dont know what to do

[RichardMEL]

Thanks for saying I was right Zach - I like to be backed up by such an esteemed authority on the topic!!! I also totally agree re protein since you lose so much via HD. I usually come off and get a chickenburger or something to make up for it!

t is just when I was on hemo for a short time, I lost soo much weight because there was so much I was not allowed to eat. After having a summer of 90 degree weather, I just cant see not being able to have the basic essential of water!

Yesm and when it's 90 degrees you sweat more, thus you can take more in. No, you can't drink a bathtub full of ice water, that's true, but you can definitely drink more to compensate for the heat.

I have found during our summers, as we can get temps in the 90's and 100's here, that doing things like getting a slushie type "drink" helps a lot - it's less fluid volume(more ice) but can be refreshing to suck around in your mouth etc.

Regarding losing so much weight "because there was so much I was not allowed to eat" - was that dieticians saying you can't eat heaps of things or you putting too much pressure on yourself thinking you just can't have all this stuff because it has potassium or phos or whatever?

As I wrote earlier you just can't avoid these foods, but doing it intelligently is the key. Like above when I said I get that chicken burger - I just order it without tomato, and sometimes without cheese. If I'm out somewhere and there's an option of food with fries or some other potato, I go for the smallest serve, or just don't eat it. Don't put salt on anything etc. There are heaps of little things you can do that all add up. So far my labs are all pretty good, I've never been that much out of whack (the highest my K has been is 5.2 and my phos is always within the acceptable range or VERY slightly outside it). Taking binders religiously is also very important and being aware, at least generally, of what foods are higher in what is a big help (I keep forgetting that potato is a big source of K!).

In a way these things are all second nature to me - as in I don't actually think about it too much - it's just the way I live. So from that perspective the renal diet is not HORRIBLE for me. I eat pretty well, my weight is consistent and I focus on the things I like to have and can have because of that.

[JasonEb]

I'm a big proponent of "checking out" (so to speak) when the hassle of dialysis becomes a burden...

BUT...

When I was about a year and a half into dialysis (mid-2001, started Feb. 28 2000 when I was 27), I felt much like you're describing.  I was giving serious consideration to buying a quart of orange juice and a baked potato as big as my head when a new tech showed up at my unit.  She had moved back to Oklahoma from Boston.  She intrigued me immensely and, well...this October we will have been together for 9 years (granted, the centers tend to look down on employees dating patients, but she quickly moved to an acute unit).

I honestly say she is the love of my life, and I never would have met her if I hadn't stayed on dialysis, or even started dialysis.  I was able to be there for her this past February when she almost died from a tumor and large cyst that was pushing on her brain stem.  Today she's almost 100% healed (this was her first ever health issue) and I am so happy that I was able to help her in her time of trial.

So I say now that if I could go back in time and stay off of dialysis, if it meant not meeting her, I'd say no.

[lola]

my husband had said if he ever had to go back in-center that would be it!!! Otto lost sooooo much weight and ALWAYS felt like sh@#, well back in April he was told he had to go from Home-hemo back to in-center. I'm not sure who was more upset, but to our surprise this time around things have been better his labs are the best they have been in over a year. Don't get me wrong he still HATES it but going back in-center the second time around was not as bad as the first. Hang in there 

[RichardMEL]

Seems to me the message perhaps should be "never say never" - I'd say that IF/when that situation occurs again (ie: having to go back in center) then you should at least give it a go for a few months and see if it works out any better for you or not. Many factors come into play that I don't think you can say the experience will be just the same for you. I certainly hope not anyway.