Halloween update

Hiya gang.  Remember my last blog post where I said I got my surgeon’s approval for moving forward with transplant? How all he wanted me to do now was to get off of Peritoneal Dialysis (PD) so I’d stop gaining weight, move to Hemodialysis for a month and lose a few pounds, and we’d schedule surgery in a month?  That sounded great to me! Dennis was all approved, and now the surgeon told me directly that I was good to go in one month.  I got really excited, told everyone I was pretty much approved, and the one month wait began.

Wellll…. I got some pretty crazy news today. My dialysis nurse had me read and sign a “Care Plan” document, which basically outlines my goals of being there.   I read about my “weight loss” goal for being released for transplant. I couldn’t believe my eyes, the number they listed was MUCH lower than what I was led to believe by the surgeon.  I asked about this number, she told me not to worry as that number wasn’t the expected weight loss, it was more of a general guideline for the dietitian.   Ok, I was relieved, because that number was about 25 lbs of weight loss.

But then the nurse went to her office, and came back and said “but you do need to lose 12 more lbs for transplant release though”.  To this point, I’ve lost about 7 lbs… a pretty good clip in 3 weeks. The number that the nurse gave me today is that I have to lose 12 MORE lbs than I already have 😮 That means from the beginning, I was apparently expected to lose 19 lbs.

This is “news” to me – as my surgeon and counselor told me (a month ago) to “go to hemodialysis for a month, and lose a few lbs”… that was it. Well, I’ve been here 3 weeks, and have lost 7 lbs (I’d say that counts as “a few”). They made no mention of a certain weight, and certainly no mention of 19 lbs in total. My counselor has been calling the clinic on a weekly basis, checking my weight.  Why would they call each week if they wan’t me to lose 19 lbs? No way I can lose that in a “month”, which is when the surgeon said they’d call me.

So I’m thinking that there has to be a mistake… I called my counselor today, and of course she’s out of office until Thursday. So I’ll be waiting until then to see if this is indeed a “target weight” I need. If so, it would have been nice for someone to tell me about it, right??? *frustrating*

Look, if that’s the goal I need, that’s fine – I trust their judgement and will lose the rest of the 19 lbs. before surgery.  (I plan on losing MUCH more after surgery regardless) I just don’t see how that could have been a goal from the beginning without them telling me about it.

This brings me to the much bigger level of frustration. For the past two years, I was doing my PD treatments, waiting on Dennis to lose 60 lbs to be approved to be a donor. During this time, I was gaining 40 lbs. Back in April I was concerned about this weight gain, so I called the transplant team to ask to be evaluated – because I didn’t want to be a holdup when Dennis was ready.  If I had to lose weight, I wanted to start then and there by switching to Hemodialyis a long time ago.  Well they called me in for my yearly exam, did all kinds of lab tests, etc… but then I never heard back from them.  I assumed I was good to go, so I continued living my life on PD.

Fast forward to now, Dennis is all approved, and now my worst fear has come true – I’m the holdup now. They are apparently telling me I was 19 lbs overweight (12 lbs as of right now).   I’ve only gained about 5 lbs since April – so why didn’t they tell me back then that I was 14 lbs overweight? I’d have stopped PD immediately to start losing weight wayyyy back then, while Dennis was still losing his weight.

*very frustrating*

Terry

(ps – you’re probably wondering  why I didn’t alter my lifestyle back in April to start losing weight when I thought I might be overweight.  That’s just the thing, I’ve been living a very healthy lifestyle for the past 2 years. I eat balanced meals, very little junk/processed foods, and plenty of exercise.  The normal “non PD” me would have been losing 40 lbs over that 2 years, but instead I gained 40… all because of the PD solution I had in me 24/7.  It’s a constant influx of calories that my body could not handle.  Now that I’m off of PD, that siege of calories is no longer there, hence I’m losing weight now in the past month).  I’m very confident I’ll lose these remaining 12 lbs pretty quick, but it’s just crazy I was never told I had to before surgery.

October, 2017

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.