Signing In Again

[jhodges58]

Hi:

I posted once before about 18 months ago when my nephrologist had me go in for a fistula.

I was able to avoid dialysis for the past year and a half as my creatine level hovered just below 5, but once it crossed that line I went in and I'm now completing my second week of in-center dialysis.

Still a little overwhelmed. Meeting techs, and dietians and social workers and lpns. They're bouncing back between 17 and 16 gauge needles. I'm up to the target 3-1/2 hours per session but they haven't cranked up the machine (200 blood flow?) and they're only pulling off 3 kilos at a time though they plan to "challenge" me more in the coming week.

I kind of don't know what exactly I should be paying attention to as a new dialysis patient. I'm still working and commuting into New York City from Long Island every day. Had a nasty experience Friday when I couldn't get a seat on the train coming home after about 45 minutes of travel I started getting light headed and tight in the chest. Someone was nice enough to give up a seat and I felt better almost immediately, but it was scary (and this was on an off-day from dialysis).

With everything that's going on around me, what should I be concerning myself during these first weeks and months? I want to be an active participant in my treatment but I really don't want my dialysis to define me as a person or the life i'm trying to lead.

Thanks.

--jon

[Rerun]

Hey Jon, welcome back.  It sounds like you are paying attention and that is good.  Are you comfortable?  Do you get cold?  Can you sleep?

Just keep asking questions and if they don't tell you or you are not comfortable with the answer come here and ask. 

Rerun, Moderator        

[peleroja]

Hi, Jon, and welcome back to the group.  I'd be careful with those "challenges."  Looks like you've already had one bout of lowered blood pressure.  You don't want to be passing out on the train.  If you're not especially fluid overloaded when you go into the center, tell the tech how much you want to take off; don't let them make that decision.  I once had a tech tell me they were taking off 1.5 kg and they took off 3 kg.  I went out shopping and passed out in the store.  Always remember, you are the patient and it's your body.  You have to be able to function. 

[jhodges58]

Yeah, the tech on Saturday thought it was a low blood pressure episode, too. I guess the big issue is we're still trying to figure out my dry weight which is complicated 'cause I'm big, I'm still urinating and the nurse overseeing my treatment feels I've got a lot of fluid in my legs that she'd like to see me get rid of. They want me to start limiting myself to 50 ounces of fluids a day (which I understand is on the high side for most patients) but event getting that level is a lifestyle change for me.

Interesting times. Thanks for the replies.

[YLGuy]

Welcome back.  As a new dialysis patient you will have a number of questions.  I have been on dialysis since March 2009.  I still have a ton of questions.  This IS a good forum to post those questions.  There is a lot of good information here.

[kristina]

Hello, jhodges58,

I would be grateful if you could let me know
if you thought there was anything special
which kept your pre-dialysis-kidneys going
over those 18 months? Like diet or treatment?

I realize that with that level of GFR it is very border-line,
but if you had any feelings about what might have helped you
over this period of time I would very much appreciate your thoughts.

I am still pre-dialysis, GFR 10-12%
and I am struggling to keep at this level.

Kind regards from Kristina.

[jhodges58]

Kristina:

I hovered at 14% GFR for a long time and no one could explain it. They rushed to do the fistula 'cause they thought I'd be needing it a year ago last spring; then they said the summer; then we just went month-to-month for another year. I did try to drive down the potassium and phosphorous levels down by diet change (reducing tomatos, potatos, no chocolate, stopped drinking dark sodas like coke, etc.). They put me on Sensipar and Zemplar pretty early which I think helped. Decided to go for lap band surgery to make me a better candidate for transplant and went on a liquid diet that they encourage to shrink the liver and my creatine level shot up, so much so they called off the lapband and I went off the diet. My level rebounded, but I think I shortened the time I had before needing dialysis.

Hope you hang in there -- for those of us who "linger" with a borderline GFR it's really tough to know when to make the call. You want to go into dialysis strong and not completely run down, but it's a big decision when it comes. Try to understand your labs and make some intelligent targets with your care team so if and when you cross certain targets you'll know it's time.

[kristina]

It is very kind of you to share your experience with us, jhodges58,
it is very noticeable you tried very hard to hang on to the 14% GFR,
I am sorry you could not make it longer.

Again, it looks as though everyone is an individual case
& has to work it out themselves and try as best as they can
to stave-off the day when Dialysis has to commence.

Hope you are doing ok, best wishes from Kristina.