Thoughts on making the decision

[jambo101]

 At the moment i'm pre dialysis with 13% remaining kidney function,,nephrologist says dialysis is inevitable,had the fistula graft and the day is fast approaching when i'll have to make the decision to start dialysis, having some real problems with making that decision as it will be life changing and once taken theres no going back,it will be 4-5 hours a day 3 days a week hooked up to a dialysis machine for the rest of my life : Any words of advice or experiences would be appreciated
thanks

[kristina]

Hello jambo and welcome to IHD
When I had to approach dialysis-treatments I almost left it to the very last minute with a ~ 5% kidney function and my hesitation necessitated the slow recuperation of my body, which almost took one year of dialysis-treatments, until my body had recovered enough for me to be put on the transplant-waiting-list...
The reason why I waited to long was my chronic optimism and my hope that my kidneys would perhaps recover some more function again, as they did in the early 1970's after my first kidney failure with coma, but this time I was not so lucky and dialysis was urgently needed.
Nevertheless, with a kidney-friendly diet my "two little fighters" are still functioning a little bit every day and I am very grateful about it ...
The most important point for me during dialysis-treatments is, that I always read through an interesting book the first two hours and the second two hours I watch on youtube an interesting film, i.e. documentary, but I have also started to watch films in different languages & try to recuperate my "old", almost forgotten languages through interesting films in those languages ... That is great fun and it also keeps those "grey-cells" as much alive as is possible ...
Best good-luck-wishes from Kristina.

[iolaire]

the day is fast approaching when i'll have to make the decision to start dialysis, having some real problems with making that decision as it will be life changing and once taken theres no going back

Many of us were told by our nephrologists that we will know when its time to start dialysis.  I agree with that.  Its less about making the decision but making sure you are aware of what to look for side effects wise and have some way to know how to tell when the side effects are getting bad and you should start.  At some point your legs will start to feel off, maybe making it hard to sleep, you will be more fatigued that normal, you might start retaining liquid and having swelling etc..  So once life starts sucking pre-dialysis that's the time to start transitioning to dialysis before it gets too bad and you end up in the hospital.  The good news is if life sort of sucks pre-dialysis is likely after a week or two of dialysis you may feel better than your most recent pre dialysis days...

[kickingandscreaming]

I would also like to suggest that you consider other forms of dialysis, e.g. peritoneal dialysis (PD)  which is easier on the body and, I think, on the lifestyle.  Nephrologists tend to corral people into the Hemodialysis camp and "forget" to mention that PD exists, let alone is better in many Aways.  Check it out.

I agree with Iolaire's suggestion to be savvy about the symptoms so you can begin BEFORE you have a crisis that forces you to begin.  Some stubborn people (like yours truly) push their limits and end up in the hospital and are abruptly forced into dialysis.  Try not to let that happen.

[jambo101]

 My symptoms are major water retention,no energy at all feeling like im totally out of gas,endless ringing in the ears as well as ears seemingly full of water.major skin irritations along with maddening itchiness.At this point i feel like crap all the time,if 3 days a week on dialysis will improve the other 4 days i guess its going to be a worth while course of action.
 as time goes on i'll look into the peritoneal dialysis but at this point the thought of sticking a long tube in my gut doesnt sound appealing.

[kickingandscreaming]

Your symptoms suggest that you are already in need of dialysis.  It's a progressive disease, and things will only get worse without the help that dialysis gives you.

I guess when it comes to comparing a "tube in my gut" to 2 needles the size of locomotives puncturing my arm every other day sounds a lot worse.  Each to his/her own.

[jambo101]

How often and how long does the peritoneal dialysis process take ?

[Charlie B53]

I gave in and started far earlier than most.  My kidneys were still at about 20% function, but my  legs had been swelling and LEAKING tremendously every day.  The sites of the leaks would often become infected aas working on boats I would often have to get into the water (warm)(dirty). Many of the infections I dealt with myself but there were a few times it got bad and I would end up in the hospital for 12 days. 

Dr's kept telling me I had to quit work, get off my feet.  As if that was going to happen. I've got a house payment, etc.  I told the Dr's if they wanted me to medically retire then they had better spell it out completely, document, document, document, Everything.  Evidently they did.  SS Approved me.

Talking with my Neph about eventual Dialysis I asked if it would stop the leg swelling and leaking.  He told me it would.  Then sign me up.  I did PD my first 3 1/2 years.  Within my first month my legs shrunk to what I think is perfectly normal.  Haven't leaked since.

PD is neat, simple, but you have to pay strict attention to detail as it is far too easy to 'touch' any one of the connectors and give yourself a terrible infection that tries to kill you.  Ask me how I know.

The infection caused me to have my PD Cath removed and I started Hemo 3 times a week.

All in all, I shuld have been dead just over 5 years ago.  I'll be O.K.  I'm not sick.  Still tired but that is about par for the course.  I still get things done, just not so fast.

Take Care,

Charlie B53

[kickingandscreaming]

How often and how long does the peritoneal dialysis process take ?

For most people, including me, we do PD every day.  That's one of the reasons that it is so effective and so easy on all the other organs, etc.  You get cleaned out every day so there isn't the build up that comes with 3 times/wk Hemodialysis.  For the same reason, the diet and fluid consumption is much more liberal.

PD has 2 forms: manual and cycler.  Most people start by learning and doing manual treatments. This is where you Fill>Dwell>Drain (an exchange) with liquid dialysate repeatedly during the day.  I personally couldn't wait to be done with that stage.

The second form uses a cycler:  a machine that fills, halts, and drains you for multiple exchanges at night while you sleep.  What the actual program looks like varies a lot from person to person.    I have a "fast" peritoneum so I can do 6 exchanges on the cycler and I also do one exchange before I hook up for the night.  My fast peritoneum also means that I don't walk around full of fluid all day (as many people do) My program is pretty long.  That's not true for everyone.

The program can be nipped and tucked to accommodate different people's needs.  Infection is always a fear, but if you stay well-focused on what you're doing you won't likely make a mistake.  Or you will catch it before it becomes a problem.

[rcjordan]

Whichever way you go, if you go for home dialysis be prepared for stocking a LOT of supplies.  And boxes & trash.  I can't imagine how urban patients in apartments and smaller spaces cope with it.

I'm on NxStage home hemo 4 times a week for 2.5 hours in the chair. Add another 3 or 4 hours per week for setup, materials handling, system maintenance, etc.

<added>
>started far earlier than most.  My kidneys were still at about 20%

My nephr still holds out hope that my remaining kidney will kick in.  I've been on a late-stage 4 diet for a couple of months prior to the nephrectomy and told him if I didn't get enough function return to get a decent diet with modest amounts of protein, I might opt to stay on HHD. It'd be a hard choice.

[iolaire]

I thought I would go on PD when I started dialysis.  However I received a transplant call just before I was in the hospital for internal bleeding from a stomach bug I picked up in Mexico and started HD dialysis via my mature fistula at that hospital.  It felt like I was very close to a transplant, but in reality I was 3.5 years away.  However if I was to do it again I might still do HD, but at a center closer to work (which would require a nephrologist change) to decrease the time I had to commute to dialysis. 

I found afternoon HD fairly easy, you go, they hook you up, you relax, play on the internet, maybe nap, get done, head home, have dinner and then wind down for the night.   With home HD or PD I would have ended up working a full day, had dinner and then needed to deal with all the setup and treatment at night and clean up in the AM.

I guess what I'm saying is as someone who is still working the 5 or so hours for commute, setup and takedown for a 3.5 hour treatment seems a bit easier than the commitment for the home options.  I probably would have felt different if I was not working and was around the house more often.

[lulu836]

^^^^^^What he said^^^^^^

I refused to turn my house into a pseudo dialysis clinic.  Storing all that equipment and solution is very offputting.  Also you have to physically carry a plastic bag full of all dialysis output to the clinic for testing monthly (I think).  I saw a patient drag one in yesterday while I was waiting for treatment.......gross and heavy.  Then there's the empty boxes and various dressings etc., after the treatment.  No, not for me.  I walk into the clinic with my personal comfort items, sit in a recliner where I surf the net or read or watch a movie or watch my individual TV or nap and 3h 15m later I walk out refreshed and go home with most of what I arrived with.

[kickingandscreaming]

It all depends on what's important to you.  If you value independence then doing some form of home dialysis is the way.  If it's important to you to be able to swim anywhere, then do HD (and not PD).  If you want to be kinder to your body then choose PD or home HD.  If you are a big traveler, choose in-center HD.  If you hate needles then choose PD.  I could go on.

In my case, I work at home so I'm here anyway.  I wanted to be close to my dog (now sadly departed) so I chose PD.  I hate needles and hate being stuck (all meaning of "stuck") in a chair for hours on end.  I don't mind managing supplies although it can be a burden.  I don't care if I never travel again or swim again. So PD is good for me.  Your mileage may vary.

[lulu836]

 If it's important to you to be able to swim anywhere, then do HD (and not PD). 

Depends on the location of your access.