I Dont Feel Sick

[BETTY55111]

I am so confused about this PD.   I am going to have the catheter inserted on March 11. My question is,  how did you feel before PD? Were you sick ? Did you feel bad? The only symptoms I have are lab GFR 16. The Dr. says I will need dialysis in 2 months. I only have occasional nausea and a little shortness of breath. Was anyone deathly ill before PD or were you feeling OK.
I am just so scared.
Betty

[jbeany]

It shouldn't make any difference if you are starting PD or hemo - it's your right to choose when you start.  Some people feel fine with much lower GFR's, some feel horrid at much higher.  Don't let them tell you there is an exact number that says you have to start dialysis.  Do what feels right to you. 
As a note of caution, though - your remaining function can drop pretty fast.  I think docs push to have us start earlier because if we wait too long, it's much harder to get adjusted and start feeling healthy again.

[Jenabcd]

Hi Betty,
When my GFR hit 10 last November (still feels like yesterday!), my dr. said it would be a good idea to get the catheter in.  I did that in December, and then he left it up to me, if I wanted to start the dialysis.  I was nauseous most nights, and dragged out a lot, but for the most part, wasn't really "sick".  I did decide to start the PD in January though.  Like jbeany said though, I had read, more than once, where people did wait, and then got sick, and had a hard time feeling better, so that's why I decided to go for it.  It IS a personal decision though.  It's hard to start up, when you don't feel all that bad.  Once, when I told my dr. that I still feel ok, he said "some people compensate".  I didn't really get it at the time, but now that I'm on PD, I DO feel better.  Again, that is just my experience.  I've also read where some have waited till there GFR was 6 - 8, and still felt fine!!  You will make the decision that's best for you.  :-)

[dh514]

With me I told myself that I felt OK, and because I could get up and go to work each day I thought I was fine. My nephrologist tried to get met to start dialysis one year before I did. I was at 5 for almost a year. Within about a week after starting PD I could not believe the difference. I had just felt bad for so long I had forgotten what it was like to feel good. My head cleared up and the nausea stopped.

Other than having a hose hanging out of your stomach PD is not that big of a deal. I am in my sixth month and if you are going to be using the cycler you hopefully will be sleeping thru most of it. It is nerve wracking during training and the first few weeks because you are terrified of peritonitis but it does fall in to a routine after awhile.

Everybody is different, as already stated you will need to do what is right for you.

[kellyt]

I totally understand.  I, too, was fortunate enough to never get "sick".  I transplanted in Nov. and to be honest I feel the same as I did before, although  I have more energy and the stress of starting dialysis is gone.  But otherwise I feel the same.   Good Luck with your procedure on the 11th.   

[KICKSTART]

My doctor said by the time i needed dialysis i would be begging them for it and he was right ..! That was 5 yrs ago , i felt like i was at deaths door at the time !

[peleroja]

You probably don't want to wait until you're at "death's door," as the sicker you are when you start dialysis, the longer it will take for you to get back to some feeling of normal.  It is, however, your choice.

[beachbum]

I'm in the same boat. My GFR is about 10 but I feel ok besides for lack of energy and concentration at times. It really comes in waves. Some days I feel great and other days I feel like crap. But I also know what kidney failure feels like. When I was 8 years old I was so sick I couldn't keep any food down and was sleeping about 20 hours a day. I'm glad I found this post though. I don't really want to wait until I get so sick I can barely move.

[peleroja]

That's just it, Betty, you don't want to be deathly ill before you start.  My friend waited until the last minute and ended up dialyzing for 14 days straight while they took 70 pounds of fluid off her.  The longer you wait, the longer it will take for you to return to some form of normality.  Better to start earlier while you still feel "fine."

[phyl1215]

I started at 12 %.  Mainly because I was so tired, losing appetite, bad taste in my mouth, confusion, etc. I could still function fine but my Neph wanted me to start while I felt decent and able to take the PD classes.  I am glad I did, I feel much better and am holding function at 12 % for over a year now.  I was so afraid to start dialysis but once the cath was put in I felt like a weight had been lifted from me, no more worrying about D anymore.  Good luck and let us know how your doing.

[Stoday]

You can think that as you're OK last month most days, it'll only be a little bit worse next month, so put off starting the big D. Trouble is, you can suddenly get precipitately worse and finish up in ER as I and others have. That is something to be avoided, even at the cost of starting a month early.

[texasstyle]

Now May, you may have started PD. Just wondering how you are doing..

[mykey711]

I just started PD. Before I began I was gradually getting more tired, had trouble sleeping and occasionally nauseous. Now that I've begun, I feel better in general and sleep better. If I could only get rid of drain pain, I'd be back to work.

[Riki]

you get used to the drain pain after a while. sometimes it goes away completely.

I didn't have a choice with started dialysis, because I didn't even know I had kidney disease until I started.  I was an emergency case.  I'm told that what happened to me is rare.  When I went into the ER, the doctors there thought I'd had some sore of brain seizure.  I was in the fetal position, and could not move.  I couldn't open my mouth, so I couldn't speak.  I had a lot of different symptoms that I now know are symptoms of kidney failure,(no appetite, chills, bad taste in my mouth, nausea, vomiting, I always felt dirty, my hands smelled funny, and I was grinding my teeth) but I didn't know what they were then.  The pediatrician who was on that night (I was 12 at the time) had seen what was happening to me before, and did one blood test to check.  My creatnine was at 1600 (not sure what that is in American terms), my calcium was low, and my phosphorus was high, and that's what was causing the locking.  I was given calcium by IV and put on a plane to the nearest children's hospital.  By the time we got there, about a half hour later, I could speak.

When I started dialysis again after my 2 rejected transplants, I went in asap, just so that I would not go through all that again, because it was incredibly scary

[M3Riddler]

I am so confused about this PD.   I am going to have the catheter inserted on March 11. My question is,  how did you feel before PD? Were you sick ? Did you feel bad? The only symptoms I have are lab GFR 16. The Dr. says I will need dialysis in 2 months. I only have occasional nausea and a little shortness of breath. Was anyone deathly ill before PD or were you feeling OK.
I am just so scared.
Betty

Betty,

Everyone is unique and does not necessary feel the same symptoms. Each person can handle kidney failure differently.  This is exactly why they should be treated as an individual but this is not always the case.  If you know you are eventually going to be on dialysis, take the time and learn as much as you can about your condition and why your kidneys failed. Do not rely on a doctor or nurse to tell you. You are your best advocate. Yes you must work as a team with them, but you are also responsible for yourself and to learn as well.
My opinion would be not to wait until you are fully sick. This is only going to make adjusting to dialysis harder on you. Also remember that is is going to take approx 2 weeks for your pd cathetar to heal until you will be able to use it. 

///M3R

[Riki]

I agree with M3Riddler on you knowing when the best time to stat dialysis. but on the other side of the coin, if you have the catheter inserted, don't wait too long to start using it, as it can clog up with whatever material is in your peritoneal cavity already if it's left unused, and then you have to start over again with a new catheter.

[Shona_]

I was down at around 4% and didn't feel sick just tired and stuff.

As others have said, don't leave it too late. And as bad as it may sound, be prepared for stuff to go wrong! I had my first catheter inserted beginning of June which had to be replaced so didn't actually start PD until August. If your doc is estimating 2 months then probably best to go for it now

[Joe]

I didn't feel sick either. In fact, the whole week I was in the hospital the nursing staff couldn't believe I looked and got around as well as I did. My numbers were pretty much all off the charts. I got my cath in and by the time it had healed, it was time to start dialysis. I took a dip in how I felt right about the time I was starting PD, but am back to feeling pretty darn well now.

[catsailor]

I just started Hemo a week ago. My GFR was 9 and I was warned to start before I got too sick. I wasn't really feeling bad at all. A little depressed appetite and some fun with aneamia once in a blue moon. My first experience was absolutely miserable. I got really hot for about five minutes and then FROZE for the next 3 hours. It took over an hour to warm up a little. Then I kept warming up until I had a fever of 102. After getting checked out, I was told that dialysis just weakened me so that a cold feels worse. I am still sick 5 days later with a fever, chills and just miserable. I am just wondering if this will get better or if its going to continue to weaken me to the point that I feel weaker than I was before.

[Traveller1947]

It will get better, catsailor.  Sounds like you've had the flu.  Be good to yourself: bring blankets and chemical hand warmers (the kind skiers use) to your treatment.  Ask the tech or nurse or nephrologist to adjust the temperature on your dialysis machine.  I'm always freezing when I dialyze and often wear hat, mittens and a muffler, in addition to doing the above.  You'll have to order these on-line, since you live in Arizona! . If your center allows it, bring a cup of tea to sip while you're in the chair.  Hope these ideas help you--time will help you most of all...

[Charlie B53]

I started PD very early.  My GFR was only at 20% but I was so sick and tired of being sick and tired all the time.   My legs swelled massively and leaked constantly, often getting infected and landing me in the hospital with raging fevers.

Dr's told me to stop work and stay off my feet, Social Security agreed on the very first application.  I was stuck at home, swollen huge and could barely move for a couple of years before my Neph gave me the option of going on Dialysis.

Within the first two weeks I dropped over 40 pounds of water.  My legs looked and felt almost normal.  If we had done this years ago I swear I would have kept working.   I am so soft now I could never go back to the physical jobs I used to work.

Three years so far, I am NOT sick.  Thinking I need to find something to keep me busy,, a job.  I just don't know what yet.