I have very advanced kidney disease resulting in severe swelling of legs and feet There is much discomfort and the occasional pain.
Anyone else experiencing this?
KD discomfort : I have very advanced kidney... - Kidney Disease
KD discomfort
Written by
hinch32
To view profiles and participate in discussions please or .
15 Replies
•
Hi and yes I also experienced swelling in my legs and feet which is very uncomfortable. I also have stage 4 kidney failure, so are not alone. Briana
Could be blood pressure pills side effects. You should wear compression socks and do shoulder stands or at least elevate your feet higher than your head.
Feet elevated above heart ❤ level, not head is the correct recommendation.
Ask your dr if you are on a combo blood pressure and dieuretic? I was on one that was causing that to happen to me. I don’t remember the whole name of med, it was years ago but the first part was Benazapril/. Swelling went away when med was changed.
I work with my feet elevated nearly the entire day. I also follow a very low sodium diet and have been placed on moderate fluid restrictions. All of this has helped me. My fluid retention has decreased considerably; most days I experience minimal fluid retention now. But it took me several months to figure out how to manage my sodium and fluid intake before I reached this outcome...
I recently experienced severe vitamin D toxicity. That caused a notable decrease in what little renal function I have left. Thus I’ve been experiencing more fluid retention now than I did before the toxicity episode. I’m hoping the toxicity didn’t cause additional permanent kidney damage. But it’s likely a little too early to know for sure about that issue. In the meantime I’m am experiencing some increased fluid retention unfortunately.
I hope you’re able to get your situation figured out.
Jayhawker
Hi there! Curious about the Vitamin D toxicity. Could you clarify? Thanks!
Yes, I was placed on a medication for a hyperparathyroid condition I’ve somewhat recently developed. Apparently that’s a side effect if the chronic kidney disease for me.
The medication intentionally elevated vitamin D. Thus, they should have been monitoring my vitamin D every few months. They didn’t. So over time I developed vitamin D toxicity. By the time they actually checked my vitamin D level it was so high it was beyond what the jab test could measure.
Of course I was feeling very poorly: foggy brain, continuous mild headache, dizzy, heart beat was irregular and sometimes quite rapid, fluid retention, nausea, etc. I’ve been in renal failure since the first week of January 2017. So I assumed that it was just time for dialysis.
But my labs only showed minimal deterioration in renal function with eGFR coming in at 14 rather than 15-16 and my BUN elevated from 48-52 up to 76 (definitely not good). My phosphorous was elevated, likely the cause of my itchy skin... Nevertheless, I still had a notably higher eGFR than the norm for starting dialysis.
They discontinued the medication immediately. I felt progressively better with each passing week. Four weeks later I saw my nephrologist rather than the nurse practitioners who had been overseeing my care. At that point my labs showed that I still had toxicity but it was within the range the test could measure so it was coming down. I had labs again a few weeks ago, still slightly toxic but nearly back in the normal range.
I’m feeling a lot better now. I am still somewhat prone to fluid retention which I rarely experienced before the toxicity. My most recent eGFR was still 14 so I’m not sure if it will return to 15-16 or not, I’m still hoping it will but only time will tell. My other data is back in the normal range with the exception of my BUN, which has come down some, and my PRH which continues to elevate without treatment.
I’ll hsve my next labs on Sept 11. I’m expecting I’ll finally find the toxicity I’d gone at that point. I’m hoping to see my eGFR back to 16. And I’ll see where my PRH comes in at that point. I have an appointment with the nephrologist nurse practitioner on Sept 16. (I’ve chosen the one I’ll see regularly now; I chose the one who wasn’t neglecting to run labs, etc).
Anyway, it’s been quite the ordeal. I’m pleased to be feeling and functioning better. It’s amazing how well one can feel when one isn't experiencing ever increasing levels of toxicity.
Jayhawker
Hello there hinch32! Yeah, from what I’ve read so far, it sounds as though we’re all singing a similar tune! Lol! I am also experiencing fluid retention, a little more so these past few days than I have been lately, because of a very stupid thing I did. My brother came to visit with two big bags of regular salted potato chips, and of course, I caved and consumed a bunch of handfuls. I’m so ashamed of myself, and now I am paying the price that usually comes with such an indulgence! Lol!
But in all seriousness, I also have a high creatinine, RBC, and urea count. From the online research that I’ve done, high creatinine levels can create fluid retention issues. I’ve been trying my best to lower my protein and sodium intake lately in order to help with this issue, but as I mentioned, I’ve been cracking lately. That is so shameful.
Not sure what your current creatinine levels are, but you may want to check in with your nephrologist to see if that may be contributing to your problem also. And I too, have been spending much of my time with my legs above my heart (that was my doctor’s advice as well). I have a hospital bed in my home, so I use that to the highest level it will go, to keep my legs elevated. It really does help.
I hope some of this helps you with your current situation. I completely understand how you feel, as do all the others here, as I say, from what I’ve read. Do take good care of yourself. I wish you all of my best. Please keep us posted as to how you come along. Many blessings. 🙏🙂👍✌️
Yes, my legs and feet are swelling very badly and painful, they have me on 80mg of Foursemide in the morning and in the evening but nothing seems to be helping, im in Stage 4 Kidney Disease and only 26% of my kidneys are working
Hey there! Sorry to hear about your swelling. I am Stage 5 with eGFR of 11.5% and I have experienced swelling with Amlopodin, before my period and if I eat foods that stress my kidneys. All the best!
My function is 24% up from 8% in October 2028 and I'm sorry but no I don't have any pain or swelling at all.
That’s an impressive improvement in your eGFR. What do you and/or your nephrologist think has led to this improvement?
Jayhawker
I had an AKI caused by Omeprazole went from 89% to 8% in a two week period. Blood tests for Rhumatoid. So in local hospital for 14 days and then the Kent and Canterbury Renal Unit. Had a CT scan and a biopsy permanently damaged 25% and 100 mcg of steroids for 3 months then tapered down, no other treatment as no disease, cysts or anything else wrong. So by elimination it had to be a drug taken for Rhumatoid. All stopped and Nephrologist Dr Delanany said once they eliminated the likely, they had looked for the unlikely, when it wasn't just unlikely but had gone into the nigh on impossible then it was the only thing it could be. He said no diet just no bananas, grapes or baked beans and low salt, salt. So then they said if function was going to return it would be slow and now its probably as good as its going to get. I have regular blood tests and apart from fatigue no other problems it definitely doesn't hurt and never did even at 8% it seemed like a dream as I didn't feel ill just weirdly tired and confused. I had a shower with my clothes on and came home unable to stand up for very long, but over time life returned to a new sort of normal. I am careful not to gain weight and stay as healthy as possible.
Not what you're looking for?
You may also like...
Do KD Diets help maintain/better kidney function?
Wanting to know if how many of you have been following a kidney diet and have found that it has...
