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fifal9
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« on: January 23, 2020, 08:04:27 AM »

Hi,

I go by Jules and I'm new here and to a lot of this stuff.
I'm not on dialysis. I'm in stage 3 of CKD and trying to stay out of stages 4 and 5.
I've already made up my mind that if/when the time comes I'm going to say 'no' to dialysis.
I'm not sure whether I will get the support I'm looking for here or not, but here I am.
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MooseMom
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« Reply #1 on: January 23, 2020, 08:18:20 AM »

Jules, welcome to our community.

"Support" is an ever-changing commodity.  I was pre-dialysis for literally decades, the last 8 years of which were really harrowing for me.

Of course I wanted "support", but what that looked like could change from day to day.  Some days I didn't want to talk about it or think about it.  Some days I needed the support of my nephrologist, who was one of those people who wasn't the greatest at providing a kind and gentle word.  So I would ask him, "Tell me two things that I can take away from this appointment that will boost my spirits.  Tell me two things that you'd consider to be good news."

On other days I needed to talk to friends and family who knew absolutely nothing about renal disease but could still tell me that they loved me.

On still other days, I'd come here to IHD to "talk", at a distance, to people who really did know what I was feeling, and why.  This is why IHD created the pre-dialysis forum because these patients have a different set of needs and concerns than other people who are in different stages of kidney failure, are on dialysis, or are already transplanted.

The question of whether or not to refuse dialysis when the time comes is a topic that we have discussed in great length many times.  You can use the search function to find these threads if you'd like.

Again, welcome.  I am quite confident we can be of some help to you.  Thank you for the introduction.  If you have specific questions, just find the appropriate forum and post your query!
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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."
Charlie B53
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« Reply #2 on: January 23, 2020, 08:22:58 AM »

Hi Jules and Welcome to IHD!

Reducing the workload on your kidneys and lowering blood pressure if it is high, can make a huge difference in how long your kidneys can last before needing dialysis.  Google Renal Diet, learn how to eat more responsibly cutting out the excess potassium and phosphorus which are two of the harder elements the kidneys have to remove from your system.

The decision whether or not to begin dialysis is a personal one and much thought needs to be done as well as a lot of education as to the different types of dialysis and how each one is done, and how they will affect your daily life.

I highly suggest you Google Kidney School and spend time studying.  They have a whole series of self-paced learning modules that will teach you far more than the Dr's or Nurses can tell you.

There are those that elect not to begin dialysis and that is their choice.  But that doesn't necessarily mean that is the best choice.  Again, this is a very tough decision to make.  You want to be sure youo have ALL the information so you can make a very well informed decision.

Post any and all questions you have, we are here for that exact reason, to help you understand and decisde.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: January 23, 2020, 12:35:13 PM »

Welcome to the site Jules


 :welcomesign;
 
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #4 on: January 23, 2020, 02:25:21 PM »

Welcome Jules. You WILL get out support whatever your decision, however if your decision is to give up and die, you will find some of us try to talk you out of it. However even those members will accept it is your choice and that if you want to die, then that is your decision and we will all except it without censure.

In the meantime, welcome to the site, and here is hoping you never get to the point where you have to make that decision.

 :welcomesign;
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
iolaire
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« Reply #5 on: January 23, 2020, 03:45:35 PM »

Welcome to the group. We have some good threads on this topic.  A good way to find them is to search google with your keywords plus add “site: http://ihatedialysis.com/forum/“ without the quotes. That will limit your search to this site.  I think one set of keywords on a big thread is “how long will it take to die” if I stop dialysis.
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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.
iolaire
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« Reply #6 on: January 24, 2020, 09:07:52 AM »

update:
Here are some links, I'm presenting them as they cover some of the questions of what happens if you don't end up going the dialysis route and also how to make the non dialysis life easier if it leads to end of life
https://ihatedialysis.com/forum/index.php?topic=15216.0

also on this post I present a lot of links:
http://ihatedialysis.com/forum/index.php?topic=33736.25

If you are on a slow decline then I'd guess that you will have a good bit of time from when they say its time to go on dialysis to when you really start to feel bad or your body starts to have bad symptoms or get to a point where opting for dialysis doesn't lead to recovery to some positive living situation. 
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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.
fifal9
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« Reply #7 on: January 24, 2020, 12:51:08 PM »

Wow - Hi Everyone!
Thank you so much for the welcome!

I really didn't expect to get any replies - and especially not so many so quickly.
It took so long to get my account approved, I was starting to think maybe this site was mostly defunct, but now that I'm in I'm seeing it's a lot more active and vibrant than I thought.
Thank you very much for the opinions and the links. I'm listening to the kidney school audio, and I'm reading around the forum on what other people who also are refusing dialysis have to say.
I hope you guys are right and I have a very long time to think about my choices and learn - though sitting here thinking through all this over and over again seems like it's own torture sometimes.

I'm looking forward to being here regularly and chatting on various topics, though I'm still very ignorant on many things.
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MooseMom
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« Reply #8 on: January 24, 2020, 01:35:52 PM »

Hi, Jules.  Could you perhaps give us a bit more information about which kind of renal problem you have?  Do you have a specific condition like PKD or FSGS? 

Also, can you tell us what kind of treatment plan, if any, you are on right now?
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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."
fifal9
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« Reply #9 on: January 27, 2020, 09:41:48 AM »

Hi MooseMom,

I have been diagnosed with primary FSGS.
Right now I'm on prednisone and 2 blood pressure meds - amlodipine and losartin.
I've also been doing a low protein, low sodium, low potassium diet. And I've started exercising more.

I'll be testing to get into a stage 3 clinical trial next week, and if I get in to it I'll have a new med, but I won't know for sure what it is because it's a double blind study.



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MooseMom
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« Reply #10 on: January 27, 2020, 10:04:45 AM »

I was diagnosed with the same malady in 1992.

If you have any questions that you think I may be able to help you with, please do not hesitate to ask.

I am very interested to know which new med is involved in the clinical study!
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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."
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« Reply #11 on: January 27, 2020, 03:51:03 PM »

A problem with primary FSGS is that it often reappears in the donor kidney, sometimes before the patient is even closed up (determined by urine from the replacement kidney).   Some people escape that complication so there is hope.
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MooseMom
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« Reply #12 on: January 27, 2020, 07:34:49 PM »

A problem with primary FSGS is that it often reappears in the donor kidney, sometimes before the patient is even closed up (determined by urine from the replacement kidney).   Some people escape that complication so there is hope.

I am not sure it "often" reappears in the donor kidney.  From my very first annual post tx appointment, I was told that recurrence was not on their radar.  That said, I know the same isn't true for everyone.  FSGS doesn't present the same in every patient.  I guess the same can be said for any sclerotic disease, actually.
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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."
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« Reply #13 on: January 28, 2020, 05:35:59 AM »

Did you have primary or secondary FSGS?  Secondary does not have the recurrent problem plus, I think, the incidence with primary recurring goes down with age
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MooseMom
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« Reply #14 on: January 28, 2020, 08:21:01 AM »

Did you have primary or secondary FSGS?  Secondary does not have the recurrent problem plus, I think, the incidence with primary recurring goes down with age

Primary.

It has all been a bit of a mystery, really.  I'd be really interested in finding out what caused it.  I'm not sure anyone knows what causes sclerotic diseases.  Remember Walter Payton on the Chicago Bears?  He died of the same sort of disease except it attacked his liver.  I'd always wondered why he didn't get a transplant, but I just recently found out that he'd developed a particular kind of uncommon cancer that can present in the disease.

I have an acquaintance that has MS, which is another auto-immune disease which causes some part of the body to become inflamed and then "heal" with tissue that no longer functions normally.  I don't think anyone knows what causes MS, either.

I was certainly aware of the risk of fsgs occurrence in a transplanted kidney, so I was quite taken aback when the tx neph told me I'd been "cured".  I would never use that word, and I am not sure why she did.  I've had my tx for 7 1/2 years, and not one person has mentioned recurrence.  They seem much more focused on preventing rejection.  This is a mystery to me, too.
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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."
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« Reply #15 on: January 28, 2020, 12:15:52 PM »

Jules maybe you could explain why you would rather die than go on dialysis.
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Jim
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« Reply #16 on: January 30, 2020, 09:48:49 PM »

In my opinion Dialysys sucks but dead sucks worse.  I 68 and have been on Dialysis for about 8  years,  obviously that’s 8 years I would have missed without dialysis.  Three days a week I have dialysis I am on the chair for 4.5 hours and setup and removal add another 1.5 hours. Include a 2 hour nap when I get home that’s a 8hours times 3 in involved in treatment. 24 hours a week, out of 168 hours in a week.
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Simon Dog
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« Reply #17 on: January 31, 2020, 01:57:25 PM »

In my opinion Dialysys sucks but dead sucks worse.  I 68 and have been on Dialysis for about 8  years,  obviously that’s 8 years I would have missed without dialysis.  Three days a week I have dialysis I am on the chair for 4.5 hours and setup and removal add another 1.5 hours. Include a 2 hour nap when I get home that’s a 8hours times 3 in involved in treatment. 24 hours a week, out of 168 hours in a week.
Assuming 8 hours of sleep a night (including overhead of getting undressed, taking a crap, brushing your teeth, etc.) that 168 hours becomes 128, or 18.75% of your waking days.   Now, assume you only enjoy half you non-dialysis time,  you're down to a bit over 40% good time.  Still time left for some good living.  BTDT.
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fifal9
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« Reply #18 on: February 01, 2020, 07:47:32 AM »

I just don't think the quality of life will be good enough on dialysis.
I hate drs, the healthcare industry and needles and blood.
I don't think I can handle it mentally as well. I have no support system and I'm highly paranoid.
Part of me is convinced this is where the drs want us. Right on the verge of death, constantly crawl back for another dose of life-giving treatment.
Another sweet toke on the insurance teat.
They don't make money when you're well. They don't make money when you're dead.
They only make money when you are sick - so that's of course where they want you. It's in their best interest.
I hate the thought of becoming a cog in the system that makes pharma and insurance companies rich.
Yes, I'd rather die than lose everything and be indigent and relying on dialysis to live.
The ONLY convincing argument I've read so far in favor of dialysis is to allow a more quick death once the kidneys completely fail as opposed to having a very long, slow decline in the final stage.


I am very interested to know which new med is involved in the clinical study!

The name of the drug for the trial is Sparsentan. I'm surprised I can't find any references to it on this site.
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MooseMom
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« Reply #19 on: February 01, 2020, 09:38:49 AM »

Most of us feel the way you do about the health care industry as a whole, but I would think twice about sacrificing your life just to screw with it.

Quality of life will of course be affected.  People who are otherwise "healthy" seem to do better than those who have co-morbidities like diabetes or some other underlying health problem. 

You may find that most people here on IHD who reflect upon this question will probably advise you to at least try dialysis for a while, at least until you are "stable", and then decide if you quality of life is "good enough".  No one can force you into any course of action.

It is entirely possible that you could go years before having to even think about dialysis.  I spent 6 years in stage 4 and then another 2 years in stage 5 before I was lucky enough to have a pre-emptive transplant from a deceased donor.  I was probably in stage 4 much longer than I realized.  So, I spent 8 years feeling exactly as you do now.

I assume we have not mentioned Sparsentan because none of us are on a clinical trial for the drug.  I wish you good luck in the trial!
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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."
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« Reply #20 on: February 01, 2020, 11:11:51 AM »

Clinics suck.

Dialysis in a clinic sucks.

Home dialysis, if you are up to it, does not suck as much, and yelling at the tech consists of talking to yourself.

Be sure to evaluate all options - PD, home hemo, in center, etc.   One may such just enough less to make it worth not killing yourself by forgoing treatment.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #21 on: February 02, 2020, 07:23:37 AM »


yelling at the tech consists of talking to yourself.

Oh no it doesn't, not if you yell loud enough and threaten to sue or go to the local press (or both). It takes effort and determination on your behalf, but if you work at it, they listen.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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« Reply #22 on: February 02, 2020, 10:37:33 AM »


yelling at the tech consists of talking to yourself.

Oh no it doesn't, not if you yell loud enough and threaten to sue or go to the local press (or both). It takes effort and determination on your behalf, but if you work at it, they listen.
Actually it does, if you had parsed my entire statement :).  Re-read those first two words of the sentence:

Home dialysis, if you are up to it, does not suck as much, and yelling at the tech consists of talking to yourself.
« Last Edit: February 02, 2020, 10:39:27 AM by Simon Dog » Logged
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #23 on: February 04, 2020, 02:18:13 PM »


If I yell at myself I get scared of me and do what me tells me to do. :)
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Charlie B53
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« Reply #24 on: February 04, 2020, 05:25:15 PM »


I can truthfully say that my 3 1/2 years doing PD at home I still had the freedom to eat and drink as much and whatever I wanted.

I also still had the energy to get outside in my yard and garden doing the things that needed to be done daily.

My only complalint was the total hours spent daily doing my exchanges.  The interuptions during my days when I was still doing manual exchanges.

Switching to the Cycler and running nights was great, however I lost my evenings.  I had to set-up my machine by 7 and get connected before 9 in order to get finished, disconnected and clean up before 7 in the morning.   Lots of hours, but compared to feeling better it is something that I must seriously reconsider returning to.

I only saw my Dr once a month at my clinic visit, otherwise I took care of myself.

Home PD is a very viable treatment.  Look into it.  Keep studying at Kidney School.  You may be pleasantly surprised.
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