New to IHD-Intorduction

[tbarrett2533]

Hello Everyone

My name is Tracy and I am 31 years old and was diagnosed with ESRD in September (when I was 30) and have been on Hemo ever since.

I am still trying to cope with this.... I struggle almost daily with how this disease has hindered my life!! I do hope that I soon can get to the stage where I have accepted this fate!

I have never been married, and do not have any children and now that I have ESRD feel that these things will more than likely never happen!! Prior to this disease, I worked 3 sometimes 4 jobs (working anywhere between 80-120 hours a week) ever since I was 14 years old. I have never been on vacation, and never even left NYS!! 

And now my lists of reasons why I truly hate dialysis:

I hate the time dialysis takes
I hate how my fistula hurts at every treatment and I really hate when I get infiltrated (which btw has been caused by some dumb nurse or tech trying to hurry)
I went and did the whole renal transplant eval.... and lets just say that I am on the fence with proceeding or not!!! (that's a looonnnngnng story that would take forever to explain)
I hate how all I do is work, dialysis, work, dialysis..... Dialysis takes up about 15 hours a week, my center's last appt. is 4pm so i have to stop working on Tuesday's, Thursdays and Saturdays early and as a result I am stuck working 7 days a week to make up the time!!
I hate the night time leg cramps
I hate the "dialysis washout" feeling after every treatment
I hate the diet
I hate not being able to go out and socially drink
I hate that I had to quit smoking (that was a healthy thing)
I hate the fluid restriction
I hate how when I tell ppl about this they all say, "Cant you just get a kidney" as if it is as easy as going to the grocery store and buying a loaf of bread.
I hate how ppl who have no clue what this feels like says to me, "stay positive."
I hate knowing that I will eventually stop urinating
I hate knowing that i will never have children
I hate knowing that i will stop having my period
I hate how sad this disease has made me
I hate how mad this disease has made me
I hate how some days I am more mad than sad and just want to cry
I hate how I have no one to talk to about how this makes me feel, and I really hate how no one listens to me when all I really wanna do is just be heard!!
I hate how I have no support family
I hate that there is no cure for kidney failure only treatment options
I hate that no matter what option I choose my whole life is interupted by it!!
I hate that i am still tired and wore out, yet no one seems to listen to me when I tell them this
I hate the thought of having to live like this for the rest of my life
I hate my catheter scar
I hate my dry skin
I hate my dry hair
I hate pulling the paper tape off my arm and having it hurt worst than the needles feel going in!!
I hate not moving for 4 hours 3 times a week
I hate that my skin is getting darker and darker and ppl keep asking me if I am tanning!!
I hate that my doctor along with the dialysis units social worker pretty much refuse to take me out of work when really all I wanna do is have some time to live a little bit before I die from this disease!!
sometimes I hate knowing that all my life consists of is work and dialysis(i literally get up for work at 5:30am 7 days a week and do not get home until 8-9pm)  and there seems to be no light at the end of the tunnel!! 
I hate to say it, but I hate the thought that this is what my life will be like until I take my last breath!!

there is only one positive to dialysis and that is that it keeps me alive so that I can continue to go to work and dialysis, work, and dialysis until I take my last breath!!

[MooseMom]

I don't blame you one damn bit.  You have every right to be mad.  This is no way to live, it really isn't.  There is no disputing any of your reasons for hating dialysis...they are all valid and very real.  It is impossible to "stay positive" all the time...no one can do that.

There are few things more catastrophic than learning you have an incurable disease.  Many people live with this sort of thing; many diseases are not curable but they are manageable.  The trouble with ESRD is that the treatment is so very burdensome.

Would you mind very much explaining why you are "on the fence" about transplantation?  I know you said it is a long story, but I'd like to hear it if/when you have the time and energy.  Many of the things you hate about dialysis could disappear with a new kidney.  That said, transplantation brings its own set of burdens and obstacles, but many people decide they'd rather bear those burdens than live with dialysis. 

We do know exactly how you feel, and I mean EXACTLY. 

[RichardMEL]

Dear Tracy,

Welcome to IHD!

First of all. WE are listening to you. We can understand much of what you are going through. Many of our members have been in similar situations and understand where you are coming from. I hope that by joining our community you can find some of the support and understanding you're seeking. I feel we can help.

I absolutely understand your long list of reasons to hate dialysis (well, apart from the period one - although I think some women might enjoy it if they never had another period?!!  ).

Just one comment on your various items - I think you're focusing on "worst case" scenario/outcome here. There are documented cases of women on dialysis having children, and there is no guarantee that you will stop urinating fully for example. In 4.5 years on dialysis I never fully stopped peeing. (and one benefit of slowing down a lot is you can sit through a 3 hour movie without having to get up to go pee - now I am not sure I can do that!!  ).

It sounds like you are in a difficult personal situation with the demands of your work (are you working so hard to make ends meet? When you commented that the doc/social worker won't "release you" do you mean approve you for sickness benefit/social security support of some kind? forgive me I am not au fait with the system over there).

I actually found work a positive thing for me while on dialysis, because it was as much social for me as well as getting myself away from just the medical side of things - I could focus on my work, seeing my workmates, and not sit around at home brooding about dialysis and kidney failure. Though if you're working 7 days you do have no time for a social life. Have you discussed these issues with your bosses? What about moving to some kind of part time work? or even 70% of what you are doing - just so you CAN have a break and maybe a bit of a life.

re not being able to drink socially - you can still do that within the fluid restrictions - just plan ahead, and maybe nurse a glass of wine, or drink some spirits (less volume, more bang!) when out.

Have you asked the social worker to refer you to someone to talk to regarding your feelings? Forgive me but you're sounding depressed (which is normal, please don't think I'm trying to say something negative here) and maybe you need some help finding some strategies to cope with that.

Anyway I will shush now with all this. Despite being "Mr Positive" around here (and no, I'm NOT going to sit here and say "Be Positive!" to you right now) I do recognise a lot of what you're saying and understand it (just as MM does, and many others of our members. I do send you tight hugs - I think you need them! 

I do honestly think that you've found a good place, and I do very much hope you stick around, and contribute, even if it's to vent, ask questions, whatever... that's what we're here for.

Again, welcome to IHD!

 

RichardMEL, Moderator
 

[DomJDavis1985]

wow i agree with almost every one of your "i hate" statements...and yes i have noticed that too...that my period seems almost non existent? is that a common side effect? last month my period was extremely light and this month it hasn't came at all and it should have been here a week ago (sorry guys for TMI)

[RichardMEL]

lol it's all good. I don't think in this area (renal) there's such a thing as TMI really.

Till it was mentioned here I didn't actually know it was a common(?) side effect for periods to go light/stop - of course not something *I* personally have had to worry about but still. So learning something new all the time

[DomJDavis1985]

yea...i supposed thats another question i can ask my doctor tommorow

[galvo]

G'day, Tracy, and . What a wonderful intro. I can empathise with all your points (apart from the particularly female ones).  The only way I keep going is by visiting this site everyday. A nurse asked me the other day 'wasn't I glad that I decided to go on dialysis', I almost floored her. Instead, I politely (heh) pointed out that it's simply a devise to keep me alive a little longer, and that it's a horible routine and that I am constantly reviewing why I am prepared to extend my miserable life.

But I'm an old bloke and you're a young lady. When you're ready, tell us your thoughts about transplants. Are you aware that constant research is being undertaken by very clever people into this killer disease. Can you grasp onto this thought as a positive reason to battle on?

I know where you're coming from. Hang around here and post often. You'll find you've joined a good mob.

[Chris]

Hello Tracy, I know what you mean on most of those things except for the female aspect of a couple of those and the dry skin. But be positive 
 
As Stuart Smallie (SNL Skit) said, I'm Smart Enough, I'm Good Enough, and Doggonit, People Like Me!
 
If you want, share your experience and frustrations with your transplant experiences.

[Rerun]

   LMAO !!!   I'm sending the people who say "why do you hate dialysis" to you!!!  I think we have a list on here somewhere but you hit them ALL!   

I think expressing your feelings is healthy.  Welcome to IHD.  I"m SO very glad you found us.

Rerun, Moderator        

[Des]

Hello Everyone

My name is Tracy and I am 31 years old and was diagnosed with ESRD in September (when I was 30) and have been on Hemo ever since.

I am still trying to cope with this.... I struggle almost daily with how this disease has hindered my life!! I do hope that I soon can get to the stage where I have accepted this fate!

I have never been married, and do not have any children and now that I have ESRD feel that these things will more than likely never happen!! Prior to this disease, I worked 3 sometimes 4 jobs (working anywhere between 80-120 hours a week) ever since I was 14 years old. I have never been on vacation, and never even left NYS!! 

And now my lists of reasons why I truly hate dialysis:

I hate the time dialysis takes
I hate how my fistula hurts at every treatment and I really hate when I get infiltrated (which btw has been caused by some dumb nurse or tech trying to hurry)
I went and did the whole renal transplant eval.... and lets just say that I am on the fence with proceeding or not!!! (that's a looonnnngnng story that would take forever to explain)
I hate how all I do is work, dialysis, work, dialysis..... Dialysis takes up about 15 hours a week, my center's last appt. is 4pm so i have to stop working on Tuesday's, Thursdays and Saturdays early and as a result I am stuck working 7 days a week to make up the time!!
I hate the night time leg cramps
I hate the "dialysis washout" feeling after every treatment
I hate the diet
I hate not being able to go out and socially drink
I hate that I had to quit smoking (that was a healthy thing)
I hate the fluid restriction
I hate how when I tell ppl about this they all say, "Cant you just get a kidney" as if it is as easy as going to the grocery store and buying a loaf of bread.
I hate how ppl who have no clue what this feels like says to me, "stay positive."
I hate knowing that I will eventually stop urinating
I hate knowing that i will never have children
I hate knowing that i will stop having my period
I hate how sad this disease has made me
I hate how mad this disease has made me
I hate how some days I am more mad than sad and just want to cry
I hate how I have no one to talk to about how this makes me feel, and I really hate how no one listens to me when all I really wanna do is just be heard!!
I hate how I have no support family
I hate that there is no cure for kidney failure only treatment options
I hate that no matter what option I choose my whole life is interupted by it!!
I hate that i am still tired and wore out, yet no one seems to listen to me when I tell them this
I hate the thought of having to live like this for the rest of my life
I hate my catheter scar
I hate my dry skin
I hate my dry hair
I hate pulling the paper tape off my arm and having it hurt worst than the needles feel going in!!
I hate not moving for 4 hours 3 times a week
I hate that my skin is getting darker and darker and ppl keep asking me if I am tanning!!
I hate that my doctor along with the dialysis units social worker pretty much refuse to take me out of work when really all I wanna do is have some time to live a little bit before I die from this disease!!
sometimes I hate knowing that all my life consists of is work and dialysis(i literally get up for work at 5:30am 7 days a week and do not get home until 8-9pm)  and there seems to be no light at the end of the tunnel!! 
I hate to say it, but I hate the thought that this is what my life will be like until I take my last breath!!

there is only one positive to dialysis and that is that it keeps me alive so that I can continue to go to work and dialysis, work, and dialysis until I take my last breath!!

ME TOOOOOOOOO!!!!

ps welcome

[rsudock]

here here totally agree with everything you said!!! The period statements I found to be true as well. i think having a baby on dialysis is an exception not the rule...

[tbarrett2533]

To all of you who posted replies!!

Thank you all so much!!
I feel like this will be my new home!!
Just to vent a lil will make me feel better

In time I will def share my thoughts on kidney transplant and why I am on the fence regarding it!!

for the first time since this has happend to me, I actually feel validated and heard!!!
thank you all from the bottom of my heart!!

[Poppylicious]

  Tracy.  You have come to the perfect place!

 

[monrein]

  to IHD Tracy.  I started D when I was 26 (many years ago now) and have felt many of the things that you list at different times.  I look forward to getting to know you through this site.

[looneytunes]

Hi Tracy and welcome to the place where we all agree....WE HATE DIALYSIS!