u/tuesdayreyn

I had about 12% kidney function left when I started dialysis in July. I still make pee, although my output has decreased but that could be explained by me restricting fluids consistently. Over the last two weeks, I've been urinating pretty regularly and twice now I've been awoken in the middle of the night with the desperate need to pee and I've dumped a lot of fluid both times. Both incidents happened after I'd had a day where I got more ohysical exercise in than usual. The last two weeks, I've only gained minimal weight between sessions. Between Thursday and Saturday, I only gained 0.2 kg and I ate breakfast in the parking lot right before walking in to be weighed so the food in my stomach would account for some of the weight gain. The previous day, I'd had roughly 64 oz to drink. On Saturday, they drew a bunch of labs and said they're testing kidney function. They told me, and I understand that this doesn't mean I'm cured obviously. It's just weird. Have any of you ever experienced this?

I'm just overwhelmed with everything I have on my plate rignt now. I can't go a single day without my phone blowing up with this doctor's office or that doctor's office or the insurance company reminding me that this doctor or procedure isn't in network. In addition to 3 dialysis sessions this week, I have 3 other medical appointments plus my transplant coordinator reminding me I have to make a dentist appointment by next month. My child needs an eye exam, a tooth pulled, and a checkup. Literally every single day, no matter how exhausted I am, the phone rings for medical appointments or medical bills or "please take our survey about your recent medical appointment" multiple times a day.

I can't tell anyone about it hecause everyone always says, "it's your health. If you don't care about your transplant...if it were me I'd do everything to stay alive. But if you don't care..."

I do care and I'm doing everything I'm supposed to do. But I'm so tired. I walked out in front of a bus today because I was too sleepy to pay attention. I can't even just get in the car and drive to these appointments because I'm visually impaired on top of everything else. I have to figure out child care and rides for everything too.

I just needed to complain to someone who might get it.

I have to be at dialysis very early at 7:05 a.m. My sister in law drops me off and babysits my daughter. On dialysis days, we stop by McDonald's on the way. That way, my child can sleep until the last minute and doesn't have to get up earlier to eat breakfast before we go and my sister in law doesn't have the additional burden of making her breakfast that early. It's also a way of saying thank you to her for bringing me and babysitting. She doesn't charge me beyond occasional gas money.

Anyway, I get either a kids iced tea (12 oz) or an apple juice box (6 oz) to bring to dialysis wirh me. I sip on it the whole time. I don't bring food in.

In our center, it's an open room wirh rows of chairs spaced several feet apart. You can see and have a conversation with your neighbor if you choose, although no one really does. Everyone is sleeping or on their phone. Anyway, the pasr couple sessions, they've had me in a different chair than normal. I've noticed the guy next to me eyeballing me but whatever.

The last tjme, I noticed he was trying to talk to me. I'm partially blind and wear headphones at dialysis, so it can take someone a moment to get my attention if I'm looking at my phone. I started to explain that I wasn't ignoring him and he cut me off.

Said I was rude. That most people there care about their health and don't eat and drink garbage. I'm making it hard for others who are trying to stick to their diet and fluid restrictions. That day, they were out of juice and I got a 12 oz tea instead. The cup has the big M on the side so it's easy to tell where it's from. He also starts around the same time as me. So probably sees me feeding my kid out of a McDonald's bag in the parking lot when he walks by. We park in the handicapped spot up front by the doors so anyone going in walks by the car. He told me that's probably why I'm on dialysis in the first place.

He was real mad. Like, bro. Even if I rolled up with a 32ox coke, that's my business. Secondly, McDonald's iced tea is brewed fresh, meaning it doesn't have added phosphorus. It's relatively kidney friendly. It's something most people on dialysis could work 12 work 12oz of tea into their fluid plan if they desired. Whether they'd want to is their decision though. I just put my headphones back in and ignored him. It was just such a weird interaction. Later, I had my earphones off talking to the nurse and I overheard him asking a tech what the rules about bringing in food and drinks were because "some people bring whatever they want."

I have the catheter in my chest for access. My center cleans it and changes the dressing for me at treatment and I was basically told not to mess with it. They have 2 types of dressings. One is a white bandage. The other is a tagederm and gauze. The white bandage itches me like crazy if it gets a little damp. I do my best to keep it dry, but I can't help sweat. I've also been getting little scabs and sores under the bandage that bleed, making the itching worse. I scratch in my sleep. One day, i woke up with much of the bandage scratched off. Luckily it was a dialysis day and I go in early for that and I hadn't torn it off all the way to the spot where it goes into my skin. They switched me to tagederms and it's been so much better. The irritation under the bandage has largely cleared up and it doesn't itch. Yesterday they told me they weren't getting the tagederms back for they don't know how long. They won't allow me to buy them and bring them in myself. But they said they can't stop me from changing the dressing at home, but they couldn't advise me on how to do it, because their policy is to tell me not to mess with it. I'm scared because it was drilled into my head that if I ever touched it or messed with it at all, I would get an infection and die. Please tell me its not that hard and is ok to do.

It occurred to me that doing in center hemo is a lot like flying economy. You're in relatively close quarters with people who'd rather not be there, but have no other options for reaching their destination. You're stuck in this space for hours. You just have to tolerate all the snoring, farting, loud cell phones without headphones, general discomfort, and people all around you. Just heing a little silly but I was stuck in a chair next to a fellow who was playing music on his phone out loud arguing with staff who asked him to turn it down.

*I didn't complain about said man. I put my own ear buds in and pulled my hood over my eyes to listen to my audio book like I normally do. But his phone was loudnaf so I imagine someone else was mad.

I had tbe first of two surgeries to place a fistula yesterday. They said no to general anesthesia and said a nerve block on my arm and sedation was safer for a dialysis patient. It ended up paralyzing part of my diaphram.

I stopped working in February. We've been getting by with my husband's income, but due to an injury, he's had to reduce his hours. I've applied for SSDI. My old job reached out to me about returning part time. It would only be 1 or 2 days a week. The reason for applying for SSDI is I have end stage renal disease. I don't want to risk my SSDI claim, but we're drowning. I absolutely cannot work full-time

I have end stage renal disease. I was told by many people that esrd is an automatic approval. I applied today over the phone. Is there any chance they'd deny me?

I completely cut out soda cold turkey before I went on dialysis. I'm also a diabetic. I really only drank soda when I went out, I never really bought it for home. I've cut way back on eating out and there's no kidney friendly soda options that are also sugar free at restaurants, so I've just not had it but 1 time. Today after dialysis, my sister in law picked me up. She also keeps my daughter on dialysis days. Anyway, she had my daughter with her and my daughter was asking for McDonald's. We pulled into the line and the screen was advertising diet coke. I just wanted it so bad. Phosphorus be damned. I got a small diet coke with extra ice to offset how much diet coke I'd actually consume. For the first time since starting dialysis, I felt somewhat alive. I always feel like a walking corpse after treatments. Weak and lethargic and exhausted. I didn't feel great, but I stayed awake instead of crashing for six hours. That hit of caffine felt magical. How are my fellow dialysis patients getting their caffeine fix, aside from black coffee? The kidney friendly soda like sprite don't have caffeine.

I was advosed to get some protein bars by my center as I'm not gettijg enough in my diet. They gave me a sample of a Jimmy bar. It wasn't the worst thing I've ever had, but is there anything you folks like better? Need something lower in carbs and sugar as I'm also a diabetic.

It happened. I got cramps today. I've had mild cramping before, but not massive cramps. I had an extra dialysis session today due to being over loaded with fluid. It was almost over, like 10 minutes left. I thought I could wait it out, until it really hit me. I've never been shot but that's what I'd compare it it. It was the worst thing I've felt next to child birth. I was screaming and crying and making a fool of myself. I actually threw up a little. They put me on oxygen because I was hyperventilating. Then, it was over as quick as it began.

My husband has been in the US since he was an infant. I'm not sure what path he rook to get it, but be received his permanent resident card (green card) 13 years ago, a few years before we started dating. I'm a US citizen and we have a child who's also a citizen. He's always worked, often 2 jobs and we've never been on assistance. I got medicaid before we got married, but he's never got benefits. Recently, I was diagnosed with end stage renal disease. I've not been able to work and I'm applying for SSDI. He was working 2 jobs to keep us afloat. Last month, he got into an accident and had to take unpaid time off work. His full time job has let him come back to work, but his part time job hasn't. We also got really behind on bills while he was off. Our credit cards are nearly maxed out just keeping the electricity on and food in the house. The ends are just not meeting right now. I'm looking for work, but I'm really sick and have dialysis 3x a week and it affects my availability for work. We've thought of applying for foodstamps to help, but I'm not sure if that could hurt him.

Ok, that was kind of click bait. I'd rather not be doing this, none of us want to be doing this, obviously. If you look at my post history, I've had some issues. But since this is reality and this is how I'm alive to be with my child for however long I have left, I'm trying to see the positive. I do in center hemo 3x a week. I was just thinking, that sure it's inconvenient to give up nearly 15 hours a week, but also it's like I get nearly 15 hours a week to myself. I curl up in a somewhat comfy recliner and nap, watch shows on my phone, or read for 4 hours, largely without interruption. No one needs me to do anything but sit still in this chair, and even if they did, tough luck I'm in the chair the next 4 hours hours regardless. Before I got sick, I had no time for stuff like that. I've read five books since starting treatments, more than I've read all year. I've developed a routine. The diet is hard, but I've found that I can stop for a McDonald's hashbrown and a coffee on the way to dialysis and the machine will suck the potassium right out. It's how I stick to the diet the rest of the week, knowing I'm going to get a lil treat on treatment days. Maybe I can't get away with that forever, but for now I can. My labs are good because I work hard on the diet the rest of the week. There's a few people who start around the same rime as me and we meet up in the waiting room and laugh and joke every morning bedore chair time. I have a favorite tech who's really funny and it's always a pleasure when I get her. I wish I wasn't sick. I miss my old life. The freedom I had. I hate worrying about what could happen. But while I'm here and it is what it is, I'm finding light in the ways I can.

TLDR: center forgot me in waiting area, delaying treatment and made me sign papers saying I refused treatment.

I need your thoughts on what happened at dialysis yesterday. My chair time is 7:25 am. My husband pulled up to the front doors to let me out at 7:15. I glanced at the dash clock as I got out, so I know the time. I followed another patient into the office. At my center, there's a waiting room you walk into that has a receptionist desk, but there's never anyone there in the mornings when I go in. There's restrooms you can access and another door that leads to the treatment area. That door is locked with a key pad lock. Staff has to let you in. There is a doorbell outside the door to ring to let them know you've arrived. The other patient I walked in with rang the bell and we sat down. There was already another patient waiting, someone who has an earlier time than me. A few minutes go by and they come and call the person who was already waiting and the patient I came in with. I'm still waiting. It's 15 minutes past my time and I am still waiting. I don't think too much of it, because they've ran 10-15 minutes behind before and the patient who was in the waiting room when I arrived was also waiting past his time too. At 35 minutes past I rang the doorbell. No one ever came. Ten minutes later, another patient came and rang the bell. She usually starts after me, but was running later. 15 more minutes and no one comes. Finally, we see a staff member coming in to work. He does some thing administative. He's not a nurse or tech, but says he'll let them know we're waiting and goes back. 15 more minutes pass and the nurse finally comes. She seems surprised to see me and says she thought I wasn't coming. I've never missed dialysis. I'm always 20 minutes early, only two times I've been just 10 minutes early, and I've never been late. Anyway, my catheter is acting up and they have to administer blood thinners and wait for them to work. In all, it was 2 hours past my start time before I got on the machine. I askdd my nurse what happens now, if I could stay over or what. I was told only of they had extra space and didn't need the chair. Eventually, it was pieced together that my assigned tech said he checked the waiting area at 7:20 and didn't see me, marked me as a no show, and went on break. I was for sure there at 7:20. When I finally met the tech, he was someone I'd never met. He also didn't know the nurse by name. Last week one of the usual techs on my days mentioned she'd be going on vacation, so I think he was a floater from another location sent to fill in. I've met a couple who pop in to help one day then I never see them again. I am a woman, but I have a masculine first name. Think along the lines of Stevie. It's happened several times in my life that someone has saw my name and expected a man. I suspect that's what happened here. He saw my name, didn't know what I looked like, and checked the lobby for a man, didn't see one and went about his day. To make it worse, my daughter cracked a tooth. I booked her an urgent dental appointment late in the afternoon thinking it wouldn't interfere with treatment. I couldn't have stayed the whole 4 hours even if they had the space. They had me sign a paper saying I was refusing my whole treatment ama. That rubbed me the wrong way. I was on time. I wasn't refusing treatment. I arranged my schedule to be able to do my whole treatment, had it started on time, with a buffer to accommodate any unexpected delays. I just couldn't account for their mess up. The center seemed short staffed and more chaotic than normal that day too. I've heard refusing treatments can be a reason to deny transplant, so I hope this doesn't affect me too negatively. To top it off I think the nurse or admin repremanded the tech because he was not nice to me at all when he came to take me off the machine, being short and yanning on my lines.

I started dialysis earlier thia month. I'm covered by my husband's health insurance. Well, he injured his finger and his employer won't let him go back because he can't safely do his job (forklift operator) and they won't let him work in another role that doesn't involve the forklift. He's two montbs shy of having worked long enough to qualify for FMLA. The absences are just counting against his attendance. When he reaches the maximum number of absences he'll be fired. That should happen next week. When this happens, i will no longer have insurance and my last name isn't Rockefeller so there's no way I can pay out of pocket. I will be discharged from my dualysis center. I sat up last night applying for medicaid, but I'm not hopeful. We applied twice last year and were denied both times, even just for our child. Even if he found another job with insurance immediately, there's usually a 30 day waiting period for it to kick in. His hand is still injured ao I don't even know how he's going to find another job right away anyway. I've sat up crying all night from stress. Can anyone tell me any ideas of what to do?

I'm just generally confused about what's happening in this video. How do the scenes go together and wrf is Tom even doing in a midevil knight costume? Maybe I just don't get the vision. Someone explain it me. Love the song though.

What's your best hygiene tips with a catheter? I was just told don't shower or you'll die basically. I've basically been taking sponge baths in the sink, but I feel disgusting. It's summer where I am. I cut open a plastic zjplock bag and taped it over the dressing and used a hand held shower head to avoid spraying water directly pn the area and risked it once because I felt so nasty. The dressing didn't get wet as far as I could tell, but rhe nurses at the dialysis center acted like I'd just played Russian roulette with only one empty chamber with the risk I took. I don't have the option of a sit down bath where I live and moving isn't an option since I've not been able to work since getting sick and I'm holding on to this place by the skin of my teeth. What do you do? I feel like I can't leave my house because I'm dirty and it's taking a tole on my mental health. Making me wonder if it's even worth going through all this to stay alive if my life just consists of sitting at home too embarassed to leave and going to dialysis. To top it off, I have to try and go back to work and hygiene is very important in the industry I work in. I've seen coworkers written up and even one fired over poor hygiene in the past. I don't qualify for SSDI or SSI and my husband is working himself to death trying to keep us housed so not workinf isn't an option.

Forgive me if I didn't use the correct flair. I know notbing about this process. I was recently diagnosed with End Stage Renal Disease. I'm on hemodialysis 3x a week and have begun the lengthy process of being evaluated for a kidney transplant. The effects of my disease and the treatments have made it impossible to work. I know ESRD technically qualifies me for disability, but I'm not sure if there's any benefit in me applying.

I stopped working full time almost 10 years ago. I got an injury to my leg that left me temporarily unable to walk for several months. As a result I lost my job. As soon as I was good to go and started working again, my birth control failed and I fell pregnant. It was very complicated and led to multiple hospitalizations and an early delivery. I was working for a temp agency at the time so I didn't really have any job protections. I ended up staying home with my daughter until she was 3 (she's nearly 8 now) taking on short term part time work occasionally. I've consistently been working part time for the last 6 years, but it's been like 2 days a week. I had to stop working in February this year due to an eye surgery which temporarily left me unable to see. I was supposed to go back to work, but ended up in the ER unable to breathe at the beginniikonng of summer. That's when it was discovered that my kidneys were done for.

I don't believe I have the work history to qualify for SSDI. I am married and my husband works, bringing home $3k a month. It's my understanding that I won't qualify for payments under SSI either because he earns too much even though it's not nearly enough for a family of 3 to survive on.

I'd consider divorce if it would help my family's financial situation, but then I'd loose access to his employer's health insurance and thus my dualysis. If there's a gap in treatments, I could end up very sick or even loose my shot at a transplant. Is there even a point in applying?

Right now, I do hemo at the center through a catheter in my chest. My brother in law does PD at home. I'm still exploring my options going forward, but what he does seems more manageable than what I'm doing. The only issue is I have 3 cats. He says it's not advisable to have pets indoors and do PD. He actually advised me to get rid of them when I started dialysis due to infection risk. I can't. I have a daughter who's 7. She's already had to give up so much because I'm sick. Her dad has to work constantly because I can't work. I'm a pretty absent mom because all I've had the strength to do is lay on the couch the last couple months. She spends a lot of time in her room playing alone now. We have to rearrange outings and she can't have driends over due to me being sick. Our vacation that she was looking forward to all summer was canceled because I ended up in the hospital with fluid overload and got this stupid thing put in my chest and had to start treatment the weekend we were supposed to leave. I can't ask her to give up her pets too. Two of our cats are young and might realistically outlive me.

Has anyone successfully done PD and kept their cats?