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jambo101
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« on: September 24, 2019, 05:02:22 AM »

 This whole dialysis routine has become a real downer,from the unrelenting schedule to the uncomfortable chair, after a very active life i now feel like a wild animal trapped in a cage with no way out. :(
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Jim
LorinnPKD
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« Reply #1 on: September 24, 2019, 05:31:15 AM »

I feel for you, Jim.  Depression is pretty common among dialysis patients.  Especially when we're caught in that weird clash between absolute boredom and crippling uncertainty.  I think it's good to talk to someone like a therapist or support group if that is available.  For me, spending at least ten minutes outside every day helps a lot.

Chair strategy is VERY important!  Comfort and distraction go a long way toward quelling boredom.  (My best and most pleasant treatment so far was when I was in the hospital recovering from surgery and the dialysis nurse brought the machine to my room, and I got to snooze in bed while the machine did its work!) 

COMFORT:
Our chairs are horrible.  So I bring an ENORMOUS bag of pillows and blankets with me to every treatment.  One big pillow for sitting.  One for my back.  One big fuzzy blanket for enduring the cold room.  Another small blanket for extra warmth or for propping up my access arm.  I'm positive I look ridiculous coming and going, but once I'm in my nest I'm pretty comfy.

DISTRACTION:
My clinic offers televisions on swing arms but the TVs are simply awful, so I avoid them altogether because their cumulative awfulness actually makes time go by more slowly somehow.  The picture is snowier than the rocky mountains in february.  And the sound for every channel buzzes, like you've plugged your headphones into a hornet's nest.  HOWEVER, the clinic does have fast, reliable wifi, so I plug in my ancient iPad and enjoy Netflix for 3.5 hours, which makes the time go by faster.

MORE DISTRACTION:
I also try to bring a bit of a snack, something that takes a long time to eat.  Like a small apple cut into super-thin wedges, eaten one at a time?  That can take up half an hour.  Same for a small bag of unsalted popcorn, eaten one by one.  Small baggie of cheerios.  Six peppermints unwrapped and eaten slowly.  That sort of thing.

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Michael Murphy
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« Reply #2 on: September 24, 2019, 08:51:59 AM »

If you look at the unending sessions of dialysis it would depress Richard Simmons.  I worry about dialysis one week at a time, every Friday I celebrate not having to go to dialysis again this week and the extra day I get.  Next week is next weeks problem.
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kristina
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« Reply #3 on: September 27, 2019, 01:59:47 AM »

This whole dialysis routine has become a real downer,from the unrelenting schedule to the uncomfortable chair, after a very active life i now feel like a wild animal trapped in a cage with no way out. :(

Hello jambo, I am very sorry, that "things" didn't work out in a better way for you and it is quite understandable that you feel depressed about this new situation.
But, please don't forget that there are still a few good points to consider: first of all, you are still alive and that gives you a chance to carry on trying with dreams to practically achieve and to continue with all the "things" you enjoy doing.
Then, furthermore, you have a chance to make everything more comfortable for yourself in a practical way i.e. find a way to make your chair more comfortable for yourself etc.
It depends how you look at it : of course, you can look at your new situation as being trapped in a cage with no way out, but you also can look at it in a different way and please talk with your doctors asking them of ways of how to regain a little more energy etc. by checking up your blood tests and find out if there is anything (vitamin etc.) missing or what else could be missing that drains you of energy etc.
Please talk to your GP-doctor and please talk also to your nephrologist to get both medical opinions. And please tell them as honestly as you told us here about your current feelings and lack of energy etc.
I know myself that life on dialysis can be hard, but it also can be made a little easier by approaching it practically with the help of blood-tests and talks to both  of your doctors.
Please let us know how "things" develop.
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
GA_DAWG
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« Reply #4 on: September 28, 2019, 08:14:36 AM »

The one thing I would add to what Kristina said, is to talk to the social worker, if that person is capable. If not, talk to a therapist or someone who can help you deal with the depression and anxiety. I think the one area too often either overlooked or taken for granted is the mental and emotional coming to terms with dialysis, and that it should be given more attention.
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jambo101
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« Reply #5 on: September 28, 2019, 11:19:52 PM »

Have talked to the hospitals mental health doctor and after asking me a bunch of questions that seemed focused on weather i had Altzhmers they came back the next day and said they could do nothing for me. :banghead;
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Jim
kristina
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« Reply #6 on: September 29, 2019, 03:10:17 AM »

Have talked to the hospitals mental health doctor and after asking me a bunch of questions that seemed focused on weather i had Altzhmers they came back the next day and said they could do nothing for me. :banghead;

Hello jambo,
I am very sorry, that this experience with the mental health doctor was so very unfortunate for you and I would not be surprised if a bit of anger has been added to your other problems as well because of this obvious incompetence of the mental health doctor, who obviously lacks imagination and has no idea what people on dialysis go through and therefore they just go by "the book".
That just leaves you to try your luck by explaining and asking your nephrologist (at least they are experienced and have seen a lot) and you also can explain your situation to your GP-doctor and, if possible, ask the social worker as well.
Mind you, I never had any positive experiences with social workers whenever I needed some practical help to make "things" easier. The social workers I have met so far seemed to me as if they were not trained to assist practically in a situation to make "things" easier. They seemed to me as if they were only trained to talk and talk and talk and for me that was just not good enough, whenever I needed some understanding of a situation to assist by practically approaching it and sort it out.
I keep my fingers crossed for you and I do hope you get some help soon and wish you all the best from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #7 on: September 29, 2019, 05:38:19 AM »

Honestly, I just do not understand why the mental health and emotional wellbeing of the millions of people dealing with chronic illness and resulting treatments is systematically ignored.  Just because the hospital mental health docs day they can do nothing for you doesn't mean that no one can help you.

We all are living under circumstances that will not change any time soon, if ever.  We need help in creating ways, having tools, that help us cope.  What may work for me may not work for you. Very few people could cope with such a change in life without a lot of struggle.  You have suffered a loss, and you are grieving. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #8 on: September 29, 2019, 12:29:04 PM »

Honestly, I just do not understand why the mental health and emotional wellbeing of the millions of people dealing with chronic illness and resulting treatments is systematically ignored.  Just because the hospital mental health docs day they can do nothing for you doesn't mean that no one can help you.

We all are living under circumstances that will not change any time soon, if ever.  We need help in creating ways, having tools, that help us cope.  What may work for me may not work for you. Very few people could cope with such a change in life without a lot of struggle.  You have suffered a loss, and you are grieving.

I think medics and authorities are well informed about the problem. But, unfortunately it seems there are hardly enough resources to address it in a constructive and positive way and unfortunately that leaves the afflicted in a no win situation, unless they are lucky enough to have some understanding partner and/or family, who can help and assist as much as is possible.
For example, a neighbour of mine had - some years ago - her kidney transplant and she lived alone and had no one to look after her, but she was too embarrassed (?) to mention it to anyone.
A few months after her transplant she was found dead in her kitchen. She had no one to look after her after the transplant and it shook me very much when I heard about it, because I did not even know and had thought she was alright and well being looked after.
It is my opinion that this problem is a result of our ultra-modern society, where family-togetherness is becoming to be very rare to come by and as a result of that, everyone seems to be supposed to fight their own corner and if they are not able to do so, catastrophes like the one happening to my neighbour, do happen.
Sad but true. :'(
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
GA_DAWG
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« Reply #9 on: October 01, 2019, 01:56:59 PM »

Part of the reason for what you speak of kristina, I believe, is the anonymity of the internet. There are some really bad actors on it, and it has gradually come to the fore in everyday life in public. Also we have churches and other leaders telling us we should not worry about other people, just get what you want because God wants you to be rich. It is a far cry from what I learned in church. I was talking to the spouse of a person who used to work for me. Last I knew he was making over $250,000 a year and this woman was vivdly describing for me how she thought she was middle class at best. She said they just could not afford  to worry about helping others. I think I offended her when I finally asked how she thought people making less than $20,000 a year could afford housing, food, and healthcare, not to mention things like car payments, electricity bills and the like. We have become a self obsessed culture, where the only time you hear any concern with mental health is after a mass shooting.
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iolaire
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« Reply #10 on: October 01, 2019, 02:13:12 PM »

I was talking to the spouse of a person who used to work for me. Last I knew he was making over $250,000 a year and this woman was vivdly describing for me how she thought she was middle class at best. She said they just could not afford  to worry about helping others. I think I offended her when I finally asked how she thought people making less than $20,000 a year could afford housing, food, and healthcare, not to mention things like car payments, electricity bills and the like. We have become a self obsessed culture, where the only time you hear any concern with mental health is after a mass shooting.

I think about this and mention it to my wife often.  In our social group everyone is basically sickly rich with well paid duel incomes putting most couples in that same income range. Yet I don't think most of our acquaintances think of themselves are very affluent in the context of the nation, or even our own metro area.  In our bubble there are lots of costly priorities that seem important but are luxuries. 

Its quite a privilege to have good insurance and to be able to afford copays.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
jambo101
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« Reply #11 on: October 03, 2019, 02:16:56 PM »




Its quite a privilege to have good insurance and to be able to afford copays.
Or you could live in a country like Canada where national healthcare covers all costs/
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Jim
iolaire
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« Reply #12 on: October 03, 2019, 06:30:24 PM »




Its quite a privilege to have good insurance and to be able to afford copays.
Or you could live in a country like Canada where national healthcare covers all costs/
We tried. We are in a slight setback period. I can only hope that period ends and compassion is back in favor soon.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
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« Reply #13 on: October 04, 2019, 08:47:43 AM »

Part of the reason for what you speak of kristina, I believe, is the anonymity of the internet. There are some really bad actors on it, and it has gradually come to the fore in everyday life in public. Also we have churches and other leaders telling us we should not worry about other people, just get what you want because God wants you to be rich. It is a far cry from what I learned in church. I was talking to the spouse of a person who used to work for me. Last I knew he was making over $250,000 a year and this woman was vivdly describing for me how she thought she was middle class at best. She said they just could not afford  to worry about helping others. I think I offended her when I finally asked how she thought people making less than $20,000 a year could afford housing, food, and healthcare, not to mention things like car payments, electricity bills and the like. We have become a self obsessed culture, where the only time you hear any concern with mental health is after a mass shooting.

Thank you for hitting the nail on the head. It is very true what you say and I am hoping that people start realizing that their material obsession does not quite go into their own right direction because it is only skin-deep at its very best. Arthur Schopenhauer (1788-1860) wrote about it in detail and since then he is known as being very pessimistic  :secret; ...
Thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kitkatz
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« Reply #14 on: October 26, 2019, 09:12:23 PM »

Depression is a part of dialysis.  I have felt the never ending routine of it all and have wanted to run way and hide.  Depression gets me about every two years or so it seems.  I come here and talk it out, I write my poetry and stories, and I recognize it for the brain chemical change that occurs because I am a dialysis patient.  So something fun.  Read a favorite book or buy a new one.  Write about it.  Go with the flow of life and let things go.

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Take it one day, one hour, one minute, one second at a time.

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jambo101
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« Reply #15 on: November 01, 2019, 07:47:57 PM »

Most of  the depression comes from the unrelenting lower back pain involved in sitting in an uncomfortable dialysis chair for 4 hours per session, first 2 hours arent so bad,third hour is a painful ordeal and 4th hour i'm literally in tears from the pain, its got so bad that i
m considering the possibility of giving up dialysis. Chair looks like this one with no remote control positioning =https://www.ebay.com/itm/Champion-54-Series-Green-Patient-Recliner-Medical-Dialysis-Chair-/323726425323
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Jim
Michael Murphy
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« Reply #16 on: November 01, 2019, 11:53:40 PM »

Order a gel foam cushion it helps a lot.  The problem I have with the traditional dialysis chair is the slow downward creep so I am constantly having to push my self up.   I started pushing my chair against the wall so it canít go down.
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sideways
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« Reply #17 on: November 02, 2019, 12:05:57 AM »

Ask your doc for painkillers. Insist if you have to.

I go thru bouts of really bad tailbone/lower back pain depending on the chair I'm in. Some of the chairs seem to fall apart faster than others. The seat cushioning wears out or something.

A patient at my clinic brings a sheet of that egg carton foam stuff to lay on his chair. I've seen people bring other types of cushions or pillows to sit on.
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jambo101
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« Reply #18 on: November 02, 2019, 01:00:36 AM »

 The creep is uncomfortable but theres nothing for your feet to push on to readjust yourself and with one arm immobile due to fistula nothing can be done, i've tried gel cushions and they do nothing,ive tried cortisone shots equally inefective ive tried oxycodon with disasterous resultse,on the few occasions ive tried electronically operated chairs with a remote control for  leg/back and lumbar support ive had no problems. perhaps its time for a new dialysis location.
« Last Edit: November 02, 2019, 01:03:44 AM by jambo101 » Logged

Jim
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« Reply #19 on: November 03, 2019, 05:47:13 AM »

Hello jambo101,  I go thru that too, sitting in those horrible chairs.  I have to take a cushion with me.  I find myself turning sorta on one hip and then the other trying to make it better.
Donít let that horrible chair get you, let that chair know you are boss  :Kit n Stik;

I also have a hard time watching that clock.  I have to plan ahead to help the time pass easier and keep myself distracted.  I hope you find your way, do not give up. 
Sidney

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jambo101
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« Reply #20 on: November 17, 2019, 08:27:26 AM »

This depression is getting worse as all i want to do is lay in bed,i dont go out any more exept for dialysis and i think about death a lot :'(
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Jim
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« Reply #21 on: November 17, 2019, 09:02:52 AM »

call your nephrologist tomorrow and tell them how depressed you are. Its a common problem in people with chronic illness and especially CKD. They can refer you to the best resource. Meanwhile, keep in touch with us and with friends and family. You are not alone.
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jambo101
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« Reply #22 on: November 17, 2019, 01:19:38 PM »

 I talked to my nephrologist she said take more opiods i also asked for a consult with the hospitals mental health unit ,after many questions i was told there was nothing they could do for me. ::)
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Jim
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