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Author Topic: Just found out I've gone from Stage 4 CCKD to Stage 5  (Read 1077 times)
lrgh
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« on: January 17, 2016, 04:05:52 PM »

Hi,My name is Linda and I am a 53 year old diabetic from Texas.  I seem to be stable at Stage 4 for awhile  but in the last few months I had a minoir heart attach, congestive heart and a big jump in my creatnine levels, soo.....Stage 5. My doctor told me to decide what kind of dialysis I will want so that I can prepare. 
The weird thing is, I feel pretty good....after I was hospitalized with CHF they upped my lasix and got rid of a lot of extra fluid......I've lost over 30 lbs in lass than a month.  I am eating very healthy and don't have much of an appetite for the past few months, so some is actual weight/fat loss....but I think a LOT of it was fluid. So I feel better than I have for months....only to find I have ESRF.
Otherwise, I am an assisteant editor for a trade publication, have a boy friend of over 10 years, and live with my rather obnoxious cat.  I really love music, collect records and have always gone out a lot to see bands.....I took off SXSW week this year but have to wonder if this will be my last festival.....I'm reading everything I can about dialysis but this forum is the only one I've found where people talk about their own experiences.  I hope to learn a lot. I'm trying not to be scared. I have only told a few people so far.

Thank you.
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Rerun
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« Reply #1 on: January 17, 2016, 04:17:11 PM »

Hi Lrgh and welcome to IHD.  The thing with Lasix is... it only works with functioning kidneys.  Once the kidneys shut down to a certain level the kidneys don't get rid of the fluid anymore.  That is where the machine takes over or PD through the Peritoneum.

You are doing the right thing to educate yourself because then it is not so scary.  I am glad you are feeling better.

Welcome - Rerun, Admin.    :welcomesign;

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lrgh
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« Reply #2 on: January 17, 2016, 04:26:07 PM »

i was told i have 14-15 % kidney function. my creatnine is 3.6, up from 2.4.  my doctor said all the fluid i was retaining probably made my creatnine level look better than it really was, and without the fluid the 3.6 reading is more accurate. It was a big shock because it had stayed right around 2.4 for a couple of years.  But yeah, I guess I have some kidney function as the increased lasix has helped a lot. Thanks for being here!
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kickingandscreaming
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« Reply #3 on: January 17, 2016, 05:21:29 PM »

Being scared is totally natural and understandable, but it doesn't help anything.  Best to keep your head on as straight as possible and to explore your options.  You can remain stable for long periods with kidney failure, but then suddenly, the ground can come out from under you.  So be ready to know what you want to do next.  I was told that I was at 10-12% three years ago and remained stable at that point and my kidneys just finally crashed this past November and I had a "sudden" fill of fluid (and pneumonia).  That was the first time that happened, and it propelled me into Dialysis Country.  I suspect that your lack of appetite  (a common ESRD symptom) is telling you something. But the 30# of fluid is saying even more.
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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
Michael Murphy
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« Reply #4 on: January 17, 2016, 06:58:02 PM »

Take a deep breath, while I wouldn't say ESRF is good news it is not as bad as it seems.  The most important thing is to find out the types of Dialysis that are available and choose which one is the one you prefer.  Each has pluses and minuses.  Once you choose take a tour of the facility you are going to use.  Learn as much as you can before you have to start.  My doctor spent 2 years telling me it was time to start, I ignored him, when I had my first symptom I called and started.  My first session was a nightmare. Not because it was that bad because of the fact I had not visited the center and had no idea what I was getting into.  That fear was far worse then the actual experience.  The other thing is I am healthier now then I was before being told I had ESRF,  In addition one of the members here Bob Norham wrote a book "The ABC's of Dialysis". Which I think is must reading about what Dialysis is about. I must warn you he has a sense of humor that is as odd as it is funny but the book lets you know about the journey you are starting.  Good Luck
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lrgh
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« Reply #5 on: January 17, 2016, 07:40:34 PM »

Thanks for the book recommendation,I will definitely look into it. I have a pretty odd sense of humor myself. Touring a facility sounds like a good idea.....I go back to my nephrologist next month, I'll see what he suugests then.
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cassandra
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« Reply #6 on: January 17, 2016, 10:12:25 PM »

Welcome to the site Irgh

    :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
Vt Big Rig
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« Reply #7 on: January 18, 2016, 04:55:25 AM »

First welcome to the site.

Most of all, be apprehensive and questioning but not scared.  It is the hand you have been dealt and play it the best you can. Despite some of the doom and gloom you hear...be thankful there is a process that allows you to live with kidney failure.

And do not give up on your festivals. With planning travel is doable.

Look into all methods, in center, PD and home hemo (which I do). It does usually require a dedicated partner in crime, however. Educate yourself as much as possible. It makes it a lot less scary.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
del
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« Reply #8 on: January 18, 2016, 05:48:15 AM »

 :welcomesign;  Make sure you educate yourself on all the different types of dialysis and choose what is best for you. 
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Don't take your organs to heaven.  Heaven knows we need them here.
Simon Dog
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« Reply #9 on: January 18, 2016, 06:06:59 AM »

You need to take charge of your treatment and remember your doc is there to help you, not make lifestyle decisions for you.

Be sure to fully explore home treatment (both PD and HD).   You may very well decide it's not for you but, if you make that decision, it should not be because the clinic your doc uses doesn't offer that modality.
« Last Edit: January 18, 2016, 11:36:03 AM by Simon Dog » Logged
Charlie B53
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« Reply #10 on: January 18, 2016, 08:56:58 AM »



Welcome to IHD!

You're found the right place to learn, ask questions, and share.  All here have or are facing the very same reality you are.  It is very helpful to be able to learn from others that have been there, and done that.

While your labs are not bad yet, the continued decline  of kidney function may soon be felt a lot more so than you feel right now.

Looking into Dialysis and setting up to begin gives you the big advantage of not having to wait until you totally collapse and wake up in the ER.

I was sick and tired all the time, and I was still at 20% function.  Thankfully my Neph gave me the option to start early, so I did.  Had my cath put in while at 20% and by the time I was down to 18 and sicker than ever, gained another 40 pounds of water, my legs looking like the Pillsbury Dough Boy. NO knees, no ankles.  I started PD.   I lost that 40 pounds of water within the first two weeks, and felt better than I had in years.   Still exhausted, but noticably better.

I don't doubt you will still be able to take your trips, be as active as you are now.  Maybe more.

It is all up to you.

Take Care,

Charlie B53
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Simon Dog
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« Reply #11 on: January 18, 2016, 11:38:10 AM »

Quote
I don't doubt you will still be able to take your trips, be as active as you are now.  Maybe more.
Been on D for 3.5 years; home hemo for 2 years.

I'm writing this from a chair at at clinic in the middle of nowhere, TX (had to drive past a a few randomly placed pumpjacks and down a dirt road to get here), and have two chair times scheduled later in the week in Las Vegas.

So yes, travel is quite possible.
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MooseMom
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« Reply #12 on: January 18, 2016, 01:42:03 PM »

kidneyschool.org

Click onto the learning modules.
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"Empathy is the soul of democracy."  Jeremy Rifkin
lrgh
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« Reply #13 on: January 18, 2016, 06:02:52 PM »

Thank you all!  My nephrologist was very adamant that it was my decision, he gave me literature about all of the options and wants me back in a month to make a decision so we can plan. Should I try to make some sort of appointment to see a facility--do they do that?  PD appeals to me because it seems to offer the most independence, I could do it myself, I could possibly still keep my job...the only advantage I see to hemo is you have days off where you don't have to worry about it. The noctural version has some appeal but I live alone so I couldn't really do it at home, and spending nights at a center doesn't sound as good.

kidneyschool.org looks very detailed and helpful
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iolaire
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« Reply #14 on: January 19, 2016, 05:55:10 AM »

Thank you all!  My nephrologist was very adamant that it was my decision, he gave me literature about all of the options and wants me back in a month to make a decision so we can plan. Should I try to make some sort of appointment to see a facility--do they do that?  PD appeals to me because it seems to offer the most independence, I could do it myself, I could possibly still keep my job...

Long before I started dialysis my nephrologist referred me to kidney educator at the DaVita center he is associated with.  Maybe once per quarter the woman held a group class to go over all the dialysis options and talk a bit about the filters on HD and the like.  Because of that I felt I knew my options fairly good.   So I'd guess that you could find a class via a dialysis center or hospital near you, or if its really small they probably could schedule a time to show you around.

Regarding work (and travel) most dialysis options can fit into a working lifestyle as long as your health and energy hold up and as long as your employer offers you some flexibility.  Going into dialysis I thought PD or home HD would be good, but since I received some kidney calls prior to starting D I was happy to wait out the transplant on in Center PD (three years later I'm still waiting).  I find in center HD very "easy," its a nice clean environment and the techs take care of me well.  I don't know if we could every get our home to a point where I felt good doing daily treatments in it. (We are cluttered and have two cats, and neither of us like to clean, its a mad rush to clean once per quarter when our book club meets at our home!)

Traveling on in center HD has gone smoothly.  Via Google I've found centers around the world to receive treatments and they all have been similar to the US but with more staff and a snack plus coffee mid session (they don't give us any food here in the US), all for way less than my insurance pays here in the US.  Generally foreign treatments are in the $250 to $400 range and to date my insurance has covered them and reimbursed me for my payments.  Initially I did the scheduling myself via email, but starting last year I've leaned on the DaVita (dialysis company) travel coordinator to help.
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I travel with my wife as a hobby and am on Dialysis, recent trips include Brussels.  We return to South Africa (Cape Town) in November 2016. I've also visited a few other US DaVita centers and have had good experiences.

I still owe a write-up for Montreal for October 2016.
lrgh
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« Reply #15 on: January 19, 2016, 06:49:40 PM »

That might be an issue.....I'm not exactly Martha Stewart myself, and I do have a cat.  I understand the importance for having a claen dry area--but how much clean/dry space do I have to allot?
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Charlie B53
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« Reply #16 on: January 19, 2016, 07:55:29 PM »


Other than the multiple stacks, and more stacks of cardboard boxes of PD solutions that totally line one side of my hallway you only need a small table top.  I use a fishtank table in my bedroom along the short wall between the door and closet. An IV pole stands at one end that I hang the second and third bags on.  The first bag rests in the heater atop the Cycler machine.  The rest of the table is cluttered with books in a pile, my laptop atop that pile, and various 'stuff' that I keep near at hand.  The lower shelf I keep the case of cassette/hoses, a case of Ico, a box of extension hoses, and a box of mini caps.

Everything I need for PD all in a pretty small area.   I have pictures on my phone.  One day I'll manage to get this machine to connect to my phone to get those pics and start posting here.  It gives a very clear view of what works for me.

I've never had to do hemo, yet.  Some people it works very well.  Some people have problems with side effects.  Some of those with side effects have become home users doing hemo with the Nxstage machine and have very positive results.  Far less side effects being able to adjust flow rates better suited to their individual needs as well as treatments more than three times each week.

Check the postings in the nXstage forum and you may be able to get a better understanding.  Just as I like my Cycler, many of them like their nXstage.  It can make that much difference.
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Michael Murphy
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« Reply #17 on: January 20, 2016, 05:52:01 AM »

Once  more there is a dialysis patient who took a trip down the Colorado river through the Grand Canyon, Zach posted a link to the picture of this person sitting in a raft with his nxstage.  People on dialysis constantly amaze me with what they accomplish.  Dialysis is not the end of the world, just a different way of life. Keep the faith there is life on dialysis, and it can be a good one.
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iolaire
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« Reply #18 on: January 20, 2016, 06:36:05 AM »

That might be an issue.....I'm not exactly Martha Stewart myself, and I do have a cat.  I understand the importance for having a claen dry area--but how much clean/dry space do I have to allot?
I will say in some other posts I think people have posted that they do home HD in less sterile environments with pets on them during the treatment.  If I knew I was not getting a transplant I'd move to home HD quickly for the health benefits and better odds of a longer life.  Not to mention time gain from moving the treatment from daytime to nighttime and moving the wasted doing nothing during dialysis time to sleep.
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I travel with my wife as a hobby and am on Dialysis, recent trips include Brussels.  We return to South Africa (Cape Town) in November 2016. I've also visited a few other US DaVita centers and have had good experiences.

I still owe a write-up for Montreal for October 2016.
kickingandscreaming
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« Reply #19 on: January 20, 2016, 11:08:04 AM »

Please, everyone, lets differentiate between Manual PD and PD by cycler.  There is a world of difference in how much/little of your life each eats up.  With the manual, you need to interrupt (and I mean interrupt) your life to stop and do an exchange, 4 times/day.  With the cycler (the overnight and automated version of PD) you do it while you sleep and then go about your day.

It used to be that you could be reassured of getting on the cycler in a relatively short time.  Times have changed.  Baxter, the supplier of dialysate for the PD cycler has been in shortage mode for well over a year (too shocking to even go into here) and cyclers are being rationed nationally. 

I started manual PD this week, and will probably be stuck in this method until I throw up my hands and do something else (go in center again, die, etc.).  It takes me a good 2 hours to do each exchange because my drain time takes at least an hour (fill is quick).  And during that long wait, my fluid bag has cooled off from the nice body temp I finally got it to.  So I have to go through all kinds of mickey mousing to wrap the hanging bag in a heating pad to keep it warm while my drain of molasses carries itself out.  So I am either heating up a bag for the next round, re-turning on the heating pad that automatically goes off in a hour, setting up for this exchange, draining (forever), and finally filling.  And then I have to clean up and shclep all the refuse I have just created to the dump. And then, only then can I go about my business with what's left of me and the hours in the day  And then I get to start ALL over again.  I feel like a hamster on a wheel with no end to it. 

This feels like the most colossal waste of life.  If this is the life that's being preserved, it's not much of a life anymore.  I never thought I would look longingly at life in center, but I find myself doing just that.  At least it's finite whereas this seems to pervade every minute of my life and space.  I Hate Dialysis.  In all its myriad forms.  Some one with a very perverse and sadistic idea of life thought up these torture.  Sorry to be so down on this, but that my truth right now.  The nepros all make it sound so easy and are so chipper about what wonderful options they are providing.  Talk about self-delusion. >:(
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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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