The Chronicles of a Teenage Dialysis Patient

[Bill Peckham]

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.

I'm thankful for home hemo (here, here). I do it by myself, overnight, while I sleep. It could work well for you. What I say is the most important criteria to successfully go home is the dialyzor wanting to do it.

[lou]

Hey Weston, great to meet you and glad you joined, this really is a great site 

Sorry to hear about the shittyness of dialysis and some of your friends, i think people just  have no idea what dialysis is like (my friends never really did and i was in my 20s on d) so i bet teenagers are even worse.   

You sound like a really cool intelligent guy and i definitely think you should keep up with the writing....i see a bestseller with your name on it in a few years 

Take care and here's hoping things look up very soon xxxx

[christijo]

OH my goodness, honey, can you write and express  yourself well!!!!!    I loved reading this. Was feeling soooo sorry for myself tonight. I read this and it made me smile tonight. Your writing is a gift, my dear friend. I  had soooo many friends and am a people person. Hubby should be in a nursing home but dont want to lose my  home and we dont have insurance so my life is filled with taking care of  him 24/7. Friends are  gone out having a good time.

YOu should write a book, I would buy it!! Seriously, I loved reading  your writings. Please keep writing.                        

[RichardMEL]

Welcome to IHD, Weston!

I only just saw this even though it's a month old - my apologies.

Some thoughts from me.

You write very well indeed - very expressive - and those of us who have had anything whatsoever to do with dialysis I am certain can relate very much to your comments and feelings.

Like a couple of others here responded my heart breaks when I think of any young person having to deal with all this stuff - even more so for a child or teen - at such an important part of life where your focus should be on school, friends, romance(or just trying to fumble around in the dark with someone hehe), having fun etc. Me I'm middle aged.. I've done a lot, I've seen a bit... I have more to do and see.. but hey I have handled D OK, but I can't imagine how much tougher it is for you.

Those friends will not understand and unfortunately I could see before you said it that your fb "challenge" would not work out (sorry). It is a good idea- don't get me wrong - but the sad fact is that the majority of "friends" in life are really more the fair weather sort. Only a very few people you will ever meet in life are REAL friends who stick with yiou no matter what and accept all the crap that goes on etc. Those others, honestly (and this is human nature, not to target anyone specifically) while they may not say it outright, or even consciously think it, they want a good time mate. Even if you don't go on about your disease or situation, even if you say "I can't come over/play games with/see a movie/etc because I have to be at D" - it's a reminder of something unpleasant they'd rather not contemplate. and it makes you the "drag" because you can't do so many things - no fault of your own and I'm sorry to put it like that - just from their point of view...

and it's very hurtful and ony adds to the frustratin and pain caused because you damn well wish you could be doing all that stuff and not sitting in that chair on that damn machine cramping and all that. Yeah, I hear you.

All I can offer is that the real friends in your life, and there may only be 1 or 2, even if they don't full understand what it is like (you really can't till you've been there) they'll stick by you.

I will just touch briefly on the weight issue in respect to transplant. At 5'6" and 105kg I did a quick BMI conversion and that comes to 37.3. Now used to be that a BMI over 30 was considered dangerous for big ops like tx. I think though that has changed recently to maybe 33 or 34, but I don't have a source on that. I can understand why the doctors are on about your weight because that is a pretty high BMI and weight you have there and that will contribute to health issues (eg: cardio, blood pressure etc) down the track. Half the reason, I understand, to want a lower BMI for tx is that it's pretty stressful on the body to have this kind of surgery and you want to be in the best condition to accept an organ (and then for that organ to continue to function well - for example if you're dealing with higher BP due to weight issues, that would be seen as a pretty big risk to a transplanted kidney since high BP is a major cause of kidney failure in healthy kidneys). In order words, as horrible as it is to think about (and again, I am not trying to make YOU feel worse here) the medicos are actually doing this for a good reason for your wellbeing, not to mention the potential for a long lasting transplant.

Now I don't know how you addrss that, and I would be responding to the doctors, nurses etc that "OK. I want a transplant and I want it to work for as long as possible so I can fumble in the dark with someone (and all that other normal type stuff!! ). What can *we* do to make this happen?" - and by WE I mean you and your team - there must be options if you are unable to exercise/diet to help bring your weight into a more normal range (it's even harder with CKD I know) so there may be more medical options to help. I guess I'm saying rather than resenting the focus on your weight, try and be proactive about it and work on fixing it. It probably won't be easy, and it sure as hell won't be quick, but think of the goals you have to make it worthwhile?

It really does suck for you, and I feel like a real Grinch in writing the above because it doesn't *seem* very supportive at all, but I mean it in the best and most positive kind of way to try and help. I can't possibly pretend to understand what it's like to be in your shoes, and I am sure there are a million reasons  why this post is wrong for you in many ways, but the intent is there.

Finally, I would like to again welcome you to IHD. This *IS* a community you can come and vent and those of us here will understand much more than many who are not directly involved in the kidney community could know or understand or appreciate. You write so well don't waste that talent !!

RichardMEL, Moderator

[lmunchkin]

Welcome Weston!  You are so very young indeed.  Seems to me there was an infant, don't quote me on this, that her mother was doing D. & having to do her infant too.  That may not have been on IHD though.

My husband has done PD & Hemo.  As a young lad as yourself, I believe PD (CAPD) might be the better option for you.  But you have to be mindful of Sterilization.  Making sure everything is done in a clean enviroment.  You are not tied to a machine for so many hours.  You do however, have to excuse yourself to do an exchange.  T.Barrett has been doing this method, and quite well with it. 
That being said, PD did not work well for my husband as far as getting good cleaning.  This NxStage has work fantastic for him, and Me too for working around my schedule.

Maybe T.Barrett will read this, and give her insite.  Good luck in the future Weston, sorry you have to go through this!

God Bless,
lmunchkin

[Leanne]

Awesome intro dude and very eloquent and accurate I might add of how others seem to act. Truly they say you complain...well its definitely something to complain about. Also, they cant take it because really you sit with railroad spikes in your arm for hours in a place that smells like bleach and vinegar while they practice sports or get their nails done.  Compared to you they have nothing to complain about.  Yes, its great that we arent dead and it could be worse.  We also dont need someone to tell us that.  I think you write very well and so what if you write something angry? Might make you feel better.  People here might want to read it.  I would read it.  Im not too terribly old but everyone at my center could be my grandparents.  Glad to see you here, and write away!

[CebuShan]

     Weston!
I agree with everyone else that you should keep writing.      Especially about your experiences with D. Who knows, it just might open a few eyes as to what you go through. I thought I knew about D when I started but I was soooo wrong!
I do home hemo and I love it! My husband is my helper. (I do most of it myself) and I have a couple of friends that we are training to be backups. (I can't believe the center said we could train them but they did!)  It definitely fits MY schedule and not the other way around.
Best of luck to you. Come often to rant, vent or just check in.  We're here for you!   

[Lexxtech18]

Wow this is an old intro, but you write so expressively people are still commenting!!  Keep it up, dude!  I can understand how bad it sucks to be a teen on dialysis. I was 17 when I started. I missed out on a lot, always felt sick, in and out of the hospital. I lost a lot of friends as well, due to their lack of maturity. It's not fair, the hand you're dealt sometimes. But that's life and I think being sick has really opened my eyes to how the world really is. like ladystardust said, don't stop doing what you love. Make dialysis work around your schedule and be happy! And if you're angry, write about it! Come here and bitch or do a blog or something. Hold onto that spark!

Take care, sweetie!

[ianch]

I know its tough, particularly in facilities.  Strict polices around pressure/fluid and in my experience lack of training did create an environment of depression and anger. 

I found personally that my blood stats went down on short intensive sessions and vitamin levels took a hit.  So low i was having outburst at people for no reason.

I could get annoying banging on about Home Dialysis, but really it changed everything for me.  Its now just routine doing 24 hrs a week while I sleep, and I work 50+ hours a week as well.  The long session have increased by blood stats by up to 50%.  I feel better, happier, and have more energy.

 

[gothiclovemonkey]

wow, guy, we are the same height and weight almost! ha! Im listed for tx, but INACTIVE until i lose more weight and officially stop smoking (yes, i AM a dumbass!)

People are jerks, especially teens your age. I cant even imagine dealing with them, while also dealing with dialysis. I had some illnesses growing up, and those jerks were unforgiving, rude, ... @#$%^&* (fill in the blank...) Due to that, I have never really been blessed with many offline friends... The ones I do have are much like what you described... I call them fair weather friends. And even that is giving them more than they probably deserve. They are ok to message and say Hey how are you? but dont dare be honest... *rolls eyes* Family is often the same way, for me. They just dont get it. And, sadly, they dont have to.. They are blessed with health.
It is quite unfortunate that people dont understand, and sometimes I do think they have good intentions, just dont know what to say, but then some are just buttheads.

You really do have quite a talent with words, and I think you should seriously consider using that talent.
(i shouldnt admit) Usually, I scan through posts, but I read yours word for word, it had me captivated.

As someone who is of your size and height, let me warn you,(while i dont really believe this) My surgeon told me that pd wasnt working for me due to my size... (another opinion was that im allergic to the tubing, which makes a bit more sense to me...)
Dont you love the "you are too fat" excuse for EVERYTHING?!? But then you turn around and see people twice your size getting a new organ, or doing something that you were told is impossible. Screw that, seriously, just because we are large doesnt mean that we dont try... Dont let that stop you, guy!

Oh, and btw 

[iKAZ3D]

OH my goodness, honey, can you write and express  yourself well!!!!!    I loved reading this. Was feeling soooo sorry for myself tonight. I read this and it made me smile tonight. Your writing is a gift, my dear friend. I  had soooo many friends and am a people person. Hubby should be in a nursing home but dont want to lose my  home and we dont have insurance so my life is filled with taking care of  him 24/7. Friends are  gone out having a good time.

YOu should write a book, I would buy it!! Seriously, I loved reading  your writings. Please keep writing.                      

I will! If I become rich and famous, all iHD members will get my books free! <3

[iKAZ3D]

wow, guy, we are the same height and weight almost! ha! Im listed for tx, but INACTIVE until i lose more weight and officially stop smoking (yes, i AM a dumbass!)

People are jerks, especially teens your age. I cant even imagine dealing with them, while also dealing with dialysis. I had some illnesses growing up, and those jerks were unforgiving, rude, ... @#$%^&* (fill in the blank...) Due to that, I have never really been blessed with many offline friends... The ones I do have are much like what you described... I call them fair weather friends. And even that is giving them more than they probably deserve. They are ok to message and say Hey how are you? but dont dare be honest... *rolls eyes* Family is often the same way, for me. They just dont get it. And, sadly, they dont have to.. They are blessed with health.
It is quite unfortunate that people dont understand, and sometimes I do think they have good intentions, just dont know what to say, but then some are just buttheads.

You really do have quite a talent with words, and I think you should seriously consider using that talent.
(i shouldnt admit) Usually, I scan through posts, but I read yours word for word, it had me captivated.

As someone who is of your size and height, let me warn you,(while i dont really believe this) My surgeon told me that pd wasnt working for me due to my size... (another opinion was that im allergic to the tubing, which makes a bit more sense to me...)
Dont you love the "you are too fat" excuse for EVERYTHING?!? But then you turn around and see people twice your size getting a new organ, or doing something that you were told is impossible. Screw that, seriously, just because we are large doesnt mean that we dont try... Dont let that stop you, guy!

Oh, and btw 

Thank you! I'm in awe that you would read my words word for word.

I agree. The "you're too fat" thing has run its course just a little too long. How about they cut the crap. I've seen plenty of kidney transplants go successfully well on kids and adults twice and three times my size. It's bullshit. I must not gloat, though, but I did lose some weight. I'm down to 97kg as my dry weight! I got to 96.4 the other day! XD

[MaryD]

That's almost 10 kilos.  Good job!  Keep it up.  It's good to hear from you.       

[Angiepkd]

Congratulations on the weight loss!!  While I personally don't agree with keeping someone from getting a transplant due to size, I admire your courage to make it happen.  Losing weight is so hard, even for a healthy person.  To lose while on dialysis and feeling crappy is quite an accomplishment.  Keep up the great work!  I loved reading your introduction.  You are a very talented writer!  Have you ever considered offering to talk to other teens dealing with dialysis?  Your humor and understanding would probably really help them.  I have only been on D for a few months, and do NxStage home hemo.  So far it has been good.  I am feeling much better.  PD or home hemo may make you feel better and have more energy.  That seems to be the general consensus from IHDers.  Just a little advice from an "old lady" about high school - while it might seem like your friends and school are very important right now, once you are out, you hardly think about it.  Not easy to believe, but very true!  You are an awesome kid and will do big things in your life!  Keep up the good work and hang in there.  Life gets better after high school!  Looking forward to reading more posts from you.   

[iKAZ3D]

That's almost 10 kilos.  Good job!  Keep it up.  It's good to hear from you.       

Hehe, lately I've been a little lack-luster in my mood. I haven't been willing to do much of anything. I promise to be a little more active! I want to be a welcomed member!

[iKAZ3D]

Congratulations on the weight loss!!  While I personally don't agree with keeping someone from getting a transplant due to size, I admire your courage to make it happen.  Losing weight is so hard, even for a healthy person.  To lose while on dialysis and feeling crappy is quite an accomplishment.  Keep up the great work!  I loved reading your introduction.  You are a very talented writer!  Have you ever considered offering to talk to other teens dealing with dialysis?  Your humor and understanding would probably really help them.  I have only been on D for a few months, and do NxStage home hemo.  So far it has been good.  I am feeling much better.  PD or home hemo may make you feel better and have more energy.  That seems to be the general consensus from IHDers.  Just a little advice from an "old lady" about high school - while it might seem like your friends and school are very important right now, once you are out, you hardly think about it.  Not easy to believe, but very true!  You are an awesome kid and will do big things in your life!  Keep up the good work and hang in there.  Life gets better after high school!  Looking forward to reading more posts from you.   

I've always understood that High School means absolutely nothing once you graduate. Once they hand you that piece of paper, it's all you'll need. That paper is it. Nothing you learned is good. You'll learn whole new topics in College. Everything you learn in High School is pretty much a bust, a filament, a way to keep you occupied for 13 years. No, wait, scratch that, to keep you DETAINED for 13 years. Just recently, I've realized that I've got to stick it to my school to stop forcing us to read what they want us to read. When in life are you forced to read a certain book? Sure, someone may suggest a book to you, but does that automatically mean you must read said book? If the book doesn't interest me, what says I should have to read it? My teacher? No. I like the way Elementary School had it. You picked a book around your Lexile, you read it, than you wrote an essay on it. I'm going to round up my friends and go to the School administration with a proposal that they change the system to better suit people that don't read as fast. If the book is actually of interest to a person, wouldn't, theoretically, they read it faster and more accurately and with more definition? That way grades would improve and there wouldn't be such a creative hiatus in my school anymore.

[Angiepkd]

You are cracking me up!  Detained is an excellent way to describe school.  Awesome that you are brave enough to take your concerns to the school administrators.  Give 'em heck lol!

[iKAZ3D]

I'm a slow reader. I write fast, read slow. Ironic, eh?

[iKAZ3D]

I am officially leaving iHD. Please pretend as if I have passed away. Clearly this was not as I was expecting. The people here are NOT respectful of the fact that I am younger in anyway, nor are they respectful of my differing opinions. Also, the moderators seem to favor long time members, so I don't play well with favortism. Thank you for the attempt.

RIP Epoman, Goofynina and Bajanne. You had the right ideas and mindsets.




I guess you can pretend I'm dead now. I bet some of you are happy about that (some of you act as if you have a hatred of me).

[amanda100wilson]

I know that I have been  critical of what you post, but do I have a hatred of you? No, of course not.  You cannot, however, make controversial statements and not expect to  get a response that may not support your views.  I am not claiming to be Mrs. Wisdom or anything, but I do have a lot of years of life-experience over you, and that does count for something, believe me.  When I was your age, I was very confident of my own opinions, but with the hindsight of age, I realise how little I knew.

Actually, this is the first time that I have read your introduction, and I thought that it wad very well written, although anget and frustration, spill ou of it.  Having to deal with this at your age,this is very understandable, and I cannot begin to imagine what it must be like.  I was bad enough when I started in my late 20's.   Have you looked anymore into home dialysis, either PD or home hemo?  This would definately improve your quality of life.   I have been doing home hemo for the last 18 months and it has definately improved my life.

Anyway, what I am saying, is please don't leave.  If you just tone down the controversial stuff and just come here for supportt, I am sure that you will find that we are not a bad bunch.  don't forget we also have our own problems and frustrations with life.  None of us are exactly leading a normal life, whatever that is, either.  So, although I do not intend ologizing for my comments, I will apologize for uspsetting you.  at the end of the day,mwe ate all survivors of kidney disease or are related to those who are, and we should support each other.   I hope you will give this another try.

[MooseMom]

iKAZ3D, did you read what I posted to you on another thread?  In case you haven't, I'll summarize here.  I tried to tell you that as a young dialysis patient, you have a lot to offer to other young dialysis patients who may be lurking here right now.  You have a lot of offer ANYONE who is just starting dialysis.  You have experience.  Coupled with compassion, you can have a lot of good things to share.

Rocker gave you some good advice, which was to try to focus on something other than just yourself.  Maybe that's a hard thing to do at 16; I don't remember.  LOL! 

We are a community that supports people in various stages of renal disease, especially those on dialysis.  The other threads are just distractions.  They are not the core purpose of IHD.  Please do not let the political threads deprive yourself of people who can really help you if you give them a chance. 

Not a lot of 16 year olds get the opportunity to spend much time talking online to people outside their peer group.  Maybe that's a reason for some of the clashes you've had with certain members.

[iKAZ3D]

I know that I have been  critical of what you post, but do I have a hatred of you? No, of course not.  You cannot, however, make controversial statements and not expect to  get a response that may not support your views.  I am not claiming to be Mrs. Wisdom or anything, but I do have a lot of years of life-experience over you, and that does count for something, believe me.  When I was your age, I was very confident of my own opinions, but with the hindsight of age, I realise how little I knew.

Actually, this is the first time that I have read your introduction, and I thought that it wad very well written, although anget and frustration, spill ou of it.  Having to deal with this at your age,this is very understandable, and I cannot begin to imagine what it must be like.  I was bad enough when I started in my late 20's.   Have you looked anymore into home dialysis, either PD or home hemo?  This would definately improve your quality of life.   I have been doing home hemo for the last 18 months and it has definately improved my life.

Anyway, what I am saying, is please don't leave.  If you just tone down the controversial stuff and just come here for supportt, I am sure that you will find that we are not a bad bunch.  don't forget we also have our own problems and frustrations with life.  None of us are exactly leading a normal life, whatever that is, either.  So, although I do not intend ologizing for my comments, I will apologize for uspsetting you.  at the end of the day,mwe ate all survivors of kidney disease or are related to those who are, and we should support each other.   I hope you will give this another try.

Unfortunately I can't. My parents are divorced. I live with my mom, and she has to work so she can't get the training. My dad is starting a job soon, so that would be out of the question.

I have not handled Dialysis well. I made a dramatic transistion from loosey goosey, happy go lucky kid to a down wright unhappy anger house. Things tick me off to no end. I'm upset at the fact that nobody read the context of my post.

I didn't say it too him, nor was it in anyway directed at special needs people. It was an inside joke that he is well aware of.

Not to mention normal teen problems such as dovprced parents, the shitty friends (as highlighted in the "ignorant things people have said to you" thread), the effect Dialysis has had on my learning curve and school work, and otherissues, I can't handle bull-bleep.

I'm writting this ON dialysis now, so, yeah.

[MooseMom]

I've just read through this whole thread, iKAZ3D, and I am really happy to see how many people responded to you when you posted your intro.  I'm not sure how I missed it; perhaps I overlooked it since I'm neither a teenager nor a dialysis patient.

You have every reason to be furious with life and with your "friends" who shovel a load of platitudes without even knowing how to spell "dialysis". 

That said, IHD gives you a safe place to vent with people who have perfected the art of venting!  You are in the right place here, whether you know it or not. 

Please do not cut off your nose to spite your face.  Please do not deprive yourself of the valuable coping mechanism that is IHD, OK? 

[iKAZ3D]

I've just read through this whole thread, iKAZ3D, and I am really happy to see how many people responded to you when you posted your intro.  I'm not sure how I missed it; perhaps I overlooked it since I'm neither a teenager nor a dialysis patient.

You have every reason to be furious with life and with your "friends" who shovel a load of platitudes without even knowing how to spell "dialysis". 

That said, IHD gives you a safe place to vent with people who have perfected the art of venting!  You are in the right place here, whether you know it or not. 

Please do not cut off your nose to spite your face.  Please do not deprive yourself of the valuable coping mechanism that is IHD, OK? 

I'll try, but only if I get reassurance that things like religious beliefs are sacred and they are not to be infringed nor imposed. I felt all too imposed by Hemodoc with some of his statements regarding religion when he knew perfectly well I am not religious. Words are one thing, religions are another.

I respect the effort put into this site, but I don't respect the outlandish attitudes towards MY beliefs, simply because they are off course of the majority.

Thank you for the kind words.I'll talk at you later, I'm about to get done with Dialysis.

One issue I'd like to bring up is getting a suitable chat box implemented. That may help with discussions such as mine. I don't think the chat box we have now works...

[noahvale]

*