swelling and worried

[wvgirl]

It's almost time for my monthly bloodwork. I have never had any swelling problems but last night noticed my ankles weren't there anymore, especially on the left side. I was hoping for it to be magically gone today, but no such luck. 
I am so worried that my gfr has dropped more and it will be time to start dialysis. I have known it was coming and thought I was mentally prepared but today I am not so sure. It can't be time yet, can it?
I also have headaches 3-4 times a week, some nausea, tired even with the epogen and I don't have much of an appetite. I told my nephrologist all that last time, but he didn't say anything about dialysis yet. I am scared with the swelling when I go in a few weeks it will be the day he tells me.

[Rerun]

I know the feeling.  It is like Lord Just take me because I don't want to live like this.  But, you probably need to jump in.  You will feel better with that fluid off you and your headaches are probably from high Blood Pressure. 

Don't panic, wait and see what the doc says but be prepaired and check back in with us and we will help you through your first session.

    

[justme15]

I am in a similar situation as you! Every time I see the doctor I wonder if this will be it... I too developed swelling, nausea, and loss of appetite in Sept/Oct and I thought these were definitely signs that I needed to start dialysis.  However, my doc just prescribed lasix for the swelling, and all the symptoms went away! including the nausea! so just prescribing the lasix bought me some more time off of dialysis.
I'm not sure if you're already taking lasix or not, but maybe this will be your doctor's approach.  whatever happens, I wish you the best.

[wvgirl]

Thank you both! I am actually feeling a bit better today, but still the swelling. I gained 6 lbs over the weekend. I am watching my sodium closer and feeling ready for whatever comes. You gotta do what ya gotta do! Hopefully all I gotta do is take some lasix!

This is so awful! Nobody I know can actually understand what it is like to be waiting. I am afraid to make plans too far in the future for fear I may need dialysis before then. My potassium was 6.7 last time. I am watching my diet and was prescribed 2 sodium bicar per day, but that fear is always there. I just realized could the sodium bicar be causing the swelling?? Anyway, I feel happy and ready for whatever comes one day, then the next I see swellling(or puking, or just tired) and freak out. 

[justme15]

I feel ya girly!! I am afraid to plan vacations and things too far in the future because I have no idea if I'll be feeling well then! I see my doctors about 3-4 times a year, so I plan my life around my appts.  If I go to the doctor and everything is ok, I feel like I am ok to do stuff until my next appt.  It is indeed very frustrating, the waiting.. waiting to get sick. what a life! but it is forcing me to enjoy each day, one day a time, cuz I never know what the next day will bring.
when you mentioned sodium bicarb I immediately thought that might be contributing to your edema. are your blood pressures ok? I have a feeling everything will be ok for you when you see the doctor, I don't know, I just have a good feeling. 

[mamagemini]

I am so with you! My kids are planning things and I just don't know if I will be okay to do all these things. I am planning them regardless but I feel guilty knowing that I may not make it.
I hope that it all goes good for the rest of this year, the next year and so on!!!   

[AguynamedKim]

I am watching my diet and was prescribed 2 sodium bicar per day, but that fear is always there. I just realized could the sodium bicar be causing the swelling??

I assume the sodium bicarbonate is being prescribed to help neutralize metabolic acidosis - something that can be useful in slowing the progression of CKD in patients with the condition.  Unfortunately, it does result in introducing sodium into your body which can cause swelling (as it may be more difficult for your kidneys to expell excess sodium which causes it to build up).  I'm not sure of your dosage so not sure what the result is as far as an increase in sodium.  Is it actually a prescription or is it something you can buy over the counter?  I'm asking because I've recently started researching this aspect of pre-dialysis and wonder if I should get tested for metabolic acidosis myself.  I personally aim for less than 1000 mg of sodium per day and often hit less than 500 mg.  It was very hard to do at first until I realized there's almost no prepared foods I can eat.

[billybags]

Hope your blood works are OK next time. it is awful wondering when the time will come to go on D. Have a good talk with your neph./ Ours liked to put his patients on whilst they still felt well, if you know what I mean, he says you take to it better. Good luck with it.

[wvgirl]

Just looked at the bottle, it is a prescription for sdium bicarbonate 650 mg 2 times a day. My potassium keeps going up even though I haven't had any of my favorite foods in months.

I know this is bad of me, but because I had no problems with swelling, I watched the sodium, but not as well as I should have. I have been working so hard on the potassium and phosphorous but admit to too much salt. How wonderful, another thing to not eat. Also, I was visiting my parents for the weekend and ate out a few times. I followed the diet pretty well, but I know it was probably way too much salt in it.

I have never had bp problems except when I was pregnant. Even now it is great.

[MooseMom]

  wvgirl and justme15 and mamagemini.  I've been playing this waiting game for more than 7 years now, and it doesn't get any easier, at least it hasn't for me.  The future just looks so very bleak.  It's soul destroying, it really is.

As for sodium bicarb, several years ago, my labs came back showing K at 6.0, and I got a panicked phone call from the neph's nurse.  She spent the day conferring with my neph, who decided to start me on sodium bicarb tablet.  It did the trick, but my K has steadily been climbing ever so slightly, and so my sod bicarb has been increased to the point where I am taking 12 tablets a day.  There must be a link between acidosis and potassium because sod bicarb is indicated for one if the other is present.  This is assuming that hyperkaliemia is mild, ie, still below 6.

If anyone has more information about a true link between acidosis and elevated serum potassium, I'd love to hear it.  My neph has never used the word "acidosis" in any conversation I've had with him, so I am not entirely sure how sodium bicarb brings down potassium.  All I know is that 12 of these tablets a day is no fun.  Every 3 months, I get 1000 of these damn things through the mail!

[justme15]

a search on google scholar showed that metabolic acidosis  is usually accompanied by elevated serum potassium.  Sodium bicarbonate is used as a treatment because it is a base, and will help to neutralize the acidity of the blood.

[fearless]

i don't think they are related except for the fact that as the kidneys fail, everything goes wrong.  The body becomes acidic (treated somewhat with sodium bicarb), and also doesn't get rid of enough potassium.  I'm thinking it may be possible that the sodium, by causing the body to retain water, may also prevent the kidneys from excreting excess potassium.  (not sure if it works that way, but that is my best guess)

[Dannyboy]

Just some words of encouragement from someone who has recently "been there, done that".     Like others here, prior to Dialysis I had issues with fluid retention big-time....yeah I watched as my ankles especially got puffy, some days better than others.   Sometimes very hard to put on boots.   Big ugly 'indentations' above where the top of my socks were, like a 'notch'.   Swelling in other places but mostly noticed in legs and ankles.

The meds my neph prescribed helped somewhat, but it was still very disconcerting.  Sounds like you are doing all the right things (taking the prescribed meds, and watching your diet closely).  That's good.  That will minimize.

Sure, it's a PIA now to have to deal with such issues.    For me this "stage" of CKD lasted about 2 years or so.   As I'm sure you are well aware, most/all of us have found that being on Dialysis is way more of a PIA, even though the swelling problems (at least for me), went away immediately with the start of Dialysis.

Hang in there.  Lots around here have experienced same/similar and have an idea about how you're feeling about it.

---Dan
 

[Riverwhispering]

My Neph doc has me taking 1/4 tsp of baking soda a day.  I forget why he has me taking it but I'm not retaining fluid from it. 

[malaka]

Before I started dialysis on January 13, I was chronically swollen.  Increasing doses of lasix helped a little, but the swelling would return to the point where my knees, ankles and hips were painful.  I had "nephrotic syndrome". 

How swollen was I? In the first month of dialysis, I lost 30 pounds!  All water, I am quite sure. 

Benefit?  My clothes fit again. 

Would I trade dialysis for how swollen I was?  No. 

[sullidog]

When I started, I wasn't swollen but man I felt awful

[wvgirl]

I got my labs done, got my results but have been too worried about my 16 yr old daughter to think about them yet. She has been in the hospital since yesterday and will stay till at least Sunday with pneumonia. It's strange how all my worries about myself have been gone completely. I have been sitting in the hospital with her. She is still very sick, but is feeling better.   
Anyway, my gfr dropped to 9.5, creatinine up from 4.4-4.9., calcium and sodium low, but not too bad. I was happy to see phos. and potassium were high normal.
I know my dialysis days are near, but I gotta get my girl better first!

[MooseMom]

Oh, I hope your daughter is back home soon!  That's not the best way to take your mind off of your own renal worries, though.

[billybags]

wvgirl, Hope your daughter gets well soon. Pneumonia  is not good.

[wvgirl]

She was feeling a bit better today. I spent the day with her again. It is starting to wear me down. The swelling is worse, probably because I am not home to cook. Last night I had cramps in my legs and some really strange dreams. I kept dreaming I had collapsed in a store and my legs were cramping so bad(in the dream). When I woke up, my legs were cramping.

[billybags]

wvgirl, thinking about you both, hope your daughter continues to get better. You should not start  neglecting your self. Take it easy.

[Traveller1947]

Please take care of yourself, wvgirl!  Any of us who've had a loved one in the hospital know how easy it is to neglect your own health in those circumstances.  I'll be praying for you and your daughter and sending good thoughts your way.

[malaka]

Google "nephrotic syndrome" and look at the articles.  Its not a disease, per se, but a condition. 

[wvgirl]

She was transferred today to a larger hospital about 70 miles from where we live. I seem to have completely lost my ankles but we are hanging in there. Her Dad is coming to see her early in the morning. He lives out of state. I am going to give them some time together in the morning and give me some rest time.

[adairpete]

I hope you and your daughter are doing well! I remember what it was like before I started dialysis and honestly, for me, starting was actually a huge mental relief. Not that dialysis hasn't been challenging at times, but a huge weight was lifted when I could stop obsessing over labs and watching my ankles swell, not to mention the nausea and fatigue. Even now I still have the attitude what more can they do to me? I'm already on dialysis! I think that the anticipation of it is mentally more taxing at times. At least when you start, you can roll with whatever comes along but worrying about all the unknowns can be very stressful! This is a good group to have to talk to!