My Mind is Playing Tricks on Me

[Beth35]

I finally had to start dialysis on Friday, March 11th.  This is my second stint on dialysis.  I first started dialysis at age twenty and received a kidney transplant five years later when I was 25.  Now I'm 37 and starting the rollar coaster again.

My mind is starting to go to crazy places just as it had the first time I was on dialysis.  I start thinking that I should really be dead right now.  Dialysis is the only thing keeping me alive.

I start to think of all of the things that could happen to me if I couldn't make it to dialysis.  What if I went hiking and got lost in the woods?  I would die.  What if we got a really big snowstorm and I couldn't make it to dialysis?  What if I was on a plane and it crashed and I was out at sea and no one could find me?  Or what if someone kidnapped me?

Now, I know these are all silly ideas but they still run through my mind and it freaks me out.

It's like I'm a bit paranoid.  I really hate feeling like this.  I feel so trapped and so contained.  Has anyone else had these thoughts?

[Sugarlump]

Hi Beth
I really feel for you and understand how difficult it is to start dialysis again.
I am currently on my second transplant and remember all too vividly how difficult it was to go back to dialysis after the first transplant failed. My transplant started to fail after 3 months, slowly yet decisively but they kept me hanging about for six months before I restarted dialysis. I was getting sicker, I knew I needed dialysis but it was also the last place I wanted to end up. I couldn't face up to the fact the kidney failed and all I could think of was what ifs, what if I don't, what if I die first, I really believed I was going to die I felt so awful, what if a million scenario's. Panic and despair that the kidney no longer works.
There is no easy way to readjust to dialysis again. I think having ""silly ideas" are the brain's way of coping with the changes and trying to make sense of it all. I also think as the esrf takes hold before you start dialysis it affects the mental processes and it's not so easy to think clearly or make decisions. It will get better. Give yourself time to adjust. Treat yourself gently
I cried a lot in the first few weeks and it helped to let go of the failed kidney. Talk to people as well. Take care x

[RightSide]

I had exactly those same thoughts and fears.  (I posted my concern about snowstorms back when I first started dialysis--here in New England where I live, snowstorms that shut down everything are a real problem.)

And so I discussed it openly with my neph.  I asked him flat out whether I could tolerate missing one session.  He said that based on my blood test numbers and general state of health, he thought I could--as long as I was careful with diet and fluid intake.

And that's what happened.  In 2009 I was about to go on an important trip and was unable to get a slot at any dialysis center at my destination.  I had no choice.  I went anyway.  I was very careful with diet and fluid intake--I found and patronized a diner that uses NO salt in cooking unless you specifically ask for it--and I had no problems.  I dialyzed as soon as I got back home.

So I would suggest discussing this openly with your nephrologist.  Most dialysis patients aren't going to keel over and die if they miss one session.  If your neph thinks that you're likely to keel over if you miss one session, tell him that you want your kidney disease to be under better control than that.

[jbeany]

Nope, not paranoid or crazy - I'll add my name to the list of people who had those kind of thoughts when they started.

If you need an antidote - check this post -
http://ihatedialysis.com/forum/index.php?topic=15216.0

As the post points out, it takes weeks for everything to shut down when you go off D.  Missing a session is uncomfortable, but rarely fatal.  I had to miss one after my weekend when my graft clotted.  I had a humdinger of a headache and really fat fingers, but I made it through.

[peleroja]

Nope, can't say as I've had thoughts like yours.  I will tell you this, when I got my first peritonitis from an infected hernia and they planned to operate, they did not dialyze me for 3 days, and I'm still here to tell you about it.  You actually have the strength to go hiking in the woods?!?!?!?

[Beth35]

Well it's good to know that others have had thoughts like this.  I have to just stop myself from going there.  The first time I was on dialysis I had a great fear of dying.  I got counseling and I truly got over my fear of death.  I believe in God and I believe that I will go to heaven when I do die.  I have also been through so much that sometimes dying seems like a walk in the park compared to the suffering and depression I have gone through but I still very much want to live and be here. 

My biggest issue now is that I'm afraid to die because I don't want to leave my kids without a mom.  It's not the dying itself that scares me.  I'm a single mom who adopted two kids from foster care on my own so there is no one else.  I truly didn't think I'd need another kidney until they were adults or at least teenagers.  I NEED to be here for them and it puts so much pressure on me.

As for the hiking in the woods, lol, that is the funniest thing about it...I don't hike in the woods but it's the thought of what if I DID and I got lost?!

Crazy, I know.

[okarol]

When Jenna was on dialysis I thought about what would happen if there was a big earthquake here. I kept enough gas in my car and a survival kit in the trunk, ready to drive to Arizona or Northern California in the event that we lost power and had major damage that would keep her from getting dialysis. It was always at the back of my mind.

[KICKSTART]

I think people are missing the point ! She is not asking about 'missing a session' ! She is talking about her dying sooner than expected because she has kidney failure . Yes i think it goes through everyones mind but ONLY because we KNOW about our illness. Plenty of people could be walking about oblivious to an illness that is going to kill them sooner than expected, but with us its a cruel twist of fate ! partly because we have to know about it to keep living longer , but then because we do know about it we worry about dying sooner !

[Brightsky69]

Beth - I have those thoughts all the time. What if there was some big natural disaster like Japan? What would happen to me?? Even now with my transplant I worry about something happening and me not having access to my meds.

Today I was thinking about the movie Fearless with Jeff Bridges. There is a line in there when he is talking to God and says "You wanna kill me but you can't !!"  I kinda felt the same way while on dialysis and since my transplant.   

[okarol]

Yes, thats what I meant, it was always lurking, in the back of my mind, she could die. It's a very powerless feeling and I pushed it back because the fear was too much to face. So I kept my car ready, it was the only thing I could control.

[monrein]

I have thought of dying and still think about it pretty regularly but not with fear or paranoia.  I think more about how to do so as gracefully, as easily and as preparedly as possible.  I've been doing this since I went on D at 26 and, while I'm definitely not in any hurry, when it comes, I'll be grateful for all I've had, enjoyed and done.  I feel quite calm about it actually and what grounds me is that this is something that I have in common with every single person who's ever existed or who will ever exist.   I'm hoping of course to get to the point where "I'm too old to die young" (lyrics from a beautiful song on an album by Linda Ronstadt with Ann Savoy)
 
Linda Ronstadt: Too Old to Die Young Lyrics
Songwriters: Welch, Kevin Stephen; Hadley, John R.; Dooley, Scott;
Send "Too Old to Die Young" Ringtone to your Cell
 


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