When do you know its time to start?

[dkerr]

I got my labs last week.  My creatinine was over 4 and it shows my GFR to be at 12.  When do they say its time to start dialysis?     What are they watching for?  My nephrologist won't give me any set time.  My work is anxious and wanting to know what to expect.  I have no answers for them.

[flip]

If it were me, I'd start pretty soon. It's much easier physically when your numbers are better.

[monrein]

I agree with Flip.  My numbers were better than yours but I felt like crap and was so happy to start feeling better.  My fistula wasn't quite ready so I had a permacath put in and started four days later.

[paris]

I'm at about 15% and creatinine of 3.2 and my neph keeps holding off dialysis. He keeps telling me he won't let it get to an emergency situation and I have help pretty steady for about a year.  But, that is just me.  Someone else could drop from 15 to 7 in a matter of weeks.   I think it is hard for the neph's to give you a definate time.  Have your numbers been dropping at a steady rate?  Hope you can find the answer you need.  The waiting is like sitting on a time bomb, never knowing when it will go off!  Let us know what happens.

[dkerr]

3 months ago my creatinine was in the 3's and my GFR was at 15.  So I am on a steady decline.  I think they are waiting for the fistula to mature.  I guess hoping to hold off for another 6 weeks. I find I get tired very easy.  Lay down to take a nap and wake up hours later.

[flip]

I started early and my fistula was only 6 weeks old. We were able to start with smaller needles and shorter sessions.

[mike22]

I've been wandering the sam time. I was told i need dialysis back in june. My neph says i still have time to think about which dialysis i want to use. My GFr is 14 and my creatinine is in the 5's.

[oleboy]

My labs would bounce back and forth, I told my Neph. when the time came, I could not wait any longer.

[Ang]

it's  usually  time  when  your  continually  feeling  like  crap  with no  energy  and  wanting  to  sleep  all  the  time.

trust  your  gut  instinct  also  thats  a  good  indication,your  labs  also  help


its  usually  a  bit  hit  and  miss  cause  everybodies  different, if  your neph  is  worth  anything  he'll  know  exactly  when  your  time  will  be.

[kellyt]

It really is a personal thing - meaning it's different for everyone apparently.  My labs have been poor for a few months now (GFR 6 and Creatinine was at 8.32 in early Aug. (it's come down a tad since)).  I really am feeling quite good.  Tired, but good.  I've had some pretty good energy lately, as I'm taking EPO shots and OTC iron pills.  My appetite is good (sometimes too good) and I'm not having any nausea, vomiting, dizziness, itchy skin, rashes, etc.  My doctor says he's going to put me on the list for a chair at his nocturnal unit (only one chair available), so my guess is it will be soon.  But when I was first diagnosed in the early 90's he thought I'd be on dialysis in about "7 years".  We managed to push it to 15 years and they are all shocked at how good I look and feel.  I'm enjoying while I can.

I guess my advice would be to be sure to tell your doctor if and when you're feeling bad and if and when you are feeling good.  My nurse seems to think that because I have more "muscle" that may be the reason my body can handle the higher Creatinine level.    I really don't have that much muscle anymore - not like when I was in my 20's.    I really have no idea.  Good Luck to you!!!   

[draven]

For me it was not really about the numbers, when i started feeling nauseas everytime i ate and being unable to breathe after a simple 2 minute walk, i figured it was time to see the Kidney Doc. and sure enough i landed in hospital.

[devon]

For what it's worth, here's my .02 based on my recent experience...

I have a similar experience to some of you posting herein.  I pushed the envelope as far as it would go.  My creatinine had been over 3.0 since 2000 and gradually rising over these many years.

I got an A/V Fistula in March 2008 in anticipation of starting dialysis within a year.

In August, my creatinine was 5.7 and had been between 5.7 and 6.7 in June and July.  The most recent 5.7 gave me some hope that I could continue to postpone but in a meeting with the neph on August 11, he noted that my BUN was consistently in the 100+ range for over a year.  One by-product of that, he said, was possible heart problems if it was allowed to continue.  That was new to me.  He said there was a number of other possible problems, too, that could come from high BUN. 

I started dialysis two weeks ago on August 21.  My first week's labs (after 3 sessions) were all within acceptable ranges including the BUN.  I have labs running again this week and expect them to be the same.

About the work issues... I am back at work this week.  I took last week off since it was my first week in dialysis (outside the hospital).  I might have been able to return to work immediately after the hospitalization but my poor ole 55 year old body doesn't bounce back like it used to!  This morning, although a Tuesday, felt just like the usual Mondays I experienced.  My energy level is good because I got a lot of rest over the weekend but I suspect it's also because my blood isn't full of the toxins I had a couple weeks ago.

My best advice is to start dialysis BEFORE you have to.  If you push too far, it will be on an emergency basis and that won't be the best circumstances.  Do your exercises with the hand-squeezer ball to build up the fistula.  The more mature the fistula the better.

I hope this is helpful.  My thought are with you, DKerr.   I know what you're going through medically as well as at work. 

-Devon

[peleroja]

Don't wait until you are so sick you end up in the hospital and are told, "your kidneys are failing; you need immediate dialysis."  That's what happened to me.  It takes much longer to recover from that kind of diagnosis than if you start while you're still feeling pretty good.

[boxman55]

I came home from dinner on a Friday nite went to bed and started throwing up, this continued all nite, all day Saturday, all nite Saturday and Sunday Morning I was so sick I barely made it to the shower, then got in my car without even putting shoes on, some how drove to the hospital, parked my car and staggered in to emergency. I could hardly talk because my throat was so raw and all I said was "help me" they took me in, put a cath in and I spent 5 days in ICU with dialysis starting the 1st day. Don't wait, it was is not fun...Boxman

[dkerr]

Thanks for all the input.  When I see my doc in 6 weeks, I'm going to ask him to go ahead and start.

[Andy55]

Nephs rely on labs....good Nephs rely on labs and your input on how you feel. Don't discount messages from your body. Don't wait too long to start D. Especially if you are getting the worried look from your boss. Better to leave work on a good note than to be sucking hind teat...if you intend to try and return.....

[RobinM]

Hi Dkerr,

I agree with the above posters, don't wait until you feel awful.  My doctors had me wait until I was overloaded with fluid, I could barely walk, food didn't taste good, and I had trouble recalling the names of normal everyday things.  I remember sitting on the kitchen floor looking at a sponge and thinking, "I know what this is for.  Why can't I remember what it's called".  When I couldn't stop throwing up my husband took me to emergency where I was given a perma cath.  Because I didn't start dialysis earlier, it took me weeks before I recovered.

I really wish that I had started sooner.  Not only for the physical reasons, but also emotionally.  It would have been nice to have been eased into dialysis, to learn all the options before being tossed into it.

Good luck and I wish you well.

Robin

[dkerr]

I called my neph and asked to have my appointment moved up.  I see him on Monday.  Thanks all.

[devon]

Great Dkerr!  Good luck. 

I'm sorry you have to do this but I suspect you'll be better for having done it.

-Devon

[Angelicfury]

If i'm not mistaken my Neph told me 10%. I had 17% function in early June with 4.9 creat. By the end of June I had 11% with 7.7 creat. I got of of surgery around 12 pm for my 1st perm cath and I was in the chair for dialysis by 3 pm.