Started dialysis too soon?

[caitlincake]

Have you ever been concerned that you began dialysis sooner than needed?
I found out about my kidney failure due to an ER visit, which I know is not uncommon. I was pretty sick, had all the symptoms, and dangerously so. They put me on dialysis right away, but I didn't even know what was going on. I understand that they needed to make that call without asking me or telling me what it was (I had no clue what dialysis was at that point), but I was in their for a little over a week and never really had a talk about, this is a choice. I have heard stories of people going to the ER at the stage I was, but only needing dialysis for a few times and then sent home only needing to be aware that their kidneys are failing. I would assume that is because they had more kidney function left than I did, but I don't understand how a person with more kidney function than what I had would end up in the ER with such major symptoms. I'd think anyone who ends up in the ER would be pretty close to 0% kidney function.

I have been on dialysis now for about 2 years, and I am very healthy. I have not had any trouble with my labs or fluid. The most I gain between treatments, even over the weekend, is 2.5kg. They've tried taking off 3 and I always get sick (BP drop, black out, possibly throw up if they cannot give me saline etc to stop it in time). I am not on any phosphorus binders, as I said I have not had any issues with my labs. Sometimes the nurtitionist even comments that I'm better than she is in some of the tested areas (she's very healthy).  It's hard, especially when I know how the patients around me have such trouble, to undertand why I am on dialysis.

They say my kidney function is about 10-12%, but I understand this is not 100% accurate, there can be error.  I did have a biopsy when I was in the hospital after the ER trip, and then I was put on prednisone and chemo for a projected 6 month treatment, but after 4 months they saw no change and stopped it. I am not certain how they new to stop it after those 4 months. I was on dialysis the entire time, no GFR tests were done after that treatment (nor in the hosptial I shoud add- I have never done a GFR test / 24 hour urine measurment), and no additional biopsy was done. How did they know if there was a change for the better or none at all?

I asked a while back if I could do a GFR test but my nephrologist said in order to do that I'd have to stop dialysis (for the test period, I think) and that if I did that I'd end up back in the hospital.

I am the most inactive I have ever been since being in dialysis. I have always been in shape, never overweight.  Because I am not use to being this inactive, and I'm getting older (early 30s), I assume it's only natural that I should gain a bit of weight during this process. How do I know that the weight I gain is not just from being inactive? I seem to aways gain the same amount between treatments, even if I have more or less fluid. I can't help but wonder if they are taking fluid off of me that my body needs (since I always come in at the same weight) or would naturally have filtered out through waste GIVEN THE CHANCE. I urinate a normal amount for what I take in.  Also, because it is the worst feeling to be on dialysis and starving, I always make sure to eat before I come for my 4 hour treatment. I have weighed myself before I eat what I eat before dialysis, and then again after i have eaten, and because I gain so little, even that is a significant amount. There have been times where, if I'd chosen to skip that meal, I would have been able to come to treatment weighing the same weight I'd left at.

I'm just concerned that they jumped the gun in putting me on permanent dialysis. I have had this thought for a while....on top of this, I just learned about a man in my area who was elderly and sick of dialysis..he decided to make the decision to stop and was informed he had 8 days to live. Shortly afterward he went for a doctor visit, a new doctor, and told him what he had decided. The doctor could not believe how long he'd been off and how he was doing fine. He ran some tests and came back telling him, "yeah, you do not need dialysis." They had jumped the gun. I know it can be different with elderly people- I imagine various things can cause, well, various symptoms and illnesses, and perhaps it can be difficult to always pinpoint...but he WAS put on dialysis when he didn't need it.

It stresses me  out, especially because I know dialysis is only encouraging my kidneys to fully give up.

Have any of you been on dialysis when you still have (AT LEAST) 10-12%? Or do any thoughts on what I've said?

[obsidianom]

Actually 10 % is pretty bad. To be honest the rule most nephrologists go by is what are your symptoms. Some people have symptoms at a much different stage than others. Some people can go a lot longer without symptoms while others like my wife need dialysis sooner . The numbers down where you are are really not important as clearly from what you wrote at 10% your kidneys are at the end of the line. Do you know what your creatinine and BUN were when you started?   
You are making a lot of assumptions .  I cant really asnwer without more info. In the end , kidneys rarely get better, they almost always get worse. So why put off the inevitable and suffer just to avoid dialysis . You re doing well so why worry .  You were most likey going to need dialysis anyway from the little info you gave. 
You gain 2.5 kg between treatments which indicate you need dialysis . Otherwise you would probably bloat up in a week or soNormal kidneys dont do that.
Going on dialysis doesnt necessarily mean you will lose what is left of your kidneys. The underlying disease that caused the kidney damage could cause that however. You didnt mention what caused it.
You have the option to stop at any time . No one can force you. That is your choice. It is risky however. If you are really adamant about finding out where you stand you can do it, but be prepared for potential serious problems. It just seems if you feel as good as you say why rock the boat? 

[Angiepkd]

Hi Caitlincake!  When I first started D, I was around 11% function.  My neph's thoughts were that how I felt was more important than the actual numbers. I was having all the symptoms of kidney failure - nausea, vomiting, no energy. I just felt generally lousy.  He also said that in his experience, patients tolerated D better when they weren't deathly ill.  I know that is just one opinion on this, and I have read studies supporting both sides of starting D early or late.  After starting home hemo, I felt so much better that I questioned whether I had started too early.  I second-guessed myself for agreeing to start. Could I have waited a few more months and had less time on D prior to transplant?  Some people here waited until they had much lower function and seemed to do fine.

While I love the story about the elderly man, I would think that is a very rare occurrence!  I used to play out those scenarios in my head. What if I stopped treatment and I didn't die? What if it all turned out to be a mistake? Could I be that one in a million patient who proved everyone wrong? I am not as young as you are, but still felt like 44 was too early for all of this.  My mind told me that it was all very unlikely, but my heart always said "what if"?

I know I read some stories about people who had cut back one day of D.  Maybe that is something to talk to your doctor about? I hope it all works out for you!
 

[jeannea]

The fact that you are tolerating dialysis well does not mean you don't need it. It sounds like you needed to start but you are taking care of yourself. Since you are younger you have fewer other health problems than the older people at dialysis. Why did you need chemo? That's not standard.

Saying you still urinate means you can have a little more to drink but it does not mean that your kidneys are working. It seems counterintuitive. And yes you could wait til your kidneys were worse but your whole body would be in worse shape. Inactive would probably be bedridden.

What bothers me more is that you never had time to ask questions and discuss things, even if it was after you started dialysis. I was in a bit of a daze after I started but I know they tried to talk to me. I hope you have a doc you can ask things now.

[Simon Dog]

As a general rule, PD is started sooner as it preserves residual function, whereas HD is delayed until it is necessary.