questions, questions

[fuzzyL]

#1Im told I need dialysis, that creotine level at 5--but I feel fine-plenty of energy, no weight loss (I wish)some fluid retention in feet, but not bad and not painful--do I really need it now, can I wait or is it better to start before it gets worse?-one doc  wanted to start me last month-other doc is going month to month but still agrees I will need it--#2 I have radically changed my diey in hopes that it will slow down the need-are there charts to know the safe amount of pottassium and phosperus (pardon bad spelling)one can have per day as it is hard to find foods that doesnt have some in it-#3 I had stomach hernias so doc doesnt want to do PD-which I want to do--is it my choice or his, and can pd be done thru chest or always thru stomach??--Thank yo in advance for any replys

[okarol]

I think it's good to use your lab numbers in conjunction with your symptoms to determine when to start dialysis.
You might want to look at this article, perhaps print it out to discuss with your nephrologist. "Study Warns of Risks for Early Dialysis" http://ihatedialysis.com/forum/index.php?topic=20996.0

[rsudock]

My brother and I went on dialysis when our creatinine was around 8, but the neph always took into consideration how we felt as well. Plus my brother and I are small petite people as well so, we didn't have fluid retention. I'm not sure about the PD question but I couldn't do PD because of some liver issues...eek!


xo,
R

[RichardMEL]

I do not think that the docs would be wanting you to start just because they want to make you miserable - there's obviously good reasons for it. For example I got down to GFR 6 and felt fine when I started (no fluid retention either) but my potassium was going high and some other things were out that diet, binders etc wasn't going to solve - so dialysis it was. I understand TOTALLY you want to put it off, but consider carefully that you might not want to hold off so long that you might get into trouble and wind up in emergency or something with an acute failure problem. I definitely agree that you shouldn't just go on a lab figure to determine when to start, but you also need to take your doctors (and multiple ones at that) advice seriously.

I'm sorry they are suggesting pd is out for you. I don't know enough to make an informed comment about the hernia/pd issue, but I do know that pd is always done in the tummy because it's the adominal cavity that's used for the pd fluid etc.

good luck!

[Riki]

There's a higher risk of hernia if you are on PD, so if you've already had a few, that could be why the doctors would rather you do HD

[fuzzyL]

Thanks !!!! to all for the advice and support--I read that article from okarol-very sobering

[billmoria]

I wish I had started dialysis earlier. I watched as my levels dropped and like you wanted to wait until it was absolutely necessary. The only problem with that decision was that I hit bottom without warning and very quickly. It did not help, in my case, I was on holiday on US and had to fly home to UK. It was a very bad week.
After starting dialysis and beginning to feel better - yep, I felt better on D than the few months leading up to it - I really wished I had started earlier.
I guess it really depends n how you feel.
Good Luck
 

[Riki]

oh yeah.. the earlier you start, the better you feel, and it shouldn't impact your life as much as having to start under emergency circumstances.

[Bruno]

I was in the same position as you...very reluctant to start dialysis but my advice to you would be that you are not going to get better. you will deteriorate further and you will reduce your chances of effective treatment...so bite the bullet, mate.
You won't be able to do PD if you have a stomach hernia (I had one too)...no reputable surgeon will do it so you are going to have to get a fistula in your arm and wait until it matures...2 to 3 months. Then you wlill go on to haemo dialysis.
But cheer up, you'll feel bloody marvellous once you are on HD and get cleaned up (I certainly did) and you'll wonder why you didn't do it all earlier and what all the fuss was about.

[iketchum]

I would assume that with fluid building in your ankles that it is also building around your heart. Heart problems come along with ESRD. I would get the fistula, in the wrist ares if possible, and get it maturing. This is no fun, but getting prepared for dialysis is the smart thing to do. I don't post often, but wanted to butt in this once. Good luck.

[del]

Get your fistula done and be ready!!  If you have had hernias I don't think PD would even be an option for you.  When hubby was predialysis ( he's been on dialysis for 13 years) they wasn't anywhere like this to get advice. Knowing what I know now he should probably have been on dialysis a couple of years before he started.  He was very careful with his diet (still is) and kept most of the levels down I think although we knew nothing back then about his potassium and phos levels!!  He was 'sick" for a couple of years with nausea, itching, no appetite, lack of energy but we didn't realize all those things were caused by kidney failure eventhough we knew he had kidney failure. Get prepared so you are ready when the time comes.  Diet can help with the potassium and phos levels but if your kidneys aren't working the levels are probably still going to be high no matter what you do. Don't let yourself get to the point where you get sick and have to start dialysis then!!!

[PVUgrad]

My husband was going to do PD until the surgeon found out he had abdominal surgery. So that canceled that as he said anytime you are in the belly area, you create scar tissue and the PD just won't work as it should.

Luckily he had his AV fistula put in the end of Sept, and it looks like we are going to have to use it next week. He is starting to feel extremely tired, with GFR at 9 and creat at 7.

Good Luck!

[Bruno]

And I might add that not much fluid around the ankles does not mean you are OK. I never had bad ankles, but it collected in other places you don't notice, your face (you can always tell a pre dialysis person by looking at them) and in my case my back.

[texasstyle]

One thing I was taught here and it made so much sense is that it's not always about the numbers, but your over all health. There's so much involved with kidney disease and dialysis. The diet is VERY important I must stress that. In general, your liver cleans out toxins from things like chemicals etc... but, your kidneys clean out toxins from your FOOD. If your kidneys are functioning properly the "toxins" will build up in your body and not be urinated out. Even if you urinate it can be mostly just water. Don't think of the diet as things you can't have, but open your mind to the excitment of learning about new ways of cooking/eating. My husband does not follow the diet and has bee near death 2 times in the last 3 months from high Potassium. The high phos can lead to bone disease. If you look up renal diet you should come up with severallist of foods which are ok/avoid for a renal patient. In the mean time chocolate, tomatoe, potaotes, and of course bananas are not good for they have such high. Cheese for one is high is phosopous. If you go in with a good attitude you will learn all this and I'm sure you wil apply it correctly. There are so many people with so much information to share here.