How do you KNOW when to start dialysis

[Sydnee]

Without the serious symptoms how do you know when the time has come?

I have been through a lot in my life and (at least so far) everything I have felt I can look back and say oh well this isn't as bad as ...
I don't know that I am inclined to say it's time to start even if it is.
We still don't know whether I can do PD or not. I've have several abdominal operations.
Hemo will be really hard on me (I have Cerebral palsy) and the only place they found to place a GRAFT is in my uppery dominate (right) arm.   

[MaryD]

I think the time to start is when your lab results start spiking in the wrong direction.  It could also be when you start feeling revolting.  I was happily pottering along with low-grade headaches and low-grade nausea, with the neph and I thinking it might be in 12 months time, when she announced it would be next month.

I have had a Cesarean (in 1976) and and part of my small bowel removed (2009) and I am going well on PD, so it might be OK for you.  Fingers crossed as I really think PD is the way to go.

[jbeany]

Ideally, before the serious symptoms show up and you don't have enough energy reserves to deal with the first month or two. 

The beginning tends to be tougher for most people.  The clinic is trying to find your dry weight, and the only way to do it is to guess a lot.  Plus, you will likely have a lot of long term fluid build up that you aren't even aware of.  (I thought I was just too fat to have ankles anymore.  Turns out it was fluid, and so much that for the first month, it felt like the skin on my legs was loose every time I got off the machine.)  Getting fluid off is not a fast process, so they will push and push at the beginning, trying to drain increasing amounts each session.  It's a rough process, and you aren't yet familiar with your personal reactions to rapid blood pressure drops, so it's harder to realize when things are going wrong so you can alert the staff.  Leaving the clinic too wiped out to function is pretty normal at the beginning. 

It does get better, but if you wait until the very last second to start, you are going to be even worse off.

[okarol]

I think Jenna started too late last time. She was losing weight, no appetite, throwing up and sleeping a lot. She didn't complain and seemed to adapt to each slide downward. When her creatinine went from 6 to 10 in 2 days she was started on emergency dialysis with a chest catheter. (She did not have any fluid retention which was one of the things we had been watching for.) She got a fistula but it failed on her transplant day.
Her transplant is now puttering out and her creatinine is 4.2. She's still walking to appointments but hills are getting hard for her. Her appetite is still good but the taste of meat is odd again, just like her first time. Her sleep pattern has been erratic since dialysis the first time and this has never really improved. She does seem to be sleeping more. No fluid retention.
She will probably get a chest catheter as we are searching for a living donor and hope to have a very short time on dialysis.
It's different for everyone. Good luck to you!

[Sydnee]

Thank you everyone.
I currently have a little bit of nausea but that is it.

I understand how they guess at the dry weight Ed (my husband) started dialysis Jan 2011. He started with hemo and it took them 1 1/2 months to get his weight right at first they had him to low.

My concern with whether or not I can do pd because of the amount and type of operations I've had  in my abdomen. 95' first c-section (baby #1) , 96' incisional hernia repair, 01' second c-section (baby #3) incision opened after stitches removed took 2 months to completely heal, 06' tubal (after baby #4), 06' incisional hernia repair, 10' gallbladder and tumor/ovary removal. 

The incisional hernias are what I'm most concerned with on the up side they never had to repair me with mesh or anything else. Plus the size of my kidneys. 

[okarol]

Jenna had a bladder augmentation using bowel material so she wondered the same thing. The urologist said he could take look with a scope to see if there were any adhesions or scar tissue, and if he thought she could do PD. But she decided she doesn't want it all here at home.

[Mr Pink]

I knew when it was time. I'd been at 13% eGFR for several months, but with the onset of leg cramps every night, attacks of gout, and finally vomitting in the morning, I knew it was time. When I checked myself into my hospital, I knew that I wasn't coming out until I'd started dialysis. Those last few weeks are truly awful, but once dialysis started, I noticed an immediate improvement, and with every treatment, I could see that I was feeling better and better. If you're near the end, I hope it goes quickly, because the last bit of the downhill run is by far the worst part about this whole deal. When you start dialysis, you'll feel so much better. Good luck with what ever form of dialysis you chose to do.   

[Angiepkd]

I was at 13% function at my last neph visit, not having terrible symptoms, but noticing I was slowing down a little. I was hoping to wait until I was below 10% to start, but my doc thought otherwise. I am scheduled to start March 4th. When I got home from that visit I was so disappointed. However, for the last week I have been feeling steadily worse. Nausea, insomnia, muscle cramps and very tired (I slept 13 hours yesterday). Now I am hoping I can hold on till march 4th.  I am very fortunate that I am not working right now and my kids are grown. I don't know how you do it with kids and a husband on D! Praying you get to do PD. I have PKD also. PD was never offered as an option for me. Not sure why. I am going to do home hemo with NxStage. All the best to you! You sound like a very strong person!

[Sue]

I have been at 12% function since October 2011 - I had fistula placed in April 2012, function has remained stable since. I have a few symptoms, nausea in the morning, leg cramps at night but I continue to work part-time.
I have had 3 fistulagrams over the past months, the last one yesterday, I was supposed to be having a stent placed but VS couldn't do it cos vein too small , I have to go in again in March when he will fix stenosis by opening up my wrist and doing whatever he needs to do that way. My nephphrologist thinks that I will be able to go to 10% function or less before I need to start dialysis. My blood pressure is high normal, I take no meds for it.

[malaka]

My problem was swelling/weight gain.  Stairs became a problem, as did sleeping well at night.  Loss of energy, too.

Dialysis kicked me in the can at first, but now I feel much better.  Losing 30 pounds of fluid will do that to you!

[Angiepkd]

Wow Malaka! 30 pounds?! I have gained about that much over the last 2 years. I haven't changed my eating habits, and really can't put my finger on what I am doing to gain weight. I have had some extreme bouts of swelling, but it comes and goes. I would like to think some of that gain is fluid. I am having an awful time sleeping as well. Hoping that improves with D.

[Sydnee]

Thank you for insight into when you started.
I'm so reluctant to start with my family history.