a little vent/rant/just writing....

[tiredandthirsty]

so it has been almost a month since i have been on dialysis.  it has been going well so far with no major issues thanks to God.  except for one day when my BP dropped to 100 and i felt so sleepy i thought i was going to pass out.  i had to stop working and try to go to sleep.  they cut off my UF and slowly i started feeling better. 

i am now on 15s and boy do they pack a major pinch.  i am very skinny so the lower needle (arterial i believe, they stick it so close to the wrist where there is not much muscle or mass) is almost visible through the skin it sticks out so much.  you can see it's shape through the skin.  and that's the one that hurts the most.  on friday, i freaking couldn't find a single comfortable position where it didn't hurt.  so three hours and fifteen minutes of pain.  i was so ready for the needles to come out.  i am so hating dialysis now, it's not even funny.

another thing that is making me feel down is how much my life is now being controlled by dialysis.  i have to plan everything around it.  full time work and dialysis, those are the only two things i am able to manage at this point.  i feel like my friends have abandoned me.  i hear from them less and less now.  it's just me..alone.  i see pictures on facebook of people living their life, having fun, hanging out, doing fun things.  and i am here.  just all alone.  forgotten. 

i am just rambling here.  but i am feeling down right now and just wanted to write. 

[jeannea]

I'm sorry things feel so tough. I understand about watching your friends live happy lives without you. I had a lot of trouble with jealousy. You're not alone. All of us here understand. Hopefully over time you will adjust a little and be able to do a few fun things. I'll be honest though - it's tough. I had a wonderful therapist who helped me through things. Hang in there! 

[Cordelia]

               

I know completely how you feel           

[Traveller1947]

Hi, t&t.  Just read your post and it broke my heart.  All of us here have grieved for everything we had to give up when our kidneys failed.  When you're young and in the middle of your life, this is even harder, I think.  I've done in-center dialysis for seven years now and have adjusted to it as well as anyone can, but in the beginning (I'd say, the first six months or so) I fought it and raged against it and took my grief out on anyone within earshot ( and I'm an old lady!).  The loare just so great!   Eventually, things settled down for me.  My graft stopped acting up, the staff had figured out how to stick me and I looked around and saw that since none this had killed me,  I'd better remake my life with dialysis as part of it.  It WAS letting me live, after all.  I realize you're not at this point in your thinking yet--it may take less time for you to adjust than it did me or it may take more.  I wanted you to know that you're NOT alone.  We here on IHD are your family, in the truest sense.  We care and we listen and we understand.

A couple of practical things: when one or both of your needles hurt, tell the person who put you on.  Sometimes the smallest adjustment can ease things.  Secondly, when you feel your pressure drop, call out to the nurse or tech or any staff member passing by to let them know, as fast as possible, so that you get help right away.  You may feel as though you need to sleep at that moment, but you're on your way to passing out.

Finally, another mode of dialysis may suit you better than in-center hemo.  Other people here can tell you more about those better than I.  All the best to you, t&t, as always.

[dialysisadvocate]

Hello TiredandThirsty -- Nice to meet you -- I understand what you are going through, as my father experienced some of the same -- although he was probably much older than you

Because staff were not always in his sight and often behind the nursing desk where they could not see him, I gave him a bell to use when he felt like he needed assistance, e.g. not feeling well, etc.

He also had problems with needles and often when they hurt the staff, if they know what they are doing, can adjust them so that they are not so painful -- the  needle might be pressing in such a way that it is causing pain.. I am curious what the staff said about this, when you told them. It is really important to tell the staff and your physician, also.

The adjustment to dialysis is a difficult one for many people. I think sometimes those who are your friends might be distancing themselves because they might not know what to say or how to act. Some people see those on dialysis as 'being different' -- similar to how some view someone with a disability. I bet they come around and realize you are still YOU --- it is often hard also for others to accept -- I can say that for some it does take some adjustment and I think as time goes on you will see how you fall back into your life -- Do you have the type of relationship with your friends that you could discuss this with them.. sometimes being open helps, but depends - only you know your friends and how they would, or would not, react
And, my father, who started dialysis at just turning 85 continued to go out and do most of his activities he did prior to dialysis, except for golf... Hang in there,, this is a great forum for venting and others have experienced the same.
opinions of Roberta Mikles www.qualitiysafepatientcare.com

[ChrisEtc]

another thing that is making me feel down is how much my life is now being controlled by dialysis.  i have to plan everything around it.  full time work and dialysis, those are the only two things i am able to manage at this point.  i feel like my friends have abandoned me.  i hear from them less and less now.  it's just me..alone.  i see pictures on facebook of people living their life, having fun, hanging out, doing fun things.  and i am here.  just all alone.  forgotten. 

i am just rambling here.  but i am feeling down right now and just wanted to write.

I think a lot of us have felt the same things being on dialysis.  I've been there about a year for me and it's still difficult.  Inevitably I think I've learned that it's all about me, how I handle it, and what I do about it.  If you're waiting for someone, ie staff, friends, family, to "care" then you might wait a long time.  You kind of have to come to grips with it and take it on full steam ahead.  Be thankful that you're still alive, live your life to the fullest, and all those cliche type things.  I know I've experienced a lot of different things while on dialysis.  Passing out, dizzyness, nausea, having sweats, panic attacks, really all kinds of things.  Be prepared for it all.  Really the hardest thing for me is that the clinic is basically a mill, one person out the next person in and so on.  It's very impersonal in a lot of ways.  Especially when a patient dies and then another patient is just moved into their time slot.  Every time that happens I get a little depressed, just bothers me a lot.  And nobody says anything when someone passes away, it's just in and out and tomorrow is a new day.  It's hard to get used to.       

[tiredandthirsty]

Hey all,

Thanks for all your responses.  i know it is a part of life now and i have to sort of "suck it up and adjust" or i will end up feeling miserable all the time.  i am trying to adjust quite a bit.  but for some reason i don't know, today i felt really down.  i saw my arm and it looks like a crack addicts arm.  I have low platelets so it takes a little longer for me to heal.  then those pictures popped up on my facebook wall with my friends at this party and then it went downhill from there. 

i hope these down days will be spaced out farther and farther as time progresses.  but thanks a lot for all of your positive comments.  i feel like i can come here and pour it out. i am not the type of person that speaks about my problems too frequently to anyone.  i keep it all inside because i feel why would anyone else want to be bothered with my problems?  they probably have a bunch of their own.  this is my only way out. 

[dialysisadvocate]

TiredandThirsty -- it is okay to vent as it gets those feelings out -- although I was not a dialysis patient, my father hated and dreaded going to dialysis - for over six years -- hated every moment of it.... I do understand.. In fact, he barely told anyone he was on dialysis,,, Hang in there and just vent, vent and VENT
Roberta