How many here swim on PD? I'm a water baby and when my doctor said no lakes or public pools I started crying. Has anyone tried using tagaderm bandages? Any suggestions? I just want to lay on a floatie in the water.
I've been reading more about hydration and kidney health lately, and I realized a lot of us either don't drink enough water or suddenly try to drink a huge amount all at once.
From what I've learned, hydration needs can vary depending on your age, activity level, the weather, and even certain medical conditions.
It doesn't seem like there's one "perfect" amount that fits everyone.
I'm curious about your experience.
Do you keep track of your water intake?
Did increasing (or even adjusting) your water intake make you feel any different?
Any simple tips that helped you stay hydrated consistently?
I'd love to hear what has worked for you. Real-life experiences are always more helpful than generic advice.
Note: People with kidney disease, heart failure, or other medical conditions may have different fluid recommendations, so it's always best to follow guidance from their healthcare provider.
Hey, I was diagnosed with ESRD less than a month ago, and the doctors were never able to figure out why my kidneys failed at such a young age. I've had this chest port for about 3 weeks, and trying to shower is the bane of my existence. Any tips on what to use to keep the port dry? I'd bathe but im a bigger dude with a tiny bathtub.
I'm newly on dialysis and curious on how people find work while getting treatment. I hear a lot people just opt to get disability but how do people do it and find work.
At my clinic the earliest they can seat me for hemo is 7am and I finish 11-12pm so makes me concerned about being able to find a 9-5 if I am not able to work two out of the five work days.
Also I'm not too familiar with US work laws at the moment when it comes to this stuff. Is the employer not able to consider my health when hiring me?
I understand there are home treatments and PD to consider but the short term i'm not opting for that at the moment. There have been issues with treatment at the clinic I would feel more comfortable with the nurses handling.
Well thank you for your time in answering my questions.
Edit: oops I meant "while on dialysis" for my title
Hello, I am A32 M dialysis patient. I've been recently having a lot of low blood pressures in my dialysis arm. Keeps like spazzing out in both of my forearms, keep having muscle fatigue.I have no idea what to do who to call and how to get over this
On the one hand in "my" center we get scolded at least once per fortnight to NOT eat processed food including "supermarket bread"...
On the other hand the early shift (7 to 12 AM) get's served prepacked sandwiches (like you get at a truck stop/supermarket) and we of the middle shift (1 to 6 pm) are served pre packed slices of cake or the cheapest pre-packed croissant filled with "chocolate cream".
So, highly processed garbage is ok if the center serves it but if you dare to bring a muesli bar from home you get a lecture about the dangers of highly processed food!
I've been on PD since February and have hated it ever since, not only are my labs getting worse; but dealing with the catheter and "full" feeling makes it hard to get any sleep and overall just annoying to deal with. I am about to switch to HHD and get my CVC procedure done in 3 days. Anyone have experience with both?
I had my surgery last Tuesday and I'm struggling quite hard with the changes my body is experiencing. The swelling and the bruising freaks me out. I'm already on immune suppressing medications from my heart transplant, so I heal slowly. I'm fairly young (31) and it's hard to talk to people around me, I don't feel like they understand. Any advice would be appreciated, or even just to know I'm not alone.
In center HD patient here, been living the life for about 2.5 years. Through restrictive diet (moreso than even the dietician says), forcing myself to exercise/move every day, pills, both script and non script supplements (with nephro's knowledge), and keeping detailed notes on everything, I've managed to alleviate many of the symptoms and live a semi normal life.
However, I have one pain in the ass problem I haven't quite solved; when I get my iron shot, I stop pooping for several days. It eventually causes pretty bad stomach aches. This happens at least weekly, sometimes more often if my iron is low. I do use miralax since it's more kidney friendly, but requires extra fluid intake and is not immediate. I tend to only use it on my long break, since it can be unpredictable and once kicked in while I was hooked up to the dialyzer. Are there any other suggestions for quick acting, more predictable laxatives? I used to use magnesium citrate, and it worked great. Just chug a bottle and within an hour or so, massive relief, then it was done and back to normal. But I've been told that it's not great for kidney patients. I'll be asking my nephro the next time I see him, but I always get input from many different sources. I like having lots of info. Thanks.
PS. I get the "No Photography" bit on the signs as cover-your-ass semi-legalese since all smartphones have cameras.
For anyone who passed away from the group,
May God admit into paradise Amen.
I (22F) have been on dialysis for 4 years now I do hemodialysis and I have a fistula in my left arm, and I don’t really talk about how much it’s affected me, but lately it’s been weighing on me a lot. I feel like it’s changed the way I see myself in ways I don’t always know how to explain. It’s always just something yk? Either the treatments or the schedule or how my hair falls out all the time no matter what I do, or that I’m always in pain no matter what I do or where I go and I can never just fully be present and enjoy myself without something hurting, or how for 3 years straight I couldn’t bathe properly because I had a CVC and it lowkey changed my perception about myself and how I view lot of things, I never feel comfortable in my body anymore because my weight is always fluctuating and my hair falls out like crazy that shit makes me so insecure just because I before Dialysis my hair was so thick and nice and then I started Dialysis and it just it was so bad in the beginning I was going fucking bald, and it’s definitely going better overtime but it’s just like anytime I brush my hair or I run my fingers through it. There’s gonna be like Hella hair falling out like I feel like a cat. I feel like I’m shedding all the time. And TMI as fuck, but you know what when you’re in this type of situation in this medical situation there is no TMI. I can’t shit like I’m always constipated as fuck. I can never do anything about it like no matter what I do and it hurts every single time MiraLAX is my best damn friend but half the time she don’t even work either, and none of my friends understand because all of them are just regular normal people with regular working kidneys so they could never possibly understand what I go through and I tried to talk to them about it, but it doesn’t matter nobody gets it, nobody understands. I can’t seriously have a sit down conversation with someone and them understand what I’m going through. I’m asleep all the fucking time when I go out places with my boyfriend or even if I do go someplace with my friend, I wanna leave 10 minutes after “wanna go on a walk?” “Fuck that I’m staying in the damn car” like I can’t do anything I feel so stunted I feel like my growth is stunted I’m 22. I should be driving. I should have a car and I can’t because I have had too many seizures that the DMV said I’m unfit to drive so I can’t drive. I can’t have a car I had to drop out of high school when my medical situation and everything first started flaring up and my kidney transplant was failing and then I later started Dialysis so I had to drop out of high school (though I did get my GED and I am actually super proud of myself) like I’m tired as fuck all the time I feel like a failure all the time like I just feel like a fucking failure. I want to start college, but I just don’t have enough mental health and energy, I just feel like I’m always sleeping or I’m at Dialysis or high as fuck. I have to smoke Hella fucking weed. I’m like a major pothead just to get some fucking energy so I’m high as fuck all the damn time and that’s bad on its own with that too, but I just don’t know like I just don’t know what to do, like I need friends that are on dialysis and in my age range or something like do. I know I’m being Hella blunt yall but I’m sorry I have to be and I guess I just needed a place to put that into words
All of you going through this are legends nothing less,
May God be with you and guide you to light.
Stay strong legends, you are true warriors
Blessed Friday everyone!
The Quran states: "...And do good. Indeed, Allah loves the doers of good." (Surah Al-Baqarah, 2:195)
Beit Al-Khair Society has launched a new humanitarian service for dialysis patients, as part of its "Treatment" project.
These patients are referred to "Al-Tawar Dialysis Center", which the Society contributed to building and is managed by the Dubai Health Authority.
Dialysis patients need your support and prayers, so contribute with us in supporting them, May God reward you greatly!
Here’s the link to donate:
https://beitalkhair.org/en/epay/dialysis/
Thank you for taking the time to read this.
Mother recent started her dialysis using the fistula on her left arm. Before, she was using the chest catheter. It's been about 2 weeks almost since the swap.
When I came over to see her today, I noticed a bruise on the fistula area. Mother doesn't know exactly when it started.
My question is... Is this normal? Will the arm always be bruised due to constant needle poking?
In 2014 my dad had both kidneys fail at the age of 47 due to a mixture of high blood pressure and the side effect of the medicine he had for that. Ever since then he's been in the hospital about 2 more times for different reasons related to the failure (once in 2016 and once in 2023) and both scenarios left him in ICU for days (thankfully he recovered and made it out of there) but his mobility and overall health has been declining slowly as of late, what used to be a small limp due to a bone disease from lack of calcium/phosphorus left him with a cane that we had to eventually switch out for a walker, and now a wheelchair seeing as he can barely stand under his own weight and has been falling more and more recently. His back and sides constantly throbs and aches because of the bone disorder than had deformed his ribs and back so that now he has a hump that he never had before and his ribs are spreading apart. He still goes to work, he's an opthalmologist who loves his job, but it's incredibly strenuous for him in terms of transport seeing he's gone from walking with a walker to now being wheeled in. He's incredibly independent and doesn't like being driven but unfortunately we have to now, and he requires a lot of help to stand up and move on his own. He's going to be 60 this year, and it's hard seeing the strong man youre used too be brought down to this by such a horrible failure. And as of late it's been getting to the point where he can't use the bathroom as easily as he should because of him using the walker to walk there. I hate to be a pessimist but I genuinely want to know, how long do you think we have left with him? I know you can't prepare yourself when death comes, but I just need to know.
Any insight, help, thoughts, even words of encouragement would mean the world. Thank you ♥️
And I wish you all the absolute best, and healing on this journey whether you're a caretaker, a patient, in the medical field or whatever the case may be
Hi, my mom started dialysis 4 months ago, she had a big bald patch on the front of her hair almost two weeks after and then it started going downhill quickly from there. Dialysis is hard as it is and she feels like she’s losing her femininity as well. Her nephrologist tells her her blood work is within range, she has ferritine in range, I saw the blood work and it’s true. He said he doesn’t know what makes her keep losing hair. It also tends to matt quickly.
Was this one of your dialysis many ugly sides? Anything that worked for you?
Google says it happens to 10% of dialysis patient and tends to grow back after 6 months, but with the way the shedding is going..I think she’ll be completely bald by 6 months and it’s really weighing on her.
Pic from google just to show you an example, her case is worse.
posting this as maybe some others could relate or they’re in the same predicament as me… i’m 18, ironically enough i’m writing this inside my clinic right now. i’m going to be going to college next month and i’m kind of posting this as hopes that i can get out of dialysis before i start. maybe i’ll get lucky. currently waiting for transplant kinda? my doctors keep putting appointments so spaced out from each other that it makes transplant seem farther away. i’m o+ the internet says it’s common but i’m kind of worried that it really isn’t. i also don’t have anybody i could ask to my knowledge. but my dialysis center wants me to move in to my dorm and pursue dialysis there, i obviously don’t want to do that. is there anybody here who may have did it while in college and can give me some kind of advice or anybody who’s done something relatable to it.