Risks of not choosing dialysis?

[Percaveli]

Hello all, I am new to the message board and facing a decision whether or not to start dialysis (PD). I am a 29 male with with a GFR of 13 (creatinine is 4.7). I feel decent overall except for the occasional neusea symptoms. I understand the decision is usually based on the individual and how they feel overall but I was wondering would there be any possible risks for prolonging the dialysis? How will that effect my health overall (will new complications develop) Basically, what are the cons to waiting? Is it worth it to wait or just do it?

Thank you all for your time.

[willowtreewren]

I know that the idea of starting dialysis is daunting, frightening even.

But the gradual decline into kidney failure allows you to adjust to feeling worse and worse over time.

When my husband started dialysis he also started to feel better. He said that he actually felt ten years younger.

Aleta

[texasstyle]

 Yes overall health is important, but with that low of a GFR I would have to highly suspect that "bad" things are going on inside you that you're not aware of yet. You probably don't want them hit you when you're very ill.The occassional nasusea will become more and that won't be feeling good overall anymore. Just beingnasuseas/vomitig alone is a sign that things are not right. If you are starting to build up fluid let's say, it's not only your legs but it would filling up the sac around your heart putting too much pressure on it. Big problems can come from that. There is upper extremity edema where you don't even realize your filling with fluid . It's sometimes not justthe legs.That is just one example of what "could be" happening without your knowledge. Of course, your Dr. knows your medical history, I certainly don't. How you feel is part of a descesion. How are your other numbers? I know it must feel like a lot of weight on you to have to take that first step towards dialysis. If you educate yourself, speak with others and learn from their experiences, you can make dialysis productive in giving you the best life possible. And at feeling the best you can too! In the end this up to you of course.

[MooseMom]

For what it is worth, my transplant coordinator (who spent 13 years as a dialysis nurse) told me that I'd KNOW when it was time to start dialysis.  She said I'd be begging for it.

There have been some studies recently that indicate there is no real advantage to starting D earlier rather than later, provided the patient is not suffering from uremic symptoms.  I'll go and try to find a link to some of those studies.  Actually, I think I saw the study on IHD.  I'll go look.

[MooseMom]

YAY!  Found it!

http://ihatedialysis.com/forum/index.php?topic=21172.0

[RichardMEL]

I was part of that study. It was mucho fun.

I was lucky and selected for the "late" start of dialysis under the trial, so I was left to my own devices till GFR 6 when basically the doc said your numbers are bad enough we have to get you on trial or no. Funny thing is I felt "normal" enough but remember that "normal" at that point is based on (usually, anyway) a gradual decline in kidney function over time, and thus the resultant things like tiredness, affects on the brain and other bodily systems are often so gradual that as they occur you become acustomed to them till the point in time that you don't realise how much you've declined because it's not like you wake up one morning and just feel like crap (well it happens, but acute cases are much more rare than chronic). So you may feel "OK" when in reality you're much worse than that. All I really felt at that point was a bit tired at times, but I was working full time, travelling etc doing as much as I could.

That was just me though. Some get to GFR 15 and feel so horrible they do beg to start.

Usually you probably wouldn't *need* to start till around GFR 10, so 13 is low but you're not there yet. I'd argue with the docs that unless you're throwing up, feel really bad and can't function in the way you want to, that there's not an immediate need to begin dialysis.

Numbers, like the GFR, are only part ofthe story, it should also be as much about how you feel and where you're at in your life that should also come into it.

Bottom line in my view - if you feel well enough don't let them push you into it at this point. That at least is what the IDEAL trial supports.

[KarenInWA]

Percaveli, I am in the same boat as you are right now.  My GFR is also 13, my creatinine is a little bit lower at around 4.2, but my neph was ready to put me on D 2 weeks ago.  I said no! Not only do I not have my access yet, but I have no serious symptoms other than tiredness.  I work FT, go out and do things, get hungry and eat, don't feel nauseas, my hands don't shake, and my legs aren't restless!  And I still pee normally, so not much going on in fluid retention (lungs are clear, neph was happy with what he heard with the stethoscope, etc).  I itch on occassion, but my phos levels are normal, and I've been itching for years (which I hate).  My neph thinks I'll end up in the ER needing D.  I have confidence that it won't happen that way, and that I can wait to have my access placed and matured.  I guess pay attention to what your body is telling you.  How often are you nauseas?  That would be a factor for me (ruling out anything else that might cause it otherwise, of course).

KarenInWA

[Stoday]

In March 2010 I was told that I should be starting HD. I was shocked, even though I'd been expecting it for months. Anyway, I didn't feel too ill.

By July I was begging for it.

I think your neph can see the way ahead and is suggesting you start soon so that you avoid a spell in ER at the time you have to start.

[KarenInWA]

In March 2010 I was told that I should be starting HD. I was shocked, even though I'd been expecting it for months. Anyway, I didn't feel too ill.

By July I was begging for it.

I think your neph can see the way ahead and is suggesting you start soon so that you avoid a spell in ER at the time you have to start.

I am taking what he says to heart. I had my vein mapping done, and will be getting the consult for that done this upcoming Thursday.  I will be getting the fistula surgery done in April, barring what they have to say about my veins, of course.  The ultrasound tech said my veins are "borderline" in size, I guess about 2.5 mm.  I also have Reynaud's, which means it'll be placed mid-arm so I don't lose circulation in my fingers.  Fun stuff - not.  I am sure I will be starting D by sometime this summer.  No, I am not looking forward to it, but, it is what I have to do.  If I am lucky and my friend is able to donate to me, I'll just do in-center until transplant.  If she is not able to donate, then I'll do the training to do nxstage at home.  At least, that's my plan for now.

KarenInWA

[MooseMom]

I think I have done everything humanly possible to prepare myself for the transition onto D, but when I imagine actually doing it, I do start to panic.  I've been thinking about it for so long that you'd think it wouldn't bother me, but it is such a life changing event, and I've had too many of those recently; I don't know if I can cope with this, too. 

I am hoping that the reality will be much better than the anticipation.  My husband seems to think that it's gonna be a piece of cake, but he's not gonna know what's hit him.  I don't think I've really come to terms with it all yet.

[Stoday]

  I've been thinking about it for so long that you'd think it wouldn't bother me,

 

When you're finally told "it's time" you'd only be more shocked if the Grim Reaper were to tell you that you are living your last day.

[willowtreewren]

I agree with Stoday.

We had about 15 years to prepare for the final day of dialysis. And when it came.....we went into total denial! 

It was only after he started that we realized that it really was time because he felt so much better! 

[Brightsky69]

When I started PD for the 2nd time I was sick as a dog.

[Percaveli]

Thank you everyone for taking the time to read and reply to my post. I find your comments very helpful! You have given me a lot of good information and experiences that will help me in the decision.

I think the reason my neph recommended I start D was because on my last visit I wasn't feel very well, I vomit right before my appt., my hands/feet were tingling with numbing sensation and my hemo was very low @ 6.9. She made some med adjustment and 3 weeks later, my energy level and hemo was higher and nausea was less severe (still having the tingling issue). I am actually able to do more things around the house now, unless I am kidding myself and this new sense of energy and improvement is false...

Ps. I have Lupus (Lupus Nephritis), does that changes things? Should I be more cautious with my symptoms and start sooner?

[Stoday]

Percaveli, I'm sure you will be joining our club later this year.

Your initiation, calm and gentlemanly, if early; precipitate and fraught if later.

But you will be one of us... 

[onestronglittlelady]

My Neph was telling me for 4 years my transplanted kidney was failing. When my GFR hit 15 he highly suggested I start dialysis. Being the only bread winner in our family, I waited until the last minute. My iron was the reason I finally started. My insurance wouldn't cover the $1000 shot once a month, and iron pills didn't help enough. I was working at a cheese factory surrounded by cement floors and stainless equipment one night. With my low iron I was having trouble breathing, and was about to pass out. I went to the ER and started dialysis 12 hours later. Otherwise I was tired all the time, but didn't have any other problems. You will know when you are ready.

[MooseMom]

When an individual patient should begin dialysis is the $64,000 question.  I've been reading a lot of studies in this regard, and one consistent symptom that you may want to think about is malnourishment.  As toxins build up, you don't feel like eating, and your nutritional status is compromised.   If you are mal/undernourished, your body cannot possibly really recover from much of anything.

Some years ago, my son and I were visiting my mom down in Texas; they are both fans of Luby's cafeterias.  So we had lunch there, and as we stood in the queue to pay, I realized that every other person in the queue was at least over 65 years old.  I overheard the ladies in front of us talk about a mutual friend who was ill.  They were concerned that she was not eating well.  One lady remarked, "As long as you have a good appetite, you'll be OK."  I think that's true.  When I start panicking about how my kidneys are going to collapse tomorrow, if my mind eventuallly wanders to what I'm going to eat for dinner, the panic subsides.

In summary (why use one word when twenty will do!), if you are losing weight, losing your appetite and the thought of food makes you feel ill, I feel you may need to seriously think about starting.  If you are vomiting, this robs your body of nutrients, so again, your nutritional status is weakened.  JMHO.

[KarenInWA]

When an individual patient should begin dialysis is the $64,000 question.  I've been reading a lot of studies in this regard, and one consistent symptom that you may want to think about is malnourishment.  As toxins build up, you don't feel like eating, and your nutritional status is compromised.   If you are mal/undernourished, your body cannot possibly really recover from much of anything.

Some years ago, my son and I were visiting my mom down in Texas; they are both fans of Luby's cafeterias.  So we had lunch there, and as we stood in the queue to pay, I realized that every other person in the queue was at least over 65 years old.  I overheard the ladies in front of us talk about a mutual friend who was ill.  They were concerned that she was not eating well.  One lady remarked, "As long as you have a good appetite, you'll be OK."  I think that's true.  When I start panicking about how my kidneys are going to collapse tomorrow, if my mind eventuallly wanders to what I'm going to eat for dinner, the panic subsides.

In summary (why use one word when twenty will do!), if you are losing weight, losing your appetite and the thought of food makes you feel ill, I feel you may need to seriously think about starting.  If you are vomiting, this robs your body of nutrients, so again, your nutritional status is weakened.  JMHO.

I like this post! I find my mind drifting towards thoughts of my next meal quite a bit, which really, is nothing new for me.  I get hungry, I enjoy eating, and I'm not nauseaus afterwards (thank god for no food poisoning!).  My appetite is not as big as it used to be, but I used to eat a LOT (well, a lot for a woman my size. Probably not a lot for a football player, lol).  Now I'm a little bit older and only sometimes experience a "ravishing" appetite.  It all depends on how much I eat in a day, I guess.  If I'm a light eater during the first half, then I'm going to eat a big dinner.  No different from if I had healthy kidneys, I suppose.  The kidney diet has always been a thorn in my side, and I have not followed it to the letter.  Not being able to eat what I want or crave depresses me.  I am trying to be better at that.  It is a struggle! What can I say, I like food!

KarenInWA

[MooseMom]

I do find that my appetite is changing.  I don't eat as much as I used to, either, at least not in one go.  I tend to have healthy snacks during the day if my energy is flagging.  It used to be that if I was really hungry, I'd get really bitchy.  Now, I tend to feel a bit nauseous (which scares me because that's PROOF that my kidneys are imploding this very moment) if my tummy is too empty.  A little cracker or something makes me feel much better.  I can still hoover through a plate of pasta with the best of them!

PS...as long as you can still say, "I like food!", I'd think twice about starting D.  Just my opinion, though.

[Jean]

I agree with what everyone else has said, however I dont think you mention what type of D you are going to do. If you are going to do HD, then I would recommend getting your fistula put in now, so it can mature. And decide if you are going to do buttonholes at the same time. That way you would be prepared at least. If you are going to do PD, I dont know how long it takes to mature, but I am certain that some one else here will know.

[billmoria]

The months and days prior to dialysis were the WORST for me. Like most people I knew for ten years it was coming. I did not think about it much which I think was a blessing. However, I REALLY WISH I HAD STARTED earlier. Just my opinion, but I felt better almost immediately after starting.
I guess it is a personal thing.

[kristina]

Hello, Percaveli,
my case may be completely different from yours
and you are right that everybody has to be looked at individually.
This is extremely important.

When I reached the point of a kidney-function of around 16-18%,
before ( ! ! !)  the signs of nausea, water-retention etc.,
I focussed totally upon my (vegetarian) diet more urgently and very properly.
I have a private blood-test every month, so I can fine-tune things if I need to.

As I say, my case may be different, but I seem to have things controlled
at a kidney-function of 10-12% and I do not suffer from nausea, water-retention etc.

I know I am sitting on the fence at this point, wondering what will happen,
but I feel ok and so I try to carry on adhering to my strict diet and hoping
that I can prolong the point of which I might have to go on Dialysis
when such terrible symptoms occur.

My kidneys have stayed at this level (10-12%) for over two years now without Dialysis
and so I see no reason not to continue with my current strict (very boring)  programme
to prolong the point of needing Dialysis.

There are many kidney diseases and they affect people in different ways
And one just has to ultimately make a judgement oneself.

I wish you the best of luck.

I know how very hard it is.

Best wishes from Kristina.

P.S. I also suffer from Lupus/SLE/MCTD/chron. proliferative glomerulonephritis/hypertension etc.

[Stoday]

PS...as long as you can still say, "I like food!", I'd think twice about starting D.  Just my opinion, though.

I'd agree with that MM.

For at least a year before I started D I had no appetite whatsoever. Quite often I'd get up in the morning, start reading the newspaper and forget to eat breakfast. Some days I've forgotten to eat anything at all, and just drunk coffee or milk.

Now I dialyse, hunger won't let me ever forget. 

[Percaveli]

I originally posted this message on March 25, on April 14th I had my PD surgery. And this week I started training on dialysis. This just goes to show how fast your GFR can drop. I thought I could possibly postpone it another 3 months or so but it came must quicker than I thought.

[KarenInWA]

I originally posted this message on March 25, on April 14th I had my PD surgery. And this week I started training on dialysis. This just goes to show how fast your GFR can drop. I thought I could possibly postpone it another 3 months or so but it came must quicker than I thought.

I know what you're going through.  I had a gfr of 13 in March.  Come April, it was down to 8.  Then it was 6.  Now I'm on D.  That all happend *A LOT* quicker than I ever imagined it would happen.  But, when I stop and think about it, it really is no surprise at all. Hang in there.

KarenInWA