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SteveGus
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« on: November 18, 2016, 11:30:12 AM »

My name is Steve.  I'm on dialysis.  Is this like AA or something?   :sarcasm;

At any rate, my tale is mildly ironic.  I had known that my kidneys were failing for years; it was one of the many purely paper health problems I had.  Most of the physic I took was to  massage test results rather than responsive to any health complaints I actually had.  (I don't think I've given 'informed consent' to any medical test unless I know what kind of trouble I'm inviting by having it done.  If I had known the dangers of 'routine blood work' I would have run from the needle screaming.) 

I had always assumed that when my kidneys went, that would be it.  Ironically, what sent my health into a tailspin was when I was operated on to install a fistula, the idea being that I would need dialysis several months or years down the pipe and this would make me ready if I chose to have it done.  Even then, I was leaning towards 'no'.  At any rate, I ended up with pneumonia, was on a respirator for several days, and after the hospital ended up in rehab because  I had lost the ability to walk.  That is recovering but not quite back yet.

And in the process my kidneys failed.  I now have a catheter in addition to the fistula, and would prefer they keep using the catheter.  But no one listens, and instead speaks of bigger and bigger needles.  I'm still doing this mostly because my elderly father is helpless in the kitchen and needs me to feed him.  This fortunately means blowing off most medicalistic diets, too. 

At 57 I am prepared and ready to die.  I don't want a transplant; I'm single and childless.  I doubt that getting one will make my life that much less defined by medical things.  Let somebody else have it.  I expect that due to American politics, I'll soon become uninsurable and the decision to discontinue treatments will be made for me.  I find myself not minding that nearly as much as the world thinks I should. 
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I've opened up my veins too many times, and the poison's in my heart, and in my mind.
Poisons in my bloodstream.  Poisons in my pride.
I'm after rebellion; I'll settle for lies.
  - Blue Oyster Cult
Simon Dog
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« Reply #1 on: November 18, 2016, 11:44:25 AM »

The needles are not as bad as one might assume, and the catheter poses risk of some ugly complications.  I am 58, but not ready to die, and I have moved from fear to mastery of needles, and the fistula is working great.  Give it a chance and, for starters, ask for an EMLA Rx.  If you put it on an hour before treatment, and cover the goop with saran wrap to keep it in place, it will really dull the minor pain of needle insertion.






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« Last Edit: November 19, 2016, 07:38:47 AM by cassandra » Logged
kickingandscreaming
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« Reply #2 on: November 18, 2016, 11:51:21 AM »

Welcome, Steve. 

Hey! At least you have a father to keep you here and fighting.  The only reason I (at 75) persist in all this nonsense is my 15 year old dog (see pic) who is descending into canine dementia and is less and less here.   But I do understand your reluctance to fight hard for a life so medically defined.  I kick and scream (hence my handle) in battle against that identity also.   With kidney failure, we have stumbled into a country that no one wants to inhabit and a sub-culture that tries to make the best of it.  In my darkest moments, I know that (besides American politics), kidney failure gives me legitimate tools to end my life--when I get to that point.  That's a good thing.

I think the most important thing, for perhaps most of us, is to find something still meaningful about life.  I struggle with that every day.  I hope you stick around as long as it's doable.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
MooseMom
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« Reply #3 on: November 18, 2016, 12:19:57 PM »

How in the world did you go from having a fistula created to landing on a respirator with pneumonia?  What the hell happened?

No one can force you to use a fistula.  No one can deny you continued use of a catheter.  I know that the "Fistula First" movement is strong in lobbying for just that...fistula use.  But I do know someone who resides in another country whose nephrologist wholeheartedly agreed to have him use a catheter because he is an artist/pianist and obviously does not want to risk losing complete control of his hands.  I will say, though, that he is very cognizant of the higher risk of infection so is absolutely and completely meticulous about keeping the area clean.  Not a lot of patients can be that self disciplined.

Dealing with a chronic disease (and the endless treatments, like dialysis) means that you lose so much control over your life, that other people make decisions for you and that you feel helpless and depressed and adrift.  Take control where you can.  If you really don't want to stop using your catheter, then don't.

I am glad that you have joined IHD and hope we can be of some help to you.
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kristina
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« Reply #4 on: November 18, 2016, 02:34:19 PM »

Hello Steve,
please give it a fair chance ...
Best wishes from Kristina. :grouphug;
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Simon Dog
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« Reply #5 on: November 18, 2016, 05:12:36 PM »

Now, for the politically incorrect response.  If you refuse D, you will get sicker as your kidneys fail and die a slow death.  If you give D a chance for 6 months or so, all your residual function (assuming hemo) will soon be gone and, if at that point, you decide to stop D you will have a relatively quick and clean kill.   Besides, you may find life of D is not as bad as some would have you believe (I know that was my experience).  Be sure to discuss both paths with your nephrologist, including his/her assessment of the realistic outcome and manner of death if you choose that path.

But, life on D can still be worthwhile for many.  It is for me.
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Michael Murphy
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« Reply #6 on: November 19, 2016, 03:31:33 AM »

Steve it just ain't that bad.  Dialysis sucks no doubt about it.  Dead sucks more,  the cath appears easier and has some small advantages like quicker time at three end of session.  But and it's a big but, as time goes by and the need to meet clearances goals becomes important you will have your time increased. Fistula patients use bigger needles, higher pump speeds to meet clearance goals.  I spend about 18 hours a week on dialysis, that leaves me 150 hours a week to have a life. 
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: November 19, 2016, 07:45:54 AM »

Welcome to the site Steve

    :welcomesign;


Take care, Cas
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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
Charlie B53
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« Reply #8 on: November 19, 2016, 08:08:00 AM »


Hi Steve,

Welcome to IHD.

I've never been to an AA or NA meeting, so I know nothing about what they are like.  I gave up alcohol when I came back to the U.S. in 74.  Gave up dope in 81.  No meetings.

IHD is more like an extended Family, although everyone is either a kidney patient or a caregiver for a kidney patient.  We share information, experiences, knowledge learned from personal experience or any other souces.   We believe better choices can be made given as much information as possible.

Sort of like you, regular Dr visits and labs had shown my kidney function declining for many years.  I wasn't concerned as I had no symptoms.  Until my legs started swelling.  I didn't notice that my urine had darkened, was far stinkier, and foamy, I don't watch anyone else P so as far as I knew that is just how it is supposed to be.  It isn't like we are taught about P in school.

I became soo tired, my legs constantly swelling until they were leaking clear fluid.  The leaking sites sometimes became infected no matter how well I cared for them, landing me in the hospital, one time for 12 days.

I started on PD, Peritoneal Dialysis.  Had a catheter placed in the abdomen, tunneled up and comes out somewhat over my heart.  I have a Cycler machine, I connect the bags of diastillate to then connect to my cath and go to bed, every night.  Get up in the morning and disconnect.  Done.   Over 3 1/2 years already.  I am NOT sick, and NO swelling.

I can expect a long fruitful life yet.  I just wish my energy would come back.

Give some thought to what you want to do.  A job, hobbies, something to occupy your time and attention.  You can have a productive life while on Dialysis.  It just take a little adjustment.

Take Care,

Charlie B53


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Michael Murphy
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« Reply #9 on: November 19, 2016, 11:06:01 AM »

Steve one other dialysis fact there is a wave of new technology coming in the next decade.  Cloning, implantable kidney machines, improved filters.  The implantable kidney has cleared the first phase of FDA testing.  Dialysis is now a bridge to new and better treatments in the future. 
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kickingandscreaming
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« Reply #10 on: November 19, 2016, 12:06:27 PM »

Code: [Select]
The implantable kidney has cleared the first phase of FDA testing.  Dialysis is now a bridge to new and better treatments in the future. 
Sadly, I'm not holding my breath.  I'd love nothing more than to have an implantable kidney, but I'm afraid that medical innovation is about to really go into the Dark Ages, along with the rest of us under the new administration. Trump doesn't have an innovative bone in his body and until darling Ivanka needs a kidney, we won't see any money going to places working on innovations.  Without a significant infusion of money, Shuvo Roy et al will be stuck at Phase One.  Trump doesn't even have or know how to use a computer.  That's the archaic kind of mentality he is working with.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #11 on: November 19, 2016, 12:46:29 PM »

Quote
Trump doesn't even have or know how to use a computer.
It's interesting that both candidates shared this trait.
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kickingandscreaming
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« Reply #12 on: November 19, 2016, 01:39:05 PM »

Quote
    Trump doesn't even have or know how to use a computer.

It's interesting that both candidates shared this trait.
They're both of the generation that is flummoxed by technology.  I'm older than both of them and I'm a professional web designer (a career started late in life after 30 years as a psychologist).  And they both are rich and "important" and have staffs who do all the dirty work for them.  This allows both of them to be out of touch.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #13 on: November 19, 2016, 02:51:58 PM »

Quote
  And they both are rich and "important" and have staffs who do all the dirty work for them.  This allows both of them to be out of touch.
I bet they would fail miserably on "the price is right" if you asked them what a loaf of bread or a six of beer costs today.
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dialysisuser82
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« Reply #14 on: December 18, 2016, 06:02:17 AM »


                   Having been doing straight Hemodialysis for 34 yrs+. and I can only speak from my personal experience.

  It is not easy and I find that it becomes a discipline, and it is my life. The center can only do so much with few advises, so are the Neph. Everyone reacts differently to the initial dialysis.  It takes sometimes for the body to adjust.

 There is a trade-off for every method: be it transplant, Hemodialysis, Pd. etc... all options are there. 

 I choose Hemodialysis at center because I do not want to see the machine haunting me. I did a lot of research on my own, and find that for me this option give me least problem.

  It took me sometimes before I could understand all the monthly lab. results, and have been able to fast all days from food and liquid without endanger my chemistry.

  All I can say is that it becomes a personal problem, you and you alone will find the solution suitable to you. Living is tough but it comes with joys, laughs, tears, disappointments and like a kid you will stand up and restart again.

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Simon Dog
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« Reply #15 on: December 18, 2016, 07:32:54 AM »

Well said.   The key is to learn as much as possible about all options so you can choose the one that fits your life the best.   There is no single "best" choice.
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SuperHuman
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Hello, nice to meet you!

« Reply #16 on: August 01, 2017, 12:17:08 AM »

Welcome SteveGus,
It's true. Nobody can choose the treatment path for you, though they will try, and sometimes it really is for good reasons. I know a pastor who is on Dialysis, and felt the same way, he won't ever use anything but a catheter despite all the risks. I haven't talked to him in a few years, but the times I did, he was doing pretty well taking care of it and keeping it clean. That's the most important part of it, keep it clean and no infection will happen. You should do what you feel is best, what will make you most happy and what will keep your strength and give you more positive days, than not! If a little bit of relief by not using needles will help you in this journey, then I say what the hell! It's still better than dying, if you still have that choice! Make the best of it if you can, focus on something new, something you live to do, and try not to focus on too much Dialysis even though it's your life now. Think of it as a job, just somethign we have to do to stick around,..more importantly go out and find reasons why you still want to stick around! None of this is easy, but if life was a bowl of cherries,.. what would really be the point of it all??

Whatever you do, don't worry about the politics, they won't ever cut us off Dialysis treatments,.. there are just too many people on Dialysis, and the people of not only our country, but of the world would never let this happen! That should be the least of your worries! Go out and find something new and different in the world! You may just find something you never expected to like, and end up loving it!!

Stay strong, as much as I don't really want to do this either anymore, and I'm still young,..I just tell myself, we only get to be here in this body, and at this time period of life just once! Out of all the Multi-Universes in the endless seas of Galaxies, God or someone out there chose you to be here out of impossible odds! So take advantage of that, and try to make the best out of it! Hang in there!

-Even if you have one good day out of 100 bad days, you can still say to yourself,..there will still be good days ahead!
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"With Science, Technology,..and a little will power! anything is possible"
dialysisuser82
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« Reply #17 on: August 03, 2017, 03:32:44 AM »


 Hey SteveGus,

  This is my 35 yrs.+ on dialysis.  Yes, I have been doing straight with no desire of transplant but that does not mean it has been easy neither.  One thing for sure is time flew by. I blink and it is 35 yrs. has gone.  It seems like yesterday when I did not comprehend what dialysis was...so much trials and errors I went through until I decided to take charge of this thing called dialysis.  Just like driving, you have to obey the road rules, else there will be serious casualties, then more problem.

Regarding needles: when you puncture your skin it takes such concentration that you hardly feel pain!  Believe me, there are times where I keep missing the right spot and had to depend on the nurses. Trust me, it feels more painful.  I have done the needles for 20 yrs. and sometimes I had to re puncture 5 times.

  "I find myself not minding that nearly as much as the world thinks I should. "  True. Life is a journey with a mission to accomplish, when the mission is done, you will be set free not a second delay.  The option you contemplate will not be pleasant on that dimension.

  If you look down there are people in much worse situation than you, if you look up there are those much better than you.  But you know it only appears that way, omission of problem?  Null. 


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smartcookie
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« Reply #18 on: August 03, 2017, 11:18:30 AM »

Hi, SteveGus!   :welcomesign;

I really hate the abrupt way you were introduced to dialysis.  It sucks, plain and simple.  I understand your reasons for staying on dialysis for now, and the desire to discontinue treatments.  And yes, there are other methods of treatment besides just transplant, but only you can decide if they are for you.  You are perfectly within your rights to refuse treatment and pass away. 

Please note, I do encourage you to look into PD treatments, even if you decided not to do it.  I also want to let you know that dying from kidney disease is not always as painless and easy as doctor's tell you.  There is a misconception that death from kidney disease is painless and one of the best ways to go.  Some people to have a pretty painless death because they lapse into a coma from toxins, but there are people who have terrible nausea and vomiting, awful fatigue, painful sores from high phosphorus or other toxin buildups, or a massive heart attack from high potassium. You can swell up from fluid build up, making it difficult to breathe and walk.   It can make your legs weep, making you more susceptible to sores.  Things will taste terrible, too.  It is not as easy as skipping a couple of days of dialysis and going into a coma.  Dying from kidney disease can take a week to months.  You will need someone to take care of you during the time, so if you decide to discontinue dialysis, please contact hospice.  They help keep you comfortable and let you die with dignity instead of wasting away all swollen and sore covered.  You can even do dialysis where your fluid is pulled and not toxins.  This way, you feel a little better from not having water weight, but are not actively treating the kidney failure. 

I also encourage you that no matter what you decide to do, please come back and post.  We have some great information and tips to help you get through everything you are going through.  I can't wait to hear back from you!
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Michael Murphy
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« Reply #19 on: August 03, 2017, 04:51:57 PM »

One of the things to watch out for here is the debate on the best form of dialysis.  Everyone has a favorite and thinks it's the best.  And since this is an individual choice everyone is right.  The way this should be done is to examine the various options, then see how they fit into your life.  Choose the one that suits you the best.  I have a summer house in the Adirondacks and I was leaning to PD until I realized I would be banned from swimming in the nearby lake.  Like I say it has to fit in with your life.






sp mod Cas
« Last Edit: August 04, 2017, 01:49:21 AM by cassandra » Logged
dialysisuser82
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« Reply #20 on: August 03, 2017, 05:54:27 PM »

  Hey SteveGus,

    Please remember there is one copy of you, create uniquely.  We all care about you even though many of us are strangers but with a common problem     "Dialysis".






sp mod Cas
« Last Edit: August 04, 2017, 01:50:41 AM by cassandra » Logged
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