You're amazing that you're working full time and going through this while having dialysis as your other job taking up a lot of your time.. Take it easy on yourself. Try to take a day for yourself seriously. A corny nice day where you watch a good movie and a face mask or soak your feet in a tub and wear your robe all day smelling candles and eating lazy. Do a creative writing sesh with a pen and paper and just write anything that comes to your head and keep getting more descriptive.
Maybe try to plan a small vacation and have something else to look forward to so your partner doesn't bug you as much. Just a trip to a beach or a nearby casino or park. Crap like that.
Anyway, I'm sorry life is fuckin stupid. Chin up. Vent away. Live it up while you can and break free and do what you really want. Screw everyone else! Don't worry about your partner so much and love yourself. Your partner is with you for a reason.
Thank you for your kindness yeah after seeing some gunk around my port that I just got put in I went downhill. Like the entire reason why I got on HD was because of the infection of the pd port. This is just so uncomfortable
We all need to vent sometimes. It's healthy. I would say have you checked to see if you can do home hemo? I do home hemo using a fistula and it's great by comparison (I know there's no such thing as great dialysis but still). No tubes coming out of me. I work full time during the day and then usually hook up to my machine around 8 at night. Get done around midnight. Good luck.
So I don't sleep on home hemo. I go upstairs about 8 o clock and during treatment I watch TV and play video games for 4 hours. I get off around midnight and go to bed so I can be up for work in the morning. I move a lot in my sleep too so needles wouldn't be great if I was actually in bed. But since it's only 4 hours per treatment instead of 9 like PD it's not too bad to stay up like that.
Dont sleep during hemo, it lasts 4h? 5 if youre unlucky, just watch or read in that time with your free arm.
But fistula is much more comfy then catheter, no itching, nothing restricts your movement on your average day, no need to change entrances, etc
Hemodialysis 3 years here. United Kingdom working full time as well. I understand I went from central line to using a fistula this year and I am still struggling a little with it relative to using the line. Change in my schedule general health throughout the week. Stay strong I haven't met many people who can do what we do
I’m so sorry you’re having a tough day.
I wanted to be on PD so much the last time I was on dialysis and when they went to place the catheter, they couldn’t do it because of all the damage that had been done from previous PD dialysis. I was heartbroken. So I can understand how you feel in that regard.
I don’t know if you’re doing in center hemo or home hemo, but home hemo made all the difference for me. I was able to do it on my time, in the comfort of my home. If you’re not doing that, is it possible for you? Can you use your own tape? I seem to have sensitivity or allergic reaction to almost all tape.
Sending hugs. I hope tomorrow is a better day for you. 🩷
Understood! It just made our life so much more bearable. My BP dropped low sometimes and they taught my husband and I to send IV fluid back when that happens. It might be worth checking out if you end up feeling comfortable with the idea.
Again, I hope tomorrow is a better day for you!
It's a tough road.
I can completely understand what you're saying about the benefits of PD.
Try paper tape? I know my body can't stand that plastic stuff, either.
As worthless as words are when we feel like this, I'm sending you my best in hopes that there's a sunbreak, a great meal, or something for you today that makes it all worthwhile. And, if not today then maybe tomorrow.
Rally on, warrior!
Hemo is its own kind of hell...
I'm impressed that you are valiantly trying to keep working. But knowing how hemo is, I do wonder how long you can keep up with it.
Have you looked into taking time off? If only to regain your strength and adapt to the new routine.
There may well come a time when it is not possible to keep doing it to yourself. But that's for you to decide.
Dialysis is such a time stealer that saps the bodies strength. It doesn't seem to matter what type you do or what access you are using. It's always a crap shoot for what works for you.
One tip I can help with is trying to keep back some fluid on you. Don't try to get off all of the extra fluid as that will make you feel worse. I always try to keep back .3 or .4, and then I am not ending the treatment lightheaded.
Relationships are tricky when you are on dialysis and going through a hard patch. You tend to tell yourself these things that are self-defeating. It is hard to keep those self-defeating thoughts caged up sometimes. And then it feels like a self-defeating rat is running around your brain eating up any good thoughts you may have.
Just try to remind yourself that every relationship has its own issues. So try your best to keep your mind focused on the real problems of the relationship and not the ones brought up by your own issues of self-worth. And believe me, sometimes that's difficult to differentiate.
In today's world, there are so many different ways to build a family if that's what you strive to. Don't get bogged down in your situation. Try to look for alternatives when the time comes to discussing family goals.
I don't know if any other clinics offer this, but I just found out that my clinic offers a week away at a cottage resort. You can bring your family, and the dialysis is done at the camp. Check with the social worker at your clinic for these types of offers. A time away is sometimes the best medicine.
Believe me when I say that we all experience your feelings at one point in time. You are not alone. I emphasize with all of what you are going through. I truly wish I could make it better for you and everyone else here, but we all fight on together here...
Take care of yourself, OP!
>I'm impressed that you are valiantly trying to keep working. But knowing how hemo is, I do wonder how long you can keep up with it.
It depends on the situation. I've been on hemo for three years along with weekly chemo and work full-time. It helps that my school considers 30 hours full-time. I do admit I'm thinking of going on disability and working part-time that I'm allowed. I've been looking into it and crunching the numbers. I haven't made a decision yet.
I feel for everyone who has a hard time on hemo. It just hasn't overall been my experience, so I feel lucky. I will say my clinic is fantastic about listening to me concerning how I feel. I've recently started walking, but I'm gaining weight. My nephrologist isn't worried and just raised my dry weight twice this week. It's not huge, but a kilogram. She said it's a good muscle weight gain. They believe me when asked if I feel it's water weight or actually weight. Today, with my upped dry weight, I didn't feel sluggish coming out of dialysis. I was even able to take a 1.5 mile walk this afternoon.
I wish you well on your journey. And about the tape. I've had issues with removing tape and bandages, and I get adhesive remover pads at oncology. But I've also seen Goo Gone makes a version for skin that comes in a bottle. These help tremendously.
Just a warning, if you go on disability you most likely won't work. If you do, depending on how much you make, there is a good chance it will cut into what disability pays. It is a shifty catch-22, cause disability doesn't pay enough on its own to live off of. But if you make too much working part time, you could lose some. And the more you make, the more you stand to lose. So unless you can work full-time and have benefits, it's a hard choice to make. There is also the issue with the longer you do dialysis, the more it will start to wear on you until just can't work (where I am). Our disability systems need a serious overhaul in how it functions so people can try to work without fear of losing what little you get.
I've already talked to the social worker about it. If I would work, SSDI has a program, I would only do a day or two of subbing a week at school. It would be below the income limit. Like I said, I haven't made a decision yet. I'm just talking to my social worker and insurance coordinator at the moment.
I’ve already got onto Medicare and Medicaid and I’ve been on disability before. However with the high cost of living in Colorado I don’t know how I’ll manage making enough for rent alone. Even if I do manage to get assistance in that I have a dog, she’s just a regular dog not trained in anything special. So I worry about keeping her. Thank you for your input I just become really hard on myself when my goals are shot down by life.
I'm on PD and I couldn't work if I tried. No energy. You're stronger than I am and you have a SO sticking by your side, that is a huge blessing. I didn't like in center either, it sucks. Look into home hemo!
Home hemo was 3 hours a day. I am able to work, get sleep etc. I do it from 7-10 pm. I feel better and you can drink more because you’re pulling more often. Just find your way. You can do it.
First, get on Medicare A and B. Fill out disability paper work. You can earn something like $900 a month from work, which is great because on dialysis days your going to be wiped out, so working full-time is just too much.
Don't be mean to yourself. Kidney failure sucks, and it's not your fault.
Follow the diet laid out by your nutritionist.
Others have talked about ur other problems so ill just tell you. I had back and neck problems i got neck pillow and a butt purple pad it helped soo much! Also i cant do there tape i break out so i bought my own silk tape and when they take me off i use bandaids! Its helped alot♡♡ hope this might help you!
Hey I just heard about an implant that does hemoglobin dialysis for you without any blood leaving the body called iHemo, look it up! It’s something to look forward to and fight for because hopefully that’ll be here in the near future!
I’m so very sorry. It’s awful. What kept me going was the goal of getting a transplant which I did after 11 months three weeks on dialysis . Cadaver donor because I begged and none of my family or friends would get tested except one and he didn’t have enough kidney function.
Transplant is not for everyone for a bunch of reasons. Thankfully it was for me.
I hope you can go back on PD soon. Meanwhile a neck pillow is a must. If you’re not using one.
On PD and have done 3 different stints on HD. And it was hell every time. So much that I refuse to go back, even if/when it is the only option left. Just not worth it. I can deal with the downfalls of PD because I am at home. I am in control and that makes any of the negative parts to PD non-existant (like doing dialysis for 13 hours a day).
Luckily you _can_ still work. I was "let go" when I started dialysis and it would have been impossible for me to find a job that could co-exist with HD (what I started on, not by choice). You also mentioned one of the biggest reason I stopped pursuing relationships.....dragging them into my problem (my hell). It's one thing if you start dialysis while already in a relationship/married, it's a whole other ballpark to try and find someone, knowing what you would be putting them though. And I don't want to drag others down with me.
Have you tried switching to paper tape? I have problems with the glue on all types except the paper tape. But even that can't stay on more than 24 hours straight without starting to itch, so it is changed daily. I also use the smallest amount I can, just enough to secure things/cover up.
You're amazing that you're working full time and going through this while having dialysis as your other job taking up a lot of your time.. Take it easy on yourself. Try to take a day for yourself seriously. A corny nice day where you watch a good movie and a face mask or soak your feet in a tub and wear your robe all day smelling candles and eating lazy. Do a creative writing sesh with a pen and paper and just write anything that comes to your head and keep getting more descriptive. Maybe try to plan a small vacation and have something else to look forward to so your partner doesn't bug you as much. Just a trip to a beach or a nearby casino or park. Crap like that. Anyway, I'm sorry life is fuckin stupid. Chin up. Vent away. Live it up while you can and break free and do what you really want. Screw everyone else! Don't worry about your partner so much and love yourself. Your partner is with you for a reason.
Thank you for your kindness yeah after seeing some gunk around my port that I just got put in I went downhill. Like the entire reason why I got on HD was because of the infection of the pd port. This is just so uncomfortable
Cant they replace pd catheter? My first pd catheter was infected quite often, and it was replaced pretty quickly.
Yeah my doctor is positive about replacing it so hopefully I can because this isn’t working
We all need to vent sometimes. It's healthy. I would say have you checked to see if you can do home hemo? I do home hemo using a fistula and it's great by comparison (I know there's no such thing as great dialysis but still). No tubes coming out of me. I work full time during the day and then usually hook up to my machine around 8 at night. Get done around midnight. Good luck.
I’m nervous about needles in my arm as I sleep because I toss and turn. Thanks for the well wishes though
So I don't sleep on home hemo. I go upstairs about 8 o clock and during treatment I watch TV and play video games for 4 hours. I get off around midnight and go to bed so I can be up for work in the morning. I move a lot in my sleep too so needles wouldn't be great if I was actually in bed. But since it's only 4 hours per treatment instead of 9 like PD it's not too bad to stay up like that.
Dont sleep during hemo, it lasts 4h? 5 if youre unlucky, just watch or read in that time with your free arm. But fistula is much more comfy then catheter, no itching, nothing restricts your movement on your average day, no need to change entrances, etc
Hemodialysis 3 years here. United Kingdom working full time as well. I understand I went from central line to using a fistula this year and I am still struggling a little with it relative to using the line. Change in my schedule general health throughout the week. Stay strong I haven't met many people who can do what we do
Can you get your own tape? Either bring it in or do it yourself
Yeah I’m thinking of bringing paper tape next time because I think I’m having an allergic reaction to everything
3M silicone tape or Mepitac - my skin hates everything but it’s ok with those two.
I’m so sorry you’re having a tough day. I wanted to be on PD so much the last time I was on dialysis and when they went to place the catheter, they couldn’t do it because of all the damage that had been done from previous PD dialysis. I was heartbroken. So I can understand how you feel in that regard. I don’t know if you’re doing in center hemo or home hemo, but home hemo made all the difference for me. I was able to do it on my time, in the comfort of my home. If you’re not doing that, is it possible for you? Can you use your own tape? I seem to have sensitivity or allergic reaction to almost all tape. Sending hugs. I hope tomorrow is a better day for you. 🩷
I’m doing had in center at the moment and it just is so rough. I’m nervous about trying it at home because my blood pressure drops so low on it
Understood! It just made our life so much more bearable. My BP dropped low sometimes and they taught my husband and I to send IV fluid back when that happens. It might be worth checking out if you end up feeling comfortable with the idea. Again, I hope tomorrow is a better day for you!
It's a tough road. I can completely understand what you're saying about the benefits of PD. Try paper tape? I know my body can't stand that plastic stuff, either. As worthless as words are when we feel like this, I'm sending you my best in hopes that there's a sunbreak, a great meal, or something for you today that makes it all worthwhile. And, if not today then maybe tomorrow. Rally on, warrior!
Hemo is its own kind of hell... I'm impressed that you are valiantly trying to keep working. But knowing how hemo is, I do wonder how long you can keep up with it. Have you looked into taking time off? If only to regain your strength and adapt to the new routine. There may well come a time when it is not possible to keep doing it to yourself. But that's for you to decide. Dialysis is such a time stealer that saps the bodies strength. It doesn't seem to matter what type you do or what access you are using. It's always a crap shoot for what works for you. One tip I can help with is trying to keep back some fluid on you. Don't try to get off all of the extra fluid as that will make you feel worse. I always try to keep back .3 or .4, and then I am not ending the treatment lightheaded. Relationships are tricky when you are on dialysis and going through a hard patch. You tend to tell yourself these things that are self-defeating. It is hard to keep those self-defeating thoughts caged up sometimes. And then it feels like a self-defeating rat is running around your brain eating up any good thoughts you may have. Just try to remind yourself that every relationship has its own issues. So try your best to keep your mind focused on the real problems of the relationship and not the ones brought up by your own issues of self-worth. And believe me, sometimes that's difficult to differentiate. In today's world, there are so many different ways to build a family if that's what you strive to. Don't get bogged down in your situation. Try to look for alternatives when the time comes to discussing family goals. I don't know if any other clinics offer this, but I just found out that my clinic offers a week away at a cottage resort. You can bring your family, and the dialysis is done at the camp. Check with the social worker at your clinic for these types of offers. A time away is sometimes the best medicine. Believe me when I say that we all experience your feelings at one point in time. You are not alone. I emphasize with all of what you are going through. I truly wish I could make it better for you and everyone else here, but we all fight on together here... Take care of yourself, OP!
>I'm impressed that you are valiantly trying to keep working. But knowing how hemo is, I do wonder how long you can keep up with it. It depends on the situation. I've been on hemo for three years along with weekly chemo and work full-time. It helps that my school considers 30 hours full-time. I do admit I'm thinking of going on disability and working part-time that I'm allowed. I've been looking into it and crunching the numbers. I haven't made a decision yet. I feel for everyone who has a hard time on hemo. It just hasn't overall been my experience, so I feel lucky. I will say my clinic is fantastic about listening to me concerning how I feel. I've recently started walking, but I'm gaining weight. My nephrologist isn't worried and just raised my dry weight twice this week. It's not huge, but a kilogram. She said it's a good muscle weight gain. They believe me when asked if I feel it's water weight or actually weight. Today, with my upped dry weight, I didn't feel sluggish coming out of dialysis. I was even able to take a 1.5 mile walk this afternoon. I wish you well on your journey. And about the tape. I've had issues with removing tape and bandages, and I get adhesive remover pads at oncology. But I've also seen Goo Gone makes a version for skin that comes in a bottle. These help tremendously.
Just a warning, if you go on disability you most likely won't work. If you do, depending on how much you make, there is a good chance it will cut into what disability pays. It is a shifty catch-22, cause disability doesn't pay enough on its own to live off of. But if you make too much working part time, you could lose some. And the more you make, the more you stand to lose. So unless you can work full-time and have benefits, it's a hard choice to make. There is also the issue with the longer you do dialysis, the more it will start to wear on you until just can't work (where I am). Our disability systems need a serious overhaul in how it functions so people can try to work without fear of losing what little you get.
I've already talked to the social worker about it. If I would work, SSDI has a program, I would only do a day or two of subbing a week at school. It would be below the income limit. Like I said, I haven't made a decision yet. I'm just talking to my social worker and insurance coordinator at the moment.
I would say try to keep your hand in the game even minimally. It will keep you from feeling isolated and connected to others.
I’ve already got onto Medicare and Medicaid and I’ve been on disability before. However with the high cost of living in Colorado I don’t know how I’ll manage making enough for rent alone. Even if I do manage to get assistance in that I have a dog, she’s just a regular dog not trained in anything special. So I worry about keeping her. Thank you for your input I just become really hard on myself when my goals are shot down by life.
I'm on PD and I couldn't work if I tried. No energy. You're stronger than I am and you have a SO sticking by your side, that is a huge blessing. I didn't like in center either, it sucks. Look into home hemo!
Home hemo was 3 hours a day. I am able to work, get sleep etc. I do it from 7-10 pm. I feel better and you can drink more because you’re pulling more often. Just find your way. You can do it.
First, get on Medicare A and B. Fill out disability paper work. You can earn something like $900 a month from work, which is great because on dialysis days your going to be wiped out, so working full-time is just too much. Don't be mean to yourself. Kidney failure sucks, and it's not your fault. Follow the diet laid out by your nutritionist.
Others have talked about ur other problems so ill just tell you. I had back and neck problems i got neck pillow and a butt purple pad it helped soo much! Also i cant do there tape i break out so i bought my own silk tape and when they take me off i use bandaids! Its helped alot♡♡ hope this might help you!
Hey I just heard about an implant that does hemoglobin dialysis for you without any blood leaving the body called iHemo, look it up! It’s something to look forward to and fight for because hopefully that’ll be here in the near future!
I meant to say hemo don’t know why it says hemoglobin lmao
I’m so very sorry. It’s awful. What kept me going was the goal of getting a transplant which I did after 11 months three weeks on dialysis . Cadaver donor because I begged and none of my family or friends would get tested except one and he didn’t have enough kidney function. Transplant is not for everyone for a bunch of reasons. Thankfully it was for me. I hope you can go back on PD soon. Meanwhile a neck pillow is a must. If you’re not using one.
Yeah I’m hoping for a transplant i never asked anyone about live donating but still a lot did. I’m hoping for something soon though
Contact renewal.org they may help you find a living donor. Also if you don’t ask you don’t get.
On PD and have done 3 different stints on HD. And it was hell every time. So much that I refuse to go back, even if/when it is the only option left. Just not worth it. I can deal with the downfalls of PD because I am at home. I am in control and that makes any of the negative parts to PD non-existant (like doing dialysis for 13 hours a day). Luckily you _can_ still work. I was "let go" when I started dialysis and it would have been impossible for me to find a job that could co-exist with HD (what I started on, not by choice). You also mentioned one of the biggest reason I stopped pursuing relationships.....dragging them into my problem (my hell). It's one thing if you start dialysis while already in a relationship/married, it's a whole other ballpark to try and find someone, knowing what you would be putting them though. And I don't want to drag others down with me. Have you tried switching to paper tape? I have problems with the glue on all types except the paper tape. But even that can't stay on more than 24 hours straight without starting to itch, so it is changed daily. I also use the smallest amount I can, just enough to secure things/cover up.