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.

Terry

August 2015

Resources:

Lab Tests Online

Kidney Link

 

Everybody meet Phil

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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

bruises

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.

 

Dialysis Week 1: Done!

Well I’ve completed my first week of hemodialysis.  I had a little bout with infiltration on the 3rd session (see the most recent blog post before this one) – but besides that it was a very successful first week.

I FEEL AMAZING!!! I haven’t felt this great in many many months – going all the way back to the earliest parts of the year.  The Prednisone and Cellcept made me feel like crap the first part of the year, and my nosediving kidney function made me feel like crap the last few months.

But let me tell you – even after my initial 2 hour dialysis session – I felt like a million bucks! Well, the next day anyway.  Right after I had a slight headache and was pretty tired – my body had been through a lot that day, so I did crash early that night.  But the next day I felt better than I think I ever have in years it seems. I was full of energy at work, I didn’t hit that 2:00 “wall”, I didn’t want to slump home after work and go to bed.  In fact I pumped air into my bike tires and rode to Fountain Square, had a nice dinner outside with my friend Amanda, rode my bike a little more downtown, and got home just before dark, feeling great and refreshed and so thankful to have just had the first “normal” day in a very long time.

It’s amazing how I took everyday life for granted my entire life.  How waking up and feeling good is so “natural” that you don’t even think about not having that.  Once it’s taken away however, you yearn for any semblance of normalcy to come back.  Well, those “normal” days have come back this week – I’ve felt amazing every day this week, it’s like a new lease on life for sure.

As far as technical results, I don’t have any lab numbers or any Chemistry geek stats to share with you – I know they do labs once per month at the dialysis center, and I believe they take small samples before and after each session – but I haven’t heard about how my numbers look.

I do know I lost a lot of weight during my sick period – about 30 pounds this year so far.  However in the past week, I’ve put back on about 8 or 9 pounds. It’s definitely water weight – as my diet really has changed much although I have gained my appetite back. I’ve made it a point to eat very healthy and in moderation this week, as well as watching my fluid intake. However I can tell I have a little bloat in my face and ankles this week – definitely a sign of retaining water. They aren’t taking any water out of me or adding anything in dialysis – they are just filtering only this week, so I’ll learn more about the weight fluctations in coming weeks.  I’ve been told I may gain weight while on dialysis and I have to strictly watch my fluid intake – so we’ll see how that goes.

The best news though is that I feel great – it makes it all worth it to have my sense of well being back, no matter how restrictive my life may seem on the surface. In reality that’s a small sacrifice to be “back” to myself.

 

Infiltration

They called me in early for my 3rd dialysis session today. I’m so lucky to work for cool people that are being very flexible with me on this. I’m very grateful for that.

I was scheduled for a 3 hour session today (my longest) however I only made it 2 hours in when I noticed my arm was starting to feel pressure around the access area – I looked down and saw my skin poofing out a little. I alerted the tech, he and the nurse decided to pull the needles since I was bleeding out of my vessel into the tissue, basically forming a big bruise.

This is called an “infiltration”, and apparently is pretty common especially with new fistula patients. The needle had pierced through the opposite side of the vessel, causing the bleeding.  I don’t remember doing any sudden movements that may have caused it, but I was reading and arranging things in and out of my bag, using my free arm as much as possible.  Still though, the needles are taped down pretty good, they shouldn’t shifting at all, but I guess it happens. I just have to be extra careful not to move my left arm much at all in case the needle is too close to the opposite vessel wall.

I had the option to re-stick and finish the last hour, but I didn’t have to since my numbers are good and I already had 2 hours in. I opted to just let it heal up for the weekend and leave.

I have to keep it on ice the rest of today – but apparently I’m gonna have a pretty nasty looking bruise for awhile. Time to break out the long sleeve shirts in mid August I guess :/

Ah well – nobody said this was gonna be a breeze – just going through the initial breaking in takes time I guess.

Resilience

  
I also just got Alonzo Mourning’s book “Resilience”. It’s about his battle with the exact same kidney disease that I have – FSGS. (Focal Segmental Glomerular Sclerosis).  He had a transplant back in ’03 and continued his NBA career after that.  Should be a great read. 

How did I get kidney disease? Good question.

A lot of people have asked me how I got my kidney disease.  Specifically, it’s called Focal Segmental Glomelular Sclerosis. or FSGS. Just google FSGS and you’ll get a ton of info.  It’s basically scarring of the filtering tubes in your kidney.

How this disease developed, I have no idea.  Common causes are genetics, diabetes, lupus, high blood pressure, a virus or bactera, or many other things.  I don’t seem to have any of those issues. I don’t know when I developed this disease, but I found out about it when I was 17 years old.  I tried to join the US Army – but failed the physical.  I failed the blood and urine tests for kidney function, apparently it’s a standard test.

So, after a few years going by, seeing a nephrologist and doing a kidney biopsy, they told me what I had, and told me it really wasn’t that bad.  They said it could get worse, or it could get better.  They said to just live my life and keep an eye on it.

Well, fast forward 10 or 12 years, I turned 30 years old, and realized that I hadn’t had my kidney function checked in at least 10 years.  So I decided to see my nephrologist at that point.  My disease was still there but hadn’t progressed a whole lot thankfully.  So basically I was in “holding pattern”, getting tested every 6 months since age 30.

Well here I am age 45, and in the past year my numbers have finally started to get dangerously low.  I started some expensive medication combinations that have been known to slow down progress of my disease.  Anti rejection medications and steroids – which unfortunately did nothing to help my disease, and also greatly affected my general energy level.  I was so tired for so long after coming off of the steroids. I was thinking it was all medication related but in hindsight, it was my kidneys really starting to fail.  The last few months have been a bear to get through.  No pain mind you, just extreme fatigue and a feeling of nausea and no appetite.

These are classic signs of kidney failure, hence the need for me to start dialysis. It’s a major life changer – but it’s so worth the time and effort to feel better.  A transplant is definitely in my future – I’ll be investigating that journey here soon.

 

Dialysis Day 2

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Well I woke up feeling great this morning, fully expecting a full day at work and my 2nd dialysis session at 4:15.  After getting to work, the lab called and asked if I would be able to come way earlier, like at 10:30am. (I got the call at 9:30am).  The nurse said they had a spot open up and they’d rather have me in earlier because the more experienced cannulizer (the guy who sticks the needles) was there.   I let me work peeps know and off I went 45 minutes later.

No waiting around this time – I got there at 10:30 and they got me right in, I was hooked up and dialyzing by 10:40.  Sweet!  I finished exactly 2.5 hours later at 1:10.   My next session is Friday – I’ll go for 3 hours that day.  Then on Monday I start my 4 hour shifts.

The needle sticks were less painful this time. In fact it hurt more pulling them out than it did going in. But it was a good session. I got a slight headache again about halfway through, but that went away by the time I left. Here it is a few hours later and I feel great. I think my body is really liking this clean blood thing.  Well, “cleaner” blood, I should say.  In reality it’s only doing about 10% of what healthy kidneys do.  But man – that 10% makes you feel sooooo good.

I met my doctor’s Physicians’s Assistant today.  She is really cool, and talked to me about how my medication will be changing since I’m on dialysis.  They are taking me off my calcium and sodium bicarb supplements. Hey, less pills for me to take is a win win! Apparently they will control those numbers through the dialysis sessions now.

She also told me I’ll be meeting a dietitian soon. There’s a pretty strict “dialysis” diet that I have to follow, which makes me limit certain types of foods – mainly those high in phosphorus and potassium. (Hence the big “K” pic above).  Potassium is the big no-no – as my kidneys do not process it correctly, and if ignored,  builds up and causes heart disease.  Don’t get me wrong, my body does need some potassium – everybody does. It controls your heart rhythm and other things. However since my body can’t eliminate the excess potassium, I have to watch my intake.  This means thing like bananas, beans, spinach, and some other common fruits and vegetables need to be eaten in major moderation.  The potassium I get from other everyday “low potassium” foods are ample enough intake.

I also need to watch my liquid intake.  I’ve read that you basically need to drink only enough to make you not thirsty.  Water levels in your body fluctuate bigtime while on dialysis, so you need to keep it at as even a level as you can so not to send your blood pressure too low or too high.  So, gone are the days of sitting around sipping on iced tea half the day, or throwing down several pints with the guys and gals.   I can drink alcohol if I wish – it’s not the alcohol that’s the big issue – it’s the amount of liquid.   So extreme moderation is the key.   I have to think of “moderation” as a different thing now.  It’s no longer “don’t get drunk”… it’s “don’t drink too many ounces, period.”… which in my opinion is a huge buzzkill – pardon the pun haha.   So through it all, my synopsis is, don’t drink alcohol hardly at all. I figure if I don’t make it a habit again, I won’t over over-do the liquid allowance.   I *might* do a glass of wine once in a great while with dinner on rare occasion but we’ll see – depends on the situation and the mood.  But for now, being “clean” is the name of my game…. in pretty much every way possible.

Terry

 

My First Dialysis Session

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Well today finally arrived, I’m at the center and all hooked up. That machine you see to my left is the dialyzer – it has a filter that does all the magic before the blood is pushed back into my body. The needle sticks weren’t painful at all, the tech found my fistula pretty easily. He said it needs to grow a little more but that’ll happen over time. But it’s connected and working and pushing blood over to the dialyzer.

I’m sitting here typing this about an hour into treatment. I don’t feel any different yet – but then again I felt pretty good when I got here today. It’s later in the day that I usually start getting super fatigued and feeling bad and going to bed at 7pm – so we’ll see how I feel later. The awesome (and very cute I might add!) nurse here told me I should start feeling better pretty quickly so I hope she’s correct!

I’m only doing a 2 hour session today. Then 2.5 hours on Wednesday, then 3 hours on Friday.  They want to baby step me in – my body wouldn’t be able to handle full sessions right away apparently. Next week I’ll be on the normal 4 hour shifts. (From 4:15 a 8:15pm).  My doctor wanted me in earlier today in case they had problems accessing my fistula – he could do some work to make it easier. But it seems to have worked out great – so no extra work is needed on my arm.

As far as amenities, they do have wifi access, as well as a small flat panel cable TV connected to my bed. I’m allowed to read, do crossword puzzles, listen to music, watch tv, work on laptop or iPad, basically do whatever I want to pass time. I’m allowed to eat small snacks and drink a little water during treatments as well, but no big meals.

They discourage visitors – although it is allowed. I wouldn’t ask that from anybody though – this isn’t a very fun place to hang out at haha. It’s mostly older people with major health problems in here – I’m by far the youngest and healthiest looking person in here today.  My doctor told me my normal 4-8pm shift will be less busy and have fewer people in here –  it looks pretty full right now.

Well I’ll update this later tonight to let you all know how I feel – but I’m not expecting much change for a week or so but who knows, we’ll see :)