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.

 

EverageMen

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

December update

Happy Holidays! It’s been a few months since my last post, so I thought I’d take a few mins and let you all know how I’m doing.  As you can probably see from my Facebook activity, I’m living my life as normal as I possible can. I’m doing all the things I used to do (but with a lot more moderation, I do rest more than before!) But I am enjoying my life. I am feeling great every day, which is a blessing. I do labs and see my doctor every month – All of my blood numbers are great, which means dialysis and medication are working.  It’s really comforting to know that I’m doing all the right things on my own without help from anyone.

A few months ago I posted about how I’m officially on the IU Health / Indiana Transplant list. This means I’m basically “waiting my turn” for a deceased donor kidney.  That process takes 2-3 years at least.  The other (preferred) alternative is to get a “living donor” – meaning someone living being gracious enough to donate one of their kidneys to me. These kidneys are healthier and tend to last longer than deceased donor ones.  A few months back I posted how friends, family, or whomever could start the process of checking.  Apparently quite a few of you called the number or filled out the form – that’s what they told my Mom when she called anyway –  I can’t tell how amazing that is. It means the world to me that you’d even consider such a thing.

For those of you that did call the Transplant center or did fill out the form, I wanted to let you know that I have 100% zero knowledge of anything during your process. I’m not updated on your results, decisions, etc.  It’s confidential information between you and the transplant center.  All of your interviews, blood testing, background checks, anything and everything, I hear nothing about any of it.  I receive zero phone calls, zero updates, zero nothing from the hospital.  Not even if you applied and you’re “not” a match – I don’t hear anything.  The only time they contact me is when a donor has gone through all testing and is 100% approved and ready to do it – that’s when I find out – from the doctors anyway.  Quite a cool surprise huh? :)  Or, the potential donor can keep me updated as well if they wish, but it’s absolutely not required.

Anyway – I’m just giving you all an update – my “rock star” cousin Dennis immediately stepped up to the plate, offered to get checked out, and guess what – he told me he was a good match! Talk about great news right??? This was about a month ago.  Nothing has progressed further though – as they told him to hold off on further testing because – get this – there’s ANOTHER matched living donor who came forward – and they are (apparently) going through further testing right now!?!?!?

Talk about double good news! But the thing is – whomever you are – I have no idea who you are! I have no idea of who all went to get tested (I know of some that said they were going to, but I have no confirmation of who all really did outside of my cousin Dennis).  But I just wanted to say – to whomever you are – even if you decide to not go through with it, or something else comes up that makes you ineligible – thank you thank you THANK YOU from the bottom of my heart for stepping up to the plate.

So there’s my update – I have at least 2 potential living donor matches. Could be more, could be just that, I’m not sure.  Whomever this other person is, and my cousin Dennis.  I know about this other person because  Dennis was told to “stand by” while the other person is processed further. I”m assuming this other person is still being evaluated – whomever you are!!

In the meantime I’m doing really well at my 4x per day dialysis routine.  It takes about 25-30 minutes for each treatment, I do it before work, once at work, right after work, then at bedtime. So far so good – it’s a schedule I’ve adjusted to well.  Here’s to fingers crossed on further donor match evaluating and news in the next month !  In the meantime, I hope all of you have a great holiday season!

Terry

ps – if you’re just now hearing about all this and would like to see if you’re a possible match, first of all – THANK YOU! 2nd, here’s the info you need:

  1. (strongly encouraged) Read about the IU Health Transplant program, and fill out the Living Donor Intake Form.  For name of recipient, put “Chester T. Angel”. (Chester is my legal first name, some of you may not know this).
  2. (optional) Call the transplant coordinators at 800-382-4602, or if local, 317-944-4370 (8am-4pm Eastern time M-F) if you have specific questions or concerns, or if you just prefer to initiate things via phone.

My New Daily Routine / Transplant Listing News

Hello curious friends and interested strangers, it’s been awhile since I’ve posted an update so I thought I’d take this “extra hour” of daylight saving time this morning to give you all an update on my life’s recent happenings.

I”m 100% full steam ahead on my peritoneal dialysis treatments. It’s basically become a way of life now. It’s part of my daily routine, just like going to the restroom or having a meal.  Four times per day I go through the process of sanitizing and preparing my treatment area and draining/refilling the dialysis fluid from my abdomen.  This entire process (prep thru cleanup) takes about 30 minutes. In the mornings I do it right after my shower (since I also have to clean/bandage my exit site each day, I do this with my morning exchange) – so the morning “process” takes about 35 minutes.   The other three take about 25-30 mins, depending on how much fluid drains from my body.

There are 3 strengths of dialysis solution. It’s basically a “sugar water” – when it’s in your peritoneal cavity it sucks water/wastes from your blood vessels into the solution.  You then drain the old/refill with new solution. The higher the strength of solution, the more water/waste it pulls from your vessels.  It’s amazing how the different solutions work.  There’s 1.5% dextrose, 2.5% dextrose, and 4.5% dextrose.  No matter which strength I use, I always “put in” 2500ml (2.5 kilos).  As the solution sits in my body over several hours, it “draws in” more water from my bloodstream.  So as you can imagine, I “drain out” more liquid than I “put in”.   I’ve found that when I use the 1.5%, I’ll drain out about 2600-2700ml.  When I use 2.5%, I’ll drain out about 3100-3300ml.  When I use the 4.5%, I’ll drain out a whopping 3900-4000ml.   To put this in perspective, think of a gallon of milk – that is roughly 3700ml.    When you compare these nunbers to the 2500ml I put in each time, you can see how much output I have. Imagine pouring about 3/4 gallon of water into your abdomen, and draining out upwards of a full gallon or more – 4 times per day… every day.   I’ve found that my “net” water output from my bloodstream (Total drained minus total put in) comes to about 2000ml…   That’s about 4.5 POUNDS of water filtered directly from my bloodstream every day!

I do feel “full” a lot. Not so much as in a “not hungry” full – it’s different. More of a bloated feel. It’s also not as easy to bend certain ways. Rolling over in bed is a gingerly process, getting in and out of my car is a chore sometimes. I’ve found that the higher strength I use, and the longer into the dwell session I am, the more bloated I feel (because there’s more fluid building up around my belly).   I have to tell you though – during the “drain” process it’s such a relieving feeling! Even after “filling” back up (with 2500ml) it’s usually a lot less than I just drained out so I feel less bloated for the time being.

The good news is, my initial labs show the dialysis is working, my numbers look great.  My doctor told me to stick with the 1.5% for the most part but mix in some 2.5% here and there. He told me to not use the 4.5%  – he said that’s mainly used when people need a ton of fluid removed fast.  Since I’m not in that condition I don’t need to use that strength, thankfully. I did experiment with it and man – that stuff really pumps out the fluid. That’s when I was draining out like 4000ml every 5 hours…  not fun.   So, I’m very happy to stick with the 1.5% and 2.5% solutions.

On to other news – I’m officially on the Indiana Kidney Transplant list! I’ve gone through all of my testing and financial requirements, I was approved by the “board” last week.  What does this mean? Well, it means that someday it’ll be “my turn” to receive a kidney from a deceased organ donor.  This wait period takes about 3-5 years typically.  The preferred route for me (or anyone) though is to receive a kidney from a living donor.  Those kidneys are healthier and tend to last longer.  Plus there’s no 3-5 year wait time – you basically schedule it for convenience of both parties.  While I’m hoping to find a living donor match, I’m very grateful to be on the other “list” – and am overwhelmed with emotion knowing that people like myself are just “waiting on people to die” so we can get one of their organs.  It just seems so sinister. I certainly don’t want anybody to die so they can help me. But I am truly grateful for their ultimate gift to help me when it does happen.

As for potential living donors, I know of a handful of people who have told me they are in process of being tested or plan to do so. All of that testing and communication is confidential between the potential donor and the doctors. I will never have any news reported to me personally unless it’s by the person attempting to donate. All of this seems so surreal to me – I’m so thankful for the selflessness shown by these people (you know who you are). While I could never ask anyone to do this for me – I’m so thankful for you – each and every one of you, you’re the reasons I have hope for a long life!

 

After 1 full day…

I’ve done 4 CAPD exchanges so far (acronym for Continuous Ambulatory Peritoneal Dialysis) – and wow I think my body has some adjusting to do.  I’m putting in more fluid than I was in the training sessions, and my body is like “whoa”.  Each exchange I drain out the old fluid, and put in new… I put in 2.5 kilos of fluid (that’s over 5 pounds!)… so yeah – imagine pouring a little over 1/2 gallon of water into your abdomen at once… it’s pretty darn “filling”.

Note that it’s not in my stomach. It’s outside of my stomach… and intestines… and other organs that reside in your midsection. It’s in an area that’s not used to be full of fluid.  So it feels very tight right now – actually it feels like I just did about 200 situps.  Kind of sore in a cramp kind of way, but not painful.  Kind of a weird feeling.   Plus I feel “full” all the time even though I’m hungry.  That’s another weird feeling.  So I do eat but not as much as before.  I need to watch that as I need to eat a lot of protein every day so I can’t shortchange myself.

The wild part is how much water/waste material I’m draining out with each exchange.  Remember how I’m putting in 2.5kilos of fluid?  Well the last couple of exchanges I’ve drained out 3.2 kilos.   Where did that extra 0.7 kilos of fluid come from? (that’s about 1.5 pounds!)?  It’s the “bad” fluid/waste products in my bloodstream!  It shows it’s working.  Instead of my kidneys filtering this bad stuff out into urine,  my peritoneum is filtering it and I’m draining it out from the tube in my belly.

Medical technology is phenomenal.  In the past 24 hours I’ve drained about 4 or 5 pounds of water/waste product out of my body.

Because of this, I can eat and drink all I want. My body is now being filtered – it’s not staying inside of me and making me feel sick or fatigued. Hemodyalisis made me feel great too – but that was a 3x per week thing.  So, instead of Hemodialysis taking 8-10lbs of water out of me every 2 days,  with PD I’m now taking 4-5 lbs out on my own every day.  It all equals out.

(don’t worry – I’m not losing 4-5 lbs of body weight every day… I’d disappear pretty soon huh? haha.)  I put it back in with eating and drinking… it’s just that every day the bad stuff gets taken out, and it’s being put back in with food I eat and water I drink.  Before dialysis, the bad stuff wasn’t coming out… it was staying in my body and making me feel very bad.

Each exchange takes about 30 mins… 4x per day.  It’s a new lifestyle… but very manageable and I’m so happy to be doing it myself without assistance from others or the need to go into a clinic.

Terry

10/15/2015

PD – Day 1

Well here we go! Peritoneal Dialysis, Day 1. All my supplies were delivered today.  A corner of my room is all set up to resemble a doctor’s office (sexy huh!) but hey, I’m all set up and ready to roll each day. As you can see, the supplies take up a lot of room.  That’s about a month’s worth of supplies, currently in my kitching/dining area. I may get creative in finding spots to stash these boxes around my apartment, but for now this spot works. Each box contains 5 bags of dialysite fluid (I’ll use 4 bags each day).

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The delivery guy came today, brought all these boxes upstairs (he used a nifty dolly that could walk up stairs – it was pretty darn cool). Then my PD nurses showed up (they were wowed by my uber cool apartment and my stellar setup haha) – I did my first “fill” at home in their presence, I did a bang up job, and they signed me off to be on my own.   That means… no more hemodialysis! Needle sticks and annoying beeping machines be gone.  Hot damn.

Now comes the tasks of 4 drains/refills every day. Until I get a transplant. Whenever that may be. Fingers crossed for a match next week! If not, I’m glad I have this setup to keep me happy and healthy until that time comes.

 

It’s time! How to see if we’re a transplant match.

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Let’s see if I can read your mind. Some of you are probably sitting around your house, planning your upcoming week. Perhaps you are wondering what you’re going to buy at the grocery, or which movie to go see this weekend. Maybe you’re excited about the Fall season starting and want to start carving pumpkins or stocking up on Halloween candy WAY too early (I say go for it). ORRRR… maybe you’re saying to yourself.. “I want to give Terry Angel one of my kidneys – how do I check to see if we match?”

See, I KNEW I could read your mind! haha. Ok I’m kidding. :) That being said, I’ll be serious about this now, as it’s a very serious subject.

I’ve had several people reach out to me in the last few months, asking how they can check to see if they could be a kidney donor match. I really didn’t have an answer, up until now. It took awhile to go through all the insurance approvals, getting all my tests done to make sure I’m a transplant candidate, and other necessary things to get the ball rolling.

Well now, I have some answers. If you’re interested in checking, here’s what you can do:

  1. (strongly encouraged) Read about the IU Health Transplant program, and fill out the Living Donor Intake Form.  For name of recipient, put “Chester T. Angel”. (Chester is my legal first name, some of you may not know this).
  2. (optional) Call the transplant coordinators at 800-382-4602, or if local, 317-944-4370 (8am-4pm Eastern time M-F) if you have specific questions or concerns, or if you just prefer to initiate things via phone.
  3. (optional) Attend my kidney transplant evaluation/education day on Wednesday, October 21. I’ve been told any potential donor may attend. This is a good way to talk to counselors and surgeons in person to ask any questions you may have. You can have your cross-matching blood sample drawn this day as well. This is also the day I get my cross-matching test done. How exciting!

Location info: IU Health University Hospital, 550 University Blvd, Indianapolis IN 46202. Valet Parking at front door is $5 for all day. Here’s the day itinerary:

  
NOTES:

  • my blood type is A-  (A negative). Which means I can receive an organ from anybody with any “A” blood type or “O” blood type.  If you’re a “B” or an “AB”, we aren’t compatible.
  • There are other things besides blood type that need to make us compatible. It’s some very complicated immune system antigen mumbo jumbo that only a doctor could explain to us – some people are good matches and some people aren’t.  I attempted to blog about it HERE but you can probably find more info online yourself.
  • There are some things that would probably disqualify you as a donor. Things such as diabetes, heart disease, high blood pressure, drug abuse. However if you’re on the fence on some of these things but want to donate, it may still be worth filling the form out.
  • Cost: My insurance covers 100% of everything for you. Your surgery, your hospital time, your recovery, your medication, your followups, everything.  The only thing it does NOT cover is your lost time from work, which might be a week or two.
  • Paired Donation: Even if we don’t match, and you still want to donate a kidney to help me out, there are programs where I team up with another person who needs a kidney. Perhaps you match them, and their friend matches me. This is a national database that has helped a LOT of people match this way. While I’m not receiving YOUR kidney -someone else is, and I’m still getting a transplant because of you. Plus you are helping TWO people instead of one:

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If you can’t attend the evaluation/education day – don’t fret. I know it’s a weekday, and most of us either have jobs or geography issues. The easiest thing you can do is fill out the online form or call the number above. You will hear back from a transplant coordinator for further information and instruction.

First and foremost though I want everyone reading this to understand that I am NOT asking anybody to check. Nobody. Donating one of your organs is a very personal thing. It’s a very big thing. It’s Mount Everest huge.  It’s certainly not as easy a decision as say, letting someone borrow your car or loaning someone a chunk of money you know you’ll probably never see again. This is a piece of your own body leaving you, forever.  Some people have religious beliefs, fear they may need both your kidneys later in life, have a big fear of surgery and potential complications, can’t donate because of reasons they don’t want to disclose, or flat out don’t want to.  Whatever the reason – it’s 100% A-OK in my book.  No harm, no foul, no judgement, no nothing. I do thank you sincerely for all the well wishes and other ways you can support as well, mainly just being the awesome friend that you always have been.

For those of you that DO want to check. Or those of you who are on the fence but want to research and ask questions before making a decision – there’s no way I can describe in words how grateful and thankful. Even if we don’t match – or in the end decide you can’t do it – just the stepping up to the plate part is the biggest gesture anyone has ever shown me, you’re in a very special club in my book, and I am indebted to you immensely.

I’m very excited about the future – there’s a lot to do but in the meantime, with my treatment programs I’m feeling great and functioning normally which is huge in my transplant quest.

Terry (10/06/2015)

My last day of hemodialysis

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… Well, not exactly.  But it was my last day at Fresenius Circle City facility. I have a few weeks of hemodialysis left at my peritoneal dialysis training center – but after that I’ll be off it completely.

I just wanted to type up a few reflections I’ve had in my exactly 7 weeks (21 four hour sessions) of hemodialysis so far. I’ve learned a lot in the past few months – I’ll put some bullet points here to share a few things.

  • Hemodialyis nurses and techs are very hard workers. They are constantly dragged in a million different directions. They are masters at multitasking. I can relate to that because in my field (IT / software admin and development) it’s mandatory to be able to multitask. The difference with these guys/gals though, is their customers are living humans who depend on them with their lives and well being. I work on machines – if I screw something up, nobody physically suffers. These guys/gals are legit heroes.
  • I learned to get the “hang” of the routine after about a month or so. In the beginning I assumed I’d be in and out in 4 hours. I found out quickly it’s more like 5 hours. It takes about 20-30 minutes to get fully hooked up to the machine, and another 20-30 to be able to walk out the door.  There’s a lot of “prep” work that happens (waiting to be called in, checking in, machine setup, needle sticks, taping, etc).  There’s also a lot of “post” work to be done. (techs doing machine data work, unhooking everything from you, applying pressure to your needle holes for 5-10 mins before getting fully taped up, and checking out).
  • There’s a camaraderie between  patients. No matter your age, ethnicity, social background, profession, age, or how long you’ve been on dialysis – we all have that “thing” in common. Most people in my center were elderly or had big issues – but they were all very cool to me and with each other. Everyone says hello and goodbye as you walk by their stations. You can talk to anybody near you while you are hooked up (although the machines beeping are very loud and it’s hard to sustain a conversation more than a few minutes) but it’s very nice to have that connection with people you’ve never met.
  • Some people are there for the rest of their lives. It’s their only option. They can’t get a transplant, can’t do home treatments, and depend on the “system” to keep them alive. Thankfully Medicare covers most dialysis costs for them – so they can continue living.
  • A LOT of patients depend on paid transports to get to and from the center. Each day I arrive at 4pm (it’s a shift change time) – there are a lot of people leaving when I show up. Many of them are bedridden – they can’t walk or even be in a wheelchair. They are hoisted out of their dialysis bed into a gurney, and wheeled to the ambulance for their ride home. And it never ceases to amaze me how joyful they are when they leave – they are smiling and waving and saying goodnight, just like anybody else would who actually walks out.
  • I learned to not freak out when my machine started beeping. More often than not, nothing was wrong. The machines are programmed to alarm at the slightest of things (hence why they are beeping A LOT).  Usually mine beeps because I moved my left arm too much. I learned to use my right arm for most everything while in session.
  • They take your blood pressure A LOT. LIke every 15 or 20 minutes or so. The machine does it automatically. Between check in, check out, and my 4 hour session, it’s nothing to get your BP taken 20 times in 4 hours.
  • Most of us track our body weight in fat. They don’t – they track it in water.  A big part of dialysis is to remove water from your body. Two big thresholds of you are “wet weight” and “dry weight”. Wet weight is your body weight when you show up.  Dry weight is when you leave. It’s nothing to lose 7 or 8 POUNDS of water in a 4 hour session. Their goal is to get you to your “dry weight” after each session. (ridding you of all that water keeps you from swelling up around your lungs and other parts of your body).
  • It’s really really REALLY freaky and awesome at the same time to see your blood leaving and re-entering your body for 4 hours straight. You know that all it takes is about one minute for you to bleed out and die if one of those lines were cut and nobody was around. Yeah – you treat those lines with care!
  • Dialysis takes a LOT out of you. You get used to it after awhile, but you’re usually pretty tired after a session. Sometimes I have a headache – others not. But I always walk out of there starving. You’re encouraged to eat protein after each session and boy I’m always glad about that. I usually treated myself to a nice dinner out somewhere each night of treatment.
  • My urine output went down DRAMATICALLY. My entire adult life, I don’t remember a time I never had to wake up and go to the bathroom in middle of night. Ever since I started dialysis, I’ve slept through the night most every night. OH MY GOSH that is sooo awesome haha. The reason I don’t urinate as much is because they remove so much water during sessions. (Remember that 7 or 8 pounds of water from earlier?).
  • The best thing I learned is that despite the pain-in-the-ass lifestyle change, it’s worth every minute. I never want to feel like I did mid summer again – being “kidney sick” is not fun. I learned very fast (on day 1) how magical this treatment is – how it made me feel like a whole new person after just 1 treatment. I also know I’ve felt outstanding for 7 weeks in a row, every day, and that whatever it does, it WORKS!

I’m about to start my new journey with dialysis – peritoneal dialysis. You can read previous blog entries to learn all about that. I’m sure I’ll update you all on my adventures with that as well as time goes on – but for now I can sit back and look back and know I’ll have experienced both before I (hopefully!) get a transplant in the coming months or years.

Thanks for reading!

Terry (9/29/2015)

News on a couple fronts

First of all, my surgery to insert my Peritoneal Dialysis Catheter was a success, and it has healed nicely in the past week! Most of the post-op pain is gone, and I can start training for using it next week.  My training starts on Tues Sept 29 – basically next week. I’ll be doing hemodialysis alongside side of PD until training is finished, then I’ll be on my own with PD exclusively! I’m pretty excited about that.  No more trips to the dialysis center, no more needles, no more chained to a bed for 4 hours 3x per week while my blood is cleaned. You can read all about PD and how that works in my previous posts, you can start with the one highlighted in the first sentence here.   I’m estimating that by mid October, I’ll be on 100% peritoneal dialysis, and I’ll be in control of my own treatments!

Other news – I’ve also been in contact with the Transplant team at IU Health. They sent me all the info I needed, including a list of all the tests I need to get done.  Most of them will be done this week – on Thurs Sept 24.  I’ll take 1/2 day off work to get all those done at Methodist hospital.  (A bunch of blood work, heart scans, etc).  Some of my tests are already done (EKG, dental clearance, and a few other things). They need all these test results so they can get me all set up in their system as a kidney transplant recipient.   Once all these tests are done this week, I’ll be able to instruct friends and family on how they can be checked to see if they are a match for me :)  There is a whole slew of information for that – I’ll post that in the next week or two once all my test results have come back and I am officially in their system.

So to review… coming up for me:

  • get my transplant tests/exams for baseline matching finished this week
  • start PD training next week
  • be off hemodialysis and 100% on peritoneal dialysis in 2-3 weeks (after training is over)

Exciting! Things are moving along.

PD Catheter surgery – done.

  
Well there it is – all covered up with a bandage, but here is the new part of me. You can see the white tip of the tube reaching out of the bandage. I was told to not touch this bandage for a week – so I suppose I’ll follow doctor’s orders.  I’m allowed to shower but I’m wondering how in gonna pull that off – I’ll find out VERY soon as it’s almost been a few days :)

There are actually 3 holes in my belly – 2 of them (including my belly button) were for a scope, so he could look around inside and pick a spot to put my tube. Then there’s the catheter hole, which will heal up around the tube. 

The surgery went very smooth, very quick. The last thing I remember is being wheeled into the OR, then my tongue getting comfortably numb, then waking up in what seemed like 1 second later haha. It’s amazing how there is zero sense of time when being put out. I definitely have a sense of time with sleep usually – but not this.

Anyway I was in recovery room for a few hours then Amanda picked me up. She took me to CVS for my pain meds, I bought us an early dinner, then basically went home to rest.

I slept pretty well last night, and slept during most of dialysis today. I was off work so I went to treatment early. I got home today and slept a few more hours. I’m very very sore in the midsection but at least I’m able to rest ok.

So – the plan now is to not touch this bandage for a week – doctors orders. I have an appt with him for Monday (in 5 days) so hopefully he can clean / re dress it then.