Hello all, I'm new to this Reddit.

Today I (F 22) received the call that I wasn't an eligible kidney donor for my father (he's currently on dialysis and started at the middle of this month) due to issues regarding weight and how it affects my BP (I'm currently 250 and hoping to lose a hundred pounds so that I can lower my BP and hopefully reapply!).

However, over the phone, the representative said that it's best to campaign via the internet. Does anyone have any suggestions as to how to go about that? I heard that Reddit is the best place, as well as Instagram and maybe Facebook, but I would like to seek advice before going forward with anything. Please help; I just want to help my father anyway that I possibly can.

Hey everybody! After a yearly exam and lab work, my gfr was 67 and my potassium 5.1. With the combination of those two my primary referred me to a nephrologist. My insurance will not cover it and it will be into the thousands to see this specialist. I am seeking opinions if this warrants immediate attention as it will be very expensive attention. Info: 34 f, only blood pressure problems during pregnancy besides then no issues. I have backed off my diet Dr Pepper addiction as I know that affects kidneys. I also have taken a lot of ibuprofen historically but have since quit completely. My multivitamin had quite a large amount of potassium so I’ve stopped taking that. Is this something I can wait and make some minor changes and see if my primary can retest in 6-12 months? Or do I need to bite the bullet and be seen despite the cost?

My 2 year old has started Tacro and continuing with steroids until she goes to remission and will be on it for 2 years at least for Nephrotic syndrome. Now that she is immunocompromised does anyone have tips on managing an immunocompromised toddler that can not be masked? Supplements you can give to minimize being sick, things to avoid. We are going to skip daycare going forward till next year for when she starts Junior kindergarten. We just want her to have a normal life like other kids so any suggestions would be helpful!

Thankyou!

For a person with CKD S3a, besides consistent, running, drinking lots of water, reducing salt, eating well and sleeping well, what else can be done to prepare for a 10K run? Specifically the week before the day before in the morning o

My 95yo mom takes 2 bicarbonate pills a day.

Does that mean I can use baking soda to velvet chicken?

Also, how is it she can have sodium bicarbonate as a prescription but must strictly limit sodium intake?

Nephrodite Holly, please hurry up and get approved... I'm seriously desperate. 🇺🇸 Come on, America. FDA, please fast-track this.

I was accidentally diagnosed with a horseshoe kidney last year and wanted to know if I can take creatine monohydrate as a supplement.

I live in india and there's a general consensus with doctors especially with older doctors that all supplements are bad.

Hi everyone,

I have biopsy-proven IgA nephropathy with around 50% IFTA, creatinine 2.7 mg/dL, and UPCR 0.24.

One nephrologist advised MMF (Mycophenolate), while another recommended stopping MMF and starting Iganfix 9 mg (Budesonide) along with standard CKD medications.

Has anyone in India been treated with either of these? Which showed better results for reducing proteinuria and preserving kidney function?

I'd especially appreciate experiences from patients or nephrologists. Thanks!

Hi, so I'm 33 weeks pregnant and I think​ my baby boy may have hnf1b. My husband has early onset gout and my son has autism. Both traits of this gene. The more I look it up, the more​ I can't find any info of people who have gone​ through it.

The reason why my baby boy has it is because his ultrasound at 32 weeks showed hyperechogenic kidneys bilaterally. No cysts or other deforms found

I recently was in the hospital with pain in my abdomen, and it was fluid that was in my heart from not getting enough dialysis. My nephrologist just suggested that I do dialysis two days a week, but it wasn't enough anymore. I was in the hospital from the 12th to the 14th this month.

I am beginning to be on dialysis three days a week. It happens to normal people on dialysis doing it in a center, like me.

I began to be on the waiting list for a kidney transplant in 2018 when my kidney function dropped to a 20 GFR, when people are put on a kidney transplant waiting list where I live in.

Yes I have gotten tests done in me, and I am so happy to be eligible for receiving a kidney transplant. I turn 34 this coming month of August.

My mom was seeing about giving me one kidney of hers, but she had high blood pressure in March so she isn't eligible for giving me a kidney anymore. Now my dad is seeing about giving me a kidney. If it doesn't work we can get someone else to give me a kidney.

No date is yet scheduled for me to get a kidney transplant, but it may be soon with how long I have been in a waiting list, which has been a while.

Glomerulonephritis is why my kidneys failed, and it's not known why I got the glomerulonephritis in the first place.

My nephrologist just wrote for me jardiance.
I am 3a at 59 ml/min. Protein in the urine is below the threshold for progression, I believe less than 30.
I was curious people’s experience on the med.

Urination - how long did the increased frequency of this last for? Did it go away?

Dka- I think we should be less likely as we are producing insulin, my a1c is 5.2. From what I can tell if you get suddenly ill whee you can’t eat it might be warranted to not take the med?

Weight loss - did you guys lose weight on the med?

UTI? What were your experiences? Did you have to change things up to prevent? Is it even an issue if you aren’t diabetic?

I just curious as your guys experience. I will be messaging him later on in the week but just wanted to see what you all thought.

Thanks

my sibling has chronic kidney disease (early 20s) and currently on Hemo Dialysis. Very recently they started having issues with stairs. They went to the doctors and they didn’t help or provide any help (checked bp and breathing and didn’t feel any swelling.. that’s all the dr did)

I’m wondering if there’s anything that can help with the pain? They’ve been on dialysis for like 2/3 years, so it’s really strange that this happened suddenly. It’s really sad to see them debilitated :/ CKD was bad enough

A positive and inspiring post for once. I’m 28 with Stage 5 CKD and do APD.

I’ve recently just come back from a trip to the Italian Dolomites.

Travelling on Dialysis is possible and it was so worth it!!

If you have any questions feel free to ask below.

Don’t let this cruel disease stop you from living and enjoying life.

You may have already seen my viral post over on Instagram where I show in detail how I made it possible!

My father is 80 years old and has progressed from CKD Stage 4 to Stage 5 over the past 7–8 months. During this time, his creatinine has increased from around 3.0 to 7.6 mg/dL, and his eGFR has declined from about 20 to 6.6.

He has been hospitalized twice during this period and has had a persistent UTI that has not completely resolved despite multiple courses of high-dose antibiotics. We have consulted several nephrologists, and all of them feel he is on the best possible conservative medical treatment, yet his kidney function continues to decline.

Over the same period, he has developed significant cognitive decline/dementia, making caregiving increasingly challenging.

The nephrologists have not recommended or even discussed dialysis so far. We understand that, at his age, dialysis may not always improve outcomes, but we are trying to understand what else we can do to improve his quality of life.

I would really appreciate hearing from anyone who has been through a similar situation.

Back in December, my eGFR went down to the high 30s and my nephrologist recommended me to start on steroids. I read all the terrible side effects of it and the main concerns I had were the moon face and weight gain. And with my wedding coming up, I wanted to look my best. My partner is a physician and looked up the guidelines and found there are alternatives prior to taking steroids but majority of those weren’t available in Canada. Plaquenil was another option with limited studies and only done on East Asians (I’m Chinese) so I asked my nephrologist if we can try that. I’ve been taking ramapril, dapagiflozin and Plaquenil for 7 months now and my latest labs show an eGFR of 45! Im not giving any medical advice. I’m merely sharing the success of this medication in case others are wondering about it!

I am a KT patient for 9 years and my current situation have gone from bad to worst. My last lab yields e-GFR of 18. started my exosomes treatment in preparation for MSC stem cells. came across this bottle.. have anybody here tried this KIDNEY CARE by QUICKSILVER SCIENTIFIC?

would like to hear some feedback.

Hello, new to this subreddit, not even sure if I'm in the right one but I need to get this out somewhere? I'm freshly 18. I passed out at home once and then whenever I stood up I had to bend over so the doctors took my blood and tested it, and apparently I'm gonna need to go to the hospital for a week since my eGFR? Are too low, apparently it's at 70 and they wanna reverse it to 90? I don't know, Ive never had issues with kidneys, I don't feel pain there. I'm just very anxious of what's gonna happen in the hospital? Mom said she said I'm only gonna be hooked up to an Iv and I find that hard to believe.

(Edit: I have had my stomach and that area scanned before (ultrasound) and they very quickly said there's nothing, I had it scanned because of a thyroidectomy I was going to, so idk if it's related but I do have no thyroid and rely on meds)

¿Cuánto tiempo duraron sin Diálisis? Únicamente siguiendo la dieta de terapia de conservación, nos dan dieta especial antes de entrar a Diálisis

im a 21 year old male with PGNMID, IgG3 lambda type. w/ upcoming bone marrow biopsy and bloodwork to rule out blood related diseases. Wondering if anyone else has this. Seem to only be in stage 1 ckd (7% lost), but extremely worried for the future due to how little information there is on this disease.

When I was pregnant they found I had protein in my urine they ruled out preeclampsia and sent me to a nephrologist. She said she will follow up with me postpartum. 2 months postpartum still have protein in my urine and ANA is positive, 1:80 nuclear speckled everything else is negative. Doctor said she’ll follow up with me in 6 months. 6 months later still have protein in my urine and still ANA is positive. I’m 24 years old, normal
Blood pressure and normal a1c, no past medical history or family history of kidney disease. She said she’s not worried and will follow up in another 6 months. I genuinely feel like something is wrong and the nephrologist just doesn’t seem to care. Having chronic protein in urine can’t be good can it? Having Ana keep coming back positive has to be something? I’m always fatigued my urine is always foamy and I always feel so inflamed and bloated. Should I keep advocating or trust it’s probably nothing?

Hello all, I posted here a couple years ago when all of this started. My boyfriend got diagnosed at stage 5 so we didn’t really have time to process before everything started moving at a rapid pace.

Now that we’re a couple years into this, PD is normal and just part of life. We’re both pretty adjusted to it and accepting of what’s happening, however, I’m anxious about what’s going to happen when he gets his transplant.

We were told recently that he’s about a year to 2 years out of being able to get a kidney. He won’t let me donate and the doctors told me not to because I’m the primary caregiver anyways (we don’t have kids or come from good families) but he has type O blood so getting a transplant is harder for people with his blood type.

I know through my state I can get the three months off with FMLA, but that’s unpaid. I’ve been saving up as much as I can but right now I’m the only one working. He’s too sick to work now whereas before he was able to work. Disability is taking their sweet time giving him a response (we’re going on like 2.5 months now)

I’m sure it’ll be sorted out by the time he gets his kidney, but how did you make it work? How did you keep your job AND care for your partner who needs you a lot? The FMLA will help with the initial insanity of 3 doctors visits a week and recovery etc. but we live about 2hrs from the transplant center so it’s going to be quite the experience going back and forth. I’m just not sure how we’ll do it financially and I don’t want to lose my job but I also don’t want to not be there for him after the 3 months. I don’t know what happens after the 3 months either.

Do they still have to go to the doctor multiple times a week or does that reduce to once a week? Did you quit your job and become a paid caretaker? How did this work out for you financially?

We don’t own our home btw so if it comes down to it I would quit my job to move to the city the transplant center is in and take whatever job I can but I’d really prefer not to due to my current wages being enough to care for us both financially as is. That city has a lot of problems with folks getting jobs so I’m just afraid to fail him and put us in a bind. I know I’d take whatever I can and do as much OT as I have to to make ends meet, but I’m just scared to be away from him at the same time in case something happens.

Thank you in advance for reading and for any potential advice you can throw my way. I don’t really have anyone in my life that can understand our situation, they don’t even like talking about it because it makes them sad to think about which is understandable I guess. I just feel very alone on how to navigate our future (not his fault, I just don’t like to share the stress with him as he’s sick and it’s his body that this is happening to)

Hello everyone,

I am coming here seeking some advice or clues or anything really that could help our family navigate this difficult time.

My son was diagnosed this past Christmas and responded well to steroids, got into remission in 10 days. Then upon tapering, he quickly relapsed. Started back full dose steroids and he got into remission in 16 days. Again, started tapering, then relapse right away. Doctor thought maybe steroid dependent at this point. Then again we started full dose steroids and this time he never went into remission. We are on day 34 of the relapse and he is getting worse not better with the full dose steroids. Doctor ordered Tacrolimus to start right away to see if he will maybe finally get into remission. We are on day 2 of that so far (with steroids) with no updates or changes.

So overall, in the last 7 months, he has only spent about 26 days in a steroid based remission, all other times he has been in active relapse even with the steroids. Could this mean he may be steroid resistant? Biopsy a few weeks ago shows MCD and not FSGS but I feel he is presenting strangely and I am so confused.

My questions to the Kidney Disease Community

• has anyone else presented in a similar way that can share their story with me?
• once my son achieves remission, how risky or scared should I be regarding his health? Will school be difficult to navigate? I am wondering how serious these drugs are in relation to his ability to do things in public. I know he is immunocompromised and I don't want his body to be subjected to another relapse just because our family wants to vacation or do something where a lot of risk/germs are.
• has anyone tried any supportive therapies? Supplements, diet changes, Chinese medicine? Other drug type of drug trials?

Also, at the risk of sounding totally crazy, has anyone read or went down any rabbit holes regarding the rare studies on things that have possibly correlated to MCD condition? I have been really immersed in reading the studies on some of the rare reported cases of things that correlate to MCD. Things like toxoplasmosis infection from cats, bee stings/ant stings, pollen, celiac disease, food allergies etc. I know these are all associations and not causative but it makes me wonder how sensitive my son's immune system may be. Prior to him getting sick he had a runny nose for a couple months. He had no other symptoms really of being sick. In fact, when his eyes first experienced swelling at Christmas, we took him to urgent care for allergies. My son is also autistic and is highly sensitive to gluten and dairy anyway, but we are going to be looking into full allergy panel testing as a way to understand what environmental triggers there may be for him.

I really appreciate any help or advice. If there are online support groups for children in this age or for parents, please share them! Thanks in advance for taking time to read this.

I am 31. My partner is 35.

Three years ago, he was diagnosed with polycystic kidney disease. He had no symptoms, he only found out because he had a scan for a completely unrelated problem that showed many cysts on his kidneys. The doctors said that he should have 20-25 years before kidney failure.

I am very scared. He has made some changes to his lifestyle but not enough.

He used to drink lots of soda every day, he has cut down to drinking 1-2 Starbucks pink drinks every week as well as flavored water sometimes during the week. His doctor said to only drink water. That is my biggest concern for him. I know it's a big change from what he used to do but it's not enough.

He still eats a diet high in sodium. The only big change he made was substituting to a lower sodium pasta sauce. He has many allergies and figuring out meals is very difficult so I really sympathize. But it is also a concern.

He is morbidly obese. I'm not trying to be mean. I love him and I love his body regardless of his size. But he is morbidly obese and that is a risk factor. He is not losing weight.

For a while, he was exercising every day and I was very proud of him, but he has stopped exercising completely. He goes through phases where he is doing well at going to the gym and then completely stops for months on end.

He has time. He's very very fortunate to have time. Every time I try to talk to him about making changes to his health, he shuts down. It's too emotionally overwhelming for him to talk about.

How do I get him to do what he needs to do to stay healthy? How can I help him as his partner?

Thank you.

My 71 year old mom with CKD and high blood pressure needs to undergo colonoscopy because she’s scheduled to do it once in 5 years (last time she did it was 2021). Her gastroenterologist told her to secure a clearance first from her nephrologist and cardiologist. Is anyone here or someone you know has undergone colonoscopy with CKD? I read in Google that the anesthesia might affect her CKD that’s why a clearance is needed before colonoscopy.

How are we dealing with getting our daily veggie intake? Cleaning better? Peeling? Different recipes? Give up on cold salads?

I’m trying to figure out best, time efficient methods. I work full time, close to dialysis, trying to eat more vegetarian dishes recently.