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2 Years on Dialysis

Hello my peeps! I was sitting around this morning and opened up my blog site, and realized I haven’t made an entry in over 5 months. Time to fix that!

Last week was my 2 year anniversary on dialysis. 24 months. 2 months of hemodialysis, and 22 of those have been on peritoneal dialysis.  Wow.  2 years. It’s not easy to explain how much my life has changed in the past 2 years, but it’s something I’ve become accustomed to believe it or not.  Let’s do some math. 22 months of PD – 4 treatments per day, every day.  That’s 700 days times 4 = 2800 treatments. Each treatment takes about 30 minutes – so that’s 1400 hours of being chained to a pole, draining and adding fluid to/from my abdomen. Think about that. 1400 hours. Unreal.

Living in 5-8 hour segments (24×7) really makes you re-assess how you live your life.  Even basic things such as running errands, hanging with friends, visiting family.  You can’t just up and leave on a Saturday morning and plan on returning “sometime that day or night”.  Nope, you have to know exactly when you are returning.  Or take dialysis supplies with you to do a session on the run.  I’ll do that from time to time, but for the most part, when I do run errands or visit people or go out to socialize, I make sure I’m not too far away.  It’s much easier to just do my treatments in the comfort of my home.

For the first year I decided I wasn’t going to let this situation control me. I was bound and determined to maintain my same life.  Go on vacations. Go to a million concerts. Don’t be stuck at home all the time.  I’m Terry GD Angel, and I’m not going to let this thing control me.

So, in that first year or year and a half, I did all that. I went on the Rock Boat. I took a few weekends to Chicago. I visited New York City for 4 days. I spent a weekend in Minneapolis for a Colts/Vikings game. I went to Rock By The Sea Lite.  I hung out with friends on Mass Ave. I went to the gym 3x per week. I was living alright. Come to find out, I was living too hard. It was literally wearing me out.   I figured out that while it was fun to do all things, I wasn’t really enjoying it as much as before.  I was passing out from utter exhaustion by dark each night.  (What, you were asleep at dark on the Rock Boat? – yep, or not long after). This is why I didn’t go on TRB 17… It just wasn’t the same anymore.  Through it all, while I do have some fun memories, I also have memories of being utterly exhausted – and those usually overshadowed the good.  I felt shortchanged in all these activities, as honestly I wasn’t really experiencing them in the same ways I was before.

If you recall, about 5 months ago I  posted about my cousin Dennis deciding to give me a kidney. He’s dedicated his life to help me for the past 1.5 years – losing over 50 lbs to become eligible – and I’m truly indebted. It has taken what many would consider a very long time – but he’s such a good match for me it’s definitely worth the wait.  Sure, I could have told him “thanks but I need something quicker”, but first there’s no guarantee there would be something quicker.  Second, having a living-related donor is the best possible match, so it’s worth the effort and time of waiting. Third – If you have someone willing to go through everything Dennis has done for you, you don’t complain about the wait. It’s worth it!

Anyway, since I knew he was getting closer to his target weight, and I was wearing myself down by “living like I always used to”, I decided back in March 2017 that I was going to slow down.  I decided to sacrifice the Spring and Summer of 2017 to just “wait”.  To give my mind and body a break from all the activity.  Rest more, slow down, and just get through this last phase.

So that’s what I’ve done.  My closest friends haven’t seen me nearly as much as before. I don’t go to nearly as many concerts. I haven’t taken a vacation since September 2016.  I missed a dear friend’s destination wedding, which was the hardest thing for me to do through all this. Sure I could have made an exception and went, but in the end it was better for me to stay home. So for all of 2017 so far, I have come home after work each day, and just relaxed, and have gone to bed around 9 or 9:30 each night (weekends included).  I’m up at 6am every day (weekends included) feeling great.   I run my errands, I’ll visit friends or family here or there, but I always make sure I’m back home to do my treatment every 5 hours.  I’ve found it’s so much easier to live my life in these little segments as opposed to trying to live on the run “like I used to”.

Now, if I didn’t have a transplant coming up – I probably would work in a better mix of “normal life” activities. I wouldn’t totally “shut down” like I have this summer, as that would be giving up on life.  Since I knew the end was in sight, I just decided to put on the brakes for this year only… not go out most weekends… just get through the summer, and wait for Dennis to be 100% approved.

Well guess what – we’re almost there! Dennis got to his target weight about a month ago. For the past 3 weeks he’s been re-doing all the tests that he’d already passed over a year ago.  Blood and urine labs, and all kinds of other body system testing.  Just to make sure he is still “good to go” for pulling an organ out of his body.  So far, so good.  He has a few more exams to get through… once he’s finished with those in the next week, he’ll have some one on one meetings with counselers and the surgeon team… then It’ll finally by my turn – I’ll have to do all my exams again (which I have passed twice now, but they’ll want to test me a last time to make sure).  My exams go pretty quick, I usually get them all done in 1 day.

Short story – there is no transplant date yet.  However we are closer than we ever have been, all the “hard” things are over, it’s a matter of getting to that finish line which is just ahead.  Barring an unforeseen “gotcha”, I’m guessing this will all go down in the next month (but it could be sooner or later, who knows?)  – fingers crossed!

Terry

Adventures in Cooking

First let’s get something straight – I don’t claim to be a good cook, I just like to experiment with things. I don’t follow recipes, or write them . Most everything I cook is different every time. I don’t measure anything, I just eyeball and toss it together. If something sounds good at the time, it will probably end up as part of dinner in some way shape or form.  Also, this post isn’t about a certain food recipe or to show you what I had for dinner. I want to talk about some things I’ve learned in the kitchen and some of the tools I’ve learned to use.

In the past couple of years in my kidney sickness and dialysis, I’ve spent a lot more time at home than I ever have before. I used to eat out a ton… now I rarely do. I’ve learned that I really like cooking for myself, and have become pretty good at it most of the time.

I’ve experimented with different cooking tools, kitchen gadgets, you name it I probably bought it from Amazon to try it. I’ve kept a few and thrown a few away.  One thing I did learn in the past year years, is that my knives I bought at Target 15 years ago had to go.  I wanted to up my knife game but not break the bank too much.  In recent experience and web research, I decided that I didn’t need a fancy giant knife set.  Sure it looks pretty in a block on your counter, but it’s overkill. You don’t need to spend a month’s rent on a block of quality knives.  I decided all I needed was a good chef’s knife, a paring knife, and some good steak knives. (which almost did cost a month’s rent haha… but it’s worth it).

I did some research and decided on Wusthof Classics.  These are German knives, forged from a single piece of steel. They are tried and true, a top quality brand name.  I didn’t buy them all at once, it took a few months but I ended up with this small collection:

Wusthof Classic forged knives and honing steel.

Talk about a culture shock on cutting ability! Man these things are sharp. They’ll slice through anything like butter. I use the big chef’s knife every night. I cut, chop, slice, dice, you name it. Meats, vegetables, fruits, anything, everything. It’s the ultimate “super tool” for your kitchen.  The paring knife gets less use but has a vital role. I peel skinned fruits and vegetables when necessary, it’s also good for cutting small items like garlic, herbs, roma tomatoes, etc.   The steak knives are my most recent purchase. I cook a good protein every night – chicken, steak, pork, etc. I must say that having a good quality steak knife with your dinner plate is a true luxury.  The act of cutting through my entree is just as much a highlight as eating it now, hah.

Sticking with the “less is more” mantra, I have the same strategy for my cooking vessels. The only two frying pans I own now are right here.  I have a 10″ cast iron, and a 10″ carbon steel frying pan. (oh yeah, I do have a 6″ cast iron but it’s rarely used – I make silver dollar pancakes or cornbread with it on occasion). Anything I fry or saute on a burner, or roast in the oven is in one of these two pans.   Meats, vegetables, sauces, breads, pizzas, anything, everything. I make it all in these two pans.

Lodge 10″ cast iron skillet, and Lodge 10″ carbon steel skillet

I guarantee you these two pans are superior to any of those fancy chemically treated non-stick pans you see everywhere.  It’s a different kind of heat with these guys, it’s hard to explain. It’s so “even”. Everything cooks the same on every part of the pan, even the sides.  I’ve built up a good natural seasoning on them in the past several months. At first they were a chore to clean, but now even charred bits fall right off with an easy swipe with a chain scrubber rag.  After every use I gently wash with hot water only (no soap), completely dry it with a dark rag, then coat it with a light squirt of olive oil, rubbed all over with a paper towel, and hung back up on the hooks.  The carbon steel pan has become my “breakfast” pan – I cook a lot of bacon, eggs, etc on that one.  The cast iron is my “dinner” pan, it never disappoints.  My favorite thing to cook on it is steak.  I coat each side with salt and pepper, then sear each side on very high heat for a minute, then pop it into a 500 degree even for 6-9 minutes (depending on thickness) for a perfect juicy medium rare. Then to cut through it with one of those Wusthofs above? OH MY so good.

Jenny loves my new hobby, she says that “she benefits too” haha. She loves when I cook for her. I must admit, when she’s over I usually cook something I know I”m good at – I usually stick with the “experiments” when I’m home alone.  Hey, if it’s a bomb, oh well, I know to alter it next time or just scrap it altogether hah.  Anyway, for Valentine’s Day this year she bought me the Gordon Ramsey Master Class.  You’ve probably seen it popping up on Facebook ads. It’s very interesting, he shows you how to cook 4 or 5 of his signature dishes, as well as advice on kitchen tools (I took his advice!), how to pick out meats, fruits, vegetables, and some general advice on cooking and business in general.  It was worth every penny of the $90 she spent on it – thank you Jenny 🙂

The Science of Good Cooking, and Gordon Ramsey’s Master Class booklet

As part of Gordon’s class, he has some recommended reading.  One of the books he recommends is the one on the left – Cook’s Illustrated’s “The Science of Good Cooking”.  This book is amazing! It’s the result of a group calling themselves “America’s Test Kitchen”.  They explain the science of different cooking techniques. From temperature control to cooking tools, to types of food to temperature ranges.  Sure, it’s chock full of recipes like any other cookbook – but it goes beyond that. Each chapter focuses on a different scientific “lesson” in what’s really happening when you cook something.  They do experiments, cooking each dish using different techniques, and along the way reveal the optimum way to cook everything they show you.  Each chapter focuses on one topic, and gives several recipes to try using their proven methods.

I currently have this book on loan from the library – however I am going to buy it somewhere once my string of renewals runs out.  This book is a keeper, I highly recommend it! It reads like a college textbook – but it’s not too dry – very informative and practical.

I hope you’ve enjoyed reading about my “Adventures in Cooking”, or at least the tools I use in that endeavor!

Terry

— March, 2017

Meet the Guy Who’s Saving My Life

So, the date is January 25, 2016.  I’m sitting at an outdoor bar in Miami, FL with a bunch of friends. I can see palm trees, blue skies, and sailboats in front of me.  I’ve already been on dialysis for 5 months, so I was feeling pretty good and relaxed.  My days of feeling fatigued and sick ended months ago. I’m super excited because I’m in Miami for The Rock Boat, my annual concert cruise I’d attended since 2004.

I’d just been put on the kidney transplant “list”, which basically means you are waiting for people to die so yours can be saved.  Sounds pretty morbid and ironic huh? But that’s the way it works.  Unless you can find a living donor, which is the preferred route anyway.

That’s when I got the best text ever… my cousin Dennis Angel texted me and said something like “I got the call, it’s my turn for further testing, I’m in 100%”.  Talk about making a great day even better.  I spread the news to my friends, we had a big toast and cheer, and I went on vacation in the best of moods!

A little background on Dennis.  He’s about 4 years older than me.  I didn’t know him very well growing up, he’s on my father’s side of the family which is huge. He lived in a different town and we honestly never crossed paths growing up except random funerals.  We knew each other but just not well at all. I know Dennis was in the military when he was younger, and I knew he moonlighted as a high school and college referee for various sports, but I didn’t know him very well at all up until year 2008 or so.

Back in 2008-2009 timeframe (when Facebook was starting to become popular), we became “friends” online. I remember the day we met for a beer at Old Point Tavern, downtown Indy. We had a good reunion and became acquainted again, as it had been many many years and we didn’t really know each other, besides obvious family connections.

Ever since then, we made it a point to grab a beer here and there, keep in touch.  Dennis is a winemaking enthusiast, in fact he does it for a living.  He owns a wine making shop in Knightstown, and is head winemaker at Belgian Horse Winery in Middletown (near Anderson).  So needless to say, we both have a love for good beer and good wine, so we hit it off there, and made it a point to keep in touch and hang out more often, which we have in the past 8 or 9 years.

When it first became known I needed a transplant, Dennis stepped up to the plate immediately. He called me, I still remember where I was – walking on Mass Ave, he said he doesn’t know if we’d be a match but he’s going to check.   After his initial tests, he found out we are as good a match as you can possible be.  However he was told that someone else was “ahead of him” in line to donate.  Good news for me right? Having 2 people that match and willing to give me a kidney?   So anyway, Dennis tucked this info in his back pocket and started waiting.

A month or two later (January 2016), Dennis got the call that the person ahead of him was no longer a candidate, and it was his “turn”.  That’s when he texted me while I was in Miami.

You’re probably wondering – ok, this was in January 2016.  That was over a year ago. Why haven’t we had surgery yet? Well, we’re all finding out it’s not as easy as it sounds.  Dennis went through months and months of physical examinations.  Blood tests, heart tests, being tested for any and every kind condition known to mankind. There are mental examinations, interviews, social counselors, etc.  All this takes time.

To be a kidney donor, they don’t accept just anybody. Even if you’re a perfect match for someone, they will only take an organ out of your body if you are the healthiest of the healthy.  They consider the donor’s post surgery life just as much as the recipient. They want no risks taken at all.

As it turns out, Dennis was diagnosed with perfect health.  They couldn’t find anything wrong with him, at all. Nothing even borderline bad.  All organ functions, all body systems, all checked out perfect.   The only problem was, Dennis was overweight.  Despite all his “perfect” body readings, they won’t remove a kidney until he’s down to a lower weight.

As we all know, losing a lot of weight takes time. Dennis was a very athletic guy when he was younger, so he has the solid base, and it’s where his great health numbers come from. It’s just a matter of focusing back on those days and getting himself back there weight wise.   He’s been focusing hard on that in the past year, and I have to tell you, he’s done an amazing job.  He’s lost a LOT of weight, and is almost to the point now where he can donate.

There’s no real timetable yet, he’s probably still a month or two away from his “go” weight, but the good news is he’s almost there.  The hardest parts are over, it’s a matter of finishing it off now.   I had dinner with Dennis and his wife Caryn yesterday, I hadn’t seen him in a few months, I can tell he’s really focused on this and is looking outstanding.

It’s such a blessing to know that someone is sacrificing so much to help you. Not only help you, but save you.  The cool part about the whole thing is, he’s helping himself too.  He admittedly let himself go for several years,  but this thing he’s doing for me, he’s also doing for himself.  We both win here.  He’s going to be a lot healthier even without one of his kidneys – and I’m going to relish having that sucker in my body.

I’ll give you all updates as Dennis gets closer and is approved for surgery.  Like I said before we don’t have a real date yet but we are guessing in the next couple of months things should start happening.  I’ve been on dialysis for 1.5 years, so a couple months seems like a sprint to the finish. Almost there!

Lastly, thank you to Dennis and Caryn.  I’m truly indebted to you both for your sacrifice and good will.

— Terry  (March 2017)

 

1 year PD Anniversary

Greetings! I haven’t given an update in awhile, so I figured the 1 year anniversary of starting Peritoneal Dialysis is as good excuse as any to write up a post here.

Wow – one year. That’s a long time when you do the math on all the treatments I’ve done in the past year.  As you know, or maybe are just learning right now, I have a kidney disease which requires me to do dialysis. The method I use is described HERE. It’s a painless process that I do 4 times per day, every day.  Each session takes about 30 minutes.

I know, I know,  you were told there would be no math today… So I’ll do it for you!  365 days x 4 treatments per day = 1,460 treatments I’ve done myself in the past year.  Each treatment takes about 30 minutes…  so that equals 43,800 minutes… or 730 hours… or a little over 30 solid days (or 1 month) of my past 12 months have been spent hooked up to treatment bags.

What all do I do to kill time? Well thanks to the internet age, I can surf the web. But that gets old really fast, so I decided to be somewhat productive while doing treatments.  I spent many months taking Spanish lessons on my iPad (Rosetta Stone). I got about 3/4 of the way through the program and got a little burned out – so I’ve put that on hold the last few months – but it’s very enjoyable, I will go back to it. I can’t physically speak Spanish at all but I can read and understand some of it. I got the point where I could check out youth books from the library written in Spanish and I could actually read them (slowly) and understand them enough to get by.

In recent months I’ve moved back to my native language and have read many books, topics ranging from Wall Street to drama fiction.  Some books I’ve read in recent months are several by Michael Lewis (some in depth topics on the inner workings of Wall Street – a topic I didn’t think I’d ever be interested in), and then very recently I’ve branched to a couple popular fiction works that are movies now… Gone Girl and The Girl On The Train.  Both are excellent – I recommend them both, and will be seeing the movies soon.

I do have some hopeful news on the kidney donor front – but there’s really nothing to announce yet, but here’s to continued progress on that. I’m keeping those details in check for sake of privacy for those involved – but I wanted to let you all know there may be some good news in the coming months!

Until then, back to starting year #2….

Terry (Oct, 2016)

 

1 Year Dialysis Anniversary

Anniversary-

Usually anniversaries are times of celebration. MIlestones in your life. Perhaps it’s a job, a graduation, a marriage, a notable achievement.  A day to reflect back on something important in your life.

Today is kind of a bittersweet anniversary for me. It’s my 1 year anniversary for starting dialysis. On August 10, 2015, the techs pushed those first needles into my arms.  I remember that day a year ago like yesterday. I was pretty nervous of the unknown, but I did trust my doctors and nurses.  I also remember walking into that building feeling like 100% crap, and walking out feeling like a whole new person. I’d forgotten what it was like to “feel normal”. It was like a light switch… my life went from dim and dark to very bright.  For that I am very thankful.

It’s bittersweet because I’m very thankful for my treatments and am so happy to still be alive a year later. That’s pretty important haha. 🙂  But at the same time, reflecting back on all the work I’ve done in the past year may seem overwhelming to some.

I’ve gone through a lot in the past year. I did hemodialysis for 2 months (4 hour sessions in a clinic, 3x per week), and have been on peritoneal dialysis for the past 10 months. I prefer peritoneal because I do my own treatments myself, and there are no needle sticks or clinics to be go to. I’ve adjusted to the lifestyle pretty well. I’ve done 4 treatments per day, every day… so over 10 months that adds up to over 1200 treatments. Each treatment takes about 30 minutes… so doing the math you can see that I’ve been attached to my treatment pole for 600 hours in the past year.  Seems like a big task, no?

Sounds like a lot doesn’t it? Well trust me it doesn’t seem that bad in practice. when you break that into 30 minute chunks it’s not all that bad.  I’ve got a lot accomplished in those 30 minute chunks. I do Spanish lessons on my iPad, I read books, I surf the web, I talk on the phone.  Time goes by pretty fast thankfully.  Just like this past year has in general.

Along the way I’ve developed some very good habits. I eat healthy, I exercise regularly. I’ve learned how to live in a routine, which is total opposite of my normal lifestyle. That may sound tedious and boring but it keeps me alive. I get up, I do a treatment, I go to work.  I do treatment, eat lunch, then work more.  I come home, do a treatment, exercise and have dinner.  Relax, do a treatment, then go to bed at a decent hour.  Get up next morning, wash rinse repeat. Trust me I’ll take dedication to routines over feeling sick.

Here’s to continued positive thinking and good attitude. There’s no sense in complaining or feeling all “woe is me”… that does me no good. I have a life to live – I may not have been dealt the best hand but I can still play.  I’m not folding any time soon!  1 year down, hopefully about 40 or more to go.

 

My lifelong struggle with body weight got even tougher on Dialysis.

When I was a kid, I was as normal as they come. I wasn’t weak, but I wasn’t strong. I wasn’t skinny, but I wasn’t overweight.  I was 90 lbs in 8th grade, shot up to 130 in 9th, and graduated high school at 160 lbs.   Standing at 5’11”, 160 lbs was about as normal and average as it gets. I wasn’t an athlete, and I wasn’t a couch potato. I loved to play backyard sports with friends, but wasn’t strong enough to play on the competitive high school teams.

I went to college, and finally graduated at age 25. At that time I was in the best shape of my life. 5’11”, 210 lbs, a habitual weightlifter. I wasn’t ripped or anything, but had some muscle on my bones, and not much fat…  If only I’d have had this size in high school hah – I could’ve helped good ‘old Jennings County win some football games 🙂

Anyway, after graduating college and starting real life work as a cubicle jockey, my body started making some drastic changes. By age 30 I was in terrible shape.  Up to about 230 lbs and zero muscle definition. For the first time in my life I had a “spare tire”, as they call it.

For the next 10 years, my body weight was a roller coaster. I’d let myself go, shoot up to about 250, 260, 270… but I’d go on these 6 month workout/health binges where I’d drop 20 or 30 lbs… but then gain it right back in the next 6 months.  Finally I ballooned up to over 280 lbs at age 43.  Now granted, I do wear it well for some reason. I’ve never had that giant belly you see on some overweight people. But I definitely poofed up in that region, as well as everywhere else.. arms. legs, face, you name it.

I knew I had to do something drastic to lose about 50 lbs (I’d never lost that much before in one sitting… haha)… So I read up on the Paleo diet, and lived that lifestyle pretty strictly for about 7 or 8 months.  I did lose that 50 lbs, I was back down to 230 lbs… by no means in the best shape of my life but I was happy to be there.   I then slacked off on the strict Paleo guidelines, but used it’s principles to loosely base my diet on, keeping things balanced from there on out. I pretty much kept the same weight for 2 years.. which was a huge accomplishment for me. My body was so used to going through extreme changes each year (big  ups and big downs).  So it was GREAT to actually be a normal human being, having the same body year round!

Well then comes year 2015…  If you’ve read my blog at all you know all about year 2015. The failing kidneys, the being sick for half the year… losing my appetite, nausea, going to bed at 6 pm every night, extreme fatigue…  yada yada yada.  I started hemodialysis in August…  weighing in at 235 lbs.

I instantly felt like a million bucks. All my energy was back, my appetite was back, I was like whoa! This is awesome! Over the next few months I put a few pounds back on, but nothing too drastic. I was in my low 240’s when I switched to peritoneal dialysis in October of 2015.

As you know from my previous posts, this is a wonderful treatment program because it frees me from the clinics, I can do the treatments myself at home.  Or on the road.. In hotel rooms, on cruise ships, I’ve done it all in the past year.  That’s a very nice perk – the mobility.  But the downside – as I’ve found out – is that my body just goes crazy sucking in all that sugar water.

From October 2015 – April 2016 I gained 30 pounds.  “Here we go again” I thought. In 6 months I’ve shot up 30 pounds, to 265 pounds…  doesn’t this sound familiar? Who’s to say that I won’t be 300 pounds in 6 more months?  I knew if I allowed that to happen, then I probably wouldn’t be a transplant candidate anymore, and I’d be inviting other issues to my body.

Something had to be done – and pronto.  I knew that all this dialysis sugar water is the culprit – and it was ballooning me up faster than a parade float on Thanksgiving morning in New York. I knew it was going to be tough to “lose” weight – but I had to combat it somehow, I had to stop the gaining.

The main pavilion area of NIFS. This pano shot does it no justice - it's huge. That basketball court you see on the left is an old NBA court from Market Square Arena.

The main pavilion area of NIFS. This pano shot does it no justice – it’s huge. That basketball court you see on the left is an old NBA court from Market Square Arena.

So, I signed up to my favorite gym in the city – NIFS.  (National Institute of Fitness and Sport). It’s an amazing facility on the IUPUI campus here downtown, just a mile from my apartment. They have a slew of personal trainers, group classes, and any and every kind of equipment you could ask for.  It’s a massive facility, has a 1/8th mile indoor track, sprint lanes, and an official NBA sized basketball court inside the track. (It is the SAME court that the Indiana Pacers used in the old Market Square Arena!)

Anyway, I signed up for their “weight loss” program, which includes 2 personal trainer sessions per week, a monthly meeting with the on-staff dietitian, 2 Bod-Pod assessments, 2 Fit-3D assessments, and a ton of accountability and encouragement.

My first session was April 28 … I was extremely out of shape, sore, tired, didn’t want to be there. But I kept at it. After a couple weeks I started feeling better. I was getting into the routine, I was actually liking going to the gym.

By the end of May and into June, I was on a roll. The workouts were increasing in intensity, but I was doing really good at them. I was walking out of the gym each time dripping in sweat, and feeling amazing the next day. I also noticed the scale wasn’t going up anymore. I wasn’t losing any body weight either, but the bleeding had stopped! I knew I was getting stronger, gaining muscle – but I also knew that my dialysis treatments were still going against me. So I wasn’t discouraged. I kept at it.

I muscled my way though June and into July. Before I knew it, my 12 weeks were up… in fact my last workout was yesterday.  Tonight I had my final Bod-Pod and Fit-3D assessments.  I finished the program right where I started it – at 260 lbs.  However it’s a different 260 lbs.

Something is whacky with the BodPod… over the 3 months, it told me that I gained 10 lbs of fat and lost 5 lbs of muscle… lol.. Whaaaaaaat?  That’s impossible. I am a hell of a lot stronger in every category than I was 3 months ago. My body has gotten bigger in every muscle area, I’m more defined/toned than I was – there’s no way I gained body fat and lost muscle mass.  My trainer and I figure it has to do with my dialysis treatments, as the machine is very sensitive to water in your body. I know the inside of my abdomen is a wreck, my peritoneal cavity all stretched out and displaced – because of this it doesn’t appear that I’ve lost any midsection weight at all, even though I have.  Anyway, I’m not discouraged by those numbers as I know they aren’t right for my situation.

What I do know is right is that I am back on the right track. I’m more toned, stronger, I have a habit of exercising, which is something I will need the rest of my life.  It has to be a year-round habit… I can’t just quit doing it and take 6 months off anymore. I’ll balloon up extremely fast while on dialysis, as I’ve found out.

Since the program with the trainers is now over, I’m moving on to a normal membership. I have great habits now, and I have to prove to myself that I can keep them up year round.  Rest assured I”ll be in there this weekend for my first workout on my own.  I’ll still meet with a trainer once per month to give me a program to work on and keep me in line.

My goal? Keep reshaping my body – don’t worry about what the scale says – as I know with dialysis it’s impossible to beat it like I used to be able to. I just have to work my ass off to “maintain” that scale… and replace more fat into muscle mass.

Just wait till I get a new kidney – all bets are off then – I’m gonna get into the best shape of my life!  Speaking of – I don’t want to jinx it but there’s potential good news on the horizon. I’ll just leave it at that. Trust me you’ll hear as soon as I do 🙂

— T

July 15, 2016

 

My Life as a Tetherball

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You know the old saying that Forrest Gump made famous, “Life is like a box of chocolates, you never know what you’re gonna get”?  My life in the past 9 months has been the total opposite of that. That’s because I know exactly what I’m getting every 4-6 hours: Being attached to a pole.  During my evening treatment tonight, I was thinking that my life mirrors being one of those tetherball games.

You remember them, you know how it works. It’s a pole on the playground with a ball hanging from the top by a long rope. To play the game you spin the ball and rope around, trying to be wind it around the pole.  That ball is flying around and seemingly having a blast during the game. It’s being pushed into different directions, seemingly enjoying life – back and forth wherever it is pulled… but in the end it’s always attached to the pole, no matter what.

My life is exactly like this. I wake up every day, and start off by being attached to my dialysis pole.  I go to work, go spinning about my morning, but by noon I’m wound back tight to the pole again.  I then unwind a little in the afternoon, only to find myself winding back the pole around 6pm. Then in the evening I get to bounce around a bit again, doing whatever I want for awhile, but I know that pole is always nearby… in fact I’m right back tight against it at bedtime.

So there you have it. My life is a tetherball. I get 3 breaks per day to fly around and pretend to be free, but I always end up being wrapped back tight to that pole every 4-5 hours.

But hey – I’m thankful for my life as a tetherball – it’s better than no life at all. I’m actually used to the routine.  In fact, having a normal life without a pole seems so odd – I’m not sure what I did with all my free time before.

I know one thing, when I ever get a healthy kidney, I’m stearing clear of the tetherball court on the playground! I’ll have had my fill of that game for sure.

New York, NY (Part 3)

Sunday, March 6

Wow, it’s been a few weeks and realized I didn’t recap part 3 of my New York Trip. The last day of the trip was epic fun, probably my favorite of the trip.  We started off by sleep in till about 10:00, didn’t really have a plan for the day except to visit Central Park.

But first we were hungry, and we hadn’t been to Chinatown yet! I had heard from a few people that we HAD to get handmade noodles in Chinatown.  So we got ready and hit the subway. After about 10 minutes we found our stop, and proceeded to get off the subway on an entirely new planet.

It started as soon as we walked off the train car – the subway tunnels under Chinatown were jam packed with 99 percent people of Chinese descent. It’s like we took a supersonic train to the other side of the world (in about 10 minutes) hah.  We meandered our way through the tunnel, here we are towering over everyone.  (Hey we’re big in Chinatown, hah). We went up the stairs and emerged into a beautiful sunny day.

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We walked around trying to get our bearings straight, checking out the area. We were definitely hungry at this point (it was around 1:00 and we hadn’t eaten yet) – I had no idea where to find these famous handmade noodles, but they had to be around here somewhere…. probably everywhere.  Well I decided to bust out everyone’s favorite personal assistant (Google) and decided on a highly rated one called “Lam Zhou Handmade Noodle & Dumpling”.  It was about 1/2 mile away, and we were up for a little walk through Chinatown so off we went, and saw some cool streets and sights along the way.

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We finally found the block we needed, and the tiny restaurant that got some rave reviews on Google. You could miss this place with a blink of an eye it’s so small.  There was a sign for the business on the sidwalk outside.with a glass door you could see inside. We opened the door and saw it was packed – nowhere to sit with only a few shareable tables inside.  We walked in, we appeared to be the only ones waiting so we didn’t think it would be long.

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We waited about 5 mins and were able to sit down at a table with a couple of young guys from Austria.  They were just finishing their meal but they were really nice.  After they left, some other guys took their spots. They were Chinese-Americans who were visiting from Virginia. They said they go to this place every time they are in New York, so we must have picked a good spot!  We all decided on what most people around us had, a beef noodle soup that looked divine. We also got a couple orders of the beef dumplings – one boiled, one fried.  I honestly can’t describe the heavenly tastes we were about to have.

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The soup was delicious, and the noodles were to die for.  The dumplings were like nothing I’d ever had.  The fried ones were more crispy of course – they had a good outer crunch and tender beef inside.  The boiled ones had the same amazing taste – but no crunch. We opted to dip those into our soup – oh man what a combination that was.   We had some amazing food in New York – from pizza to street dogs to this – but I have to say this was my favorite meal of the week.  So cool to experience the culture and inner city flavors!

After eating we decided to walk the Brooklyn Bridge. It was only about 1/2 mile or so away, so why not?  But to get there had more exploring to do in Chinatown on the way. This was the most amazing 30 minute walk I’d had in years – the sights, sounds, and smells of Chinatown are like nothing I’d ever seen before.  We saw street performers, farmers markets, people… People, everywhere.  All business written in Chinese lettering, we were truly in another country it seemed.

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We took our time walking to get to the Brooklyn Bridge – we finally made it and started our trek across the bridge. There’s a pedestrian walkway in the middle of the bridge, raised above the traffic. It’s a pretty wide walkway, and it’s just full of tourists and locals.  We took several pictures along the way, it’s such a beautiful old historic bridge.

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As you can see above, there are some breathtaking views of the city. We also found a lot of items left by tourists – lots of padlocks and such.  We even found Hulk Hogan posing along the way 🙂

We finally got across the bridge and decided to just find a subway  and make our way back north to Central Park.  After all, that was our original plan for the day and we hadn’t been there yet.  The nearest subway station near the Brooklyn Bridge was closed, so we had to walk another 1/2 mile or so into Brooklyn to get to the next station.  That turned out to be a blessing because we saw some cool things on the edge of Brooklyn.  We walked through this amazing park, and saw some really cool graffiti / mural art.  I also saw a pretty cool view of an image I’d seen my photographer friend Will Byington take before. I recognized the shot immediately and had to take it again.  It’s the shot below with the brick buildings on each side and a bridge column in the background… pretty cool shot!

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We finally found the subway with some girls from Chicago that we were walking with. They were really nice and went our separate ways.  After about a 20 minute subway ride we were at 59th Street, where Central Park begins.  We got off the train and walked into the park.  Oh man, I’d seen Central Park in movies and TV before but you just can’t quite imagine it until you are there.  Here it was late winter, with no greenery or garden life anywhere, but it was still oh so gorgeous. We were just on the very south tip of the park but even that part looked enormous. Vast paths and trails and hills and rock formations everywhere. It was truly “park” in every sense of the word.  Off in the distance in each direction however were these giant walls of buildings. Looking at this park on a map you can see it’s a giant perfect rectangle.  When you are in it, those rectangle walls are skyscraper buildings. It’s truly an incredible sight.  We walked around for about an hour or so… and never really left the very southern tip of the park.  The park is so huge and we only saw a tiny part of it as it was getting dark in a bit… but we did get some good snapshots.  I bought some honey roasted peanuts from a vendor and enjoyed our walk in the park.

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Well this has been a fun day right? Has it worn you out just reading it? haha… Well guess what – we still had to walk back to our hotel at Times Square (about 13 blocks)… plus we had planned on hitting an NYC nightclub that night.  We exit Central Park at 7th Avenue, and walked towards Times Square. Along the way we saw a couple of cafe/bakeries we’d heard about. We were ready for a snack so we got some giant New York Cheesecake. Check this bad boy out… this basically ended up being my dinner hah:

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Back at the hotel, I do a dialysis session and have a much needed shower.  Jen and I head upstairs to our rooftop bar while Shelley gets ready.  While we were up there we met a really cool couple from Dallas TX.  They both are TV news reporters so they had some fun stories. We were comparing our touristy things we’d done, and it was funny that these two did almost the exact same stuff we did… we even hit the same pizza joint a few days prior.

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After Shelley was ready we hailed our very first NYC Cab  (never too late, right? it was our last night!) and we were off to a club in the warehouse / meat packing district.  Jenn wanted to go to a dance club before we left so this was our last chance. That’s not really my cup of tea but hey I’m up to try anything, especially in New York.. so off we went!  We were there a few hours, had a good time but decided to call it a night before midnight.  I think the day and week had finally caught up to us, so we cabbed back to Times Square.  Here are a few pics from the club:

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After back in Times Square, we were hungry again so we got hot dogs and sausages from a street vendor – really piled on the toppings and had our first New York street dog. It was heavenly at midnight on our last night!  We snapped a last pic at Times Square, popped into a little pub for our last drink of the weekend, and that was that.

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The next morning I had a car waiting on me to take me to Laguardia… the girls still had another day left in the city but I had to depart. This is totally a posed picture in my car to the airport but it sums up my thoughts and heart that oh so loved New York City so very much!  Thanks for reading.

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Terry  (3/27/2018)

Hello! I’m back to recap more of the NY trip!  If you missed it, you can read about the first couple of days here: New York, NY (Part 1).

(note: apologies if pictures appear sideways or upside on mobile devices – not sure what’s happening – they look fine on normal computer).

Friday, March 4

We all got up around 9am, the girls went downstairs to load up on free continental breakfast. I have to say that bagel and banana was the best thing I’d ever had (it seemed) I was so hungry!  During dialyisis I was surfing Groupon for a tour package, I found one of those elevated busses without a roof. We walked around Times Square area trying to find this place – in the process walked by Radio City Music Hall, and NBC Studios, where we snapped a few pics:

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NBC Studios – Jimmy Fallon!

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Radio City Music Hall

We then walked several more blocks and finally found our tour company office.  There we got our passes for the tour bus, a ferry ride to see the Statue of Liberty, and discount tickets to the top of the Empire State Building.  We walked a few blocks to our bus stop, and after a bit we were finally aboard!

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Cheesing it up atop a giant tour bus

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atop the bus, look at all the cabs

For the next hour or so, we made around way from Times Square to the very tip of lower Manhattan. We had earbuds we could plug into the seats of the bus, the driver was talking about the different neighborhoods we’d pass on the way down. It was very mesmerizing to see the streets of New York from the top of a giant bus, you really get a great view of all the action down on the street, and unobstructed views of the very tall buildings and architecture around you. I could have rode this bus all day – it was very entertaining and educational. I learned a lot about the history of these New York neighborhoods on this ride, I highly recommend this when you visit.

We knew our ferry ride to see the Statue of Liberty left at 3:00, and our bus stopped at the pier. However we were a few minutes late, our bus got there at about 3:10 and the ferry had already left. We decided to get off the bus anyway to check out the area.  What a fun couple of places we found! We found a pretty nice bar/restaurant by the pier. We went in, had some drinks and relaxed for about an hour. We knew the next ferry was at 5:00 so we had a little time to kill. After a few drinks and shots we were getting hungry – so we decided to try the little taco shop next door. This was the neatest place – ridiculous good tacos and an old Windstream trailer to eat in, haha.  We didn’t have time to eat there – it was 4:45 at this point, and we had a boat to catch!   So we had “walking tacos” on the way to the ferry.

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the best tacos ever in the financial district of lower manhattan!

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shots shots shots!

We got to the pier just in time. There was a snack shop so we bought a couple of giant beers and boarded the boat.  It was cold and windy out but we didn’t care, we went upstairs to the open air to get the great views.  Off we went! Out on the water, Brooklyn was on one side of the boat, and Manhattan on the other. The sun had just come out so it made for some beautiful views!

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Brooklyn skyline in New York Harbor

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Lower Manhattan as we are pulling away

As we were nearing the Statue of Liberty, I was pretty much in awe of my surroundings. Here we were in New York Harbor, approaching the Statue of Liberty, just like the immigrants back in the early 1900’s. The wind was piercing cold but again, I really couldn’t feel it. Too much adrenaline and New York high! Here are a few pics we snapped of Manhattan and the statue as we floated by:

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Jenn and I enjoying the view of Manhattan

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Lady Liberty!

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group selfie! Some statue was photobombing us 🙂

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beautiful Manhattan view

The ferry dropped us off on the east side of Manhattan, we grabbed an Uber and sprinted over to Greenwich Village – to a pizza joint called Arturo’s. It was recommended by my New York friend Riz – plus it was convenient for my old high school pal Devin to meet us for dinner. He lives across the river in New Jersey, but it’s a short subway ride for him into the city. It was great to see Devin, I hadn’t seen him in a few years.  We had some outstanding wine and pizza, shared some stories and laughs for a few hours, then Devin led us through Greenwich Village to the nearest subway stop.  Here are a few snaps at Arturo’s, and walking through Washington Square at night on the way to subway:

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We trekked back to Times Square in the subway, I had to do a dialysis treatment. After that we had big plans yet for the evening – the Empire State Building at night! We actually walked to the Empire State Building from our hotel.  It was about 7 or 8 blocks… not a bad little hike, and it wasn’t that cold out.

We got to the building, and there was no line at all. We got right in, rode the very fast elevator to the top, with zero wait. Once up there you had the option of staying in a glass enclosed area (where you had great views and warmth!) or you could walk outside to the perimeter, where the only thing separating you and falling 86 stories to the ground is a metal cage-like fencing.  The openings were wide enough you could see through unobsructed for pictures… what views we had up there!

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After this adventure, we walked the 7 or 8 blocks back to Times Square area – decided to pop into a bar near our restaurant for a nightcap.  By this time it was after midnight, and we had just had one epic day.  I couldn’t even finish my glass of wine – we were all pretty much exhausted, knew we had one last epic day left – so we finally crashed about 1am or so.

The most amazing day of the trip was our last day – I’ll cover that in my next post, Part 3.  Look for that in a few days or sometime this next week!

Terry (March 12, 2016)