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.



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.


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:


  • 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:


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


… 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. 

PD Catheter surgery – and Transplant news

Woohoo! I’m going under the knife tomorrow – I’m getting my PD (Peritoneal Dialysis) Catheter installed. I’m pretty excited! That means only about a month of hemodialysis left. (no more giant needles!)  I had to wait two weeks for an appointment with the surgeon. I saw him this morning – he was like “I can do this tomorrow if you want”… I’m like.. sweet! The sooner I’m off hemodialysis the happier I am.  After a week or two of healing, then 2 or 3 weeks of training, I’ll be 100% off the needles and 100% on PD. You can read all about Peritoneal Dialysis from my blog entry a few weeks ago.

Oh – and the best news – my insurance has approved moving forward with the transplant process! I’m in contact with IU Health Transplant team to get my initial testing done. The donor search can begin after that.

I’ll post more in the next few days, after surgery, and after I hear back from Transplant team on steps I need to take for that, and will also give an update on how surgery went.

Thanks to everyone for all the amazing support!

Post Dialysis Treatment Bandage

This is the monster bandage I have to wear for 2-4 hours after each dialysis treatment. The needles leave a decent sized puncture so it’s important to wear a pressurized bandage of sorts to keep a little pressure on the punctures while they clot up and heal.  Since they give me anti-clotting fluid before each treatment, it’s still in me for awhile afterward so it’s best to keep a tight bandage on it for awhile.

Since my treatments are from 4-9pm typically, I have a pretty late dinner on those nights. Granted, I do bring a few healthy snacks to munch on during treatment (protein bar, peanut butter, celery, fruit).. By the time it’s over I’m very ready for dinner. I’m supposed to eat a lot of protien each day so I usually make a beeline to a restaurant to chow down after 9pm.

Since it’s still Summer I wear short sleeve shirts – so when I’m out at a restaurant my giant bandage is in full view. I’m usually eating alone so I don’t really have to explain it too much – however it’s very noticeable to servers or a random person you sit by at a bar. 

The first few weeks I was very weary  of having it in sight – I didn’t know if people would be comfortable hearing what the bandage is for if they asked… But I know it’s human nature to ask “what happened to you?” when you see a big bandage like that – as it looks like it could be a hefty laceration from an unknowing eye.

So, I’d try to eat and drink with my right hand only, keeping my left arm to my side or lap.  It’s not a big deal to me, I don’t mind if people know what it’s from. However there’s always that shock factor when you tell someone “oh I just got out of dialysis treatment – I have bad kidneys”.  Then come the obligatory “I’m sorrys” and uncomfortable sympathies from the asking person.  I have no problem with that – I do appreciate the well wishes – but I was just afraid it would become a regular thing after awhile, so I just tried to keep it under wraps as best I could while eating. 

Well tonight I popped into Bourbon St Distillery, an outstanding Cajun/BBQ place downtown. I sat at the bar and wasn’t really thinking about my bandage – when the bartender asked me if I was in an accident :) ahhh.. I forgot to hide my arm. No big deal, I just told her I just left dialysis – I got the expected look of shock and sympathy, the I’m sorry for asking, etc.. I told her it’s not a big deal and I’ll be a transplant recipient at some point and that the treatments make me feel 100% normal – and it’s a good thing. That made her feel better.

There was a guy next to me who overheard the convo – he chimed in saying he knew someone with kidney disease and admitted that he had no idea how vital a role your kidneys play in your body until his friend got sick. He said meeting people with that condition are very eye opening.

Anyway it was a short conversation with both of them, but pleasant and actually kind of liberating – it wasn’t as awkward as I thought it would be. So from here on out I won’t be so hesitant to keep my bandage in view. Granted I won’t be flaunting it around by any means, but I don’t think I have to spend too much energy on hiding it anymore when I’m out somewhere right after a treatment.

Peritoneal Dyalisis

First I wanted to give an update on the transplant application process. Nothing much has happened in the past few weeks. I did mail my initial paperwork in a few weeks ago, but I have not heard back from anyone. However the letter I received back then did say they would contact me after insurance approval was received, so I’m guessing we’re still waiting on that.  I’ve applied for Medicare (which I’m eligible for with all this), so I’m sure there’s some waiting involved with that. Medicare and my personal insurance will be splitting all my costs. Once all the red tape/approvals get done, then all the action will start, I’ll post more on that when the time comes.  When? I have no idea.

In the meantime, I do know that it takes a long time for a transplant to happen. Most likely a year or two, or longer. So that means I need to situate myself to be the most comfortable I can be with my ongoing dialysis treatment.

My current method of treatment is hemodialysis. I’ve explained that in detail in the past, so I won’t go any further with that in this article. (If you’re new to my blog, just go back to previous entries, it explains it all).

Another method of dialysis is called “Peritoneal Dialysis“, or PD for short. This method doesn’t involve needles or blood leaving your body at all.  It actually uses your own body to simulate having a 3rd kidney.  What??? Well, here’s how it works:


Most of your internal organs are contained in a “sack” of sorts, in your abdomen. Imagine a big grocery bag filled with your organs (haha.. ok.. don’t imagine that… it sounds pretty gross). But really, that’s what it is.  It holds all your organs together in your abdomen, keeps them secure, and protects them.

With PD, a catheter is inserted through your skin, and through this “sack”, (called the peritoneum), with the tip of the tube inside of you. Think of it as a straw.  Using special equipment, you “fill” your sack with cleaning fluid.  This fluid is called dialysite. This is a specialized fluid designed to attract waste products from your blood and into the fluid.

Blood flows through millions of vessels surrounding your peritoneum sack. When the sack is full of this dialysite fluid, the fluid is in contact with the vessels, and it pulls out waste products.

After about 6-8 hours or so,  it’s time to “drain” the dirty fluid and add new.  This process is called an Exchange.

So in theory, your peritoneum is always full of this fluid – 24/7.  You have to change the fluid out 4x per day.  Every day. 7 days per week.

That seems like a pretty daunting task huh? Having to dedicate your life to doing this fluid switch 4 times per day, every day.  (each exchange takes about 30 minutes).   The other option for me is my current setup – hemodialysis, which takes 5 hours (3x per week).

So it’s a give and take. With hemodialysis, 4 days out of the week I’m free to do whatever I want.  With peritoneal dialysis, It’s a 7 day per week job – 4x per day.   There are gives and takes to both.  A big positive with peritoneal dialysis is that I can do it all myself. I’m in control of my own schedule.  The exchanges can be done anywhere. (Home, car, work, hotel, etc).  Plus, since you are being cleansed 24/7,  dietary and liquid restrictions are lifted. I don’t have to worry about phosphorous, potassium, and many other things I have to watch right now.

I do understand that it’s a huge commitment – but honestly I have no choice in the matter. The rest of my life is a commitment to fighting kidney disease, and staying alive as comfortably as I can.  I like the idea of being on my own schedule, the freedom to do treatments from anywhere, and no needle sticks or blood leaving my body.

The first step is to have the catheter installed.  That involves surgery. I have an appointment with a surgeon on Monday Sept 14. We’ll probably schedule a surgery date after that, unless more tests are needed. However my nephrologist says I am a perfect candidate for this and I’d be really good at it.

After surgery, I need a few weeks to heal, and get used to having a plastic tube sticking out of my belly. I’ll be taking classes on how to keep it sterile – as infection is the biggest concern. However if care is used, it’s very safe. It’s rare to see an infection on these devices but it does happen – so I’ll be learning how to avoid that.

After a few weeks of healing I’ll be starting my PD sessions at a clinic.  For 3 weeks I’ll go into the clinic to perform my fluid exchanges. I’ll be learning the process, how to be sterile, the ins and outs of all of it.

After 3 weeks of this in-clinic training, I’ll be let loose to do it on my own. My goal is to have all this done and be on my own by December! I have a lot of time of work over the holidays and it would be nice to be self sufficient again by then.

One thing I was thinking was “so I’ll have this tube sticking out of my body all the time??”.. The answer is yes. However it’s not a giant tube.. your skin grows around it, so it basically becomes part of you. When not in use (i.e. in between exchanges), you basically just tape it to your body, or some people wear a support band to secure it.  You can wear normal clothing, it’s not noticeable at all.

You can also take showers, go swimming, etc, you just have to be sensible with it. I doubt you’d want to go swimming in a dirty lake or a public pool – but private pools and everyday bathing is A-OK.

I think the biggest part would be settling in on a routine. I’m sure I’d do an exchange first thing each morning,  then do one at lunch (either at work or home since I live so close), then one after work, then another before bedtime.

I’m very grateful that hemodialysis is making me feel so much better – however I do have options, and to me the PD route sounds like a better option. I don’t have to be at the clinic every M-W-F, and no more needle sticks or wear and tear and worries of complications from them. I’m all in for PD.