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.

Kidney Transplant – Donor Matching

One thing I’ve certainly learned since I’ve been researching this whole kidney transplant thing, it’s certainly not like running out to the grocery real quick. It’s a long timely process, and if you’re very lucky it’ll work for you.  There are a ton of hurdles along the way, and even getting to the end game doesn’t promise you anything. So in short, any naive thoughts I had about being on dialysis for a short stretch then getting a transplant was quickly kaboshed with a little research and talking to my doctor. However, the good news is it’s totally doable with the leg work.

A few weeks back I received my initial Transplant packet from IU Health. I basically just filled out a bunch of paperwork and mailed it back in.  The letter inside mentioned several health screening tests I had to take, such as cardiac stress test, chest X ray, colonoscopy, etc.  They basically are checking me from head to toe to make sure I’m even eligible to be an organ recipient.   My doctor said I’m a very healthy guy so I’ll have no problems passing these tests, so I’m not worried about that.  I haven’t taken any of these tests yet, I’m still waiting on IU Health to set them up for me.

I talked to my nephrologist about the whole process, he told me it takes 2-5 years from start to finish to receive a donor kidney. There are a lot of things that have to happen your way in that time period, but it’s possible and happens.

The big “test” when finding a closely matching donor come from 3 areas.  Blood Type, HLA Testing, and Antibodies.

First, you must have a matching blood type.  Since I am “A negative”, my matching types are any “A” or “O”.

Next – HLA. The fancy word for HLA is “human leukocyte antigen”. We’ll just stick with calling it HLA. Anyway, this test identifies the major HLA genes a person has inherited from their mother and father, and the corresponding antigens (proteins) that are present on the surface of their cells. These antigens help your immune system determine which cells are “self” and which ones are “non self”.  Any cells that are considered “non self” can trigger an immune response against them.

Finally, there are Antibodies. Your immune system may produce antibodies that react specifically against something in the donor’s tissues. If no reaction occurs when combining them in a tube, you should be able to accept the kidney.

In other words, the antigens and antibodies in your body are the whistle blowers of the block – they are on the front line, and call for backup to ward off anybody trying to invade your turf.  This is a fantastic thing to have – as we’d all be sick or dead without it.  However this same defense system also tries to attack donor organs.  While our outer mind knows the organ is OK, our inner immune system sees it as an intruder.

This is why you need to find the closest matching Blood Type, HLA profile, and Antibodies to yours as you can. This, along with some Immunosuppressant drugs (drugs that reduce your immune system), allows you to put someone else’s organ into your own body.

How do you find the closest match to your own as you can?

My doctor broke it down into 3 categories, ranked by preference/odds of success:

  1. Living Related.  This is the most favorable kidney donor. This is from a parent, sibling, cousin, or other closely related person. Since your HLA profile combination is inherited from your mother and father, chances are better that a closely related person would be a better match for you.   Granted, nobody is going to be an exact match (the closest would be if you had an identical twin), but this is still the best category out there.

Key points:

  • more control over timing of transplant
  • tend to be better matches
  • waiting time reduced
  • however sometimes difficult because if it’s a genetic disease, other family members may be affected as well.

2. Living Not Related. The next best option is from someone who is not related to you, but still alive.  This could be anyone – from a neighbor, friend, coworker, acquaintances, or a good Samaritan who you don’t know at all.

Key Points:

  • more control of timing of transplant
  • waiting time reduced
  • genetic problems are less

3. Deceased. While this is least desirable, it doesn’t mean it won’t work. It can be from either a related or not related deceased person. Modern preservation techniques allow a deceased kidney to be preserved for up to 72 hours, so timing is short and fast. Quick decisions must be made.

Key Points:

  • most transplants come from deceased donors
  • timing is very short – it must happen very quickly once donor dies.
  • chances of post-surgery dialysis need are greater than that of Living donors.

Regardless of which of the three types of donors you go with, it’s a life changing procedure, and nothing is guaranteed.  The new organ may last you the rest of your life, or it may last just a few years, or it may not work at all.

As far as medical costs for the Donor,  all expenses are paid by the recipient’s insurance. The only thing the donor has to pay for is missed work time. A Living donor is usually back to work after a few weeks of post surgery rest and recovery.

Speaking of the living donor – on the surface it may seem like a no brainer decision for some people.  The person instantly wants to help and offers up a kidney and help the person in need. However, there are things to consider.

The donor must be prepared for emotional repercussions if their kidney fails to work in the recipient, or if it works for awhile then fails. Once it’s out of their body, it’s gone forever. The donor should be prepared for this scenario, as it’s a possibility.  But even so, it’s one of the most selfless attempts at a gift a person could ever bestow upon anyone.

The donor must also be prepared for physical repercussions. They will be sore for awhile, and will miss some work. There are chances of complications from the surgery (but very small chances). It also takes a month or two for the donor’s body to acclimate to only having one kidney.  The donor may feel fatigued or sluggish for a month or two while recovery is happening. But eventually the body recovers and is back to normal.

Other things to consider for the donor – if their remaining kidney ever becomes compromised – be it their own kidney disease, auto accident, any other disease that may affect it – they in turn would be in the kidney transplant line since they wouldn’t have a “spare” anymore.

All of these things and other things must be carefully weighed by the donor before making the decision.

As for the recipient, their life has changed for sure. Once the kidney is diagnosed as a success, they must take the anti rejection medications for the rest of their life. If they ever stop taking them, the chances of kidney failure are very high.  They must continue seeing their nephrologist regularly to monitor kidney function. If function starts to decline, medications and lifestyle changes must be taken to react to it.  The recipient must also be prepared for the possibility of the kidney failing and having to go back on dialysis.  The good news for the recipient – if they are healthy enough and approved, they can try for another transplant.

As for my search for a matching donor, I haven’t reached that part yet. I’ve yet to take my own tests to determine what people can match to. Once all that is done in the coming months I’ll report back, as I know some of you have expressed interest in seeing if you are a match to me.  I am forever grateful to each and every one of you for the kindest of all gestures!  I just ask that you consider all things I mentioned, and do more research on your own before deciding. It’s a huge deal.

All of this is a load to read – I hope it was educational.  I’m learning a lot myself about this so I love sharing what I learn in my own words to all of you who are awesome enough to care to read about my ramblings here.


August 2015


Lab Tests Online

Kidney Link


Everybody meet Phil


I haven’t quite given it a name yet, but this is the machine that filters my blood 3x per week. Over on the far left is my artificial kidney. Looks pretty cool huh? It looks kind of like an elongated oil filter in your car. Yep, you guessed it, all those tubes are transporting blood from my body, through the filter, and back into my body as I’m typing this.  The machine does a lot of things – it controls levels of cleansing solution that’s added to my blood. That solution is fed through tubing to this machine, along with all other dialysis machines in the room. I’m not sure exactly how it works but it’s an amazing machine. It keeps track of my blood pressure, rate of flow of blood, how much solution is added or extracted from the blood,  amongst other things – it’s quite amazing.

Only about 1 cup of blood is out of my body at any given time, but it’s continuously being cycled out of my body, through this filter, and back into my body.  For 4 hours straight, 3 times per week.  A normally functioning set of kidneys is cleaning your blood 24×7, as your heart pumps it through your body. Since mine don’t work very well, I need this guy to help me out.

I’m pretty grateful for “Phil”… haha. Yep, that’s his new name.  Phil.  Short for Filter, or “Philter”.  So there we go. (I’m editing the title of this blog entry now hah).

Phil likes to beep a lot – when I move around too much he gets antsy, so I’ve learned to not use my left arm to move things around my area. He’s also trained to beep when other issues arise, most of which I have no idea about.  When he starts beeping, the nurses come by and push some buttons to appease him.  He’s been pretty quiet tonight – I think we’re starting to get along and become amicable partners.

I have about an hour to go in this session – so (knock on wood), it’s looking like my first couple of 4-hour sessions are going very smoothly.  I was a little worried after my infiltration episode last week (see previous blog entry for info on that).  But it looks like things are on the up and up.

I’ll make another couple entries this week to talk about what a lot of you are interested in – the transplant process.  What it takes to get me approved, to get on a national list, and how to find matching living donors.   I’ll also write another entry about another  type of dialysis – Peritoneal Dyalises (or PD for short) – which I’m looking into as an alternative to this hemodialysis that I’m doing now.  I’ll talk about pros/cons/differences in that entry.  But I’m definitely interested in pursuing it.

Good news is – I feel FANTASTIC for the first time in a long time. This is my 5th session tonight, and I’ve felt 100% normal ever since my first session last Monday.


My first 4 hour session


Don’t freak out on that picture – I’m not trying to shock anybody. But as you can see, my arm is pretty purpled up after the infiltration episode last week, but it’s not swollen at all, it just looks bad. It doesn’t hurt at at all, trust me it looks a lot worse than it really is. You can start to see the needle tracks going up my arm too – I’m starting to look like a full fledged needle junkie at this point huh?? :)

I showed up to the clinic at 4:00 yesterday, my first time on the evening shift.  This will be my normal shift from here on out, because of my work schedule.  I weighed in – and noticed I’ve done nothing but gain weight since I started dialysis – not sure why, I’m not eating any more than I was – but I’m certainly not vomiting or using the restroom as much either – so that must be the reason, I’m keeping more water in. However the point of dialysis is to get rid of extra fluid and toxins – so I’m not sure what the deal is. Perhaps all the vomiting and sitting on the toilet 24×7 had me pretty dehydrated – I’m glad all that is gone now.

My cannulizer had no problems getting me needled up, and my time actually went pretty fast.   I got started at 4:30. I talked to a couple of counselors for the first half hour (social and financial counselors).  I read for awhile,  watched Netflix for a few hours, watched ESPN for a  bit, and before I knew, 8:30 rolled around and my time was up.

No issues with the needle or veins this time, they unhooked me, weighed me, and off I went.  I went straight to BRU burger for dinner because man I was STARRRVING.  I’ve really got to plan better for these 4 hour sessions in the evening – I need to bring a few snacks to keep my stomach busy while sitting there for 4 hours, otherwise all you do is think of food.

I talked to my doctor today about other dialysis options, and the whole transplant procedure. I’ll write more about this things in my next entry.  Maybe tomorrow to give me something to do while I’m hooked up.