I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: iKAZ3D on December 05, 2012, 01:29:52 PM
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:sos; HISTORY :sos;
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.
:banghead; The Obvious Disappointments of Life :banghead;
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? :lol;
:grouphug; The Never-Ending Saga of the Jerk Friends :grouphug;
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. :stressed; 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. :sarcasm; 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. :lol;
:bandance; Seriously, Why Can't I Get Transplant? :bandance;
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.
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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!
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well well,,, quite an intro !! surly kept my attention ;D
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 :flower;
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well well,,, quite an intro !! surly kept my attention ;D
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 :flower;
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?!?
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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.
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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.
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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
:2thumbsup;
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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!
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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 :sarcasm;. 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
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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?
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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.
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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! :rofl;
Rerun, Moderator :welcomesign;
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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.
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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! :P (I like Britannic English, it makes more sense. Litres. Not LITERS. :P
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My GPA stats:
Cumulative Weighted GPA 3.1945
Cumulative Unweighted GPA 2.9445
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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.
:thumbup;
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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.
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:welcomesign;
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*
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Now you've gone and done it ... joining IHD.
Welcome aboard!
8)
:beer1; :beer1; :beer1;
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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.
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I have been doing home hemo for a year now and to put it mildly IT ROCKS!!! :bandance; 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.
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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.
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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.
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PD rocks ,too! And it's fairly portable.
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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.
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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 (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/11/i-am-thankful-for-nxstage-and-the-freedom-it-provides.html), here (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/11/more-thoughts-on-the-meaning-of-nxstage-freedom.html)). 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.
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Hey Weston, great to meet you and glad you joined, this really is a great site :welcomesign;
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. :banghead;
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 :bandance;
Take care and here's hoping things look up very soon xxxx
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OH my goodness, honey, can you write and express yourself well!!!!! :bandance; 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. :) :bow;
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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
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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 :kickstart;
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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!
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:welcomesign; Weston!
I agree with everyone else that you should keep writing. :clap; 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! :cuddle;
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Wow this is an old intro, but you write so expressively people are still commenting!! :clap; 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!
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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.
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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 :welcomesign;
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OH my goodness, honey, can you write and express yourself well!!!!! :bandance; 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. :) :bow;
I will! If I become rich and famous, all iHD members will get my books free! <3
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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 :welcomesign;
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
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That's almost 10 kilos. Good job! Keep it up. It's good to hear from you. :2thumbsup;
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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. :welcomesign;
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That's almost 10 kilos. Good job! Keep it up. It's good to hear from you. :2thumbsup;
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!
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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. :welcomesign;
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.
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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!
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I'm a slow reader. I write fast, read slow. Ironic, eh?
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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).
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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.
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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.
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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.
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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? :cuddle;
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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? :cuddle;
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... :rofl;
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Consider going to Camp Independence, a one week (July 21-26) camping experience for kids 8-18 who have renal failure. I was involved with the camp when it first started as a special program of the National Kidney Foundation of Georgia in the late 1970s. It is now a part of Children's Healthcare of Atlanta. Older teens (15-18) are especially welcomed. It is an amazing experience and I think you would have a lot to offer.
While application deadline was May 8, there are still spots available. Call Stephanie at 404.785.0631 for info.
Here's the web site: http://www.choa.org/Childrens-Hospital-Services/Transplant/Family-Support-Services/Programs-and-Events/Camp-Independence
Application: http://www.choa.org/Childrens-Hospital-Services/Transplant/Family-Support-Services/Programs-and-Events/~/media/CHOA/Documents/Services/Transplant/Events/Camp%20Independence/Camp-Independence-Camper-Application-2013.pdf
My Children's hospital has a Camp called Camp ChiMer that will be around the same time.
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My Children's hospital has a Camp called Camp ChiMer that will be around the same time.
Yes, I see that Camp ChiMer is from July 28-August 1, a couple of days shorter than Camp Independence. Have you attended in the past? One of the reasons I suggested Camp I. is it would be more like a vacation in a different part of the country. You would also be meeting new kids your age with same experiences. Have you gotten away from home much for any extended period of time? A change of scenery for a while could be really good! Plus, there's no reason you can't go to both!
I have gone to it for the past 2 years? I think. No, I haven't been anywhere out of state for an extended period of time since I went to Myrtle Beach in 2009 (Before Dialysis).
My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers. My mom's gone to Florida about 2-3 times (can't remember how many) since then and my Dad's gone to Pennsylvania a couple times.
Nope...I'm homebound. I've been "promised" vacations.
Yeah right.
I want to go to Europe. Doubt that will happen.
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You can't be calling the other kids "retards" or they will send you home!
:shy; :rofl;
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You can't be calling the other kids "retards" or they will send you home!
:shy; :rofl;
:banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead;
I don't/didn't do that.
It. Was. An. Inside. Joke. :lol;
Retarded Seal. Arf Arf Arf. :clap; :clap; :clap; :clap; Arf Arf Arf. Retarded Seal.
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My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.
Your parents don't have to do any scheduling. That's your clinic's social worker's job.
If you were to go on a vacation with one of your parents, where would you want to go?
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I have gone to it for the past 2 years? I think. No, I haven't been anywhere out of state for an extended period of time since I went to Myrtle Beach in 2009 (Before Dialysis).
My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers. My mom's gone to Florida about 2-3 times (can't remember how many) since then and my Dad's gone to Pennsylvania a couple times.
Nope...I'm homebound. I've been "promised" vacations.
Yeah right.
I want to go to Europe. Doubt that will happen.
Well then, really look into Camp I. Might not be the perfect "vacation," but at the least you'll be able to get a break from your parents! Give Stephanie a call on Monday. Can't hurt.
Well, I'll have to next year. My sister is coming down, so I'm already missing valuable time with her by going to Camp ChiMer. In fact I might even cancel. My (half) sister is the most understanding of all. She's always there for me and I love her to death!
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My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.
Your parents don't have to do any scheduling. That's your clinic's social worker's job.
If you were to go on a vacation with one of your parents, where would you want to go?
HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA :rofl;
Children's Mercy? Do work? No no no, you must be mistaken. Most things are supposed to be our job to do.
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Well, that's really crappy. I'm sorry to hear Children's Mercy is such a waste of space in this regard. That must be really frustrating.
What do the other kids do? Do they ever get to go on vacations?
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My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.
Your parents don't have to do any scheduling. That's your clinic's social worker's job.
If you were to go on a vacation with one of your parents, where would you want to go?
My Choice?
1. Italy
- Rome
- Venice
- Countryside Vineyards & Mountains
2. Sydney, Australia
3. Berlin, Germany
4. London, England
5. France
- Paris
- Monte Carlo
6. Monaco
7. Seattle, Washington
8. Los Angelas, California
9. New York City, New York
10. Dublin, Ireland
11. Honolulu, Hawaii
12. Moscow, Russia
13. Toronto, Canada
14. Athens, Greece
+ Crete
15. Hong Kong, "China"
I'm expensive! This is my wish list.
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Well, that's really crappy. I'm sorry to hear Children's Mercy is such a waste of space in this regard. That must be really frustrating.
What do the other kids do? Do they ever get to go on vacations?
I don't pay attention.
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Well, that's really crappy. I'm sorry to hear Children's Mercy is such a waste of space in this regard. That must be really frustrating.
What do the other kids do? Do they ever get to go on vacations?
Well, that's really crappy. I'm sorry to hear Children's Mercy is such a waste of space in this regard. That must be really frustrating.
What do the other kids do? Do they ever get to go on vacations?
Background:
The vast majority of dialysis centers are not set up to meet the unique needs of adolescent esrd patients. That's why kids are treated at pediatric medical centers
until reaching 18 years of age. And, over 70% of esrd adolescents under 15 are on PD. It is the preferred form of treatment for younger teens and especially infants/small
children because of the difficulties in maintaining vascular access. Also, the more lenient fluid/diet restrictions with PD than hemo is important in the physical development of
kids during their growing years.
Another reason for greater utilization of PD in younger patients is, unlike conventional dialysis centers, there aren't pediatric facilities on every corner. Many kidney kids live
long distances from pediatric ESRD centers, making it prohibitive to travel to them 3 times a week.
I'm not saying the SW at Children's Mercy isn't lazy, but it is quite difficult for adolescents on hemo to find transient dialysis. That's why so many "kidney kamps" have been
started over the years. They do provide all forms of esrd treatment for kids. At least it can be one opportunity for them to get away for a while and also be surrounded by
others like themselves. I attended Camp Independence both as a volunteer and NKFG staff member when on hemodialysis during my late 20s-early 30s.
It was an amazing and powerful experience watching and interacting with the kids.
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May I suggest that you add Helsinki, FINLAND to your list? It is just beautiful. It is also the home of Nokia.