll with that and accept it, it is what it is.

Bad news… They did find another condition that I have – ATN (Acute Tubular Necrosis).  This is a more recent anomaly which has caused a big spike in my protein count in my urine. This is a condition where the tubules in your kidneys (which filter your blood) start becoming damaged or destroyed. This isn’t devastating news however, as apparently this condition can be reversed with proper diet and medication.

This brings us back to the Good News #2 – there’s hope I can remain stable with the FSGS (which I have been for the most part my whole life) and actually reverse the ATN.

I’ve been on a lot of medication the last 6 weeks or so – and he wants me to continue that path, as after being on it for 3 weeks I stabilized a bit. He wants to see more long term results, hopefully getting some improved numbers here after another month or so of medication and following my new renal diet.

As for medication, he has me on CellCept – which is a medication used by people who have had transplants. It’s anti-rejection medication. Obviously I haven’t had a transplant, but I’m taking this to prevent my immune system from attacking my diseased kidneys.  (Apparently it’s a natural body reaction – attack the disease but it’s actually attacking the organ).  There are obvious risks from this though – with lower immune system comes risk of infections and other issues, so I pretty much have to be careful and health conscious.    Another major medication I’m on is Prednisone – which is a steroid.  The Steroid is used to prevent swelling in my kidneys – which is causing the tubule damage (ATN). Without the swelling, healing can happen and the ATN can be reversed, so this is where the Prednisone comes in.    I’m also on several other medications (with kidney disease comes high blood pressure, so I’m on meds for that – as well as a water pill to keep my system flushed – when kidneys aren’t filtering properly you bloat up and hold water.)  No wonder I go through such extreme weight fluctuations. I’m a walking bloat machine.

Well all this sounds very confusing but the bottom line is, my kidneys are sick – always have been sick – BUT they aren’t dead. There’s still hope they can be improve and I can remain stable or even get better.  There’s also a chance they won’t get better, they will get worse, and I’ll need dialysis/transplant plans.   But we aren’t jumping to that just yet, we’re in a wait and see mode for awhile.  I haven’t been on this medication very long at all – we wanna roll with it and see if any improvements can be made.  But he has thrown that nibble out there – if things start getting worse – a transplant is a very possible outcome from all this.

Anyway for now – is to do all the things I’ve never done before. My plan is to take my new medication.  Continue with my new renal diet (watching Potassium, Phosphorus, Sodium, and Protein intake).  I can have all of the above but I have to monitor the amounts.  These are not “strict doctor’s orders” but they are pretty much my orders.  I’m gonna do all I can to help myself here, and if that means a major lifestyle change then that’s what it means.  I know I can do it – I did that Paleo thing for a very long time and thrived on it. Sure I got off track a bit on it and lost focus, but it wasn’t a life or death thing – this sort of is, it puts things into perspective. It kind of changes your motivation a bit :)

I go back in another month to check up again – I’ll blog about it sometime in March or early April when I go back and get more results. In the meantime, operation “heal Terry’s kidneys” are in full force! I’ve quit drinking, I’m watching my 3 P’s (Phosphorus, Potassium, Protein), and keeping my blood pressure under control.  I just wish Spring were here so I could get outside for distractions! It’s major cabin fever in this apartment – but hey Winter is almost over :)  I think it’s gonna be a hell of a fun Spring and Summer, with renewed enthusiasm and a whole new outlook on ways to enjoy myself and take care of myself at the same time.

 

 

Update

No biopsy results yet, but good news I’m feeling great! I had zero pain after the procedure on Friday, I was just tired and moved slowly for a few days so not to cause any internal bleeding. All seems healed up and I feel back to normal, and even feeling better than before! So now that that part is over, I’m turning my attention to a healthy kidney lifestyle.

After losing 50 lbs a year ago I got lazy and put half that back on. I started eating like crap way too often, fell into a bad cycle that never really ended. I ate very healthy at home – I never got out of that habit – but I really let my inhibitions go when going out, and I went out a lot in the past year. Drank way too often which led to eating crap way too often.

Well here we go again I’m down 7 lbs in past 7 days. I know it’s water / bloat loss the first week, but not a bad start. It’s not full on Paleo this time but it does start and end with real food. As a now fully practicing renal patient the new name of the game is limiting potassium, phosphorus, and sodium, so that’s my new focus.

I still plan on going out and enjoying myself, I’ll still hit my concerts or go out to watch a ball game and toss a cold one once in awhile, that’s my idea of living and I’m gonna keep living. But, no more sitting in bars every other night for hours upon end for the hell of it. While I love the company and friends there, I just have to be smarter for myself, make healthier decisions.

I’m gonna be one very healthy and brand new person this year and see where that leads me. Game on. #newlife

You gotta be kidn-ing me? nope… here we go!

Most of you probably don’t know this info about me, but I’ve been living with a kidney disease most of my life – chronic glomerulonephritis. I’ve kept good tabs on it the past 27 yrs that I’ve known about it, my numbers have been not so in my favor but thankfully have been stable all these years.

I found out I had a kidney disease when I was 18 years old and tried to join the military. The Army turned me down, I failed my physical. I saw a nephrologist at the time, he said my numbers were not normal but nothing to be alarmed about – I was a young man and it could get better. So instead of serving my country I started working, decided to go to college, and carried on with my life.

Things on the kidney front never got better since then like I’d hoped, but they hadn’t got too much worse either. I had been pretty stable, with slight ups and downs the past 25 years, nothing to be concerned about.

The past 6 months however, my numbers are unfortunately starting to get a little worse, so it’s time to take action and plan ahead finally. I’m having a kidney biopsy done in about 9 hrs – to get a modern diagnosis (my last biopsy was 25 yrs ago, so my nephrologist wants to go back in for tests)

Needless to say I’ve lived a care free and fun life since then, a choice I don’t regret at all, even with me knowing about my kidney disease the whole time. But I’m older now and the writing is definitely on the wall, so it’s time to focus on health and wellness, and more than anything helping myself.

It’s time to slow things down a notch, there are big lifestyle changes ahead. I’m switching to a renal friendly diet, going to focus on health and wellness and try to be the best example I can be for myself.

You all will still see me out and about a lot, but probably in a different light. I’m going to turn my attention to being the best person I can be as opposed the most care free, live-by-the-day person I’ve always been. I have too much to lose to not start paying attention to things I need to be paying attention to.

Now I’m not gonna be crazy and just flip a switch – I’ll still have fun with my friends, indulge a little here and there, I’m gonna keep living – but I’m just going to start pacing myself on those things better – as opposed to all out, all the time.

I’ll update the blog as things progress, hopefully nothing for a very long time. Also Hopefully with a new diagnosis I can get medication to help these ole kidneys out before they whittle away more.

Anyway here’s to a smooth procedure tmrw – I mean there’s no party like getting kidney punched with a giant needle, right? :)

Chicken Parm Squash bowl

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This turned out amazing! Dinner for two. Here’s what you do:

– 1 small squash (not sure what it’s called but its yellow with green or orange stripes on side), looks like a mini pumpkin shape.
– 2 chicken breasts
– spices to taste (I used cayenne pepper, pepper, garlic, crushed red pepper – I like it hot)
– olive oil
– organic marinara (get the expensive kind – it tastes so much better and doesn’t have scientific crap in it)
– Parmesan cheese to taste (optional – but then it wouldn’t be Chicken Parm now would it? :) )

Preheat oven to 350. Cut squash in half and scoop out the pulp. Brush olive oil onto cut sides of squash. Season chicken with olive oil and spices.

Bake chicken and squash halves at same time. Place squash on pan cut-side down. Bake for 20 mins.

Turn chicken. Bake for another 10 mins.

Take tray out of oven. Flip squash over to form 2 bowls, slice chicken and fill bowls, top with marinara and cheese.

Put back in oven for 5 mins. Enjoy!!

Mini squash taco bowls

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These are delicious and very simple to make! Here’s what you need:

– 1 mini squash. I’m not sure what they are called – they are small yellow squash with green or orange stripes on the side.
– 1/2 lb ground beef
– chopped onions and green peppers
– Mexican spices (cumin, chili powder, garlic, salt, pepper, cayenne pepper)
– taco toppings (lettuce, tomato, a little cheese is optional)

Cut the raw squash in half, gut the insides. Coat insides with olive oil. Place both halves face down on baking sheet, bake for 30 mins at 350 degrees.

While that’s cooking, brown ground beef, drain grease. Add spices and a little water, and simmer while squash is cooking – stirring occasionally.

Pull squash out of oven. Fill cavities with taco meat, top with lettuce, tomato, and a little cheese. I added a little Sriracha for extra heat.

Using a fork, Eat everything but the skin. Enjoy this delicious healthy meal!

Back in the saddle

Well hello there earthlings it’s been a long crazy summer of debauchery of my diet. I had a blast this summer but I did fall off the Paleo train for the most part. I also quit running and working out at some point this past summer and trust me my mind and body are certainly feeling the effects.

So I’ve decided to get back on track – part of that will be keeping this blog up-to-date again. Although I did blog quite a bit last year it was kind of a pain in the ass to put entries in, but I’ve noticed this new WordPress app on my iPhone is actually pretty sweet here a year later. I’m actually speaking into my phone right now which is typing this for me – pretty cool huh?

I didn’t totally quit the Paleo / real food world this past summer as I did eat pretty good at home but I went out a lot – I ate out a lot. But that being said I did learn some really cool very healthy new recipes the summer and I’ll share a few of those as I re-create them here in the coming months this winter.

So anyway that’s it – I’m back. If you enjoyed reading my blog last year, you’ll be happy to see more updates in the coming months this winter. I’ll see around!

— T

Rock Boat XIV

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I could go on a very long dialogue about all my amazing experiences with the best friends in the world, post pictures out the wazoo, talk about the new bands I discovered, recount my smiles, high fives, hugs, kisses, and every “wow” moment I had – but I can sum all of that up in one simple thought. It’s about the people, especially the ones who you just exchange a simple “hello” with and move on. The thing is, that “hello” lasts a lot longer than it seems.

A passing “hello” and a smile goes a lot further than one would first think. I saw familiar faces everywhere – we may not be the closest friends in the world, we may not even talk more than a simple “good to see you” each year.. but the impact is so much more than that. After 11 years, I see so many familiar faces at every corner of the ship – every one of you are important to me – you are part of the magic that is the Rock Boat. Just seeing you across the crowd, I feel like I know you whether we speak or not.

So to my closest friends in the world – my Indy crew – we are a good 15 or 20 strong now – I love you all. To my Chicago friends, I embrace you all as a 2nd family. To all of the veterans around the country – the ones I’ve become friends with over the years – I love you all! To the new people I’ve met in the past year or two – welcome to my world, you’re a big part of it!  To the people who are there every year who I just exchange casual hellos and smiles with – you’re just as important in the grand scheme that is the Rock Boat – See you all next year :)

The Best Paleo Chocolate Chip Cookies Ever | Oatmeal with a Fork

The Best Paleo Chocolate Chip Cookies Ever | Oatmeal with a Fork.

I’m making these cookies right now – and I have to say – they are freaking amazing!!! I could have sat and eaten the entire bowl of dough. but alas – I am letting them cook.  The almond meal/vanilla/honey/cinnamon mixture makes them taste sort of like oatmeal – so damn good!

Blackened Chicken Breast

 

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ok so here is a delicious Paleo chicken recipe I whipped up for lunch today!

ingredients:

  • 2 skin-on, bone-in chicken breasts
  • 1/4 c melted coconut oil
  • dry rub Cajun seasoning of your choice

Make sure chicken is thoroughly thawed. Coat skin side of chicken breasts with coconut oil. Apply very generous amount of Cajun seasoning to chicken breasts. Throw a bunch on there – to where it looks like it may be way too much.

Bake at 375 degrees, uncovered, for 50 mins. Serve piping hot – enjoy this delicious juicy chicken breast with crunchy Cajun skin!!