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!

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!

Couple of weeks ago, I found protein leak in my annual health checkup report.

My nephrologist asked me to go for urine culture, ultrasound and 24 hours urine test. He gave me anti-biotics for 10 days which I have completed.

My urine culture came negative, ultrasound report came normal and now I am left with 24 hours urine test. Tomorrow, I am going to give my sample.

I am so much stressed right now after reading articles online and really don’t know that if it will be cured or not 😥😥

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)

Hi

Microalb/creat test in April showed 418.4. Repeated test 2 months later and 0.

Nephrologist is going to wait on kidney biopsy due to recent labs. Does that sound about right?

¿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.

I don't understand how my phosphorus is that low. (I've had low phosphorus before in CKD but not this low.) I was in the ER yesterday from passing out, shaking, and suspected seizures from hypertensive encephalopathy (blood pressure was 300/220, 245/100, 278/193, 298/211 as well as unstable heart rate from 140-249). My CMP was fine and infection tests were negative (I had random fever of 101.6 responded to tylenol). Waiting for urine culture to come back. My potassium wasn't that low 3.2. But my phosphorus was less than 1.0... is that dangerously low? Are my kidneys hyperfiltering phosphorus? I'll bring it up to my PCP followup of course. But dairy sources like yogurt and milk are high in phosphate and I consume them daily.

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.

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.

I am a caregiver for an elderly parent with stage 4 kidney disease, amongst other things. Tomorrow is lab work, and while I was feeling pretty calm about it, the anxiety has kicked in tonight. I hate waiting for results.

I want to be hopeful that things are relatively steady, but it’s the waiting for answers that’s hard. There have been recent changes that give me pause, but it’s hard to know if it’s because the kidneys are moving closer to stage 5 or something else.

I have a (different) LO with type 1 diabetes and kind of got used to having a general sense of how things were going because of the cgm. Not having any visibility into what’s happening except for the few months out of the year is a whole new ballgame.

Hello please suggest me! I'm a 26M based in bangladesh with 10.28g proteinurea and 0.8creatinine i had 3 months + immunosuppresants Phenocept 2x * 2x, tacrolimus2x * 2x, cortan 15 mg alternative day( no biopsy ) now for 20 days im on repril 10mg and losartan with clopid 75mg and indever40mg 3x times, defrol 1000ui.
I'm under a top 10 nephrologist in a country
now should i go for india or any other country?

Hi everyone,

I posted this on MyKidneyCancerTeam.com, so if some of you are on that site, I’m sorry for the repeat.

It’s strange how being diagnosed with T1b pRCC has me being wanting to frantically get active again and not miss things contrasted with me just coming home and sleeping, and not necessarily out of tiredness.
I am only Stage 1, but this and my upcoming partial nephrectomy will likely make my PKD and my kidney function progress more quickly to ESRD/Stage 5 (I’m stage 4) and dialysis.

I also find this fear of my likely decreased kidney function contrasts my denial and in thinking that my kidney cancer is no deal.
I had also been dealing with a bout of serious clinical depression before all this and being active socially, artistically, and athletically had fallen to the wayside beforehand.
I want to get my mojo back and keep it.

… aaaaand here comes another little weepy moment…

Thank you for reading.

I got prescribed a high dose of weekly vitamin D and I asked my doctor if it would be ok to take such a high dose since I’m very high risk for kidney stones. They said I should be fine and they didn’t think it would cause any problems. This wasn’t the most reassuring thing to hear so I’m just curious if anyone else with a CKD and/or high risk for stones has taken a high dose and if it increased their risk or if they had any issues.

Hi, we recently found out my husband has CKD he is stage 4 and his nephrologist thinks he will need dialysis or a kidney transplant in 6 months.

I have a 5 year old and also work full time while trying to now get our finances together, cook meals at home, and brace for basically being a single mother as I felt like most of the time anyways managing majority of the household responsibilities.

I feel so isolated, no one to relate to and I wish I could find other moms in my position. I’m 39 and don’t know what to expect next or if I just need therapy or a support group.

Hi all, I was diagnosed with IgA Nephropathy last year, since then my creatinine is shooting and it went to 9.9. My nephrologist attributed it to my loss of appetite and low water intake and has currently admitted me for 2 days on Hydration via IV, multivitamin injections and appetite gain syrup. I have gained appetite and having proper food now as opposed to few days back, but my creatinine again spiked up to 10.5 today, I am confused Why and wanted to see if anyone faced the same thing.

Also my 2 dialysis and transplant is scheduled to start on August 18, next month, I had a few questions for anyone who has undergone it -

1. How much time.does one stay in the hospital after transplant

2. I have heard that you have to work from home for 1, year after transplant is that true?

3. Do you get back to eating normal food after transplant.

Thanks

He's 76(M) and also has diabetes so we're very limited with our options. We're from the Philippines so we don't have what's available in other areas.

Thank you for your responses

EDIT:

Hi!! Thank you all for your advice and I'm so sorry for the lack of information on my original post. To answer your questions:

He's Type2 Diabetic, with no insulin

His medications are empaglifloxine (for the diabetes) and amlodipine (for hypertension)

We went to a nephrologist who recommended only HALF CUP of protein and one cup of vegetable a day??? Which we don't follow because he often ends up hungry (he's still working by the way). He's only slightly overweight, but not obese or anything, just the typical grandfather tummy.

Other dietary restrictions include no carbs at all, we don't use any artificial seasoning, and extremely low sodium diet. We often substitute meat for tofu.

One of our main issues is that he heavily dislikes the fee flavor of herbs, so we can't use it in cooking, but then he complains about the lack of flavor.

As one of the commenters shared, the biggest issue is that recipes for CKD are bad for diabetics, and recipes for diabetics are bad for CKD

If I'm missing out on any more informations, please let me know 🥹 I'm so sorry again and thank you so much

EDIT 2:

I was wondering if anyone had any experience with supposedly "low carb/keto friendly" rice and pastas? does it still shoot up your blood sugar or is it manageable?

Hi, I am 26 M egfr 20, im trying my best to make meals for myself and take care of myself while having this disease and taking my meds, currently live with parents at the moment and they have issues with me going out every other weekend to concerts etc, i don't drink smoke or do drugs because of my condition, but because i have a food cheat day and go to alot of events they have come to the conclusion and keep telling me that i am going to die or end up in a coffin and that i am not responsible enough because im close to diaysis, to the point that when my mother told me she would donate her kidney to me when it came to transplant she then said she wouldnt now because of how irresponsible i am with my life because i go to events almost every other weekend.

is my support system truly abandoning me? is continueing to not isolate myself and is isolating myself going to make my disease worse and are they right about me going to die soon because of this?

any advice is appreciated.

I am just wondering if anyone here has young children with CKD? My son is 5 years old and is currently stage 2.

I suffer with panic disorder myself so I’m just looking maybe for some support from people/families going through the same!