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

tetherball

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)

New York, NY (Part 1)

“Start spreading the news, I’m leaving today.
I want to be a part of it, New York, New York.”

Well it finally happened! My trip to New York last week was the most amazing experience I’ve ever had. Sure, my toes have wiggled in white sandy Florida beaches. My eyes have scanned majestic snow capped Washington mountain tops. I’ve smelled the foamy waves of the Pacific Ocean,  and I’ve walked the icy crags of coastal Maine. I’ve been to all 4 corners of this great land and everywhere in between – but these eyes have never seen anything more beautiful, spellbinding, addicting than New York City.

Wednesday, March 2

I met Jen and Shelley at Laguardia.. we arrived about the same time, about 7pm or so. We shared a car service to our hotel near Times Square. But this wasn’t just a normal car ride, this was my first trip ever into NY.  Once we got close enough to Manhattan to see the ginormous nighttime skyline, I was in awe. I couldn’t believe a city could look so big and powerful.  Within a flash we were in a tunnel, and within a few minutes we popped back up and were in the middle of this monstrocity that is Manhattan. The game was on!

We got to our hotel, checked in, I did a dialyisis treatment – then we were itching to see Times Square and get a bite to eat.  We walked the two blocks to that “glow” down the street. Times Square must be that way, haha! Once we entered Times Square, I was in awe.  Doing 360 degree turns, I saw giant buildings and lights in every direction. And people.. people everywhere. It was 9pm on a Wednesday night, but it may as well have been a Saturday night. This place never shuts down. Here’s the first picture I posed for in New York, in all of Times Square glory:

(Note: If you are reading this on a smart phone, the images may appear sideways, upside down, inside out, I have no idea why… they look fine on a normal computer screen.)

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My first ever pic in New York

After walking in a few circles and gawking at all the lights, we decided it was time to grab something to eat.  Now I had some big plans on cool places to eat in New York, but at this point we just needed ANYTHING to eat – so we walked down a side street and found about a million Irish Pubs… so we popped into one.  I can’t remember the name of it but I’m glad we chose it, as our server was the most helpful guy ever. He recommended a bunch of places for us to eat and drink around Times Square since we had a Broadway show nearby to see the next night – places he as a local would recommend. Very cool guy, glad we met him.

After dinner we wanted some wine – so we walked what seemed like forever to Park Avenue, where we found a very swanky wine bar called “Lea NYC”. It wasn’t a super pricy bar, but it was very nice.  Dark and red on the inside, very high ceiling, with a Gotham City sized wall of liquor behind the bar:

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Wine Bar – LeaNYC

After a bottle of wine to share, we decided to call it a night.  We walked back to our hotel (about 5 blocks or so), I did my last treatment of the day and crashed.

Thursday, March 3

The first item of business today was to get the tickets to our Broadway show “Kinky Boots”, starring actor/comedian/game show host Wayne Brady. You probably know him best from “Who’s Line Is It Anyway”, or “Let’s Make A Deal”. I didn’t really care which show we saw. The girls picked this one out so I was happy to oblige. I’d bought us tickets in advance but I’d forgotten to pick them up in Indy… So our mission this morning was to find a Ticketmaster Retail location in Manhattan.  We found this as a perfect opportunity to ride the NYC subway for the first time!  We mapped out a record store in Greenwich Village where we could get our tickets, so off we went.  We walked a few blocks to the nearest subway tunnel, figured out how to buy our week-long subway pass, and before you know it we were in a train and rumbling south.  One thing I learned very fast is that Google Maps is your BEST FRIEND in New York when traversing the subways. Another thing I learned very fast is to find out which stop you need to get off on BEFORE you go underground, haha.. Phones don’t work down there 🙂

We found our stop, and made our back back up into the daylight. What a beautiful area Greenwich Village is. It’s an old historical part of town. The buildings aren’t as tall here, it’s more of a “village”, hence the name.  Some very famous musicians used to grace these streets, including Bob Dylan.  We walked around for awhile trying to find the record store, in the process we walked through New York University – such a gorgeous campus next to a really pretty park (Washington Square). Here are Jenn and Shelley posing in this neighborhood:

Jenn and Shelley posing on campus of New York University

Jenn and Shelley posing on campus of New York University

We got the tickets and decided we needed lunch. I knew just the place – the Little Italy neighborhood was nearby.  We got back on the subway for a short trip there, and popped up in this pretty little village full of Italian heritage. We found the pizza place we wanted – Lombardi’s. It was recommended by my friend Riz, who is a New Yorker.  Little did I know how blown away I was going to be by New York pizza, specifically Lombardi’s. It was the best pizza I’d ever had in my life. It’s hard to explain. The crust, the sauce, the fresh mozzarella, the coal oven taste, the meats, it was simply heavenly.  Here are a few shots at Lombardi’s and the streets of Little Italy:

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Me posing at the LIttle Italy sign

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The best pizza I’ve ever had in my life, at Lombardi’s in LIttle Italy

 

 

 

 

 

 

 

 

 

After eating, we did some more sightseeing in Little Italy, then decided we had to get back to our hotel to get ready for our Broadway show. So back in the subway we went, heading north this time. Within 10 minutes we were back in Times Square… man those things are fast!

Ok – now it’s time for a funny side story. Originally there were supposed to be 4 of us on the trip. Jenn invited two of her friends (Shelley and Andrea).  So we bought 4 tickets to the Broadway show. Unfortunately, Andrea was very very sick the week of the trip, so she had to cancel.  She offered to pay me for the ticket, which was the original plan.  However, something about being in New York makes you feel adventurous. Makes you feel like doing something you wouldn’t normally do.  So – of course I got on the “Tinder” dating app, haha.  Now, the intent here wasn’t to find a date – I was there with friends, I was happy with that.  The intent was to give away a ticket to Kinky Boots. I offered it to a really nice girl named Rachel, who lives in Brooklyn.  I told her that it wasn’t really going to be a “date”, that she’d be with me and 2 other girls, and that we just had an extra ticket to give away.  I told her nothing weird was going on, and it is what it is.   She replied with “I’m in… plus I’m from Israel, it takes a lot to weird me out” haha.   Soooo…. I met Rachel in Times Square just before the show. We walked to the theatre together, met the other girls there, had a blast at the show, the 4 of us had a fun dinner after.  Rachel went back home to Brooklyn around midnight, and we never saw her again the rest of the trip.  So yes, a random Brooklyn girl got a free $150 ticket to a Broadway show. So THAT was a fun little side story.

Ok – so now I have to talk about the show itself. I’m not a huge play/musical person, but I do appreciate the arts and enjoy them when I get a chance. I had only seen one Broadway type show before (in Indianapolis many many years ago), I do remember enjoying it. So I was excited to experience this directly on Broadway.   We arrived at the theatre, and I was instantly charmed by it.  These Broadway theatres are very old… like over 100 years old easily. You walk in, the moldings are old, the seating, the facades, the stage, everything. It’s so authentic, you feel like you just walked about 100 years into the past.  But when you add in the modern lighting and sound systems, and theatre props, it’s a truly mesmerizing experience!

The show was outstanding. Full of music, dancing, funny dialogue, and top notch audience appreciation. There’s truly nothing like it in the world.   We weren’t allowed to take pictures inside, but I did get a few shots outside after.  Here are the 4 of us having fun by a marquee outside, and then one of me and Wayne Brady himself, who came out to meet fans 🙂

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Rachel from Brooklyn, Shelley, (Wayne Brady’s character Lola), Jenn, and Myself outside of the theatre on Broadway

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Myself and Wayne Brady… He’s actually taking the selfie here 🙂

 

 

 

 

 

 

 

 

 

After the show we found this great little restaurant around the corner from the theatre. We wined and dined in this little dive with GREAT food. Hung out laughing, trading stories till after midnight, when our Brooklyn friend had to go home.  She left, we left, and called it a night. What a first full day in New York! We had experienced so much already, and we still had Friday and Saturday to go!

Part 2 (Friday and Saturday) will be my next entry – maybe later this week. Stay tuned!

To see ALL of my pictures from the trip, click here to go to my GOOGLE DRIVE.

Terry (March 8, 2016)

 

6 Month Report Card

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Greetings, Earthlings! Here it is late February, and I just realized that this month I hit my 6-month mark on being on dialysis. It’s been a pretty interesting ride, with ups and downs. There have been some bumps, but just like driving on any bumpy road, you learn how to slow down. You learn how to use the high-beams and see them in advance, so you can turn the wheel to avoid them. Being on dialysis brings bumps to every road in life.

Instead of just idly rambling about different things, I thought I’d have some fun and structure this like a report card. You know, like back in school. Consider this my “mid term” assessments in my first year of treatment. I’ll break things down into Subjects – and talk about how daily dialysis treatments affects my life in each one.

Biology
Ok – so I’ll start with the one that blows my mind the most. The human body is a flat out miracle the way it works. Sure, we all know the details of each system that runs our body. Mankind has learned a lot about itself over the thousands of years it’s been studied, but let’s be honest – most of us don’t even think about it. We wake up, our hearts beat, our lungs fill with air, we see the sights, we hear the sounds, we smell the sweet aromas of life every day. We eat, we drink, we indulge from time to time, without even thinking about it. We may overdo it sometimes, and we feel like crap, but our body is an amazing machine that recovers pretty quickly.

Your kidneys play a major role in that. They help keep chemicals in your body balanced. They remove waste products and extra water from your blood. When your kidney’s aren’t working very well, you basically feel like crap. Your body gets exhausted trying to function normally with all the contaminants still in it. Since my kidneys aren’t working very well, they need help filtering my blood. Enter kidney dialysis.

I know that dialysis doesn’t do all the work that healthy kidneys do. In fact, it only does about 10% of the work. But let me tell you, you can feel every bit of that 10% and you count on every bit of it. That 10% makes me feel pretty close to normal most of the time. I do find myself very tired in the evenings, but it’s seems like a normal tired. I still go out at night on occasion but most nights I’m happy to be at home resting, and going to bed at a decent normal hour. Based on the way I feel most of the day, and positive feedback from my doctors, I’m passing with flying colors on the Biology front. While my natural body gets a failing grade here, my mind and treatments give me a solid “A” grade here.

Economics
It’s mind blowing how much money it costs to be sick. It’s no secret how expensive health care is today’s world. Some people have a much better setup than others with health insurance. I’m very thankful that I have excellent health insurance. Without it, I wouldn’t be able to get the excellent care I’m getting. Being single makes it even more affordable. I’m on an HDHP plan. That means I pay a very low monthly premium, but have a high out of pocket deductibe. For example – as a single guy, I pay the first $3000 out of my own pocket each year. Doctor visits, prescriptions, labs, anything. There’s no “80/20” or co-pays. If I go to the doctor in January, and the office visit is $300, then I pay $300. Simple as that. HOwever, once I get to $3000 on the year, everything is 100% paid for by insurance.

Since my dialyisis treatments cost almost $2000 PER WEEK – you can see that I hit that $3000 threshhold super early in the year. Like in the 2nd week of January. That’s why my insurance is so good. Sure I have to lump out a pretty big chunk of change early in the year, but after that everything is 100% paid for by insurance. Medicines, doctor visits, labs, anything, everything. I’m so very thankful for that.

Because of my job and my insurance – and being a Medicare recipient (that comes into play whenever we start talking Transplant – but that’s pretty complicated so I’m not gonna get into that here) – I give myself an “A” in Economics. I honestly can’t ask for a better setup.

Social Studies
Social Studies… or in this case, let’s talk about my social life. Before I got sick last year, it’s no secret of my lifestyle. I’ve never been married, no kids, and trust me I took advantage of that lifestyle. I traveled a lot, was always out with friends, always on the go. I was very spontaneous, impulsive, and never made plans. Always lived by the moment. People would ask me what I’m doing that evening, I’d say “I don’t know, I’ll tell you this evening”. It’s just the way I was, and I thrived on it.

I’ve definitely had to put the breaks on that way of living in the past 6 months. I have no choice but to plan ahead for things now. First and foremost, I know I have to be fairly close to home most of the time, or at least plan ahead to take treatments with me. Since I have to do treatments 4x per day, I definitely have had to adjust to structure. Living where I do really helps in that regard. I live in a very hip, active area of town, so it’s very easy to be out and about for fun, and pop back into home for treatment whenever I need to.

I’ve learned that I can still travel. My dialyis company has the ability to deliver supplies to any hotel in the country for me, with advance planning. I had 5 days worth delivered to Miami for my vacation last month, and here in a few weeks I’m going to New York City. I’ve already made plans to have it delivered to my hotel there. I plan on seeing all the sites in NY with easily being able to pop into my hotel for treatments when needed.

I have had to set limits to myself in my social life. While I’m still able to go out with friends anytime I want, I do it now with a set limit. I know I have to be home at a decent hour for my last treatment of the day. I know I need more rest than I used to get. Going to bed at 10 or 11pm on a Friday night doesn’t seem so “lame” anymore. In fact it’s a crucial part of my lifestyle now – to get rest and feel good each day. It’s the only way I can function, as my body is severely handicapped in it’s efforts to “feel good” naturally. So I need to help it all I can.

With the limits I’ve set on myself, I can honestly say I haven’t missed a beat. I still go to concerts, vacations, restaurants, and any other social gathering I used to go to. I just set a time limit for myself now. It’s worked out very well!

I’ve even started dating again – for the first time in a long time. At first I didn’t really know how to tackle that. How do you tell someone you’re interested in “Hey, I really like you – I think we’d have fun together. Oh, but I need a kidney transplant and am on dialysis for awhile, I hope that’s not a big deal”. It’s one of those things where you wonder “at what point do I bring this up”? Do you do it right up front, so there are no surprises? Or do you go out a few times, and if you see things progressing – then you talk about it? Or is that considered not being honest up front, and putting the other person in an awkward position? I dunno. So far I’ve opted to let the person know up front. The few girls I’ve gone out with were very cool and didn’t seem bothered by it. But then again they aren’t around anymore so who knows, haha. Kidding. I’m just glad to be back out in circulation again. I was dormant for so long in that regard. I am getting more comfortable with it so it’s not as awkward to talk about up front anymore.

I’m gonna give myself a solid “B” here in Social Studies because I know there’s room to improve and I’ll get better.

Spanish
Quiero hablar español! (I want to speak Spanish!) Why? I have no idea. I only took 1 year of Spanish in 9th grade, so it’s not like I could ever speak it before. But I figure it’s the 2nd most popular language in America, so why not try to learn some of it? Anyway – I figure since I’m chained up to my dialyis pole 4x per day (for 30 minutes at a time), I might as well do something productive with it. I bought the Rosetta Stone course for my iPad last year – and I must say I’ve been very consistent with using it. I probably do about 45 or so minutes per day on it. It takes a looooong time to do this course, and you have to be consistent with it. In fact, I’ve been doing this consistently for 5 or 6 months now, and I’m only about 1/4 of the way through the course. I’m still in the beginnings/basics so I haven’t learned a whole lot yet. It makes a lot of sense when it’s in front of me, but I can’t really use it in real life practice yet. The course is structured to teach you how to do basic life interaction functions. How to talk to a store clerk, or a waiter, how to ask directions, how to inquire about public transportation, etc… It’s very very basic so far, but challenging. It already “clicks” in my brain when it’s in front of me in the course – but I can’t wait for it to “click” when I’m out and about walking around on my own. I’ll get there. In the meantime I’m LOVING these courses and actually look forward to dialysis now so I can study Spanish! Out of the 2 hours per day I’m hooked up, probably almost an hour of it is practicing Spanish.

My goal is to write a blog post completely in Spanish someday – but I’ll give that some time. Maybe late summer I’ll give that a shot. It’ll be a short entry though hahah.  My current grade in Spanish?  haha… well – the courseware so far thinks I’m making an “A”… and I suppose I am… however I am definitely a novice. I’ll give myself a Kindergarten grade here.. how about “S” for Satisfactory, haha.

Physical Education
I’ll tell you what – if there’s anybody who can’t wait for the Spring thaw it’s me. I’m jumping at the bit to get outside. To start walking and riding my bike again. It’s been a long cold winter and I have to say I haven’t exercised much at all. When I first started dialysis I started gaining a few pounds, and the reason for that was two-fold. First, my body was adjusting to having all this dialysis sugar water sitting in it 24/7 (it really packs on the extra calories), and also because I basically quit exercising once Winter hit. I did by a spinner bike, and I do use it once per week, however I need a more structured exercise schedule. I prefer the “natural” exercise… like when I want to go for a long walk or a bike ride – those things are non existent in the frigid Indiana winter. Today it’s in the 60’s in February – which is like a heat wave – so after writing this entry I’m going to go out for a walk. I’m sure there are a lot of people out today!

Thankfully I’ve quit gaining weight though. I’ve changed my treatment solution schedule up a bit – and I haven’t gained a pound in the past few months. I haven’t lost any either – but I really haven’t been trying. Once my daily exercises ramp up in Spring (very soon!) I’ll start to see that scale dip down again. But I’m perfectly happy with where I’m at right now, I’ll let that stuff happen naturally in the coming months.  But, my P.E. grade so far? We’re gonna have to go with “C” – as I definitely have to ramp that up.

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Well, that’s it, there’s my report card… Pretty long entry, but I was bored and wanted to let you guys know how I’m doing. You can probably tell I’m doing ok based on my Facebook posts and when you see me out and about. I’m just sitting around waiting on a transplant match. I do have some positive news there but don’t want to jinx anything – I’ll write about that when things come together. It just takes awhile. I have had a few living donor matches, but it just takes a long time for that process to pan out. Wish me and my potential donors luck on that.

If you’re just now reading about this for the first time, and are interested in learning about being a living kidney donor, please read THIS BLOG POST… all the info is in there. Thanks for being a great friend and person and thanks for reading!

I’m earning my PhD in Traveling on PD

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… because I’m going on THE ROCK BOAT next week! I’m not going to go into details of this amazing trip, if you know me at all you know I’ve done this trip every year since 2004. It’s basically a floating concert festival with about 20 or 30 bands and a couple thousand of the best people you’ll ever meet.  There are a lot of repeat visitors like myself – and lifelong friendships have developed over the years.   This year’s trip was planned and booked all in the past week. Why so late in the game, and how did it come together?  Grab a cup of coffee and read on.

If you read this blog at all, you know the ordeal I’ve been going through in the past year. How I felt really bad, exhausted, fatigued for several months. How I reached Stage 5 kidney failure, started hemodialysis and eventually switched to peritoneal dialysis. If you want details on all of that, read previous entries. But for now, fast forward to today’s topic – traveling on peritoneal dialysis (PD).

It’s no secret I like to travel. I do a lot of short trips here and there. I realize that with my new lifestyle that I have to be more realistic with my social life and traveling, and do what’s best for my body as opposed to my keeping my old habits. I have drastically cut back on my social outings, I stay home a lot more than I used to, but I still get out on occasion.  The same goes with traveling.

My first trip was a weekend in Washington DC with my sister and her husband. I was able to travel via plane with 2 days worth of dialysis fluid. It was a heavy haul but I managed it, and was able to do my treatments in the AirBnB house we rented.  I was able to sightsee in Washington and zip back for treatments whenever I needed to. It worked out really great, and I had the energy to last all weekend – just like a normal person.

My second trip was a piece of cake compared to that one. I drove to Chicago for a weekend. It’s easy to haul a few days worth of supplies in a car. I was able to do my treatments at my friend Amy’s place in the city, which was easy to zip to and from for treatments while we were out and about doing things.

Now back to the Rock Boat. This is a trip you typically book many many months in advance. It costs a lot of money and takes planning for flights, hotels, and paying cruise fare.  Because of all the things I went through last summer, I decided to not even book the Rock Boat for 2016. I didn’t know what kind of dialysis I’d be on, if I’d be laid up sick, or even if I’d be having kidney transplant surgery. I honestly had no idea about my future so I didn’t book it.  No big deal, it wasn’t a big issue – I can skip a Rock Boat for sake of the rusty kidneys.

Well about a week ago. I received a call from my very amazing and good friend Andrea. She and her husband Scott are long time Rock Boaters. I talked them into going 7 or 8 years ago, and they have gone back every year. They had a baby in July 2014. They attempted Rock Boat last year but had to fly home (the morning of!) for an emergency with their baby. He’s fine thankfully 🙂  So here it is a year later – they had booked TRB again – but as time came near they decided that one of them should stay home with the baby. He’s not sick, it’s just parental instinct, not wanting to leave baby behind with both of them gone, and probably fear of last year happening again.

Andrea called to offer me Scott’s spot on the boat – to room with her on the cruise.  To me, money wasn’t the issue – I have money to pay. But I declined for the same reasons I didn’t book in the first place – just because of the logistics of it all. This isn’t one of those “carry-on” trips like Washington for a couple days.  This is 7 nights – with 5 of them on a cruise ship.  How in the world would I get 7 days worth of dialysis fluid to Miami, then onto a cruise ship?  I can’t fly with that much. This is why I never booked it in the first place.  Just too much hassle.   So I politely declined – despite the offered monetary deal, which was basically next to nothing.

Later that day, Scott gave me call – giving me the same offer. I reminded him of the logistical issues, and how it would be even tougher to pull off last minute.  I knew that my dialysis clinic offered delivery to any city in the U.S. – but still, it seemed like a nightmare to deal with it. But to satisfy curiosity, I told him to hold off on offering to anybody else for a few hours – and I’d call him at end of day.  Here’s what I found out that afternoon:

  • I called a few hotels near the port, asked if they’d receive and store a shipment of dialysis fluid for me, a few days prior to my arrival.  One of them said “yes”.
  • I called the Norwegian Cruise Line, asked about their policy with peritoneal dialysis patients. They said they do accommodate us with no problem. It’s just a matter of getting my supplies on the ship, which is usually done by the dialysis company directly. They let them on board and the items are delivered to my cabin.

That’s all I needed to hear. I got very excited, and felt like James Bond for a second. I’m really pulling off a crazy feat here – so I called Scott back, told him “i’m in!” and set forth in booking everything.

I used points I’ve accumulated for a free flight.  I also used points for a free hotel night in Miami before the cruise.  I’m staying an extra night in Miami after the cruise because (a) why not? (b) flight is  a LOT cheaper on Monday (it made the extra hotel night a wash), and (c) I’m sure a relaxing day and night on land before flying will be good for my body.  Plus I won’t have to do any dailysis exchanges in an airport the day we get back.

So here’s my logistical plan:

  1. Plan for 7 days worth of dialysis fluid to be shipped to my Miami hotel (DONE)
  2. When I arrive at hotel, take 1 day’s worth to my room.. Leave remaining boxes in hotel storage until next day
  3. On boarding day, load up 5 days worth onto the hotel shuttle van (leave 1 box behind at hotel for the night that I return from cruise)
  4. Call the pier supervisor for Port of Miami (he’ll be expecting my call, per NCL Access Staff)
  5. Meet pier supervisor at the terminal where I’m dropped off, he’ll handle logistics of getting my supplies to my cabin… offering any assistance or special porters I may need.
  6. Make sure I have a couple extra treatments with me in a backpack as I board, in case there are delays getting my supplies to my room.
  7. ENJOY ROCK BOAT XVI!!!!!
  8. Get back to hotel in Miami after cruise, where I’ll have a box of supplies left from several days prior.
  9. Rest up, fly home next day.

I plan on having the time of my life. The biggest difference is I won’t be indulging in all those buckets of cerveza that I usually do.  I can drink alcohol – that’s not an issue. I just have to watch the amount of liquid in general I take in. That includes water, cola, juice, alcohol, everything.  A dialysis diet means I have to eat a lot of protein. That’s not a problem on a cruise ship.  The problem is – the copious amounts of salt and libations available to you.  I can have both – but in moderation. Otherwise I’ll bloat up and start retaining a ton of extra water.  My dialysis gets rid of this extra water – but it can get to an extreme level on a cruise ship.  So I just have to be careful with my intake.

If you’re reading this and you’re on the Rock Boat and you see me with a drink in my hand, don’t think anything bad – I’m allowed to live, enjoy myself, and relax on vacation – I just have to be very responsible on the volume.  That’s my plan of attack.  (In other words, don’t be shy about offering me a teeny tiny shot once in awhile haha…)

Anyway kids – I’ll see you on THE ROCK BOAT next week!

Terry (1/19/2016)

(All images/graphics courtesy of Sixthman / Will Byington Photography)

SisterHazel

 

 

 

A Life Opening Gift

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Check out the picture. In my hand is an ordinary letter opener. It was given to me as a gift from someone about 15 or so years ago. It came in a set of small knives that look similar to this. I still have the knives but never really use them for anything. I do use the letter opener though. I’ve used it all these years, it’s been a handy dandy little tool.

Why in the world am I blogging about a letter opener, you must be asking yourself? Well as it turns out, it’s more than a letter opener. It’s also opened my eyes, my brain, my heart, my drive to continue every day.  The box in the picture – that is a box of peritoneal dialysis fluid. This box contains 5 bags of fluid that I put into my body, then drain from my body.  I go through 4 bags every day.  So by doing the math, you can see that I have to open one of these boxes up almost every day.  After about a month of ripping the tape off with my hands, or using my keys to jaggedly cut the tape, it dawned on me that my “letter opener” would make a hell of a “dialysis box opener”.

Again – you’re wondering – why in the world am I blogging about this letter opener? Well hang on. Remember I told you that it was a gift from a long time ago?  The person who gave it to me was my Uncle Jim.  A small handful of years after he gave me this gift, he died from complications of kidney failure.

Ding Ding Ding… there’s the “ah-ha” moment.

Uncle Jim has been gone almost 13 years now. He was by far the funniest guy I’ve ever met. From his wise cracking jokes to his comedic demeanor, he always had us laughing.  His sons (my cousins Mike, Jamie, Joe and Jake) are like brothers to me, we all grew up together. We’d always kid around – talk like Jim, act like Jim, basically emulate him because he was so damn funny.

His last few years were really rough on him. He was on hemodialysis, and his body was breaking down from complications. His body wasn’t strong enough to hang on, and he wasn’t eligible for a transplant.  He died in 2003 at age 53.

Fast forward to 2015 – here I am, age 45 and on (peritoneal) dialysis myself. Luckily, I’m a lot younger and stronger than he was – my body can handle dialysis and medication, and I’m a prime transplant candidate.  Uncle Jim knew about my kidney condition before he passed – he always told me to keep close tabs and take care of it when I have to.  Well Uncle Jim, here I am – following your advice. I’m doing all the right things, taking all the right steps, and I’ll be damned if I’m not using the letter opener you gave me to open my peritoneal dialysis fluid boxes every day.

That gift you gave me was more than a letter opener. It was an opener of life – as that what it gives me every single day.

 

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Pictured, in December 2001: My Grandpa Clark, Jim’s boys Mike, Jamie, Jake, then Uncle Jim, then his other son Joe.