I Can't Believe I'm Here But Hello

[RichardMEL]

A couple of things for you BeachLover - from my perspective and experience anyway - others may vary:

With regards to going to the toilet - what I have (ahem) seen done is a mix of pans if needed or the preferred method... well the preferred method is that you don't go at all - so go before you start and/or hold on. Also note that in most cases folks who start dialysis will tend to dramatically decrease their output so going is less of an issue when on Dialysis for most of us (phew). However, most of the time they disconnect you from the machine (a fairly lengthy process) and you go off do your thing, then reconnect back up. There's an older gentleman at my unit who does this every second or so session.

Do you get breaks?? LOL.. No breaks!! I'm still waiting for my holiday from dialysis let alone getting 10 minutes off during the sessiion!   Anyway you're sitting or lying there - that's one long break most people would think!!

How do you sit for  5 hours? First of all not everyone does 5 hour sessions. In fact in the US it is more common than not to do around 3, though some do 3.5 or 4. It all depends on factors like your labs, your weight and stuff like that. One thing to remember is that the more you get the better it is for you since it's replacing an activity that normally goes on 24/7. That's what I remind myself when I see people finish an hour before me and my backside is sore!! Now how do you sit? Well the chairs do recline to a variety of settings (depending on the sort of chair it is) so you can lie back more if that's what you prefer. I tend to sit up and watch my laptop but that's just me. I have bunches of pillows to put behind my back and behind my.. behind!! to make it more comfortable.. and of course the trusty blanket. I've seen others bring an entire quiilt ("comforter"?) in and cover themsemselves with that like they're in bed. It's not easy to do but you get used to it because... well.. you need to.

I know I only answerred a few of your questions... hope it helped a little bit.

[Lucinda]

Hi beachlover. I love your name as well.  The main reason I don't want a transplant is because I will be restricted as to the amount of time I spend in the sun.   I just started dialysis a couple of weeks ago and trust me when I say that what you are imagining is 10 times scarier than the actual process.  The sitting is the biggest problem.  The needles are fine and after your first day you will surprised at what all the fuss is about.

I am having teething problems with dry weight and a few other issues but all in all I am pretty fine.  I am there 8 hours at the moment, four days as I am doing training for home dialysis.  As for the toilet issue.  They will take you off if you need to go to the bathroom.  Strangely enough though, like you I was going all the time but I manage to make it through the five hours without having to go.  RichardMel is gorgeous and I love him dearly  but don't listen to him about "Hanging on".  Hanging on can cause a urinary tract infection and that's something you don't want.  The toilet issue was the thing I was worried about most before I started dialysis but I go just before I go on and go just after I come off and I am fine with that.  I never thought I would be able to do that.  Your body just seems to adjust to the new conditions.  As for the cramping, once you start you will find that will ease up as well.  You will find your body will adjust just find to the new restrictions of constriction.

You are getting some good advice as to how to spend your time while on dialysis.  I am training while I am doing it so I don't have much time for anything else and then I am going to be nocturnal at home so hopefully I will sleep through it.   As you are smoking...which I think you will naturally look at giving up when you start your dialysis...get a blood pressure machine and keep and eye on your blood pressure.  I had no fluid retention before I started or any shortness of breath but I was starting to feel nauseated all the time.  A few days before I started dialysis I started feeling well again.  Keep in mind that if you get a virus or the flu or another illness of some sort your creatinine and urea will rise but it may only be temporary.  I am seeing my neph today because the nurses at my clinic feel I may have been started on dialysis prematurely.  They think the rise in my urea was caused due to a virus and my own kidneys have kicked back in.  That is really unusual but try not to get your bloods done if you have another type of sickness as that will put up your creatinine and urea.  Anyhow, all the best with your journey.  You are in very good hands here.  xx 

[Bajanne]

Welcome to our community!  Sorry to be a bit late, but I have been having all kinds of connection problems. When I saw your name, I thought you might have been from my neck of the woods - the Caribbean.  But I see you are my neighbour.   I am so glad that you joined us.  I found IHD just before I had to start dialysis, and I am eternally grateful for the help and preparation that I got from it.  You are really in good hands here.  This is now more than just a website; it is a family and you get to be part of this very special group of people.  Continue to take advantage of all this site has to offer.  Keep reading and keep posting.





Bajanne, Moderator

[twirl]

we have small individual televisions -- you could move it close to your face and bring ear phones -
reading is not too easy with one arm in the cuff and the other one with needles -
we can eat at our unit -- or, I can eat -
it is a long, boring four hours -
listen to music or maybe books on audio -
talk on the phone -
it is so normal to be afraid
I wish you could fine the thread that Reruns talks about her first dialysis treatment -- it is so funny and so true ---
I almost did not go to dialysis and that was 4 and a half years ago -
stop dreading it  -  it is going to happen no matter how you spend your time worrying -
it is not a joy - but you will have your life

[dwcrawford]

Not a joy?  It's a pain in the butt!  Or literally the back -- find the right pillow and the angle in which you are most comfortable.  Regardless, it won't be comfortable by the fourth hour.  I try to watch the little TV.  It actually has cable and HD but no premium channels.  But really, the center is too noisy.  Probably in a smaller center it would be better.  The first thing I did was make friends with as many nurses and techs as I possibly could because when they have a couple of minutes they'll s top by and talk.  Also, make friends we as much of the staff as possible.  My fellow "inmates" all sleep and there is no talking to them.  I took my ipod but couldn't here today.  Today I ordered some good Noise Reduction Headphones.  I'll let you know how it works.  I thought about taking my laptop as the center has wi fi, but i can't see a possible positive where I could work (play) on the computer.  I think I'll get a simple DVD player instead.  I've never before sat still for more than 30 minutes at a time.  It is painful.  You have to either sleep or keep your mind occupied.  Maybe count the tiles on the ceiling or the number of times the machines "beep" at you. (that's awful).  At 30 minutes before I leave, I start hassling the nurse about getting off early.  It hasn't worked yet.

A real life style change... you gotta love it!

Dan

[Zach]

Better late than never ...

Welcome to our community!
 

[valve]

Hello Beachlover!

I actually just joined this site last night and had a chance to get on here today to put on my introduction and read some posts.  I got to yours and read it and all the replies.  The one thing I can tell you for the needle sticks, if you are afraid of them hurting they do have a numbing cream or spray that you can use.  Just let your doctor know that you will be interested in that so he can order it for your because it is a prescription.  I know that there are two types...there is a spray (I never used that one) and there is a cream.  The cream is called EMLA cream, it is a lidocaine cream.  You put it on your site about an hour to an hour and a half prior to your treatment time and cover it with plastic wrap.  I have used this product about a month after starting my dialysis and was actually a little upset  that nobody told me about it sooner.  The cream is amazing.  I don't feel any of my needle sticks. 

The other thing I wanted to let you know that I have a fistula in my upper right arm (dominate arm).  You will still be able to use your arm, they just tell you not to lift anything heavy.  My doctors have told me not to lift anything over 20 lbs.  But other than that I use it all the time.  It has gotten a little weaker since my fistula but I think that is because I can't lift anything heavy, like a depleation of my muscle. 

Also, with a fistula once you have your needles in it is best not to move your arm.  The reason for that is the needles can come out of the fistula or poke through it causing you to infiltrate.  Now, with a graft you have more freedom because it is a rubber tube which is thicker than an actual vein.  I don't want to make this sound scarier but I want you to know.  I am only 37 and have gotten used to it.  I thought I was going to have a big problem with the needles and sitting there for so long.  But to tell you the truth it is not that bad.  You'll get used to it.  I did and trust me I'm not the type of person to sit still for more than an hour at a time. 

I hope the best for you and that your fears are overcome.  Just take a deap breath...I was EXACTLY the same way when I started.  Be thankful of this site because when I started I didn't have anyone to talk to or ask questions.  Everybody here seems to be very helpful.

God bless!!!!!!

PS. remember to ask for the emla cream.