I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: OneForTheBirds on January 30, 2016, 07:02:19 AM
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The constant nausea and feeling I have rocks in my stomach (I have PKD, I guess I do have "rocks" in my abdomen" are starting to get to me. I feel as if my head in stuffed in a pillow, my powers of concentration have declined. I sleep a lot and have little energy for anything.
My GFR should hit 10 at the end of May, and 8 at the end of September.
I knew there would come a time when I would look forward to dialysis. This time is now :(
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Good luck OneForTheBirds I hope you'll feel better soon.
Take care, Cas
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I am a big believer in food as medicine and exercise. Have you looked into diet and lifestyle modifications can help ease your symptoms?
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Most of us have fought the good fight to avoid the dreaded d word. But when the symptoms start showing up its time to start. Putting it off after a point becomes a exercise in futility. It ain't great but it's not as bad as it seems. While I wouldn't recommend it as a life style choice it not as bad as I feared it would be. I count 18 hours a week as dialysis time that leaves 150 hours a week for sleep and a life.
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OneFortheBirds, I'm right with you. GFR is 13 although I am feeling a bit better than the symptoms you describe. But that is just today. Really scared about dialysis. Have an appointment for a fistula in March. Hope it's soon enough. Sending good thoughts your way.
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How do you have a gfr "timeline"? Is there an "expected" rate of decline? I recently fell below 15 % and my doctor didn't give me any sense of how long things might take, just said he didn't have a crystal ball, but that I should start exploring my options, make some decisions and plan ahead. I know there are lots of variables and everyone is different...but how did you arrive at those numbers?
I hope it doesn't sound like I am questioning/doubting you, I sincerely would like to know if there is general timeline one can expect things to progress.
In a related question, how early in your, uh, journey, did you start telling people that you will probably be on dialysis/have advanced ckd? I have told a few close friends, no co-workers. Once I'm actually on dialysis I will widen that circle a bit.....if i do pd, can still work and do exchanges at work, obviously it won't be much of a secret, but for now.....
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My advise is not to worry about the numbers, for two years my nephrologist said it was time to start, but I felt great so I waited for a symptom to occur finally one day it did and started the next week. I will also tell you the fear of dialysis is much worse then the reality. If there is any possibility of having to go on visit a center and learn what it's about. I didn't and my first session was a horror story, not because of dialysis but because I was scared spitless. The fears are much worse then the reality.
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Birds, last fall when my PKD started to accelerate, I started to worry about my #'s. After visiting the Mayo clinic and reading about Michael Murphy's experience, I decided that worrying every time that I had blood work done was not going to get me anywhere. It is what it is. I told my neph recently, " don't call me, I'll call you when it's time." He chuckled.
I had my fistula done last week. I'm at 12% right now......I'm on this side of the grass... life is good!
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I have been a member of this forum for some time but have not posted recently.
About low GFR, coincidence I was in to see my internest today for the semi annual checkup. I mentioned to him that I had just browsed through my note book and that I have been in "technical kidney failure" since 2010 a full 6 years. GFR fell to below 20 then and has not recovered. I have been as low as 11 but rock around 12-14 most of the time.
Point is don't dispair. Two of my neurologists, one treating and the other in the Ochsner Hospital Transplant Dept. have mentioned that they think the reason that I am not yet on dialysis is that I have been able to control my Potassium. I get a full renal panel blood test monthly so that I can follow it and the other items. I NEVER exceed the normal range in potassium. Yes the diet is strict but I find it very manageable. My wife and I constantly check potassium on EVERYTHING THAT I EAT. It really is not that hard, sure I miss my Ice Cream and MILK I consumed a LOT of that and have not had a banana in 13 years but again if that is what it takes, and it does, then so be it. I don't eat nearly the amount of cookies, LORNA DOONS, come to mind as I used to as those and water as opposed to milk don't have the same ring!
Speaking of milk, I use RICE DRINK that looks and almost tastes like milk and is low in potassium.
Ice milk, soft serve is lower in potassium than ice cream so I indulge myself one a month or so.
This is my anecdotal evidence that it is possible to stave off the inevitable so don't give up. As the man said "I hate dialysis." I have postponed it this long and dint relish the day that my kidney gives up. By the way, I have lived with one kidney since I was 6 yrs old, there was a congenital defect in that ureter and the kidney ceased functioning. So this one has gone alone all these years, oh, I am 72.
CCC
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I am constantly amazed at how low some of you get before feeling like you need dialysis. By the time I got down to 20% I was so sick and tired of being sick and tired all the time that I told my Neph to sign me up. Get me started. Since I had witnessed how well PD had worked for my Mother it didn't scare me a bit. I started PD end of May 2013. Within a week I lost almost 40 pounds of water. My legs looked about NORMAL, not leaking any longer. First time in YEARS.
I'm down to under 5% now. I swear that without PD that I would have been gone long ago.
I am still tired.
But I am NOT sick.
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The problem seems to be a over reliance on numbers. GFR seems to be a Good predictor of future dialysis but not so much as to starting. I have written about the extra two years I spent avoiding dialysis. However I was not going through any major symptoms and the minor ones were kept in check by diet changes. Because of the numbers I had a fistula installed in 2011 2 years prior to dialysis. Other than that ignored the numbers. Other then diet changes there is not much else you can do. Am I happy on dialysis, yep, do I wish I was not on dialysis, yep. However 18 hours a week isn't a bad trade off for feeling good, and walking on top of the grass in the sunshine. Too many people see only the horrible things about dialysis and ignore the wonders around them. My advise still is to see your doctor, let him or her worry about your numbers, watch your diet, enjoy your life.
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I agree with Michael, numbers are numbers, it is how you feel and are doing. I have been in Stage 5 since 2010 and still at EGFR 11 or there about.
As was said follow the diet NO less.
If your insurance or medi-care will allow do a renal panel monthly in order to keep tabs on the "numbers" but following the diet limiting pot. will keep you in the game.
Someone asked about traveling with low function, we traveled for the past 10 years with the stated low function, travel while you can after dialysis it is a bigger problem.
Once I was accepted to the Transplant list then travel was curtailed due to having to be within striking distance of the transplant hospital.
CCC
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How do you have a gfr "timeline"? Is there an "expected" rate of decline? I recently fell below 15 % and my doctor didn't give me any sense of how long things might take, just said he didn't have a crystal ball, but that I should start exploring my options, make some decisions and plan ahead. I know there are lots of variables and everyone is different...but how did you arrive at those numbers?
I hope it doesn't sound like I am questioning/doubting you, I sincerely would like to know if there is general timeline one can expect things to progress.
In a related question, how early in your, uh, journey, did you start telling people that you will probably be on dialysis/have advanced ckd? I have told a few close friends, no co-workers. Once I'm actually on dialysis I will widen that circle a bit.....if i do pd, can still work and do exchanges at work, obviously it won't be much of a secret, but for now.....
I have PKD and the rate of decline is linear. It's not linear in the early stages, but in the later stages the course is highly predictable.
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CHARLIESC- Yes the diet is strict but I find it very manageable. My wife and I constantly check potassium on EVERYTHING THAT I EAT. It really is not that hard,
I am very impressed! Rarely do I see people who are willing to do what it takes with diet. ( a few here have done well for years because they are vigilant.. and eat foods that protect and sustain them)
Would love to hear more comments from you. :clap;
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I am down to 11 and right now my thirst is pretty much unquenchable, I drink all the time. I am parched immediately after drinking. It's crazy.
And I don't have diabetes or pre-diabetes.
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Try hard candy, spray bottles work too, I prefer a squirt gun just spray in mouth it helps.
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eGFR down to 9.
Blood pressure... under control.
Phosphorus... spiked up to 1.83 (high normal range) 2 months ago but I hunkered down the renal diet and now down 1.44 (a bit higher than mid-range)
Anemia... close to normal, and stable
No vomiting.
Numbers look good but the nausea is bad and the appetite is low. Activities of daily living drain me.
Thus it was decided that I would get the canula insertion in the next few weeks and start PD sometime this summer. My eGFR is falling pretty fast, only so long I can be expected to last feeling so crappy.
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If you're feeling crappy, why not get started sooner? I crashed at 6% and I didn't feel really crappy until pneumonia put me in the hospital and then I crashed. Best not to crash if you can anticipate the right time. I even tried to be prepared early by having a "buried" PD catheter that was supposed to easily be revealed at a moment's notice. Didn't quite work out as the catheter was full of fibrin from non-use while it was buried and waiting. So I still had to start with emergency hemo.
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Time to book the ER, time to heal, time to train... they want to start me on a slow regimen at first.
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This is the right decision. It is time to clear yourself of the toxins that have been building up within. It is still going to take a little time once you get started. What took this long to build up won't be cleared out immediately, a little at a time, but it will soon start to get better.
Let us know how it is progressing.
Take Care,
Charlie B53
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Good luck OneFortheBirds
Love and strength, Cas
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If you are that miserable start now. Even if you want PD eventually it sounds like starting now is a better choice. Temporary hemo until you are ready for PD will at least make you feel better. Starting one treatment does not preclude the other. The one good thing about dialysis is its better than the effects of ESRD.
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My kidney function is falling rapidly and linearly, so it's easy to predict that I will reach eGFR6 by Halloween. If I'm starting PD "ahead" of the optimal time it's only going to be by a couple of months. Why wait for a catastrophe when the course of my decline is so predictable?
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"Optimal time" is when you are feeling crappy. It's not about a number.
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I cannot think of any valid reason why you would NOT want to feel better. Using Dialysis as a method to cleanse the toxins and not have the sickness just makes sense.
Why wait any longer than you have to?
I was tired of being sick and tired, and so swollen my legs leaked and kept getting infected. So I got started as early as my Neph let me. If I had know how much difference it make I might have tried to start PD even earlier. I really made that much difference for me.
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I, on the other hand, had to be dragged into doing D, kicking and screaming. My numbers were bad enough but I continued to feel good until pneumonia crashed me at 6%. Then I had to start sudden PD when in t he hospital. Because i felt decent for so long it was easier to support my denial and resistance to the whole business.
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So I have to ask how you feel now that you are doing dialysis, the same as before or better?
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Actually, I feel no better than I did before I crashed. Because I actually felt OK with the exception of anemia (which I still have). But I assume I would feel a lot worse now that I have crashed if I weren't doing D. If that makes sense. I felt awful just b4 crashing as i was filled with fluid and couldn't breathe. Some of that could have been the pneumonia, but most, I assume, was fluid overload. But in pre-D days I also didn't have the daily drudgery of doing D. And I felt more in control of my life--even if the feeling was illusory.
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Same here K&S... I felt fine overall, even as they were wheeling me in to the ICU. I thought my sudden symptoms were just the flu. And I feel as ok as I ever have... Not fantastic, but not as horrible as some people seem to have it. *shrugs*
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Most of you seem to be so much tougher than I. Maybe it's that Female thing. Being 'Guy' we tend to think that simple being physically strong that we are tough.
More and more I am coming to the realization that simply is not so. Yes, some of us 'Guys' are quite strong physically, but......... when wired up like a stereo and electrically shocked to simulate the muscle convultions and resulting pain, of his Female which has the sensors on her picking up and measuring the contractions of child birth, sending those to the controls of the wiring connected to the 'Guy'. It has been clearly shown 'Guys' are Wimps.
In my case, at 20% my legs leaked almost daily despite the massive water pills. Often leaving huge messy sores which also often got infected, spending up to 12 days in the hospital. The intense tiredness. I asked when/if I could get started on PD. And to see so many of you enddure many of the same symptoms until sometimes well under 10% just amazes me. I don't know how you managed to endure it for so long.
I can understand a bit the attitude that you can't be 'sick' having a lack of say a runny nose,, common symptoms of afflictions we know and expect seasonally. For who would ever suspect that they could have a serious organ failure. Especially some of us at younger ages.
Many with a lack of medical insurance are reluctant to seek treatment, thinking they will get over it soon. Then there are so many that simple refuse to go to the Doctor, plodding on until they absolutely fall in their tracks.
How do we teach people to become more aware of potential problems, and to begin preventative measures earlier? It wouldn't surprise me if many of us missed the opportunity to stall dialysis IF, and that is a Very Big word, IF we had made just a few small changes in our lifestyles, diets, many many years ago. We may not have totally prevented kidney failure, just forestalled it a goodly number of years. Alas, that' is hindsight and cannot help us but to learn to teach our young better than we did.
If they will listen.
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Just for giggles I thought I'd post the link, the youtube list of vids 'Men in Childbirth Simulation'
It's a riot. Us 'Guys' be wimps!
https://www.youtube.com/results?search_query=men+in+childbirth+simulation
Take your pick, there are many of them.
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I don't think it's a matter of being a wimp or not. I certainly don't think of myself as "tough" or immune to pain and discomfort. I think the issue is we're all different. Some older. Some younger. Some more health conscious, some less. Better genes/worse genes, etc. And kidney failure is generally a "silent killer" that you don't know about (unless tested) until there's no turning back.
I have always been very health conscious and for the last 40 years have studied nutrition (on my own) and several health discplines professionally. I have chronic diseases in my family history and did what I could so I wouldn't follow suit. It didn't work, but I tried. I think I have a strong constitution and I have lived a very "clean" life-- no smoking, no drinking, minimal drugs, walking, etc.. I've always eaten a lot of vegetables and have a taste for "healthy" foods (although a bit too much of a taste for all foods). I've always been a foodie and a good cook, so I've eaten very little processed, junk foods (even with a weakness for good pastries). I also have a basic aversion to the medical-industrial complex (I grew up with a father and brother who were arrogant doctors) so I have always tended to the more natural healing routes.
The fact of the matter was that I had no bothersome symptoms of CKD--never lost my appetite, no nausea, no swelling. I remember when I met my surgical team for the PD catheter I could see them looking at my numbers and looking at me and having it no compute. Here I was a person with 6% kidney function looking and acting pretty healthy and strong. Actually the whole process has been somewhat surreal for me as clearly i'm very sick. But I didn't feel that way. That's why every cell of my body was kicking and screaming and saying "NO! I don't need no stinking dialysis!"
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I am meeting with the transplant team tomorrow for a half day information session.
Lately I've developped insomnia. I got to sleept at 2-3 AM, then wake up around 5:30 with a bit of restless legs, but mainly some weird non-vomiting nausea that makes me not care if it killed me right there, because it would take me out of my misery. I get up for an hour, do a few things, feel better and go back to sleep until 10. I used to sleep like a baby and fall asleep before my head even hit the pillow.
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PD cath installation on July 15!
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You're doing great, OneForTheBirds! Glad you have a date set.
I've been hanging out in Stage 5 waiting for my arm to heal up and start hemo. Lots of rest and sticking VERY carefully to the renal diet has been so helpful for battling nausea (do you get the dry heaving thing when you try to brush your teeth? awful!) and the worst of the symptoms.
Hang in there!
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Oh yes, choking on the toothbrush! I am using cheap regular REACH toothbrushes and it has helped. What is your GFR and what symptoms do you have?
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My GFR is 6.
No swelling or itching, but feeling mighty run down and with zero attention span. I sleep a ton, maybe 3-4 hours at a time. Walking up stairs leaves me gasping for breath! It's been hot where I live and the heat just zaps me. Nausea level is mostly manageable so long as I am eating very gently. But the toothbrush -- oh, man. I have to wait each time until nausea has completely passed so I can get through it without dry-heaving (or worse)!!
:puke; (Haha)
I'm starting hemo this month and even though I'm a little nervous about it, one of the things I am looking forward to is vigorous toothbrushing at any time of day without steeling myself! Small blessings... :)
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I got my PD catheter installed this week.
My eGFR is 8, and predicted to be 6 by end of October. It's falling in a straight line, very predictable.
Deciding when to start dialysis is more art than science I think. Most of my numbers are good except eGFR.
I figure, by the time I am healed and trained for PD, it'll be late August so at most I'll have started two months "early" - and I feel better about getting an operation while I'm not half-dead and severely uremic.
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One for the birds, it sounds like you're starting dialysis at just the right time, good luck.
My eGFR numbers are not at all linear.
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My kidney function is falling rapidly and linearly, so it's easy to predict that I will reach eGFR6 by Halloween. If I'm starting PD "ahead" of the optimal time it's only going to be by a couple of months. Why wait for a catastrophe when the course of my decline is so predictable?
If you are going the PD route, an early start may give you a bit longer time with some residual function.
I feel better about getting an operation while I'm not half-dead and severely uremic.
Plus you can avoid an emergency groin line or chest cath.
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Avoiding dialysis is a good thing for a while but avoiding it after the symptoms begin to make you miserable is not the best option. I firmly believe in trying to avoid dialysis as long as you feel good. I again feel dialysis sucks but it's better then living with the symptoms of ESRD. Dialysis is a tough start but quite quickly it becomes a chore. For 45 years I went to work 5 days a week, it was the price of having enough money to enjoy the non work time. Now I go to dialysis 3 days a week and it's the price I pay to have the 4 non dialysis days.
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It really sucks that we don't have the normal luxury of 7 days of freedom and well being-- and not be rationed to 4 or fewer. It IS a "chore." Something you have to do to stay alive. It's boring, and endless and kind of rote. I guess we all were dealt a lousy hand. Not whining, really. It's just that every once in a while it hits me.
'
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Two things I bring enough toys to fill the 4.5 hour session, if I am bored since I start at 6 AM I sleep. With my iPad I have books, movies, tv shows, Internet, I keep occupied. Plus since I am on Social Security Disability It seems like I am being paid to be there.I used to become depressed by the never ending dialysis sessions. I now don't worry about that since I deal a week at a time. Every Friday I celebrate no more dialysis this week. Next week is next weeks problem.
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I am doing PD, first treatment on Monday!
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Good luck OftB
:flower;
Love, luck and strength, Cas
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Wishing you a good session on Monday!
(BTW, I was on hemo and the nausea for toothbrushing etc. stopped within my first two sessions, which was wonnnnderful! Wishing you the same luck and relief!)
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Hope your first PD session went well. Just had my appointment with the PD team today, so I'm interested to hear how you got on.
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Make sure you clean the insertion site everyday. PD worked for me for about 2 years before my tx.
Take care.