As Dailysis taken over your life!!

[kevno]

For me the weeks just seem to roll into Tues, Thurs and Saturdays dailysis days.  The days in-between just seem to fly by! I can not believe how quick February as come around. I have had a word about this with rerun when I got my days mixed up!  It seems to easy to get the days mixed up. When you are on dailysis. All I seem to think about is dailysis.  It all revolves around theses days. Dailysis as taken over my LIFE! I felt a lot better when I was on CAPD Just going to hospital once every 2 months.  Now 3 times a week, it seem like nothing but hospital, doctors and nurses.

Kevno
Another RANT by Kevno!

[Sara]

Are you able to get out at all, take a trip here or there?  Could that help?

[kevno]

Sara unfortunately it does not work like that for me. even if I have a day out, I know the next day it is hospital again for Haemo. Plus the Nurses may try One or Two needles. Allways have that going though my mind. Plus the day I am not on Dailysis they seem to go so quick.  You do not get a chance to enjoy them. It all revolves around heamodialysis.  I know it's sounds a big crazy.  But it is like that for me. I just Hate Dialysis mostly Heamo. Been back on it now for over five years.  Still can not get used to it. Found CAPD was OK for me, but can never go back to capd.

Yours

Kevno

[Sara]

This may sound dumb, but would it be possible to come up with a treat for yourself that you only have/do on dialysis days?  That way you have something else to look forward to?  Maybe see a movie at the theater, buy a new Maxim magazine, go to the gun range, whatever you like to do, only do it on those days?

[twirl]

it is like in college   I had T day classes and M day classes   MWF were M days

only college was way more fun and I could drink a lot more

[flip]

My life is too important to let something like dialysis take it over. I like to have fun and I've even made dialysis as much fun as possible. I seldom think about it until it's time to go in. I usually schedule other things before and after my treatment so that it doesn't dominate my day.

[mikey07840]

I understand how you may feel. I do PD 5 times a day. It takes about 45 minutes from hook up to unhook. This means I am always a few hours from my next treatment. I can't wait until I can go on the cycler.

Mikey 

[Treasure]

Kevno, I know how you feel. As much as I try to fight it, dialysis keeps taking over my whole life. I guess I'm an empty glass person, hehehe. I plan getaways when I can-- though it often means I will miss dialysis for one  session, if I do go anywhere. I've really got to kick this kidney thing, one way or another, because I'm never going to be able to work dialysis around the things I really want to do. I would like to go on archaeological digs, for weeks or months at a time, so that I can do the research for my thesis.  A professor recommended that I start a Ph.D program at a Queensland college, and while I don't have to attend in person, it would be nice to able to march when I finish, but raising the money to do dialysis out of the country is prohibitive. I would like to travel with my family (and their trips abroad are fast paced and there's no time for dialysis-- and forget dialysis cruises, no one wants to go on one of those). I want to join the Peace Corp and help people in really poor communities around the world (and don't tell me I can do that stateside, because I already have...for many of the past 30 years...and I want to make an impact elsewhere, for a change)

I do try to make the most of my time off. I either sleep all day...or just go, go, go, coming in at 4 or 5 in the morning, after a long drive to see my kids that live in other areas. I'm just biding time, until I'm free! But maybe you can find a way of channeling the disappointment, anger, etc. One of my ways of coping during in-center time was to ride the bike at dialysis, with the tension turned ALL THE WAY UP, riding like I was Lance Armstrong (ah, I miss my catheter... my goddamn needles pop out if someone walks swiftly past my chair...hehehe). Having to be at dialysis still sucked, but I spent the bike time focusing on making my transplant happen (it did, in spite of everyone saying, no way!) ...and I also lost a ton of weight, hehehe.

[angellady07]

Insomnia is taking over my life!

[stauffenberg]

I agree with Kevno 100%.  On dialysis, the absolute requirement to make the time investment of 7 hours (including preparation, transport, waiting, and treatment) at the same time three times a week every week for the rest of your life simply destroys all capacity to plan, organize, and enjoy your existence. You find yourself reduced just to reacting to the iron grid of the treatment schedule to which you are nailed, and you never have enough space to yourself to build any projects on a larger scale than just dealing with the treatments.  Whole years, indeed whole decades, can fly by because your life only has an on-off day structure, not any units the size of whole weeks and months when you can plan and execute major projects.

When I was a kid we used to play 'King of the Hill,' which is a game in which children try to take possession of some prominent spot while the children who are already in possession of it try to keep them off.  We had a rule that you couldn't hover over someone and keep pushing him down every time he got up, since this was unfair and ruined the game.  You had to give him a chance to get to his feet and try to take the hill again.  This is exactly how dialysis ruins your life: as soon as you have recovered from the treatment on one day, you are already confronted by the next day's treatment before you can get anything important accomplished.

[twirl]

dialysis has become a demanding force in my life
days off ---- yeah                 dialysis on 
I worry about fluid over load
I worry about eating the wrong things but do it anyway
I have been the name at the end of the five recent update posts on the home page many times, twirl on all five.....
I am either at dialysis or on IHD or thinking about both

[kitkatz]

But you know you can manage to do things if you think it through. Vacations are possible all over the United States while on dialysis.  Even major projects can be broken down into manageable increments.  Yes, dialysis tends to take over your life. You just have to occasionally beat dialysis back with a large stick and move on in your life!

  <<<<<<My big stick

[flip]

Seven hours? Wow. I maybe spend 4. You must have a long drive or something. I'm usually running within 10 minutes and off in about 15.

[Ang]

dialysis  does  take  over  your  life  whether  you  like  it  or  not.

it  affects  you  in  all  facets  of  your  life  from  mental  to  physcological.
as  much  as  i  try  not  to  let  it  overtake  my life,it  does  from  sleep  to  food  to  drink  to  general  feeling  lethargy  and  so  on,but  i  keep  on  keeping  on  as  i  don't  fancy  the  alternative.

[twirl]

Ang     well said   

[petey]

This is going to sound really strange, but dialysis has taken over my life more than it has Marvin's (and he's the dialysis patient).  We got into a conversation about this very topic just a few days ago.  Marvin said to me, "Do you think about dialysis every minute of every day?"  and I answered, "Well, yes, I guess I do."  Marvin said he didn't -- and he really doesn't.  However, I'm the "worry wart" in this couple, and Marvin's health, his meds, his doctors' appointments, and his dialysis consume my every thought.  Marvin said this wasn't healthy for me and that I had to quit thinking about it so much.  But, he couldn't tell me how NOT to think about it all the time.  So, yes, Marvin's dialysis is on my mind every minute and it has totally affected my life.  I'm not complaining -- that's just the way it is for me.

[jbeany]

Tomorrow is my day off, and I really, really need it this week.  Dialysis kind of took over every spare minute this week, since I was having machine problems with my NxStage Pureflow unit.  I had to have it replaced.  That involved a great deal of time spent on the phone, dealing with techs and shipping and it's not over yet.  I still have to figure out how they want me to get the old one back to them, since they didn't include a pick up label so I could just send it back with the delivery man. 
I'm also having access issues, which no one at the center seems the least bit worried about, and that's frustrating me as well.  I'm having to spend ages holding my needles sites since my graft is dying.  Why do I get the impression that something would have been done about it much faster if I was sitting in a chair in center, and no one could leave until I was finished bleeding?  But I'm sitting at home watching reruns of Law and Order while I hold my sites for an hour, and no one seems to worry since I'm not wasting their time, just mine.

But then again, my one day off will be spent trying to take care of my increasing ill and incapable grandmother, so it's not even going to be a real break for me.

Okay - yup, I'm done now!   

[twirl]

when your schedule is                M,W,F        dialysis
                                               S,T,T,S      IHD

[petey]

twirl, my schedule is
M, T, W, Th, Fr, Sat = home hemo for Marvin
and
M, T, W, Th, Fr., Sat, Sun = IHD (yep, I'm addicted to this place and all of you guys)

[mikey07840]

Or your schedule is:
Monday 5 CAPD exchanges
Tuesday 5 CAPD exchanges
Wednesday 5 CAPD exchanges
Thursday 5 CAPD exchanges
Friday 5 CAPD exchanges
Saturday 5 CAPD exchanges
Sunday 5 CAPD exchanges
Rinse. Lather. Repeat.

[KR Cincy]

Anything that takes up this much of our liives has to, at a minimum, get in the damn way!
I'm fortunate to do home hemo so at least I decide what days and what times I do treatment...that bit of control (along with the looser diet restrictions) make having the machine and the supplies in our home extremely tolerable. I don't lose time with my family, I'm surrounded by my stuff, and when I'm done I just stumble up the stairs to my bed. It makes it very easy to keep dialysis in a more agreeable perspective!

[The Wife]

My partner doens't have a life.  He's always in pain, exhausted, can't get out...so yeah, it's taken over his life. 

[G-Ma]

Thank you Stauff for what you said.  I feel so tied to that chair...not able to plan to get away for God forbid 3 days with everyone around me going places for several days etc etc..this is all a large part of my depression too as I used to just love to get up and go at the drop of a hat or end of a workweek and now we are all stuck in this JOB we don't want to have to do.  I also need to know how to learn how to deal with this.
G Ma

[kevno]

Boy it's been a long time since i have been on this tread. Tell you the truth, when on capd which i was for 13 years. that never seemed to take over, even though i had to do exchanges 4 x aday. was always out. felt really well. on hemo all i think about tue,thu,sat. trying to type this post on hemo. left handed. so sorry for mistakes. on hemo i hate it. ples with my needle phobia, the day before all i can think about is that bloody needle.