I don't know if this is an appropriate post for this sub but I feel like I need to get this off my chest or to at least type it out for once. To vent, I guess. I tried to talk to a psychologist and a therapist a couple of times but couldn't open up to them about this. Posting this anonymously seems, I don't know, safer?

I'm 27 and I have been on dialysis for about 8 years now and despite my doctors insistence I'm not on the transplant waiting list. I feel like I'm not good enough and that I don't deserve a transplant, like I'm broken or that there's something inherently wrong with me and I don't think a new kidney would change any of these feelings. I'm a loner, I have no job, no hopes or dreams, no talents, no ambition, nothing. So the thought I might take someone else's chance at a better life makes me sick. Other patients in my clinic have families, friends, careers or future plans and are so determined to get a kidney transplant, I'm completely inadequate compared to them and probably everyone else on that list.

And I wish I could be happy or content with all of this, and sometimes I am, but sooner or later these thoughts creep back in and the self-pity along with them and it makes me hate myself even more. I'm lost, alone, scared and anxious. I don't know how to deal with these thoughts and feelings.

Hi all,

My father (73) passed away yesterday extremely unexpectedly. I don't live with him so I wasn't aware of how sick he actually was and he refused to go to the hospital for a long time. In the meantime, he had diabetes, high blood pressure and a uti that eventually led to kindney infection and failure. He was severely dehydrated, couldn't move and our family who lives around him finally took him to the hospital. His creatinine level was 9 and his potassium level was 5. The doctor decided to do emergency dialysis because they considered these test results life threatening. He also had kidney stones. 30 minutes into dialysis, he went into cardiac arrest and passed away despite the doctors trying CPR, etc.

I'm just confused how this happened. Is a cardiac arrest common? Were we just too late in taking him to the hospital? Could he have been saved if we got him treatment earlier?

I feel awful as I live in another country and had no clue that he was this sick. We texted everyday and I just feel so guilty that I wasn't there for him.

Is it even possible?

So I turn 26 at the end of November which ends the current insurance i have under my parents. I'm running into trouble getting Medicare and even if I did there's still like a month waiting period. Medicaid is the same at like 45 days.

My question is is am I totally screwed? Is there any insurance i can get quickly to cover me for December and January until I get Medicare and/or medicaid online?

So I’m 23 M started dialysis in January I have noticed recently in the last few weeks I have been more tired after dialysis and been feeling more worse and sleeping a lot after dialysis and been feeling more worse in general I also work on my non dialysis days and do university course work when I’m on dialysis when I started dialysis I January I felt the benefits but now not so much any advice would be great! Thanks

I’ve recently had a close family member go through dialysis and it took a big toll on them mentally and emotionally. They often talk about how it’s so taxing physically that the motivation to follow guidelines isn’t there. One thing they were really appreciative was a man who came to the center to sing for everyone just as a small source of adding positivity to the day. It seemed to have a profound impact on them. I would really like to contribute in some way, (cards, postcards with art work, etc) based on my family members experience but I understand that’s only one experience. I wanted more perspective from people who are experiencing this about the appropriateness of this? Are there other ways to show a token of support or would donating some supplies to the center for people who cant afford it be a better way? Any input would be appreciated.

I am on CAPD 4 times a day and have to carry 2 Kg of Dialysis solution in my abdomen all the time. I have the option of switching to APD using the cycler overnight. I was wondering if I still have to carry the dialysis solution in my abdomen during the day after the cycler does its work overnight.

I was diagnosed with diabetes in 2020, i didn’t know anyone with Diabetes, i wasn’t educated on Diabetes, i thought it was bo big deal, my doctor prescribed me a glucose monitor and gave me these horse pills to take 3 times a day, i didn’t know how to use the glucose monitor had to go on youtube to learn, then pricking my finger 5 times a day sucked, so after a few months i said “fuck it” and stopped everything, mid 2023 i got this sore on my right foot it wasn’t bad and i would keep it cleaned and bandaged it went away for awhile then came back but was worse when it came back i again kept it cleaned and bandaged but then it got to the point where it started hurting but I’ve had this happen before and after tending to it it eventually went away but this didn’t, well it got to the point where one day i checked on it took the bandage off and it started spurting blood everywhere and making a sound like air was being pushed out “that was the infection” my friend rushed me to the ER and they told me i had a bad foot infection, they transferred me downtown after 2 days and the Podiatrist came in said its not bad its severe and they are gonna have to amputate the toe bones “trans metatarsal amputation” so now i have half a foot, i was in the hospital for 2 weeks, while i was there they asked if i was taking care of my diabetes, i didn’t put 2 and 2 together i was dumb after they educated me on diabetes i got a call from a Nephrologist he told me because i ignored my Diabetes for so long it affected my kidneys to the point that soon i will be on dialysis by then i was already at Stage 4, fast forward to June 2024 i went to work felt like i was dying my manager drove me to the ER and thats when i learned my kidneys stopped functioning they put a catheter in my chest and i been on dialysis since June, and the catheter triggered my A-fib that i didn’t know i had now i take blood thinners and have a Cardiogram to check on my A-fib, the hospital had to do the cardio shock to get it back into rhythm and that alone put me out of work for 7 weeks, so what I’m saying with all this is, i hate myself I’m so dumb and mad if i wasn’t such an idiot and took care of my diabetes my kidneys would be fine and i wouldn’t have to go to Dialysis 3 days a week for 5 hours, the toughest thing for me is Fluid Intake when i was clueless about the Diabetes i drank ALOT of water sometimes 2 gallons a day, now I’m limited to 1.5 liters a day and its really hard… i try not to be mad at myself but its really hard my family doesn’t support me so I’m on my own….

Just wondering who gets SSDI. Are you getting it while working a little each week or no?

It was suggested that I try applying for it. I work but I work too many hours to qualify at the moment according to SS. Do you think I still should do it? Maybe ask to get my hours reduced at work. I am part time but work less than 30 hours a week

Does anyone know the range the VENOUS pressure should fall in during HD? Today, I am getting numbers in the low 300’s.

So I get very hungry after dialysis what are the best foods to have after dialysis as I get very hungry and eat junk but I want to loose weight so need something healthy and something that would stop the hunger!!

So when I go for HD treatments I gets really uncomfortable having to sit for so long. Is there any recommendations that anyone have to make it more comfortable. I take blankets that I usually take

My dad recently started dialysis and it is as if he goes out of his way to make it difficult. He refuses to get out of bed (he is a bit weak because he had stopped eating before dialysis started. He continues to refuse food. I literally begged and bargained with him to eat, only for him to eat four spoonfuls. We had to literally drag him out of bed for his last session because he was refusing to go. It almost seems like he has regressed cognitively, which is making it so difficult for us to take care of him. I wonder if anyone else has gone through a similar experience.

Edit:

Thank you to all those who responded. This discussion gave me a lot of insight into the experiences of people undergoing dialysis. The doctor was very insistent on my dad eating to regain the lost weight so I was panicking and becoming frustrated. I'll do my best to understand him and meet him where he's at, and patiently wait to see if there are improvements.

Baxter PD patients with partial or missed deliveries, did they make it up to you? If so, how long after your scheduled delivery date did you get more fluid?

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The last delivery day, they only brought my husband enough cycler bags for 14 days, so I'm trying to decide when I need to panic. I did let the nurses at the clinic know, but unfortunately, they can't control what Baxter does. Or is Baxter customer service being helpful with issues like this? I've called the 800 number for trouble shooting the machine a few times, and they were helpful, but I doubt they can help with running out of cycler bags.

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My dad has recently started Dialysis. He's getting twice a week now but he doesn't want to attend all the sessions. What will happen if he misses two days a month?Can anyone help me with their experience?

Everytime I have dialysis after my treatments I feel light headed and sweaty like hot flashes throughout my body or something anyone else or just me

DialysisRN

Hi All!!! It's my second week of using my fistula. Wondering if any of yall do hot compresses for comfort? Or any tips. It's still early but I feel like a baby...I really don't like being poked constantly. Will this area now constantly be sore? Of course it's early and I'm on the small needle. I think with time my body will adapt to the pokes. It's still a baby fistula so they're only using one line most of the time. It's been harder keeping my arm still and straight the whole time I try to sleep so I don't over think it lol

Before anyone starts, yes I know how much sodium is in ketchup and BBQ sauce. There are also plenty of low sodium alternatives out there. What I want to know is, do they count as fluids for the purpose of a fluid restricted diet?

I just want to share something that helped me tremendously. I started HD little over two years ago. For some time I din't have major issues with removing water during dialysis. Then, a few months ago, I started to cramp up already 30 minutes into dialysis and we had to stop UF and get only dialysis. I did have a pretty significant water retention, my body just couldn't take it. I had full body cramps for the rest of the day, headaches, nausea, vomiting. Was completely drained, unable to breathe. I had to get extra sessions only for water removal which I went through easily, no side effects., but it was frustrating. My nephrologist told me to try something different and it works like a miracle. I have 4 hours, so in the beginning before HD for one hour we do only water removal, about 2 liters. Then we start dialysis while removing only 500 ml for 3 hours which my body tolerates pretty well and it doesn't drain me for the next two days. Huge difference. I feel so much better. Just trying to figure out what makes such a difference between water removal during dialysis and just water removal. I am also on water pills (Bumex), but I don't pee much anymore. Does anybody have a similar experience? I apologize for my English, Thank you.

For the last month during the last hour or so of my HHD session I start to get really hot to the point of sweating even though my room is pretty cold. It feels as though I am heating up from the inside out. I didn't think anything of it and just assumed it was my body reacting to the dialysis chemicals.

However yesterday I had an incident where when the nurse was taking me off a needle slipped and blood got everywhere. Whats odd is that my blood felt significantly hotter than it has in the past when other incidents have happened. Not only that but my nurse also noted that my blood was really hot for some reason.

Has this happened to anybody else? Is there something wrong with my machine? Could i be getting "to much dialysis"? I've been doing HHD every mon/wed/fri for 4 hours for about 4 months now and have only had this issue in the last month.

Sitting here in dialysis and I have a weird twinge in my side and i have to keep trying to stretch my leg out. It's very uncomfortable and it makes me squirm around excessively. What is that can anyone tell me?

I am on manual PD. Today at clinic I was told that due to shortages caused by hurricane Helene that I would do dialysis every other day. Has anyone else been told this? I can see that this won’t go well for some. Regardless I hope this doesn’t last long.

I have a PD nurse who doesn't appreciate questions. So - I'm sorry for asking this group, and I will not deviate from the prescription - but does a larger fill affect the time dwelling to achieve the the same filtration result?

TIA.