Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Craving Citrus

I am craving Citrus especially lemons a lot here recently I mean really bad cravings. Mom thinks its because I am losing too much Vitamin C through my dialysis. Does anybody know if this is the cause or if its something else? Oh, and I get tingling in my hands and feet. (No Diabetes)

Replies

CHeatherS
CHeatherS

Gosh, I sure don't know but would sure wonder about your labs. I drink some lemon juice in my green tea every morning, and have for years, just to alkalize my system. How about anemia, do you have any? Do you do epo shots? There's just so much about all of this, and you need a good doctor and dialysis nurse to keep track of thing.
deleted_user
deleted_user

I am a citrus freak and especially craved it while I was on dialysis. I drank a lot of lemonade. I either made it myself (just squeezed the juice of a lemon and added sugar, water and ice) or I got the Paul Newman's kind because it doesn't have additives or corn syrup.
polykid
polykid

yeah CHeatherS I do 50 on the epo syringe once a week.
deleted_user
deleted_user

enjoy your lemonade if you like it.
the feet tingling may be resless leg syndrome (RLS) which is common in dialysis patients. there is medication for it, ask your doctor if it would be safe for you to take. if it doesn't bother you much, leave it alone.
deleted_user
deleted_user

Did you get your PD sorted out? You seemed to be having a large volume bag and a difficulty with it.
polykid
polykid

Clive01 I'm not sure yet they just told me at the clinic to do more 2.5s and take 160mgs of lasix to get the extra fluid off. They said as long as I'm not retaining fluid again then I should just do (3) 2.5s and (1) 4.25 a day.
polykid
polykid

I found out my craving for lemonades is my vitamin C dropping.
deleted_user
deleted_user

Thanks, its just that I think I am near to starting dialysis and plan to ask for CAPD. I know the basics of it but thought that 4.25 litre was a lot. Is that the overnight one? How long have you been on it?
I do wish you well and feel a sense of family with the contributors here and its interesting reading about peoples experiences.
Regards,
Clive
polykid
polykid

The doctors based on what you need put you on certain numbers but it isn't good to be on 4.25s because they are harder on your membrane. I started on all 1.5s and then on was on all 2.5s for a long time then I had to do 4.25s for a couple of weeks because of my dialysis isn't working right. But everyone is different I wish you well.
deleted_user
deleted_user

Hi Polykid..
I had tingly hands and feet after starting dialysis leading to pain and numbness. It was eventually diagnosed as vitamin depletion so i was prescribed Vitamin C and B. I was told I had B vitamin deficiency. The water soluble vitamins get lost in the bag.

Easily fixed though.

I have been offline for ages, so just catching up with your fluid retention problems. Hope things have improved.

I have had a few issues with my dialysis and everything got crazy for a few weeks. I developed a leak. Fluid was leaking out and collecting under my skin . Consequently I did not drain and gained many Kg and was not dialyzing. I was booked to have a scan (linogram) and surgery followed by transfer to hemo for three months. THe fluid under the skin looked and felt like extra fat. I noticed it because I am pretty scrawny and suddenly felt all this extra weight and pudgy feeling around my mid region.

I wonder if maybe you had a leak too - it is not that obvious but totally messes with the drain and ultrafiltration..

As I REALLY did NOT want surgery and hemo I bought an elasticated waist belt from a cheapo shop and wrapped it tight where the leak was. I determined this by putting in a cold bag for a bit and I could feel the cold fluid accumulating under the skin. My surgeon laughed when he heard of my self-diagnosis and budget plans to avoid surgery - but guess what - it worked!!

The pressure from my waist support seemed to stop the fluid leaking and now it has healed and does not leak . However I have taken to wearing waist support all the time now as I have a hernia so it helps hold that in too.

This is the major issue with me and PD. I am a little person and am literally bursting at the seams with all the fluid and my big old kidneys. .

I have to confess I developed the leak after helping at my daughters gymnastics class. I am an ex gymnast and stupidly demonstrated some moves. Ha . Stupid eh. I really do forget at times that I have this extra paraphernalia on board.

I will resist the urge to do cartwheels in future. The thought of having to do hemo really freaked me out as I would lose my job.


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CHeatherS
CHeatherS

Oh my gosh Pukeko!! You are a genius!!!! What a great idea, and this could be something that Polykid might be going through. I have been wanting to get some kind of a waste belt as well,. just to keep things in order so I can be active.

You rock Puk!!!!!

Blessings!
Heather