I really hate dialysis

[KICKSTART]

Setting aside all the bad stuff thats happened during my switch to hemo. I have to say i really do hate hemo with a passion , after the 'luxury' of PD and i really dont know how or if i can come to terms with this , but i also know i cant come to terms with stopping , although it has crossed my mind. PD was never an issue for me , i  just got on with it and for some reason it felt like no big deal ..but hemo , hemo, feels like a prison sentence somehow. I dont think its the control issue , its just the whole package , the invasiveness of it all , the needles, the pain, the travelling backwards and forwards , the hanging about , the ignorant moody nurses. Im going to see a therapist as soon as she can organise an appt , may she will be help , maybe not? How do you come to terms and accept hemo? I know its live or die , but how do you become 'at peace' with it ?

[Slywalker]

Hang in there Kickstart.  You can do this!!!!

 

[YLGuy]

Distractions. That is how.  My son burns me shows.  Currently I am watching an HBO series called "The Wire" I am just about to start season 4 this morning thanks to the fact that someone sent me a new DVD player.  On my little table I always have the DVD player, a book (my glasses), an Ipod shuffle, a tiny radio I used to use while I jogged & a set of ear plugs.  I switch between my distractions and when I can, sleep(hence, the ear plugs).  Sleep is great because the time goes by and you are not aware.  The lady next to me prays the rosary witch I think is a great idea for passing the time.  I have only been at this since the end of March and am having a hard time as well.

[iketchum]

You know something, Its like starting a new job. You may not like it but its something you do to survive. You put in your time and then get on with living your life. Hang in there, things will get easier with time. You know what to expect and the little problems become more bearable. We all are here for you, so vent away when you have too, let us be strong for you like you have for us.

[keefbeer]

I,m on HD for 5hrs 46mins, the longest in a unit of 252 other poor sods. In order to survive this a routine is needed together with your props.
 First a TV guide so you can plan your viewing rather than just aimlessly surfing through the rubbish and missing start times of programmes that interest you.Take that days newspaper and read none of it until you are seated also keep a book just for dialysis.
Try to sleep with headphones on listening to MP3s that have play lists you have made up of melodic songs. Take in a snack and a drink but do,nt eat it until you are at least half way through your session so you have something to look forward to.
If its possible start up discussions with other patients, football and/or sex seems to get the attention of many on my unit and can easily eat up 60 minutes.A couple of us on my ward brought in some electrically powered mini helicopters these remote control devices kept us and the nurses highly amused for many hours but have recently been banned by the Camp Kommandant  ( unit manager )
There must be many time travelling tips and hints that will follow I hope mine will help.

[Goofy]

I feel so bad for you.  I personally cannot give you any advice since I'm not on dialysis but I saw my dad go through it.  I can only tell you my experience as care taker.  (my dad lived with us because he would seem to "get lost" and not show up at the center then I'd have to go all over looking for him.  I didn't know that I had PKD until after he died but the whole time I took care of him I just kept thinking what an awful life; having to live on a machine to keep you alive.

My dad was really good about it.  He fought us in the beginning but then he just accepted it.  (You really don't have any other choice unless you don't want to live any more).

Maybe that's why I'm so scared of it.  I saw what he went through and I don't want the same for me, but as with him, I have no choice.

Trust me, I don't want to even do PD let alone sit in a chair for 4-5 hours and put up with all that goes with it and I think I would feel exactly like you do.   I know I would go into a deep depression if I had to do hemo.  So I guess its only natural to feel like you do. I wish I could do something for you but unfortunately I can't.  The only thing I can do is try and support you and just listen.  Sometimes just talking about it can help.

I'm not going to say to you that "in time you will come to terms with this" because right now I'm sure you can't see that happening.  So theres no point in saying something so cliché.  At least here you have people who understand and can relate to how you feel.

So if you ever find out the solution to make you think dialysis isn't so bad, please let me know.  I'm sure I'll need it some day!  Take care. 

[Des]

I am sorry to here you are battling with this. I can see that it can be a VERY BIG change from PD.

I am honest and have to say.... I have been racking my brain trying to come up with some funny exciting thing to keep you busy while going through HD, but nothing.....

I will cross that bridge when I get there but for now my dear friend... I am thinking of YOU and I wish you get to terms with it or at least acceptance.

Hugs

[kimcanada]

Is getting a hemo machine in your home and option??  Thats what I will be doing soon.

[RichardMEL]

I agree with some of the other suggestions - find things to do to distract yourself with. I don't like it but I just see it as part of life and like you did with PD just "get on with it" - I have 5 hour sessions and they are pretty darn long (and I feel even more for keefbear now reading that he has MORE than that! argh!). I try to NOT watch the clock tick down and I distract myself with shows I download to my laptop to watch, or DVD's, or listening to kidney talk on my ipod, or tempting the nurses with M&M's and twisting their words until we all laugh (and then I have to remember not to laugh too hard lest a needle pop out!!  ) or we talk about our dreams to travel, or our pets or families, or love lives (in this case they harass me about my lack of one mostly!!).

Some days are REALLY HARD I grant you. worse when something goes wrong and you get a *#)$#*)# cramp or crash or something, or just so boring nothing can relieve it, or uncomfortable to the point you want to get up and run out... These things happen - I can't deny that they don't.

However I remember that it's only part of my life, and try to not dwell on it. When I walk out of there I don't think about it till I have to go back. I think about ways to harass the women of IHD, or work stuff, or how sweet my kitty is and that I'm going to see her soon and have cuddle time, or how hot the girl that just walked past was.. or whatever....

The thing is to have a sense of humour and remember that Dialysis is NOT the be-all and end all. Doing this will allow you the ability to do the things YOU want to do.. like play with your dogs, ride the horses, see your family, and all of that stuff.

Remember you have only just started KS, and have had trauma and a lot of frustration and hassles... when you stabalise into a routine you'll be more BORED WITLESS than anything else, and even the needles won't be an issue for you. You'll be like "meh.."

OK after 3 years I still don't LOOK at them, I turn away and think about something else (ok usually X rated... you know.. to get the blood flowing... I'm all about helping the nurses you know !!  ) and then they're in, I fire up the laptop and it's all good.

Hang in there - things will improve !!!   

[LightLizard]

excellent advice richard.
you should counsel beginners.
 

[RichardMEL]

only the cute ones!!! 

[KICKSTART]

I do read each and every post and take in all you write. It seems to me that every dialysis centre is different. At best the one im hoping to stay at doesnt even gove you a little table by your side or something to put anything on ! If it doesnt fit down the side of your chair/bed then you cant get it till after dialysis. As for chatting and sleeping ..well im one of those people that cant fall asleep in front of a load of strangers ! I probably would snore my head off  so i dont sleep and as for chatting ..everyone else either has headphones on or is asleep. It doesnt help as i seem to be the youngest in the group and if the other day was anything to go by and we get the same chairs every time then im in with 3 old men !!! one stone deaf , one slept all through and the other watched tv and slept ! NO sexy nurses on my shift !! God forbid i end up back at the other place , theres no one to plug anything in for you , the beds are all at funny angles so although you know there is some next to you all you see is there legs. I tell you the other place is a hell hole.
But apart from the boredom i need to be at peace with hemo , ive been in control for sooooooooo long . I know i can get involved in this (home hemos not an option) I just think im still in shock ?

[LightLizard]

you've had a pretty rough ride kickstart. i didn't find too much to sing about when i was doing in-center hemo, a few years back. i'm sorry home hemo is not an option for you. i know that since i've been doing home P/D that i feel much better, generally. i do miss the social interaction that was available at the center, but i too was the youngest, or one of the youngest there, so it wasn't too easy to relate to very many of the other patients. i dread having to go back to hemo, so i'm just hoping that my peritoneum hangs in there. i feel for you.
 

[Red from Canada]

KS, I really feel for you.  Although I am doing PD and love it, my peritoneum is wearing out and they are supplementing it with one session per week of hemo, so I cant get rid of my line! Ugh.  One thing that did help, we have a DVD player and get movies(new and old) from the Public Library to watch.  Each 4 hour session, we watch two good movies with a small intermission.  I know eventually I will have to go back to straight hemo, but this is still giving me a bit of freedom.  We just call it movie night and try not to let it get us down.   Take your time and think positive!  Maybe they will come up with something better eventually.
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[del]

Richard mel has really good ideas.  If you have a catheter and you like to knit, crochet, embroider, quilt etc you can things like that while on hemo. One of the ladies at the unit hubby was at made a quilt while she had a line and donated it to the unit to use as a fundraiser ( they sold tickets on it) .  Ask if yu can bring your own table to lay things on, you know one of those fold up ones.  Things will get better KS.

[twirl]

it will get better as time goes on --

[dwcrawford]

I don't think Davita Med Center got the memo that it is supposed to be BETTER....

[twirl]

they got it and
laughed
and gave us the new rules
no food
no talking
no company
no saying who sticks you


no talking rule -- as soon as you get to know a neighbor and start talking -- you are separated - I was told dialysis is not a social hour

[del]

I'm sure glad the unit hubby used to go to was so 'friendly'. He was allowed to eat, socialize and have visitors!!  He had a treatment at a center yesterday.  I put his needles in but couldn't do anything with hooking him to the machine because it was a totally different machine than we have at home. I went and got myself and him some lunch and I stayed in the unit during his entire treatment. The nurse even went and got me a chair to sit on!!! 

[dwcrawford]

they got it and
laughed
and gave us the new rules
no food
no talking
no company
no saying who sticks you


no talking rule -- as soon as you get to know a neighbor and start talking -- you are separated - I was told dialysis is not a social hour

No food - does this apply for diabetics  (and will they take the fried chicken away from the old lady who's daughter feeds her with her fingers?)

No talking -- nobody to talk to anyway but will this apply to people who spend the day talking on their cell phone?

No company -  hope this gets rid of some noisy visitors.

No saying who sticks  you?  That's the one I got today.  Was told by this guy I'd never seen before if I didn't let him stick me I'd have to wait an hour for someone else and that the place was too big to always have someone I knew and trusted to stick me.

Does this mean looking for a smaller unit elsewhere?  Its the only place my doctor visits but I guess there are other doctors.

I hated saying "I hate... but I'm there now!  Bring on  all the corporate greed.  I've dealt with it before.

[Goofy]

Twirl, you're joking, right?

[jbeany]

twirl, that is complete BS.  You have the right to refuse treatment by anyone at any time.  And not being allowed to talk is totally rude!

kickstart, hang in there.  The first month is absolute hell. It took me that long to settle into a groove.  Distractions are good.  I found an mp3 player the most useful - I could blast something I wanted to listen to when the other patients were yelling or snoring.

[dwcrawford]

Could have said the same things and better things about my unit 2 weeks ago Del (and did many times).  Times change when the bottom line becomes primary and patients secondary (or lower)

[dwcrawford]

At Davita Med Center Dialysis, the largest dialysis center in the world, as of this week  you cannot say who sticks you.  That part is not a joke.

[willowtreewren]

OMG! Twirl and Dan. this is awful! I wish there were some way to change things for you!