ready to give up...

[sullidog]

Ok, so I'm about ready to give up on dialysis unless something gets done, my graft is still giving me issues, sometimes I can't run, or I have to be stuck a million times and with a lot of digging, I can run. I just don't know what to do anymore. I get a duplex on January 11, but it's not til the 17 that I see the vascular surgeon again which is further away then I'd like it to be, they couldn't get me in any sooner and of course access issues need to be worked on on a non dialysis day. I just don't know what to do anymore, the staff has to dig, dig, dig, until they can't dig no more with the needle and it hurts like hell, they have to dig so deep that even the emla cream can't stop the pain. My bruit sounds like a tea kettle but no one will believe me, they can't hear it, but I can. The thrill is weekening, they can't tell it but I can. I have requested that I have a catheter until we find out what's going on with my access, but the doctor says since I have a thrill in my fistula they can't give me one, this is a mess! It seems that no one is listening to me, when I say stop when they dig they won't stop they just say sorry and go on digging some more, it's like come on! I really can't take anymore! I just may start sleeping and putting a heavy load on my access just to clot it off so it can get worked on an emergency, I mean I know that's wrong but something really needs to be done here! I've also thought about telling them I refuse anymore treatments until I get a catheter or this access gets fixed. I've just had enough, I have had it and I can't take no more! I'm thinking about writing medicare about all the issues I've been having and how nothing is being urgently done about them and see what they do.
Sorry for the rant but I just have to get that off my chest, I wanna continue dialysis, but if if I have to go through hell just to run it's not worth it to me.
Troy

[Des]

Troy,

I have no great words of wisdom as I am myself very sad today.

But I will say this : you are an amasing person and I truly hope you can get all the issues sorted out soon. You deserve better than all this $#%&.

 

[MooseMom]

Dialysis is hard enough without having people ignore you, too.  I can't imagine the frustration you must feel.  I don't know what they expect you to do until the 17th...it seems senseless to have you wait that long for something so vitally important.  Please keep us posted on what happens next.  I'm really interested to hear how this gets sorted out.  I'm so sorry this is happening...I don't blame you for wanting to just give up.

[onestronglittlelady]

Your situation makes me made at the medical system, and sad for you, that you have to go through all this. I hope you are able to find a solution and quickly. Thank you for sharing, other people may have the same problem in the future. Please let us know how this turns out. It is with all this knowledge shared here we are better able to face our own challenges with dialysis, or help those we love.

[Jean]

I think you are right, go into the hospital in an emergency situation and see what happens. Got to get this taken care of and stop having to go thru so much pain. D is bad enough without being tortured too!!!

[okarol]

Oh Jeeeez!
Why can't they give you a chest catheter while you get your fistula situation worked out??? I would raise hell about that. There is no excuse for putting your through this abuse.
 

[kristina]

I am so sorry for your predicament, Troy.

I do hope you soon find medical help to sort this out.

Best wishes from Kristina. 

[Desert Dancer]

Troy, that really sucks and I am so sorry you have to go through that; I honestly don't understand the medical profession's propensity for acting like the patient is an irrelevant non-entity. Personally, I'd tell them to stuff it and refuse to run until they give you a catheter.

[cariad]

This sounds just miserable, Troy. I hope they fix it soon, but I also think you should contact Medicare and the ESRD network.

Your situation sounds crazy and they should be threatened with loss of payment or whatever else can be done to them if they don't start taking you more seriously, and straight away.

[carol1987]

Oh Jeeeez!
Why can't they give you a chest catheter while you get your fistula situation worked out??? I would raise hell about that. There is no excuse for putting your through this abuse.
 

You are right Karol!! 
When I was having surgery to raise my fistula (which of course had a thrill) they discussed placing a catheter.. but since I just had started dialysis we decided to see how i did with no d. while I healed.  But getting a catheter was certainly an option!!!
Get another opinion and or raise HELL Troy as Karol said!!!!

[KICKSTART]

First if all DONT you dare give up dialysis or i will come and slap you round the face with a wet fish ! . Secondly ..those who shout loudest get heard !!! If its so bad then something is obviously wrong and it needs sorting. I shouldnt say this but you can get away with missing one treatment (i think several of us have) Maybe this is how you should make your stand ? Tell the highest person in charge you can get hold of, just how things are going then refuse to go in for that days treatment ? Over here they would be panicking if we did that. Another option is possibly ..what about numbing the area with a local injection ? then you wouldnt feel anything ..at least till you get some action . Apart from screaming in someones face im not sure what else you can do. As long as you keep taking it , they are going to keep doing it, hell its not them thats feeling the pain . Good luck !

[FRANKY2222]

m an esrd sufferer 4 ten months now on hemo in-center and I can't take it anymore!!!!!!!!
I  hate the UNIT and the A##HOLES who run it breaking every rule, treating us like a side of BEEF.
I missed treatment yesterday 4thefirst time in ten months.......AND M NEVER GOING BACK!!!!!
they r calling me twice a day ,but I will not talk to them anymore. I went out &found my own social wkr who works with only patients who are dying from a fatal disease.
I am ready for the end in a natural way.
It's my CHOICE!!

[kristina]

Franky2222, I have just read your letter.
You sound as if you really have reached an all-time-low.

Perhaps there is a way out of this dilemma?
 
Are you sure you have thought it over or is it
your reaction to a down-grinding bad service
you have experienced at this hemo-in-dialysis-centre?

Have you thought of asking the social worker to assist
and direct you to another, better centre?
Have you talked to and asked your nephrologist?

The answer may be more simple than you imagine right now!

I cannot imagine that every centre is giving such a bad service
as the one you have experienced?

Please give it another try and please think it over once more!!!

Best wishes from Kristina. 

[FRANKY2222]

Thanks 4 caring Kristina,I have spoken to the social worker several times about my radical choice &she is trying to change my mind...but no one will b able to convince me to live a life wherein my condition gets worse &worse(
(wheelchairs)I don't want a machine keeping me alive(barely).
I will die naturally.

[mm2010]

Hi Franky2222,
I am not a dialysis patient yet, and you describe what I would call the pre-dialysis patients worst nightmare.  In the many friends I have met here at IHD, there is one common theme that I admire and respect, and that is, to accept everyone's choice of treatment, and support them in their decisions.  For those of us who are pre-dialysis, your story highlights how some centers are not delivering the quality of service we would expect.  Its very sad when the treatments are worse than the condition.  You deserve quality treatments, and I would encourage you to seek recommendations from your social worker for ways that you can get the quality of care you deserve.  Although you may choose to leave their service, you might find there are centers available that will make dialysis manageable.  Please keep us informed on your situation, and thank you for sharing with us..
Mark

[phyl1215]

I am very sorry to read the posts here.  I am on PD and go to a wonderful center and my nurse is just great.  Try to find another center it could be your answer.  I am sure everyone on dialysis has thought about dying naturally especially those on hemo.  I haven't been there so I just don't even try to think about hemo.  In my opinion, I have to look at quality of life and when I don't have that I would also choose to die naturally.  But before that decision I would exhaust all my options, such as Neph., centers, social workers, etc.  Also, I am older (66) and I am sure that factors into my own decisions.  Please keep posting, maybe someone here can hellp you, sometimes just talking helps too.

[kristina]

Thanks 4 caring Kristina,I have spoken to the social worker several times about my radical choice &she is trying to change my mind...but no one will b able to convince me to live a life wherein my condition gets worse &worse(
(wheelchairs)I don't want a machine keeping me alive(barely).
I will die naturally.

Franky,222, thanks for getting back and answering me
and telling me that your social worker tries to help you change your mind.

I just wanted you to think whether you have exhausted every possibility?

Sometimes when one looks at things from a different angle,
a whole new picture comes into focus.

Maybe it is a picture which is not as perfect as you would like,
but you can see in it new possibilities.

Please think about this and if you can get different view-points,
please look at your situation again.

I wish you good luck in your trying.

Best wishes from Kristina.

[FRANKY2222]

Thank you,MM2010, ur posting made the most of relating to my situation.
My history in the ten months I ve been on Hemo is that I changed centers THREE times....and one was as bad as the last.the nurses& staff prefer treating patients who are half dead. M awake,alert &i see when they break the rules.they mop the fluid off the floor with OUR blankets,there is mold&mildew everywhere,they talk on their cellphones,laugh&joke around with each other while cannulating....m sick of it all.
Today is the second treatment I will b missing....AND I FEEL GREAT''!!!!!!!
M free to die a natural death, not a slow undignified death that comes with the dialysis centers. That I have had the great DISpleasure to have been admitted.
Thank you to those who understand &support my decision.

[kristina]

Franky2222, can you please name the Dialysis centres you have been to

so that other Dialysis patients can be on the alert?

All the best wishes and thank you from Kristina.

[okarol]

I hope you will call me. Not to change your mind, but to give you support and understanding. We care what happens to you. What could have been done differently to improve your situation? I respect your choice FRANKY, but as I said in my PM to you, there are many people here who will reach out to you. You have my phone number.   

[Genlando]

Franky2222, this is just my 2 cents, so if I'm totally off-base, just ignore me.

I'm like you: I started dialyisis in March of 2010.  I still haven't fully processed the shock of being told that I have ESRD. I still have a catheter in my chest after 10 months, because they still haven't gotten a fistula working for me.  I'd say that the worst thing of all about having kidney disease has been the feeling that I've lost control over my life.  I now find that I'm depending on others to take care of me.  And unfortunately, many of the people who are responsible for my life are complacent and lazy.

Like you, I'm appalled at how poorly the employees at my dialysis center treat me.  Every day, I see these employees providing worse service to their patients than what a customer gets at McDonalds.  And management lets them get away with this because they don't care either.

Don't let them get away with this!  If you discontinue your dialysis treatments, those bastards won't change a thing: you'll be gone, and they couldn't care less.  However, if you stay around and raise hell about your mistreatment, you will force management to make changes. And if the local management doesn't listen, then take this issue further up the ladder.  Even if your center is privately operated for profit, they will do everything that they can to avoid bad press.


For example: last summer one of the clinics in my area had problems with their air conditioning system.  For several weeks, the patients complained about the heat (after all, we're talking about South Carolina).  Management did nothing until several patients contacted a local television station.  The station ran a news segment on the deplorable conditions at a for-profit dialysis center. The segment showed how unsanitary the center had become, since they had to open doors and windows while patients were being treated.  Flies were swarming around patients, and they were being bitten by mosquitoes.  The center fixed the air conditioner system within a couple of hours after the segment ran.

I'm not saying that this will solve all of your problems. ESRD isn't a walk in the park by any means.  However, it sounds like your real problem is that your caregivers aren't listening to you.  Well, if they don't want to listen, MAKE them.  Eventually, they'll see that it's easier to provide better service than to deal with your complaints.  In other words, they'll become better caregivers for you and everybody else.  That's a hell of a lot better than quietly slipping away forever, don't you think?
Having your complaints heard is an art.  If you want me to help you get started, please PM me. 

[FRANKY2222]

Genlando
Thank you 4taking the time 2write2me.
I have complained over & over,problem is TOO FEW do complain...they r too tired!   
I've lived a good life until I met ESRD and the HELL of treatment centers .
Take care ,my friend. C u in the next adventure,!

[meadowlandsnj]

Genlando
Thank you 4taking the time 2write2me.
I have complained over & over,problem is TOO FEW do complain...they r too tired!   
I've lived a good life until I met ESRD and the HELL of treatment centers .
Take care ,my friend. C u in the next adventure,!

I wrote you  a private message. 

Hi everyone!  I missed you all.  I'll make a post to explain.
donna

[sullidog]

Well now they are putting my needles very very close together just to get a good bloodflow rate, but isn't needles putting very close together bad for your treatment?

[kristina]

Franky2222 please let us know the name

of these horrible centres you have been to,

to make other patients aware.

I do hope you can find some positive help.

Thanks from Kristina.