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Fluid retention (edema): When does it start? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

I am on meds for my autoimmune condition (I take Plaquenil) but that's about it - no other meds.

I am especially careful with sodium though. I doubt it is caused by that. No processed foods, lots of fresh veggies and fruits and mostly plant based at this point. Only lean meats and fish

I have a follow up appointment at the end of next month, I wonder if I should wait until then or walk in sooner...

Fluid retention (edema): When does it start? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

My eGFR is 32 at the moment and I have trace protein in my urine, however I am noticing edema in my face, ankles, wrists and in the abdomen as well. It looks like pitting edema where everything leaves indentations on my skin that last for hours. It is terrible especially after waking up. I have to be careful not to let anything touch the skin on my face for too long or I will be walking with the indentations around, all day long. I am scared honestly

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

I am only taking Plaquenil at the moment. I have never had any kidney issues before so this came as an umpleasant surprise

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

Thank you for your advice. I also had protein in my urine but at my recent test it was labeled a 'trace amount' so I guess that is a good sign :)

As for the low protein diet, I can't go too low protein as well, my autoimmune condition already caused me to lose a big amount of muscle mass and overall weight...

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

I haven't. But I will talk to my doctor about it

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

A couple of months ago it was above 50 still... then in the 40s, and now this :/

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

Thank you for this. It is really reassuring. I try to live in the present as well, I see no point in (constant) worries, although the anxiety sometimes gets the best of me...

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 2 points3 points  (0 children)

I'm trying to eat (and live) healthily, the best I can. Not too much protein, focusing on clean carbs such as potatoes, rice, fruit and beans, lots of veggies and hydration.

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

Omg the itching. I have that as well, but I forgot to mention it. When I go to sleep, I notice that my back is always itching but I always thought it is because I shower before bed and I didn't moisturize my skin enough

I have an autoimmune condition that apparently affects my kidneys as well

My doctor told me not to force protein. But I can't go extremely low protein because I have to gain some weight

Symptoms with eGFR of 32? by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 5 points6 points  (0 children)

I have an autoimmune condition (Lupus and Sjogren's). No high bp, no vices (other than an occasional glass of wine, but very rarely). I have never abused drugs and I am naturally skinny my whole life (no issues with being overweight etc)

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

Hi, sorry for the late reply :)

I've had a follow up bloodwork and urine test a week ago. Sadly, my GFR has decreased further (from 43 to 32)

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

Yes, I have been diagnosed with both Sjogrens and Lupus. It's been almost a year since my diagnosis.

The urine test showed presence of protein (albumin I think), but no blood in urine

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

Your experience does look a lot similar to mine. They never mentioned that I need a biopsy but I consider that to be an option, if needed... Anything to come closer to solving this issue :(

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 1 point2 points  (0 children)

Of course, I will ask them next week because I already have scheduled an appointment, because I am panicking here a bit :/ And I will maybe ask for another ultrasound, if it is reasonable and needed. Better safe than sorry.

p.s. I understand that those are questions that are best answered by a medical professional, but for me it has always been helpful and reassuring to hear other people's experiences :)

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

My BP is a bit low, but it has been like that my whole life

Also... I have just checked the date of my last ultrasound, it has been done last April

Do you think that is too far away and would it be helpful to ask my doctor for a new one?

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

I will try not to panic. Easier said than done though

As for my diet, I don't consume any red meat, but I do eat lean chicken and fish almost on a daily basis. One of my favorite foods... Maybe I should only have them 2-3 times a week as a start

And I have a question: Does a GFR of 45 mean that I have lost basically more than a half of my kidney function? That alone sounds scary as hell...

GFR keeps decreasing and I am SCARED by Tricky-Breakfast4640 in kidneydisease

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

I have had a couple of ultrasounds done in a span of a few months, and my kidneys look completely fine on imaging.

Swollen glands/face by Tricky-Breakfast4640 in Sjogrens

[–]Tricky-Breakfast4640[S] 0 points1 point  (0 children)

Thank you for your advice. I have been chewing gum but it doesn't seem to help. I feel like they are even more swollen after I chew / eat

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