Hi from Indiana

[A7X FALLENDEMON]

Well... Where do i start lol.. I was born in 1992 with a coarctation of aorta. Which for was a twist in the aorta valve of my heart. After that i had a pretty normal healthy life playing baseball and being any other kid. I lost my dad when i was 6 to cancer.. More along the lines of a blood clot dislodging into his brain. So i had to go to therapy for anger management for awhile but then i grew to understand it and again back to a normal life. Everything was going fine after that until 7th grade which i was about 13. I was running one day in gym when my chest started REALLY hurting and i couldn't breathe at all. So i kinda collapsed and just laid on the ground, my friend running the mile with me saw this and immediately ran for help. Which they called my mom and long story short we got to the ER where they said my Aorta valve because of how they cut the twist and sewed it back wasnt growing with me and it was shaped like an hourglass instead of normal  = all the way through.. Well i had the surgery to put a stint in right away and with the normal blood test to make sure everything else was ok they found my creatinine high. With some extra blood work that was when they announced that i had stage 4 renal disease.. Which of course all of you probably know stage 5 is dialysis. They rushed me into the same day surgery and put a fistula in my forearm. Well living in california they said there was a really long average wait for a kidney. My mom had a friend that lived in Kentucky and offered us a place to stay until we found our own. So we packed up and moved out their within a week. I started high school and was doing ok watching my diet for phosphorus and other things. Until my doctor called with that dreaded word... Dialysis. Now i do pretty ok with I.V.s and blood test but the moment i saw those needles and they put the first one in i wanted to die. About a 4 treatments in my arm was brusied to heck... And i didnt know how i was going to handle it any longer. But my doctor called and said your not going to believe this but we found a kidney.. It was like winning the lottery after going through dialysis. So we rushed in about 1 a.m. and i had the transplant right then on 1-20-07..  When i woke up finally i couldnt be more happier in my life.. But I had a tube down my throat and my mom was going crazy... I kinda signed to asked her whats wrong and thats when i found out i almost died.. The first dose of anti rejection you get i guess i was allergic to it really bad. And i couldnt speak and went wide eyed it was bad from what i heard... Well everything was stable and it stayed like that a couple days. But then the doctor came in and said i'm sorry but the kidney just hasnt "woken" up yet so your going to have to do dialysis until then... I just wanted to die to think i went through it and got a kidney just to have it done again... By that time i was scared to death of those needles but my brother being in the marines and me being 14 by that time i had to show i was all big and bad... So i think i handled it better than i would have.. But being on high doses of morphine from the transplant still didnt really help.. Now being 5-2013 i have had this kidney for 6 years take my meds everyday. But for some reason i have still shown signs of rejection here and there and it scares me to death cause last biopsy the doctor even came in and said i might have to come in and do a treatment of dialysis.... Other than that the kidney has been great.. But its got me starting to worry...


Now on to a more serious note though... I have nowhere else to ask this and i really dont want to on facebook because family. But you know how they say if you reject your chances to get a 2nd are very slim. Well I've been looking it up online and everywhere and i always read how dying from kidney disease is rather peaceful and even an easier way to go than most things. Is it considered suicide if you refuse to do dialysis and just let what happens happen? And you can refuse dialysis if your over 18 right? I mean i'm 21 now but it would be my choice in the end right? And if this is how i would kinda want it is there any advice to talking to my mom about it i know it'll hurt her but with getting a 2nd kidney unlikely i'd rather go peaceful than live a life of pain on dialysis cause i just couldnt handle it again... Anyone on dialysis your the strongest people i know and honestly are my heros for being able to handle it.

Thanks for reading my story and if you can help with those questions... I'd appreciated it, just really dont know what to do.

[boswife]

((((((((((((((((((((((( A7X))))))))))))))))))))))))))  I have no answers for you, but wanted to welcome you and wish you some many good years either with transplant, or dialysis.  So many here have overcome their 'hate' of the dreded D with a bit of help from others who have had to go through these same sorts of things.  I wish you well, and truly hope you'll  stick around and pick some brains and hearts.    & 

[Rerun]

Hi A7X,

Welcome to IHD.  You may want to ask your question in "Dialysis General Discussion" and you will get more answers.  Not everyone reads introductions.  People as young as you get 2nd transplants faster.... because you are young.  Don't go back to hemo.  Try PD it has NO needles and much easier for you to handle.  Get on the transplant list NOW don't wait. 

Yes, you can deny dialysis.  I'm also hoping that it is an easier death.  I do not think it is suicide to deny medical treatment.  There is a huge debate on this site about it.  You can search it.  But, I say no it is not suicide. 

Stick around..... explore your options.  It gives me POWER to know I can quit anytime if I want to.

Rerun, Moderator    

[rocker]

Way to go, kiddo!

To some of your questions:

I don't know what "the odds" are on getting a second kidney - but there are certainly a number of people around who have had three or even four transplants.  Everyone's situation is different. One transplant is certainly not the limit by any means. It depends on any number of things - but "being young" is a big factor in your favor.

As to "refusing treatment" - well, there are a number of threads on this board on that topic. Poke around, read through them - opinions differ.

But before jumping to threads about "stopping dialysis", I would recommend you read a lot more about the variety of kidney replacement therapies that you may have access to.  If these come as a shock to you, don't feel bad - many doctors will not inform you of all your options, for a variety of reasons.  You may or may not be a candidate for peritoneal dialysis - but there are few reasons why you would not be a candidate for home hemodialysis. (Is your fistula still functioning well?) Read read read. Look at the alternatives.  Some people find that in-center hemodialysis is the right path for them. Many others don't.

Being prepared with the knowledge before having to make the decision is one of the best ways to feel empowered and in control. If being stuck with giant needles by a stranger while trapped in an uncomfortable chair is your phobia - there are alternatives. Read read read.

Best of luck to you - and 

 - rocker

[Angiepkd]

A7x, so sorry you had to go through all this.  I have been on D for several months, and I can honestly say that the needles don't hurt at all if you learn how to do it yourself.  I do home hemo with NxStage and use buttonholes for my needles.  Please do not give up on life because of fear of dialysis!  Hopefully your new kidney will continue to work for many years, but if it doesn't, D is not so bad.  There are many people on this site who have had 2 transplants, some even 3. As to your question about stopping D being a peaceful way to go, I do not agree.  My dad died after stopping and it was a horrible experience.  I won't go into detail, but it was far from peaceful.  Please hang in there and don't give up!  You have been through a lot in your young life.  Dialysis is nothing compared to the things you have survived!  Wishing you many happy years with your transplanted kidney!  The people on this site are so helpful and kind. Keep asking questions and you will get experienced answers.   

[CebuShan]

     A7X!
I started D at stage 4. I was terrified of the needles, too. I learned how to stick myself mostly because of the people here in this site.
They told me it would not hurt as much to do it myself. I thought it was the craziest thing I'd ever heard but they were right!
Since you are young, you should be encouraged that you could be able to get another kidney. Check it out before giving up!
As for stopping D as a form of suicide, I really don't know. It is certainly an option to refuse treatment but there is so much out there that even at 53, I'm not ready to give it up. Who knows what they could develop in the next few years! There is a lot to learn and you will find many places to start here. Look around and ask all the questions you need to!
Again,   

[papacat]

  A7X
You have come to the right place. There are many answers to be found on this site. I can't be of much help because I am on PD and have not done HD. I hate needles too, but I have learned to give myself shots. The first time took me 4 hours!. I know shots aren't the same as the larger needles used for HD. I think I would try a Buzzy if I have to start HD. Moosemom provided a link for the Buzzy on this site under the subject of needle pain. I like doing PD because there are no needles!

Please do not give up, we need you!
papacat

[Poppylicious]

  A7X! I can't answer your questions but you have certainly come to the right place to ask them. 

*huggles*

[Wildrose]

First I want to say  ! Then I want to encourage you, as others have, to not give up. But know that if you did choose to stop dialysis at some point there are definatly many people here who would understand. I think 'legally' stopping dialysis is not suicide, but morally it could be considered that. However, I don't say that in judgement. Just an opinion. I have been on dialysis a year and it stinks, if I wasn't married with kids I would think more about just forgetting dialysis and live my life the way I want until the end. It would be a lot more pleasant that way (but a LOT shorter!).
I think we are all stronger than we sometimes want to admit. Being on dialysis and continuing with our lives on a day to day basis is hard, but its worth it.
I wish you the best and am sending positive thoughts your way!


Rose

[Lexxtech18]

AX7FALLENDEMON, first of all, nice name. I'm more of a Slipknot fan myself, but hey. lol Anyway, welcome to the boards. It always sucks to see another young person, like myself, around these parts. But it's also a great forum with tons of information that can help you immensely. 

Secondly, I know how much dialysis is a pain in the ass, I've been on for 8 years. But there is always hope. Right now you have a kidney, it may have some rejection issues, but it's there. With my first kidney transplant, it lasted ten years, I had episodes and episodes and episodes of rejection. But it kept bouncing back. And that was like... 17 years ago. So there is definitely hope for your little kidney with today's technology. Even if you have to go back on dialysis in the future, it's not the end of the world. Yeah, the needles hurt and it sucks having to go in 3 days a week. But there are options. PD, Home hemo, etc. And as far as getting a 2nd transplant goes, it is quite possible. Of course, every case is different, but I myself have had 2 transplants and getting worked up for a 3rd soon. Some people have had up to 4. It depends on a few things, like antibodies and whatnot. Thats definitely something to talk to your nephrologist about.

In short, please dont give up hope. You're young yet. And you've already been through hell and back. If you need someone to talk to, shoot me a PM. I'm always happy to chat. ^_^