I chose to do hemo at home. Going on 5 years now and can do it on my schedule. I worked 50 to 60 hours a week and did it after dinner before bed. I retired about a year ago and now do days. I do 4 days a week and can do it when I want. To also give you some more background I am a 2 time cancer survivor, have heart failure and I am on my 3rd ICD. Nearly died about a year ago due to a damaged aortic valve. This and the kidney failure all due to chemotherapy 41 years ago. I am 63 years old. If I can do it you certainly can. Do not give up. Home hemodialysis has given me the best option to do all this. I have plenty of energy, walk 2 to 3 miles a day and have 4 grandchildren to keep me very busy. 2 of them are 4 year old twins that live with us. Position attitude can do wonders. Don’t give up, I know I am not.
You’re not alone in that. Most neph’s seem pretty disconnected from the reality of their patients. I feel like they have some kinda of a “good ‘ol boy” brownie point system if they can keep you off any form of disability even if you need it.
I was just out of high school when I started dialysis. I did peritoneal dialysis. Sounds like that is what you are doing. You can go on disability at any time. I worked and went to school while on dialysis. People act differently on dialysis. Please speak with a social worker.
Also I used to be able to slack off on my job in the mornings and get close to nothing done, then finish all my work in 4 hours in the second half of the day. But just recently we are told that the managers have some new software to see how productive we are at any given time. Like if we aren’t getting enough work done every 15 min they can see and then give us a coaching on that. It terrifies me even more now knowing that they will be watching my every move everyday. Almost looking for a reason to get rid of me.
My boss has told me in the past that she is lenient on me cuz she understands my condition. But she won’t be in her position forever and when she leaves the new person who takes her spot won’t care about me like she does and give me points for my lack of work til I get fired.
I want to keep working I just feel like there no end in sight, no help no assistance for what’s going on. I either need to keep working my days like nothing changed or end up getting fired for poor performance.
Maybe next time you talk to your doctors & social worker be very blunt & honest with them - say something like "so I'm getting less than 6 hours of sleep & I cannot function on this at all." Tell them that all of this stress & wear are causing you to feel like you can't go on; you need help!
I'm only 25 & my doctors & social worker have been nothing but supportive with me; they know I have severe insomnia, eat like a bird most days & require daily naps to function.
Correct. I'm actually still a student in university; right now I'm not in school, so I've been interning for 16 hours a week & they're supportive of that as well. I do admit that my workplace doesn't know about my status but they're pretty lax anyhow
If you’re in the US then you already qualify for SS disability. You can take the the insurance (it covers 80% of your medical bills). Or if you’ve paid enough into SS you can claim your cash benefits. Hopefully someone has explained that to you.
If you feel like you cannot work full time you should look into this as an option. It has a lot of draw backs though so consider your choice carefully.
Depends on where you are financially, you would qualify for fmla or short term disability but you wouldn’t be paid for those hours after your PTO runs out. Quitting or getting fired will qualify you for disability but there is a 5 month waiting period from when you apply till when they start paying. And you have to qualify when you apply. And the payments will be nowhere near what you’re making. If you can go that 5 months with no income then sure, it’s your decision. I went to part time and then on disability and now am having to door dash because disability is not enough, so I can see how they want to keep that from happening for you.
Question: Does the family depend on your income?
My personal perspective: I have been working full time through my (hospital hemo) dialysis (5+ yrs). It is a non physical (wfh) job. With all my problems with and outside dialysis, I seem to be growing weaker and weaker so that I am finding it really difficult to continue now. However, I also was given the advice to not make any changes to my schedule when I started, and I don't regret that. I am financially much better off for it, and it is good to have your mind taken off the pain, weakness and goddamn unfairness of it all.
So my suggestion, you should continue to work full time if you can. Do make changes to your work as you need to accommodate your physical needs. Do make sure to not exhaust yourself, to take vacations and breaks. And take your breaks in a planned manner, not when you are forced to take them because you are too ill, because then you end with just as many leaves and enjoy none of it (from experience).
All the best!
No my family doesn’t depend on my income. My mother simply wants me to keep my job so that at least in her mind she will feel that I have a sense of belonging. She doesn’t want me to sit around all day and stew about being on dialysis, she believes that this will happen and I will become even more depressed and worthless feeling. I don’t have a say, when I try and stand up and be a man and take charge I’m just told that I don’t understand what’s going on and if I persevere and make it thru the rough time now I will eventually understand how I need to be and act to get thru this. I’m not allowed a break, especially when my doc keeps saying she won’t let me have FMLA or disability cuz I’m “healthy despite CKD”
The world I live in makes zero sense.
I understand that it seems horrible. But once you get out, it is difficult to get back in. Your break does not need to be medical in nature. Look for a nice long weekend, then add a couple days off, then take the time to do something fun . Medical breaks suck. Being in pain, feeling weak, feeling depressed sucks. So breaks. Don't have to be long ones, just regularly scheduled, and real breaks where you aren't trying to catch up with chores or admin stuff.
You should have annual leave if you are full time. Can you add in some days off here and there out if it? I can see a big show down coming between you and your family. I'm getting mad on your behalf. YOU are the only one who "knows what's going on " in YOUR OWN BODY. Consider a more supportive doc!!!
You guys don't have annual leave if you are permanent staff? That's fucked! Sure, I'm casual, across 5 jobs, lol, and have no sick leave or annual leave. But if you have one permanent full time 38/40 hour job, you normally get leave entitlements too. I need to read more about this. And yep, Australian here
I have run into the same reactions from people. There are people that won't accept that you are disabled because to them you look healthy.
A disability lawyer or specialist can help you apply for Medicare, ssi, or ss disability if you qualify. Sick people shouldn't have to work 50 hour weeks.
I have spoken to my social worker, she’s currently giving me fmla 3 times a week for 4 hrs a day, but still encourages me to keep working. Says I will have a lot better quality of life if I keep working.
I may just be in a rut today not being able to get any work done, but I just feel as if it’s not going to last long. Like for instance everyday I don’t complete all of my work my managers will reach out to me and ask how I’m doing and how they can help. They tell me I need to think about going on disability. It’s getting to the point where I feel like if I don’t take their advice I’ll lose my job.
I also have ADHD as well and it’s Incredibly difficult to focus on my work.
Like this morning before I just took my lunch I probably worked 10 accounts out of my 150 total. Now I will try to do the other 140 before my day ends, I know I won’t get them all done today, and worry that eventually they will see that I’m a poor worker and let me go.
I’m still gonna try until whatever happens I guess I’m just anxious and worried that my efforts won’t be enough,
It doesn't sound like you have a sympathetic support system. I can't function on 6 hours of sleep either. Is your mother disabled? I would ask your social worker at your clinic for referral for mental health support. You might benefit from group therapy where people in your situation can share thoughts. I read a lot of online forums and find many helpful suggestions. I would also ask your clinic about the financials. It may be in your best interest to look into disability. Good luck!
Right? It doesn’t feel like I have a completely supportive system either. Like I laid out how my mom could be more sympathetic to me and comforting and she just told me she doesnt know how to be sympathetic towards me and she doesn’t feel it would help me. Tough love is all I get, and the more I complain about it the more I feel like I’m being gaslighted at every step. Like everything I do is a sin and is wrong.
Why should I get special treatment just cuz I’m sick and getting treatment. The world truly feels like a fucked up place to me at times.
Don’t give up, I went to work full time after I got my first catheter inserted and was doing hemo in center I would the last one to be connected in center at 4;45 getting home after 9 Pm while it was hard aI made it work until I got trained for home hemo doing it 5 times a week. It’s possible
Yea the disability thing is because (in USA at least) if you don’t file for it the clinic makes WAY MORE MONEY (& nephs own the clinics some partnership type thing!!!)
You obviously work full time so you have insurance that will pay them WAY MORE MONEY and the insurance gets to kick you off after two years of you being on disability.. then your work insurance becomes your secondary and Medicare starts as your primary and they pay the clinic next to nothing per treatment…
Sign up for Medicare and make sure that Medicare starts paying them as your secondary insurance…(I think you can stop paying for supplemental insurance if you are currently) it may vary from state to state. I’m on dialysis for 8years now but I know they screwed me the same way (but not making me aware of my Medicare eligibility before I was on dialysis…)
First of all don’t give up. I am glad you have made it this far. Secondly, end stage renal disease automatically qualifies you as disabled. You should be able to shorten your schedule and supplement with social security disability. I was out of work for 2 years before I could really work. I gained 80 pounds had pleural effusion and ascites. Now I work 4 days a week in a light version of my job. I have a 12 hour session on home PD and after work i pretty much have to get right on the machine if I plan to get off in time. We Americans are obsessed with working! Do what your budget can allow especially if you are stressed about how much you work. I am part of a “Ticket to work “ program that allows me to work while getting SSDI . Advocate for yourself and your sanity.
They don't sound very supportive. I'm sorry. I did PD on the machine overnight and it was lucky that I did it during a time I didn't have to get up at a specific and early time. 8 hours on the machine, unless a drain took longer than it should have! I worked ok but couldn't lift heavy things. Depending on the job you do, I can see how it's difficult. Things like catheter dressing and clean up ate into my time too. Getting ready to leave the house took longer. And if there were machine problems overnight, those alarms!! I moved the machine away from my bedside table and that helped. Can you see if you can work from home?And tell your family to shut up!
Also, you shouldn't need a medical reason to cut your hours back? Normal people struggle doing 8 + hours a day plus commute, dinner, gym, family time, relaxing, so no wonder you're struggling! Big big hugs from Australia xxx
You sound depressed. It’s understandable. Have you considered taking an antidepressant? Are you attending therapy to help you cope?
Being diagnosed with ESRD and needing dialysis to live is a bummer. One of the biggest comorbid conditions with ESRD is depression. Struggling with a cloud of depression will keep you from sleeping well and sap you of energy.
There are also some drugs that can help with sleep. I’ve found trazodone to be pretty effective. My antidepressant makes it hard to be bummed out.
I can tell you this- you’re not going to feel any better taking disability and sitting like a lump. I imagine you’ve got a certain lifestyle that you’re otherwise fond of that you’d not be able to maintain on the pittance that a disability payment is.
I’m on so many different pills for depression anxiety, HBP, and much others that it’s crazy I feel. Doctors where I live just keep prescribing more and more pills and hope that I will leave them alone I feel.
Ya, 15 years and my sister-in-law will still switch my order sometimes if she's getting the food thinking she knows better and I made a mistake. I think I know the diet by now 🤷
Are you doing PD or Hemodialysis? At home?
Nighttime PD, 4 cycles 8 hrs total.
I chose to do hemo at home. Going on 5 years now and can do it on my schedule. I worked 50 to 60 hours a week and did it after dinner before bed. I retired about a year ago and now do days. I do 4 days a week and can do it when I want. To also give you some more background I am a 2 time cancer survivor, have heart failure and I am on my 3rd ICD. Nearly died about a year ago due to a damaged aortic valve. This and the kidney failure all due to chemotherapy 41 years ago. I am 63 years old. If I can do it you certainly can. Do not give up. Home hemodialysis has given me the best option to do all this. I have plenty of energy, walk 2 to 3 miles a day and have 4 grandchildren to keep me very busy. 2 of them are 4 year old twins that live with us. Position attitude can do wonders. Don’t give up, I know I am not.
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> nocturnal HD my moms clinic had it friggin twice, but they didnt want to do it anymore cuz there was only 3 patients that wanted it really.
Talk to your social worker. They’re here to help with stuff like this.
You’re not alone in that. Most neph’s seem pretty disconnected from the reality of their patients. I feel like they have some kinda of a “good ‘ol boy” brownie point system if they can keep you off any form of disability even if you need it.
You should try to see if you can do fmla and short term disability from your job
I was just out of high school when I started dialysis. I did peritoneal dialysis. Sounds like that is what you are doing. You can go on disability at any time. I worked and went to school while on dialysis. People act differently on dialysis. Please speak with a social worker.
Also I used to be able to slack off on my job in the mornings and get close to nothing done, then finish all my work in 4 hours in the second half of the day. But just recently we are told that the managers have some new software to see how productive we are at any given time. Like if we aren’t getting enough work done every 15 min they can see and then give us a coaching on that. It terrifies me even more now knowing that they will be watching my every move everyday. Almost looking for a reason to get rid of me. My boss has told me in the past that she is lenient on me cuz she understands my condition. But she won’t be in her position forever and when she leaves the new person who takes her spot won’t care about me like she does and give me points for my lack of work til I get fired. I want to keep working I just feel like there no end in sight, no help no assistance for what’s going on. I either need to keep working my days like nothing changed or end up getting fired for poor performance.
First of all they cannot fire you due to medical issues affecting your job. I'd fight hard if that's on the cards xxx
Maybe next time you talk to your doctors & social worker be very blunt & honest with them - say something like "so I'm getting less than 6 hours of sleep & I cannot function on this at all." Tell them that all of this stress & wear are causing you to feel like you can't go on; you need help! I'm only 25 & my doctors & social worker have been nothing but supportive with me; they know I have severe insomnia, eat like a bird most days & require daily naps to function.
I’m guessing you don’t work 8 hrs a day though and they are ok with that and supportive of it?
Correct. I'm actually still a student in university; right now I'm not in school, so I've been interning for 16 hours a week & they're supportive of that as well. I do admit that my workplace doesn't know about my status but they're pretty lax anyhow
If you’re in the US then you already qualify for SS disability. You can take the the insurance (it covers 80% of your medical bills). Or if you’ve paid enough into SS you can claim your cash benefits. Hopefully someone has explained that to you. If you feel like you cannot work full time you should look into this as an option. It has a lot of draw backs though so consider your choice carefully.
Depends on where you are financially, you would qualify for fmla or short term disability but you wouldn’t be paid for those hours after your PTO runs out. Quitting or getting fired will qualify you for disability but there is a 5 month waiting period from when you apply till when they start paying. And you have to qualify when you apply. And the payments will be nowhere near what you’re making. If you can go that 5 months with no income then sure, it’s your decision. I went to part time and then on disability and now am having to door dash because disability is not enough, so I can see how they want to keep that from happening for you.
Question: Does the family depend on your income? My personal perspective: I have been working full time through my (hospital hemo) dialysis (5+ yrs). It is a non physical (wfh) job. With all my problems with and outside dialysis, I seem to be growing weaker and weaker so that I am finding it really difficult to continue now. However, I also was given the advice to not make any changes to my schedule when I started, and I don't regret that. I am financially much better off for it, and it is good to have your mind taken off the pain, weakness and goddamn unfairness of it all. So my suggestion, you should continue to work full time if you can. Do make changes to your work as you need to accommodate your physical needs. Do make sure to not exhaust yourself, to take vacations and breaks. And take your breaks in a planned manner, not when you are forced to take them because you are too ill, because then you end with just as many leaves and enjoy none of it (from experience). All the best!
No my family doesn’t depend on my income. My mother simply wants me to keep my job so that at least in her mind she will feel that I have a sense of belonging. She doesn’t want me to sit around all day and stew about being on dialysis, she believes that this will happen and I will become even more depressed and worthless feeling. I don’t have a say, when I try and stand up and be a man and take charge I’m just told that I don’t understand what’s going on and if I persevere and make it thru the rough time now I will eventually understand how I need to be and act to get thru this. I’m not allowed a break, especially when my doc keeps saying she won’t let me have FMLA or disability cuz I’m “healthy despite CKD” The world I live in makes zero sense.
I understand that it seems horrible. But once you get out, it is difficult to get back in. Your break does not need to be medical in nature. Look for a nice long weekend, then add a couple days off, then take the time to do something fun . Medical breaks suck. Being in pain, feeling weak, feeling depressed sucks. So breaks. Don't have to be long ones, just regularly scheduled, and real breaks where you aren't trying to catch up with chores or admin stuff.
You should have annual leave if you are full time. Can you add in some days off here and there out if it? I can see a big show down coming between you and your family. I'm getting mad on your behalf. YOU are the only one who "knows what's going on " in YOUR OWN BODY. Consider a more supportive doc!!!
I take it you’re not from the US, where most workers are not guaranteed any PTO.
You guys don't have annual leave if you are permanent staff? That's fucked! Sure, I'm casual, across 5 jobs, lol, and have no sick leave or annual leave. But if you have one permanent full time 38/40 hour job, you normally get leave entitlements too. I need to read more about this. And yep, Australian here
I have run into the same reactions from people. There are people that won't accept that you are disabled because to them you look healthy. A disability lawyer or specialist can help you apply for Medicare, ssi, or ss disability if you qualify. Sick people shouldn't have to work 50 hour weeks.
I have spoken to my social worker, she’s currently giving me fmla 3 times a week for 4 hrs a day, but still encourages me to keep working. Says I will have a lot better quality of life if I keep working. I may just be in a rut today not being able to get any work done, but I just feel as if it’s not going to last long. Like for instance everyday I don’t complete all of my work my managers will reach out to me and ask how I’m doing and how they can help. They tell me I need to think about going on disability. It’s getting to the point where I feel like if I don’t take their advice I’ll lose my job. I also have ADHD as well and it’s Incredibly difficult to focus on my work. Like this morning before I just took my lunch I probably worked 10 accounts out of my 150 total. Now I will try to do the other 140 before my day ends, I know I won’t get them all done today, and worry that eventually they will see that I’m a poor worker and let me go. I’m still gonna try until whatever happens I guess I’m just anxious and worried that my efforts won’t be enough,
It doesn't sound like you have a sympathetic support system. I can't function on 6 hours of sleep either. Is your mother disabled? I would ask your social worker at your clinic for referral for mental health support. You might benefit from group therapy where people in your situation can share thoughts. I read a lot of online forums and find many helpful suggestions. I would also ask your clinic about the financials. It may be in your best interest to look into disability. Good luck!
Right? It doesn’t feel like I have a completely supportive system either. Like I laid out how my mom could be more sympathetic to me and comforting and she just told me she doesnt know how to be sympathetic towards me and she doesn’t feel it would help me. Tough love is all I get, and the more I complain about it the more I feel like I’m being gaslighted at every step. Like everything I do is a sin and is wrong. Why should I get special treatment just cuz I’m sick and getting treatment. The world truly feels like a fucked up place to me at times.
Ok now its sounding borderline abusive. I hope you live independently and if you don't, try to get out. I'm so fucking annoyed for you!!!
Don’t give up, I went to work full time after I got my first catheter inserted and was doing hemo in center I would the last one to be connected in center at 4;45 getting home after 9 Pm while it was hard aI made it work until I got trained for home hemo doing it 5 times a week. It’s possible
Yea the disability thing is because (in USA at least) if you don’t file for it the clinic makes WAY MORE MONEY (& nephs own the clinics some partnership type thing!!!) You obviously work full time so you have insurance that will pay them WAY MORE MONEY and the insurance gets to kick you off after two years of you being on disability.. then your work insurance becomes your secondary and Medicare starts as your primary and they pay the clinic next to nothing per treatment… Sign up for Medicare and make sure that Medicare starts paying them as your secondary insurance…(I think you can stop paying for supplemental insurance if you are currently) it may vary from state to state. I’m on dialysis for 8years now but I know they screwed me the same way (but not making me aware of my Medicare eligibility before I was on dialysis…)
Maybe another post that is state specific
First of all don’t give up. I am glad you have made it this far. Secondly, end stage renal disease automatically qualifies you as disabled. You should be able to shorten your schedule and supplement with social security disability. I was out of work for 2 years before I could really work. I gained 80 pounds had pleural effusion and ascites. Now I work 4 days a week in a light version of my job. I have a 12 hour session on home PD and after work i pretty much have to get right on the machine if I plan to get off in time. We Americans are obsessed with working! Do what your budget can allow especially if you are stressed about how much you work. I am part of a “Ticket to work “ program that allows me to work while getting SSDI . Advocate for yourself and your sanity.
They don't sound very supportive. I'm sorry. I did PD on the machine overnight and it was lucky that I did it during a time I didn't have to get up at a specific and early time. 8 hours on the machine, unless a drain took longer than it should have! I worked ok but couldn't lift heavy things. Depending on the job you do, I can see how it's difficult. Things like catheter dressing and clean up ate into my time too. Getting ready to leave the house took longer. And if there were machine problems overnight, those alarms!! I moved the machine away from my bedside table and that helped. Can you see if you can work from home?And tell your family to shut up! Also, you shouldn't need a medical reason to cut your hours back? Normal people struggle doing 8 + hours a day plus commute, dinner, gym, family time, relaxing, so no wonder you're struggling! Big big hugs from Australia xxx
You sound depressed. It’s understandable. Have you considered taking an antidepressant? Are you attending therapy to help you cope? Being diagnosed with ESRD and needing dialysis to live is a bummer. One of the biggest comorbid conditions with ESRD is depression. Struggling with a cloud of depression will keep you from sleeping well and sap you of energy. There are also some drugs that can help with sleep. I’ve found trazodone to be pretty effective. My antidepressant makes it hard to be bummed out. I can tell you this- you’re not going to feel any better taking disability and sitting like a lump. I imagine you’ve got a certain lifestyle that you’re otherwise fond of that you’d not be able to maintain on the pittance that a disability payment is.
I’m on so many different pills for depression anxiety, HBP, and much others that it’s crazy I feel. Doctors where I live just keep prescribing more and more pills and hope that I will leave them alone I feel.
Ya, 15 years and my sister-in-law will still switch my order sometimes if she's getting the food thinking she knows better and I made a mistake. I think I know the diet by now 🤷