I have become Dialysis "Destroyer of Lives"

[talon999]

Anyone know how this feels? Dialysis is all I think of. All I talk about. It has taken over my life. I am either recovering from a "session" or getting ready for my next "session". This kinda sucks !!
I plan my life 1 day at a time. At best my life lasts 2 days (Saturday & Sunday non-d days). For years I have planned to take my daughter on a cruise for her 16th birthday. Well in January of
this year I was told that I would be on Dialysis within 1 year (yahoo!). So we hustled and moved the trip up to this spring. My daughter, my girlfriend and her daughter and my niece were all set
to go. Well I spen the vacation in the hospital and I made them go on the cruise (too late to change reservations). I guess it was a great trip. Wish I could have been there to see my daughter
enjoy it. I did get great hugs whan she got back but...... Sorry about the rant.


Mark

[Ang]

talon 999


i  think  everybody  gets  these feelings  at  one  point  or  another,
the  most  important  think  you  need  to  do  is  to  not  allow
this  illness  to  run  your  life,  you  need  to  live  your  life  as  best  as  possible
and  the  illness  comes  along  for  the  journey
find  something  you  can  do/enjoy  that  that  distracts  you  from  the  daily  goings  on  with  this  illness.
good  luck  with  it  all

[twirl]

please rant
we understand
I feel the same way---- tomorrow at 4:15am I get up to start another week of MWF dialysis   waiting for Sat and Sun
and it goes on and on and on
what Ang wrote is so true
take care

[flip]

There is only one thing that I would wake up at 4:15 am for.....and it sure ain't dialysis

[twirl]

There is only one thing that I would wake up at 4:15 am for.....and it sure ain't dialysis

a shot of vodka and a sleeping pill-

[stauffenberg]

As I have noted before, when I first started dialysis and told my non-medical friends about having to go for hospital treatments for four hours a session every other day, the most common comment I heard was, "That's horrible!  How long do you have to go through that?"

[peleroja]

I don't know if this will help, but there are dialysis cruises.  You and the family could go and you could still get the dialysis, you need.

[okarol]

Hey talon,
For six years we didn't really go anywhere because of Jenna's illness. We took short weekend trips, but that's all. My husband is disabled which complicated things. I would read about people traveling on dialysis, but I was just too fearful to do it. And I was also hoping Jenna would get "the call." Things don't always turn out how you expect. If Jenna had been feeling better I might have made more of an effort to arrange hemo out of state or in another country. But she was struggling, tired and it was so overwhelming. During that time my younger kids missed out on a lot. I regret it, but I don't know what else I could of done.
Dialysis doesn't have to destroy lives. It should prolong life. I know you're disappointed, missing your daughter's birthday cruise. Try to plan some other special things and try not to put your life on pause. That's my advice anyway, but it's easier to say than do. I had a difficult time and now we are trying to make up for lost time.
 

[keith]

I don't know if this will help, but there are dialysis cruises.  You and the family could go and you could still get the dialysis, you need.

this is true my wife and i had planned to take one on our anniversary , but i got a transplant and we made other plans.

[Stacy Without An E]

I know exactly where you're coming from.  I'm a very ambitious person and there's more I want to accomplish in this lifetime and it just kills me that a majority of the time all my body wants to do is stay in bed.  Many plans have been devoured by Dialysis' huge energy appetite.  Sometimes I feel I'll only have my life back in any capacity when I have a transplant.

I fight and fight and fight the turmoil of Dialysis and more often than not, I lose.

Sometimes, surviving just isn't enough.

[RichardMEL]

Understand totally.

I try to cope a few ways:

I want to live my life as normally as possible so I try to not focus on dialysis. It's something I have to do to live. I never want it to control or define my life... If it ever comes to that then I would wonder if that "life" is worth living.

I keep my mind on other things (or try!). I work - and I find this an invaluable aid... it creates some normality and allows me to focus my brain power on something more interesting and useful than UF targets and remembering to take the binders. Plus it keeps me around co-workers and friends which too is invaluable socially as much as anything. I couldn't bear sitting at home between sessions with nothing to do but focus on that. I realise not everyone is able to work while on dialysis and I consider myself very lucky to have the energy and ability to work (for now, anyway) and also an understanding boss when sometimes I'm not doing so well.

Apart from flirting with the lovely ladies on here I also try to focus on other things... such as supporting my football team, and doing family activities and so on.

I try my best to not think about dialysis when I'm not there. I mean sure it's always in the back of my mind - like when I check my fistula, or take my binders, or are thinking about how much I've had to drink and so on, but that's almost second nature now. I don't really talk about it at work or at home unless someone asks or there's a reason (eg: "Oh I can't make that meeting Tuesday afernoon, can we do it Wednesday?").

Like I said I try and focus on other things and live my life as much as I can within the limits.

[Meinuk]

Kidney failure has shaped my whole life.  I had to learn to make peace with it, because it was always a battle I was destined to lose.  During my childhood, it was visit to doctors and invasive procedures, and watching my mother die with ESRD. I was almost symptom free for my teenage years and my twenties, so I was like a death row inmate on parole, I ran around the globe chasing rainbows, and getting distracted by anything that caught my fancy.

when I was in my 30's my health started to decline, and I settled down to a routine of work, doctor's appointments and a few vacations.  January 2007, I started dialysis, and I was obsessed.  I found IHD and spend hours and hours reading posts, all I could think about was dialysis.  I stopped seeing a lot of my friends.  I kept going to work (which saved my sanity) and my friends from work rallied around me.  Dialysis has brought us closer.  It took me almost a year to tell some people that I had started dialysis.  I had just avoided them, and I didn't want their pity.

Slowly, I have started living again.  I've been taking baby steps. Short trips, sharing e-mails with old friends, making new friends.  All while integrating a 5x a week dialysis schedule.  It has been an adjustment.  I bumped into an old artist friend while I was at a museum last week.  He still has no idea that I am on dialysis, even though we played catchup for quite a while.  He talked about his new baby and his work, I talked about a recent trip and how much I was enjoying the exhibit.  I didn't realize until hours later that I never mentioned dialysis (because it was the furthest thing from my mind)

So, that is me so far.  It has been a battle to not let dialysis be a destroyer.  I win some battles and some days I lose them, but I am up for the fight, one day at a time.

[twirl]

I am getting in the dumps b/c it will be a D morning
up at 4:15am ( not for the reason Flip would be up at this hour )
hope I do not have a bathroom problem
hope the time goes by faster
ohhhhhhhhhhhhhhhhhhhhhhhhhhhh

[flip]

I've already done mine today. I slept thru most of it and really feeling wired now. Bathroom breaks are good. It gives you a chance to stretch and walk around for a bit.

[paris]

RichardMel and Meinuk,  you two seem to have it right. I love your attitudes.  You make me a better kidney patient.  When I was first diagnosed, the disease owned me.  Now, I don't let it.  You two help by setting such a positive example.

[RichardMEL]

RichardMel and Meinuk,  you two seem to have it right. I love your attitudes.  You make me a better kidney patient.  When I was first diagnosed, the disease owned me.  Now, I don't let it.  You two help by setting such a positive example.

oh you know I'm just saying it to flirt with Meinuk... she seems like my kinda person!!!


 

[Meinuk]

oh you know I'm just saying it to flirt with Meinuk... she seems like my kinda person!!!

Richard, I actually try to keep my on-line flirting to a minimum, as I always seem to get into trouble.....  But for you I'll make an exception. 

[sickofbeingsick]

I know exactly how you feel--I've been that way since I started dialysis. It's who I am. I am first and foremost a dialysis patient. My whole life revolves around it. And to top it off, every Monday morning when I wake up, as soon as I realize what day it is, I CRY. I think "Once again, this is how I have to start my week off--with a horrible medical procedure to stay alive." Mark, I used to be a strong person and I wish I had the wonderful attitudes of the people here but I don't...I've been at this a while (10 years) and I'm exhausted. I'm letting this thing beat me, I can see it. Don't let that happen to you. Try to live as "normal" a life as you possibly can and try not to wallow in your situation too much. Good luck to you.

[talon999]

Hi Sickofbeingsick,

I understand what you are saying and that is my concern. I am more than a dialysis patient! It definitely affects your life. There is no way to put a positive on it but, hang in there and get out and get some sunshine. Life is not over it has changed for sure

Mark

[cherpep]

sickofbeingsick -

10 years - that is a long time, don't let it beat you now.  Fight that dark cloud!!!!   There are many things you have to do to stay alive, dialysis is just one of them.  You've been fighting that depression for so long, why let it take you over now.  You can do it!  Get outside, contact a friend, water the flowers, make a goal.  Don't let it be your life, just let it be part of your life.

[RichardMEL]

SickOfBeingSick (SOBS? oh dear.. that is rather unfortunate....) anyway... I have actually wondered myself about how would I feel if I have to wait 5, 7, 8, 10 or more years.... Specially this last couple of weeks where I heard from a friend that a friend of theirs got a transplant after "onlY' 11 years... and then another guy today saying he has a friend who has been waiting for 8 years... I hear those kinds of things and it gets me down to be frank.

I mean I realise for an "average" of 4 years (that's the latest figure I can get out of the transplant co-ordinator here) there's going to be those waiting much longer, as well as those shorter (she claimed the shortest patient she had was 8 months, and the longest was around 6 years). I think about how I am just at the 2.5 year mark on the list (and 2 years actually on dialysis) and I wonder how I will be in another 2 years, then 2 years later.. etc. I know for sure I will be thinking in 2 years that "hey, it's time... it's been the 4 years... where is it?" and I have a feeling that could or will get taxing rather fast specially as time goes on and (if) nothing happens then the weariness and depression could kick in.

I am not sure how I will deal with that (if I have to come to that, of course).

I'm not going to say it's easy for you, or that it will be easy for me should I be in a similar situation... because I understand it's not for you and given my own recent thoughts at times I could see things getting much harder for me just keeping up the day to day routine, hope, positive attitude.

All I can say that I do the best I can NOW with the hope of a brighter future. I was just talking to some fellow patients today about how rather than drinking extra and not following the diet I try to do that to keep me in the best shape to accept a transplant when it comes and hopefully have it last longer should it work. Sort of "no pain no gain" kind of thing.

I really hope things improve for you and you find the strength and willpower to keep going. I am not sure what else to say except that I can apprieciate just a little bit about how you must feel and my thoughts are with you.

[Rerun]

Talon999, there are Dialysis Cruises.  They cost an arm and a leg (or a couple of kidneys HA) but they are out there.  At first dialysis does consume you.  There is a post here on "You know dialysis has taken over your life when".....  It is hilarious.  I'll try and find it for you.

Here it is:  http://ihatedialysis.com/forum/index.php?topic=45.0     

[talon999]

Rerun,

Yeah, I have heard about Dialysis cruises. I am not sure how I feel about that. I would not be anxious to bring my 15 yr old daughter on a cruise with a bunch of old fogies. I know there are all ages with kidney problems but.... This board is nice because I know when I say something on here there are a bunch of people who can understand what I am saying. In Real Life, not so many people understand. I believe that reading all the posts on this site helps me to come to terms with this issue.

Take Care

Mark

[Rerun]

I think it is a "regular" cruise but they bring on a doctor and nurse and about 3 dialysis chairs.  I think one of our members has been on one.  There might even be a post on it.  Did you go up and read the link I posted.  It is so funny....

[stauffenberg]

I didn't do much traveling while on dialysis, but whenever I did, I wished I hadn't, given the extreme logistical inconvenience it involved compared to journeys I had made when healthy.  A fellow dialysis patient and his wife were quite excited about a planned vacation in Greece, but when they returned they just complained about how much trouble it had been dealing with all the usual medical burdens in a foreign system, plus losing every other day to treatment.

By the way, Talon, I appreciate your erudite title for this thread, quoting the lines from the Bagavad Gita which Professor Oppenheimer recited when he saw the first atomic bomb blast.  That is a good analogy for what it feels like for many patients when the reality of life on dialysis finally hits them.