Fluid Retention

[jbrock]

Hi everyone!!

I know I don't post often but let me tell ya....I come here DAILY to read all the advice, rants etc. I'm not sure what I would do if I didn't have IHD to come to everyday!!
I know that "starting D is right around the corner for me but what I was wondering is:

if anyone (before starting D) did you have a lot of fluid retention in your legs? Does the fluid go away after D?
 
Mine started back in April when I as first diagnosed with kidney failure due to very high blood pressure. I have been on Amlodipine and have been told that would make my legs swell. My Neph has me on 40mg of Lasix a day but it seems like since my GFR has been creeping lower @ 11 right now and holding. It seems like the fluid has gotten worse. I now get winded easier as well. I seem to be a little more tired now too.

Is this all normal?
My Neph tells me that they judge a lot on how I feel. I still eat just fine....no nausea, no feeling sick etc...
My  creatinine level is still about 3.

My neph also says to me my last visit "Don't be afraid to start D". BUT.....IT DOES!!

How soon did some of you start D?

Joy

[sullidog]

I had to go on emergency d. I was nauziated, and just feeling very sick. If your neph is saying it's time then I'd go for it, it's up to you though and on how you feel. If your labs start getting out of wack, then I'd start.
Troy

[jbrock]

Troy,

Thanks for you input. I so appreciate it. He told me I didn't have to "yet" but that I need to pay real close attention to the way I feel. I am doing that but also going by a lot of what I read. I certainly don't want to reach the point of feeling sick but I also don't want to rush into D....I'm sure NO ONE wants to.

I'm thinking that my days are numbered without D and I have to tell ya...It skeeeeeers me A LOT!!

[MooseMom]

I'm at gfr 15 with creatinine just above 3.  I am certain that I am having some swelling around my eyes, but my husband doesn't see it, so I wonder if I am just paranoid.  I don't think so.  I get tired easily.  I have to pace myself.  But I can live with that.  I have a bit of nausea if I get hungry, so I find that I eat less at main meals but have more frequent snacks; I feel better if I have something in my stomach.

My labs are generally good, no anemia.  I have my fistula ready to go.  I was diagnosed with fsgs almost 20 years ago, so it has been a long road.  I think I will know when I'm ready for D, and I know it is not quite yet.  At my last appt, my neph didn't even mention it.

I don't think you can have an egfr of 11 and feel completely normal.  I suspect that what you are feeling is normal for someone who has an egfr of 11.  The question is how you are living with this on a day to day basis.  If you aren't throwing up all the time and can still lead a relatively "normal" life, then I'd say you still have some time left.

Good question with no universally true answer...

And yes, it is very scary.  Can't put a good spin on that.

[RichardMEL]

Well halloween is coming up, so of course it's a scary time!! Unfortunately there's no treat with this stuff and it can be tricky ti know when to start. I think it's good that your neph is not just going by the numbers but taking how YOU feel into consideration, which is a practical way of looking at things. If you've got CKD I don't think you'll fall in a heap straight away and be rushed off to the ER, but you probably will feel worse and when those symptoms get too much then it's time to start. Now would be the time to do things like get a fistula(if you don't have one yet) and get that to mature so you can start when you need to (unless you're considering PD as an option, but even then it may be wise to get a fistula).

As for the fluid retention and will be go away when you start D? I would say it probably will over a number of treatments sucking that fluid out. Lasix seems like a good treatment right now to try and get as much out as possible.

Sounds like you're in pretty good hands to me. 

[jbrock]

MM- Thank you for your insight. It does make me feel better knowing this is all normal. I know my Neph tells me this and has told me what to look for but it sure is better hearing it from you all.

Richard- What a jewel of inspiration you are!! You are always so positive and I admire you!!! I so appreciate all your post. I enjoy reading what you have to say and you always make me feel better about the road I am facing. Love your humor too....lol   

Thank you both for your input!!!!
Joy

[MooseMom]

The people on IHD really are a blessing...I'm so glad you are posting here, Joy.  We'll all get through this together.  RichardMEL is a valuable resource for us pre-dialysis people because he's pretty much been there and has done that.

[RichardMEL]

I'm even more valuable to single and available ladies!!!! 

 

[kristina]

Hello, jbrock,
 
My medical history is possibly a different one to yours, so what I do, may not suit you,
but I let you know my experience with fluid retention all the same.

I suffer from Lupus/MCTD and my kidneys first failed in 1971 due to
chronic proliferative glomerulonephritis & hypertension,
& subsequently my kidney function recovered to 40-45%
& remained ~stable for many years
due to my taking great care and my vegetarian diet.

And then in 2006 I was diagnosed (again) with ESRF
with 6 months to go until Dialysis.
 
My first reaction was to immediately analyse my diet again
and to modify it further to achieve certain goals.

One of these goals was to balance out my fluid-retention naturally
and I achieved this by accurately measuring the liquid which I need each day
& taking a portion of asparagus each day because asparagus is a natural diuretic
& this along with further modifications to my diet
generally keeps my water-retention naturally under control.

I am now back to my normal weight for my height and build
without any fluid retention.
 
I have no idea whether what I do is right or wrong,
I just go with my instinct & common sense
& hope I can keep my kidneys functioning for as long as possible....

Good luck from Kristina.

P.S. Asparagus contains Potassium and I make sure this fits in with my daily allowance of Potassium...

[Bruno]

The short answer is Yes, the fluid does go away and your breathing problem will disappear. You will also be surprised at very much better you feel. The longer answer is that you have to keep taking the fluid off and you have to keep taking the toxins out of your system and you will need ongoing dialysis for that.

[jbrock]

Thank you all who responded. Much appreciated. I am so happy to hear that D would relieve some of this fluid and shortness of breath.
I am happy to report at this time my Neph has increased my Lasix so that helped tremendously. He says I am still ok to hold off on D so that made me very happy.
I have decided to really work hard on the "stress" of it all and just keep doing what I am doing to keep what function I still have!!

@Richard...your such a cute flirt! 

[RichardMEL]

who me, flirt?! 

I'm glad you've got some more of that fluid off and are able to hold off D for some more time - definitely great news!!!!

I know a way to also sweat out more toxins and fluid... and it doesn't involve saunas! 

[Bruno]

Going back to your original point, I visited my specialist today and he told me that fluid is more likely to collect in your lungs before your ankles which I hadn't realised before and is certainly true in my case...ie I've never carried much on my ankles.

[rsudock]

  I am certain that I am having some swelling around my eyes, but my husband doesn't see it, so I wonder if I am just paranoid.  I don't think so. 

Moosey, even being on dialysis I get swelling around my eyes and my face will get somewhat puffy, especially my 2 days off from dialysis.


Jbrock when you feel winded it's probably because of the fluid collecting around your heart and lungs....this is seriously dangerous as fluid overload can push you into congestive heart failure, since your heart has to work harder to pump blood that has extra fluid volume. Since you are feeling bad it may be time to start dialysis. My brother and I didn't start until our creatinine was around 10, but we were small and petite and didn't have extra fluid on us.

Also I had a liver doc tell me once, "You may need a liver transplant no biggie."  These docs just act so cavalier sometimes with our health! eek!

xo,
R

[Deanne]

My eyes almost always feel puffy. Before I went on lasix, my ankles got uncomfortabley puffy, too, but they're fine now.

I like my neph's attitude. She takes it seriously, but in stride. Her attitude isn't, "OMG! This is the more awful thing ever -- you're gonna die!" Instead, she gives the impression that I'll get a transplant, recover, and be back to work in a month. Guess which one I like better! I think her attitude inspires confidence. If she's confident I can get a transplant and return to my normal life, and I trust her, then I don't feel the need to think my personal lil' sky is falling. I used to think I'd end up dead before I hit retirement age, but now I'm thinking I'll live happily and healthily well into my retirement years.