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Transplant News

Hey there! A lot of you saw my Facebook post last week and know the good news, but I thought I’d make an official blog entry to put in more details.  We’re getting close to transplant time! There’s no actual date yet, but there will be shortly.

Getting to where we are now has been a very long, strange chain of time periods and events, I’ll try to explain everything that’s happened, and touch on a few things that went wrong along the way too.

As you’ve read in a previous post, my cousin Dennis has been on a very dedicated journey in getting approved to donate one of his kidneys to me. It’s been a very long road for him, and he’s stuck with it and deserves all the praise in the world. What a great guy.  He’s lost almost 70 lbs, and has done countless lab tests on pretty much every system in his body.  I can guarantee you he’s been through more testing than I have through all this.

Back to my chain of events… back in 2015 I did my initial testing for transplant eligibility. There’s no sense in looking for a donor if I can’t receive a new kidney, right?  Well I passed everything no problem.  I was in great health otherwise, and was at an acceptable weight.   The problem was, Dennis was a great match for me but he was too overweight to donate.  So he set on a 1.5 year journey to lose 60 or 70 lbs.  During that time span, I was doing Peritoneal Dialysis . This is a method of filtering your blood by pouring a dextrose(sugar)-water solution into your abdomen, which pulls excess water and toxins from your blood (through your blood vessel walls), and into the solution.   You then “drain” the dirty water, and “refill” with clean solution 4 times every day.

This is an amazing method, I can’t believe it actually works. I did this for two years – my numbers were great, I felt great, it was working wonders for me.  The bad part was – at the same time it was pulling bad things out of my body, it was also pushing a lot of calories INTO my body.  My body was taking in an influx of several hundred calories per day by doing these peritoneal dialysis treatments.

I tried to battle this seige of daily excess calories. I went to the gym 3x per week, rode my bike, walked, was as active as I could be when I had the energy to be.  I ate healthy (for the most part, I’d splurge like anyone else once in awhile), but almost immediately after starting this treatment two years ago I noticed the number on the scale was rising.

All told, I’ve gained over 40 lbs in the past 2 years.  So – while Dennis was losing all his weight, I was gaining all mine.  I knew it was a race for our lines to cross at an appropriate time on the “weight” lines, but the ugly reality is, after he was at his target weight, I was over mine.

Here’s where the gray areas come in… The problem was, I didn’t know I was too overweight for surgery.  I was supposed to have a “yearly evaluation” with the transplant team.  I had the initial evaluation in August 2015.  But come August 2016, nobody called me for a yearly evaluation.  I knew Dennis was still quite a ways off from his goal, so I just let it slide.  I had gained about 25 lbs that first year, but I was going to the gym, I was feeling good, so I just shrugged it off and I continued my treatments.  Finally, in April 2017, I realized it had been 1.5 years since my last evaluation.  I had gained another 10 lbs, so I was up about 30-35 lbs now.  I decided to call the transplant center to ask for another evaluation.

They brought me in, was surprised (and apologized) for not calling me in 6 months ago.  I re-did all my lab tests, and went on my way again.  Nobody from the transplant center called me for a followup, nobody called for me to see a doctor, etc.   So naturally I assumed I was “good to go”.  I’d gained 30 lbs but I must still be good since nobody called me back, right?

Now it’s 6 months later (October 2017), Dennis is now at his goal weight, so they call me in for my final transplant evaluation.  I see a doctor this time, and much to my horror he told me that I was probably too overweight for the surgery.  I’d gained too much weight since my last assessment which “was in 2015”.

I told the doctor that he was missing some info, I was tested in April 2017, I did a bunch of labs but was never called in to see a doctor. I told him that I’d only gained about 5 or so lbs since April 2017 (I’d lowered my dialysis strength to save on calories)….  I told him that if someone would have told me in April 2017 that I was too overweight for surgery, I’d have been back to Hemodialysis way back then to start losing weight.

I don’t know the reasons why I never saw a doctor back in April 2017 – whether it was a bad counselor that I had, or miscommunication, or whatever – the important thing is, I have a new counselor now and she has been very good in communicating with me in the past few weeks.

Anyway, back to the doctor I saw here last week – he told me I was too overweight for surgery, and I’d have to lose weight.  My heart sunk. I was so upset that nobody had told me this before. He then did me a favor by texting the actual surgeon, who was in the office that day.  He popped in and did a visual inspection of my body.  I had my PD solution in my abdomen that day (imagine a giant water balloon in your belly, it’s basically what it is)… He said that I appeared to be too overweight that day, but it wasn’t a fair assessment since I had the fluid in me.  He told me to come back the next day “empty” so he could get a better judgement on it.

So the next day, I go see him (the surgeon) again.. “empty” this time… nothing in my abdomen. He laid me down on a table, felt my tummy a few places, pulled back and said “ah, you’re good, you’ll be even better in 4-5 weeks”.   He did say that I was right on the border of being turned down though – and to not gain any more weight.  In fact he wants me to lose a little.

So in short – both Dennis and I are approved for surgery, they just want me to go about a month without PD, to lose a few lbs.  There’s no “goal weight”, but he wants to see a downward trend.

So that’s where we stand now.  I immediately stopped peritoneal dialysis – I started back on Hemodialysis this past week.  I’ve already had two sessions this week (Tuesday and Thursday), and I go back tomorrow (Saturday).  That will be my weekly schedule.

My body is going through a big change this week. Since I’ve been carrying around 6 lbs of water in my belly for 2 years, you can imagine the “void” that’s left down there. I’m actually really sore being “empty”, but it’s getting better every day.   I’ve started jogging again, which I haven’t been able to do in 2 years. (it was really tough before with all the water sloshing around in my gut). I’ve even lost about 5 lbs in the past 5 days – that’s amazing as I’ve done nothing but gain in the past 2 years!

I’m devoting this next month to losing as much weight as I can.  I’m hitting the “fad” dieting hard.  I’m not following a single diet plan, I’m just cutting out any and all carbs, eating nothing but healthy meats veggies and fruits, and exercising like there’s no tomorrow.  I’m not going all “Paleo” again, but pretty darn close. It’s basically a short term “fix” – once I get through surgery I’ll get back to my normal lifestyle, which was already pretty darn healthy to begin with.

My counselor said after a month or so we can schedule the surgery (assuming everything is still ok with Dennis) – and right now their schedule is pretty empty for November.  So we should be able to get a date pretty quickly after my month of Hemodialysis.

Terry (Oct. 2017)

 

You Can’t Just Brush Time By Faster….

Here’s a back story. About 5 or 6 years ago my dental hygienist recommended this electronic toothbrush. She said it has a fancy timer, fancy brush heads, and gives you a cleaner brush than you’ve ever had in your life. You use it for two minutes, and it vibrates every thirty seconds to let you know when to switch to another part of your mouth, and has a fancy digital display that rests on the sink.

(Don’t worry, this topic of this entry isn’t to explain how to brush your teeth. I’ll get to the point, just bear with me for a few minutes. 🙂 )

At the time this fancy brush seemed pretty pricey, but hey, I figured it was a good investment. So I bought it and started using it. At first it was kind of a pain. I never realized how long two minutes seems when you’re doing something like brushing your teeth. I always manually brushed for like a minute tops, on a good day. It just seemed to take for-ev-errrrr to brush my teeth for two minutes twice per day. Seems crazy right? Do you know how long it takes to stand there and brush for two minutes? (Don’t answer that. Yet.)

So – after a few years of this, I started getting sloppy with my brush strokes. I was tired of brushing slow methodical strokes for two minutes each time. It’s very monotonous. So instead of the slow, smooth, even strokes I’d been doing, I decided to brush really fast. Rapid back and forth motions, anywhere and everywhere, rampantly all over my mouth. Pressing hard, smashing the brush against my teeth, I was like a Ninja on a mission. No rhyme or reason, the point was to “hurry up and get this over with”.

I did this for weeks… actually several months. At my next cleaning, my hygienist noticed I had more buildup than before. She asked if I was still using my new toothbrush. I said “of course, in fact I’m brushing harder and faster”. That’s when I got my scolding and I had the light bulb moment. Instead of cleaning my teeth the right way, I was rushing through the process, going 100 mph, making it “seem” like I was brushing faster… but you know what? I was still brushing for two minutes. Brushing for two minutes, but not getting my teeth clean.

Finally the moral of the story – you can’t rush through time. Time is time. Two minutes is two minutes. A month is a month. A year is a year. No matter what you are going through that you wish was over, use that time to your advantage in any way you can. Don’t just rush through it and waste it away.

I’ve been on dialysis for 2 years and 1 month. The first year I was rushing through it. I was going on vacations, going out a lot, trying not to be phased by my handicap. I was wearing myself out. I finally realized that I had to slow down. I had to live by my new limitations, to relax and enjoy life as it came to me. So that’s what I did during the second year of dialysis. I still went out on occasion, but I took more extended relaxing breaks instead of all the “go go go breaks”. I’ve really enjoyed the pace of the second year over the first year.

Do you want to know the cool part? The first year lasted 365 days… and the second year lasted 365 days too. Neither went faster than the other. Remember that as you go through different segments of your life.

Well look at the clock – it’s time to go brush my teeth.

Terry

Rounding 3rd and heading for home…

Good news! Dennis has completed and passed all his medical testing. They’ve approved him for the final steps, which are a handful of final interviews with counselors and surgeons, then sending our info to the transplant board at IU Health who makes final decision. We see no reason why they’d say no.

His interviews will take place on Sept 29. After that, all our records are presented to the “Board” for transplant approval. That should take place sometime in October. After that we can schedule surgery. So, assuming no more roadblocks, we are guessing all this will go down in November. It’s been a long 2+ years! So I can handle a few more months 🙂

Terry

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