Greetings From Colorado

[slothluvchunk]

Hello all,
My name's Jonathan, and I'm a 29 year old dialysis patient.  I've been on dialysis for four years (this week is my anniversary) after a failed transplant which lasted just shy of two years.  My transplant was from a living-related donor - my Mother.  I lost the kidney due to several factors, the most important one being non-compliance.  I regret every day having lost that kidney, and anxiously await my chance to try another.  I can't say that I hate dialysis, because it is the single thing keeping me alive right now.  I am extremely thankful for my life.
Some of you will understand what can lead a person post-transplant to deciding that they don't need to take their meds anymore - and some of you will not.  It is simply a fact of life that this happened, and I was left with two choices as I saw it:
learn and move on, or not.
Perhaps at some point I will go into the details of that - this seems a safe enough place.

As I said I've been dialyzing for 4 years now, and have a non-dominant AV Fistula.  I began self cannulating earlier this year, for the purpose of establishing buttonhole sites.  I now stick with blunt needles into my buttonhole sites, and thankfully require very little interaction with the techs.
Don't get me wrong, the techs are almost always great people - they're just people who don't really get paid enough to consider their job important enough to really pay attention to.
I'm informed, and make a point to inform others when I can.  I've had many trials and tribulations while on dialysis, and rather than complain about them non-stop, I try to inform others so that they may take responsibility for their own healthcare. 
I don't know how many times I've had some procedure done that didn't need to be, simply because I was doing what the doctor told me. 
I am the only one who can monitor my care, and I am the only one who knows whats going on inside.  The doctors and nurses are being paid by me, the dialysis consumer to be tools in enabling me to take care of myself.  To that end I question everything, and try to be as proactive as possible in my healthcare.  This doesn't mean not listening to the doctors.  It means listening to them very carefully, and being informed enough to be part of the decision making process.

I am currently listed for another transplant, and each year inch up the list a bit more. 
I understand that a transplant is trading one set of compromises and problems for another, and am ready again for that trade. 

On a personal note, I am a musician, and work full time rebuilding pianos.
I am also a total geek, and love to waste incredible amounts of time in front of the computer.  I do some graphic design, and web design as well, focusing in standards compliant design.

I guess that's about it for now - I'm sitting in my dialysis chair as we(I) speak.  After a year and a half of hassling DaVita, I finally got them to put in a wireless access point here for me.  I was able to convince them it was much more secure than allowing me to just hack through their network via the ethernet ports behind the dialysis chairs. 
Their brilliant IT department created a nice wireless network, then left it wide open for any passerby to use  *shakes head*   ... oh well.

[Bajanne]

Welcome to our site.  I don't know why I thought that you had posted here already.  That was a great introduction.  It is clear that you have much to offer our site, as I am sure we have lots to offer you.
One thing, you have issued a serious warning to us who are not very compliant.  I hope that many of us would read and heed!
Thank you for your candour.  I look forward to hearing much more from you.

[goofynina]

Hey Slothluvchunk,   Welcome to the best website regarding this matter.  Here you will find more questions and answers than you can ever imagine.  Feel free to read all of our posts, ask questions where ever and whenever you want and please make sure you check out the I Hate Dialysis.com Site Rules.  in the General Discussion.   We all look forward to hearing from you and we are all here for you if you need any questions answered, rants heard, jokes heard,  we got it all here.... 

[Sluff]

Welcome to the site Slothluvchunk

[kitkatz]

Welcome aboard!  I hope you like it here!

[Rerun]

Hello and welcome.  After reading your introduction, it seems that you don't need this site, but we definitely need you.     I'm anxious to hear your input on some of the issues brought up here.  It sounds like you have learned from your mistakes and can help someone going down the road with your experience. Jdat just got his kidney and I hope you are next!

[Hephs-little-lady]

Welcome to the site, it's good to have you on-board! 

[Joe Paul]

slothluvchunk, welcome. I'm Joe, looking forward to reading your posts, sounds like you have lots to talk about.

[Mom3]

You have a wonderful proactive attitude about your dialysis and it is good that you have learned from your mistake with going off the anti-rejection meds.

You sound like an incredible young man about the age of my youngest son, who is also on dialysis. Looking forward to hearing a lot more from you...

Welcome!

Mom3

[girlfriend]

Hello Colorado..

Welcome.. I truly enjoyed reading your intro. Your outlook is a good one.. I feel strongly as you do, about the care you get and know what your getting.. You yourself are the only one who knows whats good for you, and must act on it.. Getting all the information and being part of the process of decision making is an important one. I made sure I was in on the part of my treatment and being that it was not all known .....as it seems to be at times now.. I was allowed to help (created such a fuss they had to let me) LOL  (at the time of my dialysis in the 70S we were not even allowed to know what out own blood pressure was... Sure am glad that is in the past.

Barb / girlfriend

[angieskidney]

I had already typed a lot but when I was correcting a quote mistake an admin didn't know and there was a screw up as we both were editing at the same time (I would ask any admin to realize I am a forum mod on another forum and to please give me 5 min time to fix any post I am doing. That way we aren't editing at the same time - thx). Here is my 2nd attempt lol:

Sloth I am glad you are here and I totally can understand why you were non-compliant in the past. I had my first transplant when I was 16 and I just wanted to fit in and hated the side effects. I gained 32 lbs in 28 days. People would tell me I was fat and that I shouldn't eat .. but at being so skinny where my doc accused me of being anorexic I didn't know a diet where you try to lose weight. I was 98 lbs at 5'3" before the transplant.

My transplant lasted longer than yours probably only because intermittantly I would take my meds. But toward the end I put my job first because I didn't want to be judged by my health. I have now been on dialysis for 5 years (PD for 4 hrs and HD for 1 yr).

I am thinking of doing the button-hole technique becuase I have a lot of scar tissue in my arms. I was told I should by another patient who is now on another shift in my unit

I have to switch to the morning shift to be able to learn it but my AV Fistula is not yet strong enough as just this past dialysis it exploded (doesn't look as bad as that phrase sounds .. but they said it burst and I was like "what do you mean?? What just happened?? Is that bad?? Can I bleed to death that way??" I wanted answers and the nurses seemed to be like "it is no big deal" and completely oblivious to my panick. I guess I hid it better than I thought since they seemed so calm and I didn't wanna look like an over-reacting idiot). I wanted to ask since you seem to know so much. When a fistula upon putting the the tuniket (I am not sure how to spell it but that rubber thing they put on your arm) or upon sticking you with the 15 gauge needles .. suddenly burst making your arm swell and then eventually bruise ... should they stop sticking me and use the permcath since I still have it and let the fistula mature? My Canadian dialysis unit seems to love to rush things and follow procededure to the "T". They say 3 times with one 17 gauge needle and one in the perm cath .. then 3 times with both the 17 gauge needles and then 3 times with the 15 gauge needles and I should be set. But I don't think my fistula is ready since it first burst a little on Monday with that rubber band thing and then on Wednesday when they went to stick the needle in even tho it wasn't the same spot.

I also wanted to know .. what is a non-dominate AV Fistula. Does that mean it is in the non-writing arm?

Also I wanted to say that I am also into webdesign (I taught myself how to do so) and I used to be in a band with a guy who has very rare keyboards such as the minimoog and the optigon. Thought you might know what those are

Anyway, I am glad you are here and home you post often and hope my post is not too long

 - Angie

[Epoman]

I had already typed a lot but when I was correcting a quote mistake an admin didn't know and there was a screw up.....
 - Angie

I would like to point out that I am the ONLY Admin of this site and I did no such thing, I think you are referring to a Moderator. In the world of site management the two titles are not interchangable. Just wanted to clarify. 

[goofynina]

Angie,  I am the moderator who was TRYING to fix your post and all this information wasnt even on the post.  you had nothing but quotes and your reply was one line long AND in the quote box, and since you have done the same mistake several times in the past, how would i know you were going to correct it yourself,  i have apologized already,   

Goofynina - Moderator

[slothluvchunk]

Angie, thanks for the kind reply.

What you're describing sounds more like a mistake cannulating than it does an exploding fistula.

Fistulas don't just explode - unless there is already aneurysm present.  Typically (especially in new fistulas) when upon needle insertion the site balloons up - it is a sign of a bad stick.  Usually the tech grazes the side of the vessel wall, or just goes all the way through the fistula (infiltration).  Sometimes -as I've had happen several times- the tech screws up the stick in the beginning, weakening the fistula wall, which later gives way under the pressure of the venous site and "explodes" open during treatment.
Again, this doesn't just happen on its own - it happens when the strength of the fistula has been compromised, usually due to a bad stick.

Have you thought about sticking yourself?

*and now I will go spellcheck, as that appears to be of top concern around here - though somehow grammar seems less so*
**great ... passed!**

[Epoman]

Angie, thanks for the kind reply.

What you're describing sounds more like a mistake cannulating than it does an exploding fistula.

Fistulas don't just explode - unless there is already aneurysm present.  Typically (especially in new fistulas) when upon needle insertion the site balloons up - it is a sign of a bad stick.  Usually the tech grazes the side of the vessel wall, or just goes all the way through the fistula (infiltration).  Sometimes -as I've had happen several times- the tech screws up the stick in the beginning, weakening the fistula wall, which later gives way under the pressure of the venous site and "explodes" open during treatment.
Again, this doesn't just happen on its own - it happens when the strength of the fistula has been compromised, usually due to a bad stick.

Have you thought about sticking yourself?

*and now I will go spellcheck, as that appears to be of top concern around here - though somehow grammar seems less so*
**great ... passed!**

Yes, it is very important to me, and I am not going to defend it or explain myself yet again to another member, just do it. It really is not to much ask of my members, don't you think? If you DO wish to know why it is important to me, just read this thread: http://ihatedialysis.com/forum/index.php?topic=411.0 read the whole thread to get a better understanding.

- Epoman
Owner/Admin

[angieskidney]

Angie, thanks for the kind reply.

What you're describing sounds more like a mistake cannulating than it does an exploding fistula.

Fistulas don't just explode - unless there is already aneurysm present.  Typically (especially in new fistulas) when upon needle insertion the site balloons up - it is a sign of a bad stick.  Usually the tech grazes the side of the vessel wall, or just goes all the way through the fistula (infiltration).  Sometimes -as I've had happen several times- the tech screws up the stick in the beginning, weakening the fistula wall, which later gives way under the pressure of the venous site and "explodes" open during treatment.
Again, this doesn't just happen on its own - it happens when the strength of the fistula has been compromised, usually due to a bad stick.

Have you thought about sticking yourself?

I have been wanting answers on this as they don't explain it to me. The sticks were going fine and there were no alarms on my machine ... yet on Monday when they put the rubber band on my arm to put the needles in ... the fistula higher up on my arm started to leak (a bubble developed and they said it was a weak spot in the fistula so they used higher up for the 2nd needle and it held but then on Wed when she stuck me it "blew" and it swelled up (leaked blood) and bruised.

I can't say if she stuck me wrong at any time as I don't yet know how to know! That is why I am asking. I am desperate to learn! I want to be in control of my own care but how can I be when I lack the answers?? I want to eventually stick my own self but I can't do that until I start dialysis on the morning shift as there is no one on my shift to teach me.

Also .. is it bad or dangerous what happened to me or does the fistula heal itself? I wish my arm was transparent sometimes so I could just see what is happening to me It scared me when my are swelled up like that and the nurse said the fistula blew. I was like "it blew??!?!?! Wtf!"

[slothluvchunk]

Epoman:
(not hijacking the thread here but...)

I understand your reasoning and agree.  You came across as aggressive in your post - sorry if I misread you, but there's no reason to be.

It's your forum, do whatever you want.  If people don't like it they can always leave...


  I've run a lot of forums over the years, and understand why you do this.  I also understand that it is an exercise in futility, and an endless annoyance for you.  I only try to lighten things up a bit by poking fun at it.  I DID afterall check the spelling, as I continue to do in each and every post.
It's the same problem Dalee has on the dialysis_support list.  There is a way emails are supposed to be composed, and most people don't follow the instructions - its maddening I'm sure.
But please don't react so angrily with me - I'm spell-checking.

[Epoman]

Epoman:
(not hijacking the thread here but...)

I understand your reasoning and agree.  You came across as aggressive in your post - sorry if I misread you, but there's no reason to be.

It's your forum, do whatever you want.  If people don't like it they can always leave...


  I've run a lot of forums over the years, and understand why you do this.  I also understand that it is an exercise in futility, and an endless annoyance for you.  I only try to lighten things up a bit by poking fun at it.  I DID afterall check the spelling, as I continue to do in each and every post.
It's the same problem Dalee has on the dialysis_support list.  There is a way emails are supposed to be composed, and most people don't follow the instructions - its maddening I'm sure.
But please don't react so angrily with me - I'm spell-checking.

Sorry, I didn't mean to come off aggressive, as you get to know my posting style, you will know when I am mad.  I do notice that you do indeed use spell check and I appreciate it, I just thought to myself "oh crap, here we go again", someone else who's going to tell me I'm a "spelling nazi"  But you are right it is an ongoing problem, but it has gotten so much better than a few months ago. This site will live on after many of our deaths and our words here will be read for many, many years to come and I just want future members to look at this site and see the original founders set the example. 

[slothluvchunk]

As we say in my hood:

word

Which is a brilliant one word way of saying "You know what, you're totally right and I completely agree with you!"