The Chronicles of a Teenage Dialysis Patient

[iKAZ3D]

  HISTORY 
     My name is Weston. I started Dialysis in 2010 just a short month after my 14th birthday. I had been battling ESRD for my entire life. It was caused by Posterior Urethral Valves before I was even born. I had multiple surgeries in utero that made slight changes, but nothing worthy enough of my good health. I used to be a happy-go-lucky kid, but now, after going through a painstaking twenty-nine months and counting of Dialysis, I've began to feel as if I'm the curmudgeon of my town. Hopefully this will inform you as to why.

  The Obvious Disappointments of Life 
     Dialysis is a big pain in the ass, I'm sure we ALL can agree. For those of you who haven't done Dialysis, you're lucky...luckier than finding the pot of gold at the end of a rainbow in the sky with no visible end. The process is long, irritating and at the most disrespectful to our humanity. I hate getting cramps and screaming my head off and all they do is decrease your total fluid goal or flush you with saline (the exact mortal enemy they yell at you about for having too much of). When I'm wailing my head off, and I only have 30 minutes left out of the total 4 hours, then damnit take me off the machine. Not only that, but the Pediatric Units are less enclined to fit around your schedule. You either come at 2pm or not at all, and we all know what happens if you don't come at all. Their excuse here at Children's Mercy Hospital? They want us to finish school. Well, here's the dealio, I set up my school schedule in 2011 so that I could be at Dialysis at 1pm or thereabouts. "Dodn't Mattah". Is it so inhumane to ask to be put on 45 minutes earlier so I can get home sooner to do my stuff? Sorry, I forgot we're in a worse hell than hell. Seriously, is Hell like Dialysis mixed with Rebecca Black music being played 24/7?   

  The Never-Ending Saga of the Jerk Friends 
     I swear to Chuck Norris, when I started informing my friends of my problems and life deathtraps, they were initially supportive. I didn't talk about it nonstop (at least I didn't, they say I did), I didn't constantly go "my life is worse than yours, praise me". All I did was informed them when they asked me to a get together on Monday's, Wednesday's and Friday's (and until recently, SATURDAY's! YEAH, SATURDAY) I would have to eagerly respond with "I can't, I've got Dialysis". So, speeding up a little, my friends just got worse and worse. I posted on my Facebook a "challenge" to attempt Dialysis (simulated of course) and that backfired beyond belief.  They would say things like I'm complaining nonstop, and that I should just be happy with my life, be glad I'm alive, consider that there's someone who's got it worse than you...Of course there is, and I wouldn't dump my problems on them (in fact I don't dump anything except for occasionally on the toilet) and I was just asking that they wouldn't do it to me. I swear, I always got the same thing every day. Drama Llama's breeding quite liberally. "OMG, DID YOU HEAR THAT SUZIE BROKE UP WITH BLAKE? EHRMEHGERD, HE LOOKS GAY! LOL I HATE THAT PERSON, DON'T YOU? I HATE HER SO U BETTER HATE HER TOO". Did I mention that my ex-girlfriend cut herself and litterally blamed me verbally? That's a nice stress reducer.  So yeah, things got worse, friends admitted they know more than me and the Doctors, and well, we're at the point where if someone asked me to shove a blade through this Jude-Jerks chest, I'd do it faster than a dietitian will hound you if you Phosphorus creeps up 2 points. 

  Seriously, Why Can't I Get Transplant? 
    So, short and simple. I'm probably too fat. I'm 5'6" and am 105.9 kilos as of weighing an hour ago for Dialysis. (Yes I'm typing this on Dialysis, it makes me sad). I don't understand why they are acting like I'm such a fatty! What do you guys think, do those figures strike you as extremely abnormal?


So here we are, I'm joining this site to continue to find support, because frankly, my backdoor has nothing to give.

By the way, my hobby is writing and playing video games, but writting has been put to a complete hault until I get transplant because my writing would just be filled with anger and frustration in words.

[justme15]

I love your introduction! I think you write very well.  I'm sorry you have to be going through dialysis, though.  you will find a wealth of information and friendly people here. enjoy!

[boswife]

well well,,, quite an intro !!  surly kept my attention 
         AND, it surly sucks to be,,,well, lets say, it surly sucks to have to be a dialysis patient as an aging adult (that would be my hubby) but to be a young teen, well, that makes me sad.  I love that you gave a 'real' inside as to what it's really like to go through this as a youngun..  but it's just auful all the same.  It's tough enough to get through teen hood, much less having to carry this crap with you.  I hope that finding your way here will give you some solice and that you find some comfort seeing your sooooooooooooooo not alone in this.  Wishing you well, and wishing you a kidney 

[iKAZ3D]

well well,,, quite an intro !!  surly kept my attention 
         AND, it surly sucks to be,,,well, lets say, it surly sucks to have to be a dialysis patient as an aging adult (that would be my hubby) but to be a young teen, well, that makes me sad.  I love that you gave a 'real' inside as to what it's really like to go through this as a youngun..  but it's just auful all the same.  It's tough enough to get through teen hood, much less having to carry this crap with you.  I hope that finding your way here will give you some solice and that you find some comfort seeing your sooooooooooooooo not alone in this.  Wishing you well, and wishing you a kidney 

Thank you so much! I'm not going to hold back, Dialysis is shitty. It's the worst pain in my young, miserable life and I'm frankly getting tired of hearing "Live life to its fullest". The only way I can do that? A) Get a transplant B) Quit Dialysis. 1 grants me life but is insanely hard to acheive, and the other grants me iminate death but is extremely easy to do...WTH?!?

[iKAZ3D]

I have an hour (less than that actually) of Dialysis left and I'm constantly refreshing my post to see if anyone else has responded with words of understanding and comfort.

[iKAZ3D]

MY FACEBOOK POST:

If this post sets your anger bar off, then you are not a true friend. Don't hold back.

I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE...
DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS. I HATE DIALYSIS.
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RESPONSE:
Ryan Patton · 23 mutual friends
think of it this way. your still alive.
5 minutes ago · Like..Weston Reed Kaszer Think of it this way: BIG FRICKING DEAL. When you go through this, then you can say something. Until then, you've shown your true side, I am obligated to remove you.

[MaryD]

Hi there, iKAZ3D.  I have no words of comfort or understanding.  But I DO feel for anyone under the age of 69 who gets lumbered with dialysis.  I hope the right kidney comes your way very soon

 

[Mr Pink]

Hi there. I liked your intro. "The Chronicles of a Teenage Dialysis Patient" sounds like a great title for a book. You should get straight to work on that. You do after all have quite a bit of time to kill. Dialysis sucks, alright, and it sounds like some of your friends do as well. It's a tough break having to deal with this three times a week, not to mention having to watch what goes in our mouths (which makes a change from having to watch what comes out of it). The fluid restrictions are particularly sucky, which I found out the other day when I got hammered at a Christmas party. Having a total of 7.4 litres (no idea what the measurement is over there in Yanky Doodle Dandy Land is) is no picnic. I guess no more benders for me for a while, not at least until I'm new and improved, hopefully in a few years. In terms of losing weight, I'm trying to rid myself of a decade of over indulgence by staying away from slurpees and walking 5 kilometres (again, no idea about measurements in your neck of the woods) every night. In the new year, I'm planning on getting my lazy @rse into a gym... not so much because I want to lose another couple of stonne (there's those measurements again), but because there is a dialysis nurse who has well and truly caught my eye. So it's time to play the Rocky music, and time to transform myself into a lean, mean, love machine! You can do it too, fella. Get working on that book, keep your eye out for pretty nurses, and stay away from slurpees! Good luck!

[Lillupie]

I will be honest with you. NOTHING I WILL REPEAT NOTHING makes me sadder then to find another patient younger then me doing this. I am sorry. I started dialysis when I was 24. I just turned 30.

Now on to your friends. They are NOT going to understand. Actually most days there really isnt anything that anyone can say to me that will bring me comfort. And that is the truth. On Facebook. I complained and a few people I know actually deleted me. They said the same thing to me. One I didnt ask to get tested and I was venting, she told me "i like my kidneys". Didnt even ask her for one. I think young people especially, really dont know what to say. there are patients who live a long time on dialysis. Do we want to? Helll no!

The good news is you are under 18. Those patients under 18 are normally a higher priority then us old farts over 18  . also I see you are from Missouri, and I believe they have a shorter then average wait for a kidney then other states. Atleast you are not in california, I heard they can wait up to 10 years!

I have a friend of mine on FB that I know in real life who started dialysis about your age. He is now 24 or 25. How old are the other kids at your center?

Lisa

[Bill Peckham]

I was 27 when I started hemo and was depressed for three years; imagining starting while in high school ooof that would suck.  At least here on IHD we know what you are talking about.


Who is talking about your weight? Staff?

[Mr Pink]

Hi there. I liked your intro. "The Chronicles of a Teenage Dialysis Patient" sounds like a great title for a book. You should get straight to work on that. You do after all have quite a bit of time to kill. Dialysis sucks, alright, and it sounds like some of your friends do as well. It's a tough break having to deal with this three times a week, not to mention having to watch what goes in our mouths (which makes a change from having to watch what comes out of it). The fluid restrictions are particularly sucky, which I found out the other day when I got hammered at a Christmas party. Having a total of 7.4 litres (no idea what the measurement is over there in Yanky Doodle Dandy Land is) is no picnic. I guess no more benders for me for a while, not at least until I'm new and improved, hopefully in a few years. In terms of losing weight, I'm trying to rid myself of a decade of over indulgence by staying away from slurpees and walking 5 kilometres (again, no idea about measurements in your neck of the woods) every night. In the new year, I'm planning on getting my lazy @rse into a gym... not so much because I want to lose another couple of stonne (there's those measurements again), but because there is a dialysis nurse who has well and truly caught my eye. So it's time to play the Rocky music, and time to transform myself into a lean, mean, love machine! You can do it too, fella. Get working on that book, keep your eye out for pretty nurses, and stay away from slurpees! Good luck!

That should say; having 7.4 litres removed over two sittings is no picnic. And it isn't. I've been feeling like crap all week. I was planning on going to see the Kookaburra's destroy England in the Hockey Champions Trophy tonight, but the petrol tank is pretty empty. An early night for me instead.

[Rerun]

LOVED your intro!  If you don't have anything nice to say "sit by me".  You are a very intelligent kid.  I hope you keep your grades up because you have no excuse for bad grades you are wayyyyy to smart.  That is one way to get back at your friends.   Beat them at school. 

Ask "whomever" just at what weight you have to be in order to get a beloved transplant!  Then get there and don't let them move the number.  Focus and do it. 

After the Elections I deleted Facebook.  I was tired of all the liberal crap. 

Listen.... come here to vent and bitch.  After I found this site my friends and family hardly heard about dialysis because I found my vent place.  And people here actually know how cramps feel.  I'll say this again... Stop waterboarding political prisoners.... just hook them up to dialysis until they cramp and they will tell you where their leader lives and the exact geographical  location of their Mother.

It is great to have you here.  I'll look forward to more posts and the news that you get "the call".

I'm so glad you found us!   

Rerun, Moderator   

[iKAZ3D]

How old are the other kids at your center?

They are varied ages of 4-18. God the little kids are so fricken annoying. Lester, a 4 year old, is CONSTANTLY yelling for attention from the staff. Literally like this: "Dave! DAVE! Dave! Dave! DAVE! Jennifer! JENNIFER!!! MICHELLE!" God dang, and then there's Haasan (some Middle East name) who always presses the call button. Needs to sit up? Call button. Needs to move 2"? Call button.

Then there's the teenagers. We are all about the same age. Kim and I are 16, Tay is 18, and Jason is 17 I think. Other than that, there's really no other full on patients.

Who is talking about your weight? Staff?

Yes, my Doctor literally had nothing good to say in Clinic the other day. They told me that the surgeons have the final say and they think that they'll tell me I'm too big. What the heck ever. :/



Thank you everyone for the kind words! I'm trying my hardest in school but it's really hard when facing this depressing state I'm in. I have A's and B's in all classes except my English period. (All of my classes are Advanced Classes). I have an "F" in English because there is this ONE test that is worth 99% (exaggerated slightly) of our grade and it's strictly remembering and writing down 54 prepositions. I have terrible memory for stuff like that. If I see a preposition, I know it's one, but I can't just list them off. Thank you for the compliments of being smart. Sometimes I feel like a real dumbass because my GPA is 2.4 due to this situation of mine. I know I'm smarter than that. Sometimes I wish they graded on Quality over Quantity.

[iKAZ3D]

Hi there. I liked your intro. "The Chronicles of a Teenage Dialysis Patient" sounds like a great title for a book. You should get straight to work on that. You do after all have quite a bit of time to kill. Dialysis sucks, alright, and it sounds like some of your friends do as well. It's a tough break having to deal with this three times a week, not to mention having to watch what goes in our mouths (which makes a change from having to watch what comes out of it). The fluid restrictions are particularly sucky, which I found out the other day when I got hammered at a Christmas party. Having a total of 7.4 litres (no idea what the measurement is over there in Yanky Doodle Dandy Land is) is no picnic. I guess no more benders for me for a while, not at least until I'm new and improved, hopefully in a few years. In terms of losing weight, I'm trying to rid myself of a decade of over indulgence by staying away from slurpees and walking 5 kilometres (again, no idea about measurements in your neck of the woods) every night. In the new year, I'm planning on getting my lazy @rse into a gym... not so much because I want to lose another couple of stonne (there's those measurements again), but because there is a dialysis nurse who has well and truly caught my eye. So it's time to play the Rocky music, and time to transform myself into a lean, mean, love machine! You can do it too, fella. Get working on that book, keep your eye out for pretty nurses, and stay away from slurpees! Good luck!

That should say; having 7.4 litres removed over two sittings is no picnic. And it isn't. I've been feeling like crap all week. I was planning on going to see the Kookaburra's destroy England in the Hockey Champions Trophy tonight, but the petrol tank is pretty empty. An early night for me instead.

They can't get more than 5 litres off of me! (I like Britannic English, it makes more sense. Litres. Not LITERS.

[iKAZ3D]

My GPA stats:

Cumulative Weighted GPA   3.1945
Cumulative Unweighted GPA   2.9445

[Rerun]

My GPA stats:

Cumulative Weighted GPA   3.1945
Cumulative Unweighted GPA   2.9445

You rock.  Once you get a transplant your brain clears up.  Honest to God it will.  No more fuzzy thinking.

     

[Ladystardust24]

It's nice to meet a fellow young adult who is going through this. This instance is sadly a bit rare.

I spent six years on dialysis from ages 14-20. It wasn't pleasant, nor fun. I missed out on a lot.

People can be pretty awful. I've had medical complications from birth, so I never had a time I wasn't "sick". That said, high school in general is BS. Most people are immature and don't have any concept on how to handle these situations (And, it will happen throughout life. Hell, even some of my close family don't "get it") As an adult, things get a bit better, you can go out into the world, and meet all kinds of people. A chance to surround yourself with people who get you. Which isn't easy, all this medical stuff can make you jaded, it's a hardship that's tough on anyone. But on someone at the age of trying to figure out who they are, it's even worse. But you sound like a pretty cool person. Just keep being yourself. (I know, so cliche.) if I'm sounding a bit more positive, it's because I know it's a crap deal. Even post transplant, I still deal with a lot of medical stuff, and it gets overwhelming. But I find knowing I'm not alone is a nice thought.


I agree with folks, do the best you can with school. Ask for help in school. I found myself reading a lot. I spent so much time in the hospital that, reading was my escape.

As for transplant requirements, it is important to make sure you are doing what you need to do to get a transplant. Weight can be a issue, due to a lot of things. It's important to be at your healthiest, (So to speak) before it. Because, post transplant is no walk in the park.


Anyways, you seem like a cool guy. I'm actually a gamer too. (I currently mostly play on the Xbox, and DS) I love to write. I write quite a bit, a lot. And you know what? If you're writing is angry and full of frustration, write about it. Many great authors wrote about pain, anger and life. Your words are the best thing you have. If it's easier for you to type, I suggest a blog. I have a Livejournal (I know, old school) One thing I do look back at and wish I didn't let go, was my hobbies. I did art, and I went to art school until dialysis happened. Then I let it go, I gave up for the most part. Like I wasn't worth that, life was far too bleak. I'm only now getting back into it, but I wish I didn't doubt myself so much then.


I wish you the best. Perhaps we can exchange stories of pediatric units. I have some interesting ones.

 

[Poppylicious]

 

I'm with Ladystardust ... don't hold back on your writing just because you feel too angry or frustrated.  The written word should be raw and full of passion, plus it's a good opportunity to release some of that anger and frustration.

LitREs ... Yay! Now, don't forget it's coloUr and centRE and honoUr too ... *grin*

[Zach]

Now you've gone and done it ... joining IHD.
Welcome aboard!



 

[iKAZ3D]

What do you guys think about Home-Hemo? I want to do it so bad because it's soooo much better than in-center. (ESPECIALLY since I go 45 minutes away from home when, get this, there's a Dialysis unit 2 minutes from my house). My mom would have to find the time to have the courses over it because she works. If not Home-Hemo, I'm going to discuss doing PD, because I just cannot take it anymore.

[cattlekid]

I have been doing home hemo for a year now and to put it mildly IT ROCKS!!!     No more working around a unit schedule, better labs, less diet restrictions.  I can't say enough about it. 

Do you have an issue with needles?  Do you think you would be cannulating yourself?  I am wondering how much of the treatment a home hemo clinic would allow you to do since you are under 18.   My assumption would be that your mom would be required to do most of your treatments from a legal liability perspective. 

I can't really speak for PD as I have no experience with it.  But I think anything that would get you home and out of the center would be a bonus.

What do you guys think about Home-Hemo? I want to do it so bad because it's soooo much better than in-center. (ESPECIALLY since I go 45 minutes away from home when, get this, there's a Dialysis unit 2 minutes from my house). My mom would have to find the time to have the courses over it because she works. If not Home-Hemo, I'm going to discuss doing PD, because I just cannot take it anymore.

[iKAZ3D]

I have an arterial catheter no I don't do needles. My Social Worker is going to discuss if it's possible for me to do it myself.

[cattlekid]

Having a cath makes even more sense to go home...less chance of infections as long as you follow all the procedures. 

I think it's awesome that they are even talking about allowing you to do your treatment yourself.  I was really assuming that they would make your mom be in charge of everything...shows how much I know. 

I have an arterial catheter no I don't do needles. My Social Worker is going to discuss if it's possible for me to do it myself.

[MaryD]

PD rocks ,too!  And it's fairly portable.

[smcd23]

Hi! I am sorry you are going through this. My husband was 24 when he had his first transplant in attempts to avoid dialysis, and started dialysis when he was 25. In many ways, he feels like you. He still acts like a teenager He hates going, he misses out on a lot of stuff with his friends because he either doesn't have the energy or can't because he also now has a cath.

Sadly to say, there isn't much you can do about your situation, except try to make the best of it. You're friends, well they are young too and lets face it, you're going to do a helluva lot more growing up in a shorter period of time because of your situation. They can either accept that this is who you are, or they can STFU and make it easier on both of you by not being a fake or fair-weather friend. Trust me, your true friends will stick around. They will "get" it.

As for the weight thing, I can see where they are coming from, sort of. Have you always been heavy or is that a new development due to your kidney failure? I'd talk to them, honestly. If it's been going up because your activity has been going down (due to dialysis and feeling crappy) then I'd tell them you will try to work on it, and you will definitely lose the weight once you can be active again. They are just looking out for your safety and well being during surgery.  I was the donor, and based on that BMI scale thing, if the hospital followed it, I wouldn't have been allowed to donate. But prior to gaining a million pounds when I got pregnant (thanks thyroid) I was always "thick" and very muscular and active. Even though I carry about a half a million extra pounds right now because my thyroid still sucks, all my labs show my remaining kidney is working a-okay. So for some people, a little extra weight doesn't indicate anything.

I am truly sorry for your situation. I wish I could offer more than words and support.