I put out a flyer for women with Alport syndrome to take part in an interview/publication for medical journals, and it gets removed by mods for “advertising / spreading wobbly information”? How absolutely stupid is that? It’s LITERALLY only to gain the experiences of women with the disease since they had previously only been seen as “carriers” and many women, like myself, have been misdiagnosed for years because of it. I have been active on this sub for years but this is just ridiculous and at this point, people are power tripping. I did not advertise a product, try to sell anything or earn a ..read more

My father is a early stage 4 Ckd Patient. He is not on dialysis yet. Doctor prescribed EPO injections to improve low hemoglobin levels. He took these injections before in two occasions to improve his levels. This time he was prescribed two injection 4000 dosage each, to be given in two days. His hemoglobin was 8 at the time of giving injection (we tested just yesterday). A week after his new level is 7.8 . It didn't increase but decreased further. Is this a sign it's not working? submitted by /u/Least_Cap_7441 [visit reddit] [comments ..read more

Hello! I’m a 38F in good health, I workout daily and have pretty good amount of muscle mass. Few years ago a CT scan found a large 7mm stone so I started seeing a urologist. The stone is still there, it couldn’t be found during surgery?!? Anywho, since then I’ve done several 24 hour urine tests. They always come back abnormal in a few areas. Diet related mostly. This time my results were worse. The ones marked as out of range were as follows: eGFR 89 ( was 109 eight months ago) Calcium 420 Sodium 190 Magnesium 159 Phosphorus 1305 Urea nitrogen 16.71 Protein catabolic rate 1.5 Creatinine/ body ..read more

Had a petscan yesterday. I thought i would have no side effects and now my once norma urinary output is close to none. Yes I know I have to contact my doctor but no such risk was discussed. Can a PET scan affect my kidneys this much? Has anyone had radioactive scans and had immediate kidney issues after? I am stage 3 CKD submitted by /u/byehello321 [visit reddit] [comments ..read more

I'm having a kidney transplant in June. I have seen a post about initially losing lots of weight after transplant, and then putting it on due to the steroids. Is this true? What was your experience? submitted by /u/christmassnowcookie [visit reddit] [comments ..read more

What's your favorite food to eat? I've been losing weight and appetite. I usually get morning nausea. I have. Renal supplement called nepro but id like to eat and get nutrition in my body naturally. I used to eat 2 meals and couple snacks throughout the day before dialysis in Feb. Recently, I have only been able to one meal, small snack and I drink one nepro. I found kiwi and bananas helpful but due to potassium which mine is normal. I'm trying to not over due. Some meats are so expensive these days. And chicken is hard for me to eat. I'll try to eat eggs or oats in morning. Any suggestions w ..read more

So a couple weeks ago I finished up my home dialysis training and finally got my all my supplies and my cycler earlier last week. Since being home I've developed a new routine and honestly, things have been going good. Sure I still get down sometimes thinking that this is gonna be my life until I can get a transplant, but my boyfriend and dad help a lot in cheering me up. My cat doesn't know how to feel about my machine yet since it makes noises when cycling but im sure he'll get used to it?.Sorry if this is kinda a cringe post but I just wanted to share a nice side to this whole experience ..read more

I have been on Jardiance for a couple months now primarily to get proteinuria under control and have read on here that many are on Farxiga for similar reasons, and many seem happy with it. My wife's cousin is a pharmacist and she was saying that I should have asked about Farxiga over Jardiance as it is 'about 10x cheaper' here in Canada. Has anyone switched from Jardiance to Farxiga and noticed any difference? I checked a few pages where they are compared and they 'seem' very similar but they are two different pills and different prices. Farxiga can be bought under a generic. Has anyone tried ..read more

Hi everyone, I'm curious, what did the ultrasound of your kidneys say? submitted by /u/InterviewNo7491 [visit reddit] [comments ..read more

Yesterday my girlfriend received her kidney transplant, what’s recommended for at home care. What techniques have been done tell help prevent infection? I am open to all advice , I am a fast learner but I want for her to have a very comforting recovery! submitted by /u/P4ck3rfan [visit reddit] [comments ..read more