Prison

[ct7567]

I have been on Dialysis since 2012 and I have not adjusted well. I used to be a supervisor for a McDonalds franchise owner and I oversaw 3 of his stores, I am second only to his daughter who was co-owner. I worked hard to get that spot and I loved my job, I made me feel good when I saw customers that left happy. Now I am useless and do not serve any purpose. Dialysis is a prison and I have a life sentence oh sure the techs and the rest of the staff are nice and try to make it pleasant, but a prison is still a prison no matter how gilded it is.   

[Simon Dog]

Consider home dialysis.   If in-center is prison, home dialysis (PD or hemo) is like living in a halfway house or supervised release facility.

[Blake nighsonger]

Absolutely it is ct7567, for me so thankful for having a great support system.    I found a whole new world with HD. Sorry you feel like that, i know exactly how that is. 

Very exciting and challenging most days, rewarding as in the sence of achievement doing Dialysis at home.

All very overwhelming. It made a difference in my mood, and attitude to talk to my psychiatrist , he said "i'll fix that, come in at 9" as i was definitely being overwhelmed at home once  (called him after hours).

 
 I don't know much still, this site really motivates and inspires  me.

Thanks, "take it easy now", as my friend Harry Hill always said in parting.

[Charlie B53]

I may not agree so much with the Prison analogy however I can easily agree that Dialysis is a pretty intense burden to be placed on all of us.

We have to admit while we do not 'like' it and hate the impositions it places not only on the time and effort required, but the dietary and fluid constraints are stressful as well.  And those do not stop at the clinic door, but follow us throughout our day, EVERY Day!

Are you having any problems with your treatments?

What are your average amount of fluid take-offs?  This is the most critical number as larger take-offs do leave serious after-effects.  Cramping possibly one of the immediate painful effects, but cardiac stunning can be life threatening.  Labs can eventually be controlled within 'range', but gaining control of fluids is critical to successful long-term treatment.

This ain't easy.  But it is possible.

Talkl with us, we will try to help.

Take Care,

Charlie B53

[Michael Murphy]

I don’t agree with the prison analogy I think it’s more like a miserable job. Three days a week I go to the clinic. Sit for 4.5 hours in a chair while I have all the blood in my body removed filtered and replaced.  In between treatments I must watch my fluid intake and make sure I take my binders.  The payment 4 days a week to do things I want to do.  A miserable existence yes but for me the rewards out way the crap.  Dialysis is voluntary and while a pain in the butt it still is worth it .  I think of it as a bridge to the future since ther is enormous amount of work going on to provide a better treatment like the Implantable Artificial Kidney. 

[Paul]

Seconding what Michael Murphy said. Think this: Without dialysis you would be dead. Dialysis is not taking three days out of your week, it is giving you four, as a free gift. And it is giving you years, decades even. Life you would not have without dialysis.

I loved my job

I know how you feel there. I lost my job due to disability making it impossible to do it anymore (not dialysis, my boss and I had worked out how we could work round that, but a pocketed virus wrecking one leg). I loved that job to the extent that I would have done it for free. Would still do it for free too if I physically could (I worked for someone, but there are charities who need people to do a similar job for them).

Now I am useless and do not serve any purpose.

I make it a rule not to swear on boards, unless lots of other people do (although my definition of a cuss word may be a bit different to some people). However in the case of that statement there is only one compound word that suitably sums up my response. Boll-f***ing-ocks. You are not useless. Dialysis takes three days out of your life, possibly less if you are on late enough to do stuff before dialysis. There is a hell of a lot you can do in those four days. You can serve a purpose. Most of the people below retiring age at my clinic still work. Some part time, some have full time jobs that fit round their dialysis. And some of those that do not work (including retired) do charity or voluntary work. Plus there are all the other things you do in your life, little things that you take for granted but make a big difference to other people.

So no, you are not useless, and yes, you do serve a purpose.

[lulu836]

.   If in-center is prison,

Strongly disagree,,,,,,how it is perceived is based on the attitude.  I find many places to go that I have not been on the internet.  Relax.....jeez it's only for 3 hours (give or take)....it's just not a big deal.

[GA_DAWG]

Count me as supporting Michael Murphy's words. I appraoch it as a job that is required if I am to spend the other days of the week with the wife and family I love. I do miss the real job I had and enjoyed greatly, as well as the income. Lulu is also correct in saying, like most things, how dialysis is perceived is based on attitude. Those who hated their job and were miserable while doing it, and never missed an opportunity to tell people how much they hated it,  usually were not very good at that job. Look at all the people with much worse diagnosis than requiring dialysis.

[Simon Dog]

Dialysis is nothing compared to an ALS diagnosis.  At least with us, there is a chance the light at the end of the tunnel is not an oncoming train.

[Paul]

Look at all the people with much worse diagnosis than requiring dialysis.

True that. After I was diagnosed with kidney problems and was closeish to starting dialysis, my sister was diagnosed with cancer.

Kinda put my problems into perspective.

[Riki]

I agree with it being an attitude thing.  A friend of mine, who has since gotten a transplant, used to say that he looked at dialysis as a part time job.  It was 12-15 hours per week, and the pay sucked but the benefits were awesome.  I try to look at it that way as well, and I try to find other things I can do when I'm not in dialysis to enrich my life.  I'm currently in school full time, I travel, I go out with friends, and I do dialysis 3 evenings a week.  I use that time as my "me time" and do things like watch movies on  Netflix or read, things that I wouldn't normally have the time for.  I've been on dialysis nearly 14 years with no real end in sight except for *maybe* that artificial implantable kidney that Michael mentioned.

[Whamo]

   The secret to handling dialysis is your adaptation.  You must adapt to the demands of the disease.  Keep your fluids, phosphorus, potassium, and depression to a minimum.  After six years, two on hemo, and four on PD, I enjoy my life even though I spend about 11 hours on the machine.  I do ten at night and about one during the day.  I am lucky.  I have a loving wife.  I paid off the mortgage to my home.  I have a pension.  I really enjoy my exercise the most.  I dance along with Jane Fonda's low-impact aerobics.  I keep current with the surfing world on the internet even though I live 50 miles from the ocean.  I invest in stocks.  I read.  I write.  And I look forward to getting a transplant or an artificial kidney.  Yesterday I saw a video on youtube about a man that tried out an artificial kidney.  It worked well for him.  He was so happy to eat cheez its and mac and cheese again, and drink his fill.  I pray you adapt and enjoy the gift of life dialysis gives you. 

[kristina]

I have been on Dialysis since 2012 and I have not adjusted well. I used to be a supervisor for a McDonalds franchise owner and I oversaw 3 of his stores, I am second only to his daughter who was co-owner. I worked hard to get that spot and I loved my job, I made me feel good when I saw customers that left happy. Now I am useless and do not serve any purpose. Dialysis is a prison and I have a life sentence oh sure the techs and the rest of the staff are nice and try to make it pleasant, but a prison is still a prison no matter how gilded it is. 

Hello and I am sorry that you came to feel like this ...  Could it be that you go through the "dialysis-blues" right now?
You know, my own dialysis-situation hits me as well now and again and then I sit down and think about all the positive "things" I enjoy and the negative "things" I could do without and strangely enough, in my case, whenever I add everything up, the positive "things", like my adorable hobbies and some of my wonderful experiences always win.
I do wish you a similar experience with "things" in your own field and send you my kind regards from Kristina.

[kristina]

  .  I invest in stocks. 

Hello Whamo,
Wouldn't it be fun if we had here on IHD some "introductionary class" into how to "go about" stocks?
Couldn't it be be fun and at the same time couldn't it be fascinating to learn ?
... Or is it too "specific" and cannot be learned "just like that"?
Best wishes from Kristina.

[LorinnPKD]

Whamo, I think you're onto something about the adaptation.  Well said!

I love watching wilderness survival shows. Like, there's this show called Alone where they drop about twenty or so survivalists alone in their own individual remote camps, without anyone else, in the wilderness with limited supplies. The person who sticks it out the longest gets a big prize.  People build shelters and tough it out for months.

In a few episodes, two things become very clear:

- While the prize is often what gets them out there, it's something within them that makes them stay
- The people who last the longest are typically the people who don't try to battle Mother Nature, but instead learn and adapt to her.

I will very likely never be on a survival show, but in a way I feel a kinship with those who do.

[lulu836]

I love watching wilderness survival shows. Like, there's this show called Alone ..........

I "binged" on  Alone in one weekend recently....very good show.

[Charlie B53]

We have watched a few 'Naked and Afraid'.  Similar program but naked, and VERY limited supplies.  As in a machete and a small canvas bag.

Other than having to go to clinic MWF, I've no doubt I could do it most anywhere around here in the U.S.A. But some of those places they drop them off, as in jungle with very poisonous creatures, I'm not so sure.

Of course I've always had the luxury of having my truck with all our camping stuff along with me.  That makes it so much easier.

[lulu836]

I watch that also.  I enjoy the types of reality shows that emphasize how far some people will go just to get on TV,

[Paul]

shows that emphasize how far some people will go just to get on TV

We have a survival type TV show in Britain with celebrity contestants. That has become a home for celebrities who used to be famous but now rarely get TV work, desperately trying to get rediscovered by a new generation. It is quite sad sometimes, when you see the lengths they will go to in the hope of becoming A list, or at least B list, again.

[GA_DAWG]

We have a show like that too Paul, though unfortunately it is called the White House.

[Whamo]

I understand how people feel about feeling in prison.  I've been on dialysis for almost seven years.  I did two on hemo, and I've done four on PD.  I do 11 hours of home dialysis a day every day of the week.  i've adapted well, but I still have bad days.  I'm lucky to have my writing to do when I feel well.  Exercise has helped me cope.  Adapting to the renal diet is a big thing.  I've reduced fluid intake since I stopped eating out and gone low sodium.  That's helped quite a bit.  I'm lucky to be financially well off.  I'm expect to get very rich when the economy collapses from a gold mine stock I own.   My marijuana stocks have done well, and they're promising to pop in the future.  I wish I could be more productive with my writing projects.  I have to be in a food frame of mind to write.  I did publish a book last year, "My disney Side" that's available on amazon in print or digital.  I enjoy watching the professional surfing contests online.  I play Stratomatic baseball online.  I read the Wall Street Journal.  I dote on my wife.  My best advice to you is try to adapt to the changes.  Dialysis can be brutal if you don't.

[GA_DAWG]

Dang Whamo. My stock was doing well also, but now, its down to seeds and stems again.

[Whamo]

I hear you, bro.  My portfolio did the same thing, but bumped up a few days ago.  In time I think the pot stocks will pop again.  There was too much speculation for awhile.  It could have been worse.  It could have been cryptos.  I hear oil and gas penny stocks are a good bet but I'm not buying into it.