Sibling (7+ years on dialysis, anuric) just moved from hospital to skilled nursing facility, on a liquid diet. SNF has not provided anything but broth and jello. (Despite asuring everyone they're experienced with liquid renal diet.)

Nepro is the only drink I'm familiar with and I can't get it delivered before Saturday. Is there anything else I can buy at Walmart or Target? It's a rural area without a lot of shopping options and Amazon doesn't overnight there. Sibling has been hard to reach, which is why I'm asking here.

Would I have any luck contacting their dialysis facility?

Yes, I know I need to raise hell with the SNF.

Thank you.

I just landed a great job which was too good to pass up. Otherwise I would've stayed on government-subsidised medical time off. I'm feeling anxious returning to corporate. I'm unsure if I can perform the same way before I got diagnosed. I don't even know if I can handle going to dialysis right after work 3x a week.

Is anyone else working full time that can give me some words of encouragement? I work as a software engineer so I for the most part don't do anything physical at work.

I keep getting this statement and it's so frustrating. THAT of all things is hard to believe for you??? What am I supposed to do? It's not even unreasonable to assume a type 1 diabetic is struggling with kidney failure

Everything hurts. Everything hurts. A lot. No matter what. I just want to cry.

Looking to hear from people who have done both. My creatinine is 12 so I know my days until I start dialysis are numbered. I was going to do home hemo so I could cater more to my work schedule but I’ve decided to do what’s better for me mentally at the moment and do in-clinic sessions. I know the ADA requires your job to accommodate you so im wondering how you all manage? Whats your schedule look like? Was it hard to work a situation out with your job? Did you reduce hours or just make them up afterwards?

EDIT: editing to add that I don’t really want to do overnight options, I have restless leg syndrome and shake at night so I’m restless and turn a lot, get up several times to pee & my cats stay in my room at night

Hi all

Just a few photos of a PD catheter belt made for me, as I see some of you complaining about storing your PD catheter while not in use

There's a full supraspinatus test on the left shoulder and it's preventing me from lifting or yet some easy tasks, shoulder gets fatigued and feels 'disconnected' very easily.

My eFGR is currently at 38, I have ADPKD, what's worrying me the most is my kidneys are already very large and I'm in constant pain on the sides of the waist and lower back.

I've always put off surgery thinking I've got all the time in the world but I feel like "ship's getting real".

Would it even be remotely possible to get such surgery when on dialysis or at some point after a transplant? My guess is it would make everything ten fold more difficult.

I am my friend's care partner and trained in PD connection/disconnection for him as he is physically unable to do it himself. Its likely he will be able to train to disconnect himself, but he will never be able to connect himself at night.

I'm sitting at a possibility of needing to drop everything for a family emergency any day now, and he wouldnt have anyone to connect.

If anyone is familiar with this (we've only been doing treatment at home for a week now), do you think it'd even be worth searching aide agencies to see if they'd have someone who could connect at night? We're looking into having a roommate train, but if she's not comfortable, I'd like to have a second option available.

Temporary hemodialysis isnt an option because it causes him a lot of very severe pain that lasts a day or two after treatment.

Discharge!

Just a silly joke I thought of last time I was sitting in a hospital bed.

My mom is in her late 40s and has always been told she has a shitty kidney and her blood pressure has tanked because of it a lot. She was told today she has to hop on dialysis but that means no more work realistically or very little work due to how tired it makes u feel or so I heard. I’m 18 and not really healthy by any means I abused Benadryl, alc,weed and nic when I was like 16/17 but I kinda stopped recently and only drink occasionally but still can’t quit nic. If I was to donate my kidney anyone know if I would be fine? I don’t really want to tbh but since it’s for my mom I could care less I’m just kinda scared that my one kidney will have problems in the future like 30 years down the line. Anyone that has donated a kidney a while ago lmk how they holding up?

Hey everyone! I’m a 20M who started dialysis in June of last year when I was 19. I switched to PD about 4 months later, and honestly, I really liked it. I felt like I had more energy, and having fewer fluid restrictions was a huge plus.
The biggest downside for me was all the boxes and having to hook up every single night. Eventually, it started taking a toll on my mental health.
On the bright side, I started my weight-loss journey shortly after switching to PD and ended up losing over 80 pounds! That was a big deal for me, especially because my nephrologist initially told me I was too overweight to even consider a transplant when I first started dialysis.
Unfortunately, I ended up switching back to hemodialysis after losing my home around this time last year. I was experiencing homelessness, and the shelter I was staying at had an issue with me doing my treatments there.
Since switching back to hemo, losing weight has been a lot more difficult, and I’ve been seriously considering going back to PD, even though I know I’d have to deal with doing treatments every night again.
So, I have a couple of questions for you PD veterans!
What are some tips or tricks that make doing PD every night less of a hassle? How do you make it fit into your daily routine without feeling like your whole life revolves around dialysis?

Can you set up your machine ahead of time and hook up when you’re ready for bed? If so, how long can it safely sit after being set up before you need to connect?

I’d really appreciate any advice, personal experiences, or tips you guys can share. I’m trying to figure out if switching back to PD would be the right move for me.
Thanks in advance! ❤️

My views while in treatment. This is why I do HHD.

hello, I've recently had my pd catheter installed 3 weeks ago and am scheduled to begin dialysis training this week.

my kidneys are current at 9%. The only symptoms showing are I'm tired all the time and my legs feel fatigued. Im no longer take the 50 min daily walks I use to.

How long before dialysis begins to make me feel better and what should I expect otherwise in the next month?

I'll be getting the overnight pd machine at home, if that makes a difference.

EDIT: Thanks for the words, I wasn't expecting a miracle just. hoping for some energy.

Guess I'll just have to be content with being alive and having the option to do this at home over the and not the hospital 3 times a week.

feeling noticeably colder all the time sucks too lol.

We live near Santa Cruz, CA and my father who was on PD just passed. We have quite a lot of 1.5% dialysate still in the boxes. The dialysis center says they can’t take them back. Does anyone have any ideas of what we could do with them besides just taking them to the dump?

So a few days ago after coming back from dialysis my dad started getting chills and shivering uncontrollably while his fever went sky high, for the first three days he refused to go to the hospital brushing it off as just a cold and only took paracetamol for the fever but when his condition got worse we took him to a hospital where they admitted him

He was admitted for three days where they told us that he had an infection in his catheter and after a day of dialysis they removed it so now he has his dialysis from his fistula and after they discharged him they put him on a week of antibiotics iv, he’s on his fourth day today and ever since he has came back from the hospital he just refuses to eat anything at all in the last four days he has only eaten a handful of grapes and some two boiled eggs, he says just looking at food is making him nauseous. And he still gets fever sometimes which only goes after taking pcm and a persisting dry cough and he keeps sleeping the whole day.

So i just want to ask, is this normal for someone healing from sepsis? He doesn’t speak, eat nor does anything he enjoyed doing before. Should we just wait it out until a week of antibiotics iv is done?

I need some feedback. My husband was put on hemo after PD dialysis kept failing and he got uremia poisoning. He hates in center and recently transferred to a quieter center with more professional nurses . Our previous nurses were horrid. I spoke to the dietitian and she and I had a good convo about HHD. I had put my foot down and said no to my husband on this because I was overwhelmed from the months of sickness and the needle and fistula seemed daunting. Plus in the only one working - I’m a teacher - and I can’t take 5 weeks off for training .
She explained that there is a “button” you can put in the fistula that makes the needle thing easier. The machine does all the work and he can do daily 2 hour sessions. She made it sound simplistic but if that is the case what is the 5 week training for ?
I’m going to look at a HHD center and get info. My question is how hard is this really? How many supply items do you have to keep ? What are the complications? And why the heck is the training so long . Basically give me the lowdown .
Thanks !!

I'm in my 40s, and really dread the thought of having to depend on family members for help. I'm not there yet, but getting closer is really frightening. I was thinking maybe get a license for a bike for easier navigation, but at on the other hand perhaps it could be a riskier means of transport.

At the moment I look "good" from the outside only, 6'2"~6'3" 190~195lbs, bodyfat probably 16~17%. I also wonder, will strength training/lifting weights still be feasible during dialysis?

Thanks in advance.

Is there any really high calorie food thats low in both potassium and phosphorus? Having a brutal time maintaining weight

Hi all,

First off, I want to thank you all for having this subreddit. It's been incredibly helpful to lurk on here.

I'm (38M) finally posting on here because I'm worried about my MIL (73F).

[more context than needed probably; discussion ahead of worsening physical health, incomplete information, poor mental health, caregiver perfectionism, and possible death / dying]

She's been diagnosed with CKD since the mid-1980s and has received two kidney transplants. Her husband died in early 2021 after dealing with cancer. We stayed with her a bit and then moved back home in the fall that year. She's dealt with some severe depression since then, and we've had concerns about her taking care of herself. He was the one who was on top of her medical information, and that hasn't helped.

In the summer of last year, she was diagnosed with congestive heart failure and didn't tell anyone. We learned about it a few months later at a family event, because her sister had learned about it. Over the next few months, I got proxy access to her electronic medical record and started keeping tabs on things. (I've had health issues since childhood and work on health equity / improvement stuff, so I'm pretty immersed in that world.)

Then, in December last year, she was hospitalized for about a week after feeling rough for a bit. (Again, that came out at a larger family event.) By the end of January this year, she had another 1.5 week stay and restarted hemodialysis due to kidney rejection.

She's gotten pretty frail since then. There have been a lot of ups and downs with her medication and tweaks there. Her BP was out of control for a large part of this year, and she's on I think 7 BP meds at this point. This summer, she started to do PD at home. We were worried about her living alone out in the boonies and handling PD, but she's doing pretty good with it. The DaVita staff that's been helping her is really great...

And also, I am noticing a trend. Mom's eGFR has continued to drop since late spring. Yesterday, she got labs done, and it was down to 6. We did call and talk with her about it last night, and she was concerned, too. I was texting with the PD gal at DaVita, who said 6 is common for patients on dialysis... but dropping consistently feels different.

Mom has also been talking a lot more about being tired of everything - increasingly so since January. Winter is her worst season for depression, and HCPs keep not refilling her antidepressant at random points as well. Her confusion and memory are getting worse, too, and she's having a lot of fatigue to the point where getting out of bed to eat or feed the dogs is even a huge lift.

I've asked her to think about a home health aid again. (She had one at the beginning of this year, post-hospitalization.) I go with her to appointments when I can, and keep tabs on her lab numbers. I try to help her remember which medications she has to take when and the correct way to do that, since she's not always taken her medications the way she's supposed to. We go spend time with her as much as we're able to with working full-time. It feels like we're doing all we can to support and keep the broader family informed, too.

I try to approach mom with the notion that I'd like to be approached respectfully in a similar position. We both have rare & possibly fatal conditions, and I think that's given us a really great bond. That means that it's not necessarily hard to meet her where she's at and think through things that may help. But, actually deeply considering where she is at - it's something that I don't have experience with. (My family and I don't talk.)

We're going over to spend time with her this weekend, and I'm honestly not sure what to do. The logical side of my brain really wants to have a frank conversation with mom about the lines she doesn't want to cross as it pertains to her health, general well-being, and quality of life - and where she is right now. I've been very death positive with her, reminding her than any choice is hers to make - and all that doesn't mean we have to like it, but we will respect it and help her with whatever we can.

At the same time, my gut instinct says this feels different and that something is wrong. It may not be something that can be fixed or addressed, but this isn't like other times I've been concerned about her health, ya know?

Am I overanalyzing things? Is 6 a normal eGFR for someone doing PD at home? Should I hold off on having a conversation with her about her quality of life and boundaries? I just want to make sure I'm making the most right choice that I can to do right by her.

They will find a way to make it all about themselves. If you believe any of them will be understanding or supportive towards you with such a difficult decision, good luck. Your last days will not be peaceful, they will guilt trip you, they will expect you to manage their emotions because it's your fault you're doing this to them. I feel extremely lonely in these times now. They will treat you like a mentally ill person because clearly no one could reasonably come to the decision they don't want this kind of life. And therefore they think they need to convince you otherwise with effort. I haven't asked anyone to talk about this, apparently it's not a choice and I have to justify myself to everyone. My mother especially makes me feel like my life belongs to her, not myself, I am expected to suffer for her forever. None of this is love, it's just toxic attachment and addiction. Nobody cares about you and how you feel.

I can tell you they almost push you into committing to it 100%, it's a disgusting feeling to experience how self centered people are. I understand this may be a difficult time for them as well, but how they make me responsible for it and deny me any autonomy is sad and suffocating. They achieve the complete opposite with their behavior, I WISH someone finally cared but oh well, they're the victims. I had already talked to my dialysis team about ending and started preparing but I received a phone call from a woman in a clinic I previously planned to go to and I feel like she is fighting for me and truly cares which made me second guess, among some other things. At least delay it for a bit and try one more thing, I have other issues besides the kidneys which play a part in my decision. But now I have a bunch of hysterics around me pressuring me and stressing me the fuck out. My advice, just don't ever tell them. If it's time just disappear or say you go on vacation and go to a hospice center or hospital or whatever. Or hey, maybe you have more luck with your family.