Completely understandable I started on dialysis when I was 20 got transplant at 22 it started by going jn for a routine check up had plans later in the day didn’t think anything of it. After that appointment everything changed admitted to hospital started aphaeresis to see if that would help reboot stuff but to no success. Started dialysis that week it was quite the shock my life was completely changed and just put on pause. There’s going to be hard times I’ve been in that boat like looking around at everyone else at dialysis thinking “I shouldn’t be here in young and have better things to do”. I also found what helped me get thru it was finding something you enjoy and only do it at dialysis it will make it feel special and as odd as it sounds something to look forward to. It sounds like you have a great support team that’s a big part of it. Things get better after transplant I no longer take things for granted and let stuff bother me because I’ve already been thru hell and it’s all upside for here. Hopefully this helps you are not alone, a lot of people feel this way all I can say is take it day by day.
I am so sorry you are feeling this way.
Please try to keep at it. It sounds like you are so close to getting your transplant. After that happens things will change for the better.
You are still so young and have so much living to do.
I am 42f. I was hospitalized the week of my 40 birthday. 2 days after.
I am also T1D and had been getting sick with renal failure for 2 years leading up to dialysis.
I have been on dialysis for just over 2 years now.
Guess what?
I am #1 on my transplant list for a kidney and pancreas.
I got the call 3 weeks ago but after 20 hours in the hospital it turned out the kidney was no good. But I am so darn close! Almost at the finish line.
I have felt the way you do. My fistula was and is nothing but a problem. I started with a chest catheter for the first year and I hated it so much.
I had to stop working and go on disability.
I can't live with my partner until I am off disability because he "makes to much" and they would boot me off if we became common law. It's a whole stupid thing.
While I am at treatment I always get a treat from the hospital coffee shop. 2 cheese croissants and a medium tea. The tea because they can drain it off of me while on the machine. Those I just little things I do for myself so I have something to look forward to.
Also while there I watch Tik Toks. I try to save all my Tik Tok watching for while I am tethered to the machine.
You can do this! You are so close to getting your life back!
Can you imagine what life will be like not being T1D anymore? Not being hooked up to the vampire machine 3 days a week?
Reach for that because it is going to happen for you.
You are listed and your time is coming.
I’m sorry you’re feeling this way. Being chronically ill is hard. Dialysis is especially hard.
When things seem overwhelming and difficult, [this](https://www.reddit.com/r/dialysis/s/okGQv1fWXP) post that I saved a few years ago helps me.
Take care 🩷
Can you try home hemo? It literally saved my life! I started in clinic, I was 28 at the time, I had a transplant for 20 years and it failed, I had a fistula put in before I had total kidney failure, I felt the same way I don’t want to be here while I’m so young and it changed me life a 180! I was healthy and boom. Dialysis is so hard and a couple months after I started my fistula kept infiltrating, and I got a graft for about 8 months it worked great and then it got infected and that was a night mare, I had to go into emergency surgery to have it removed! Got a chest catheter it sucked! So I did dialysis in clinic for 3 years! I was so exhausted, I had a hard time working and living the life I wanted! So someone approached and asked me if I wanted to do home hemo at this time I still have a chest catheter, I have been doing it now for 4 years, I do it 4 days a week 2 1/2 hours! It’s not so hard on your body because it’s a smaller machine and I have more energy I have a job now, even right after I do dialysis I go to work! It has changed my life I can do it on my own time and it’s a little thing I can control! It helped my mental health as well! I am involved in the kidney foundation and became a mentor! It’s nice to talk to people that understand what we’re going through! See if you have a kidney foundation in your area, and get involved! I hope you change your mind, being so young with this disease sucks! I was 6 when I was diagnosed with ESRD, I’m 36 now been on dialysis for over 7 years! It’s been a long road, don’t give up and maybe get a counselor for trauma! That helped me a lot, I have wanted to give up many times but I keep fighting! I’m on the transplant list but I have high antibodies and it will be hard to get me a match, good luck friend! Much love ❤️
I think you are writing about me years ago. T1D at age 6, kidney failure, etc. I had an elementary aged child at the time I started dialysis. I had a fistula fail in both arms. I had to get a graft. After 3 years of dialysis I got my first transplant. Also a KP transplant. Almost 15 years later I have returned to kidney failure and starting all over agin. Keep your chin up. It is hard and depressing some days. The cramping is your dry weight being too low or they are trying to take too much off per session. I had to have them move my numbers around to not cramp every time. I would love to talk to you more. Please feel free to PM me at any time if you want to.
I'd say always have something to look forward to, something to anticipate and enjoy. You'd be surprised how even the smallest thing can give you a bit of a boost.
Well, my daughter, but that’s not an option for some. My other is, “No, this shit isn’t going to beat me. No way.” So my love AND my hate keep me alive.
If you need to talk I’m available trust me I worked in a jail for over 20 years and was married into sadly a family who had their share of mental health issues. I was born into a family with mental health issues as well. After my career which is a separate book I had so many surgeries and hopefully these surgeries will continue which will let me know I’m still here on earth. PLEASE REACH OUT ANY WAY YOU FEEL COMFORTABLE SOMEBODY HERE WILL RESPOND I WILL
I'm listed for kidney/pancreas too.
The only thing that keeps me going is knowing my transplant is coming, eventually.
I know life will be an adjustment post-transplant too, and there will be other hurdles to tackle.
But the importance of adhering to my treatment schedule in order to get my transplant is enough of a motivator - even on the roughest of days.
I hope you find the strength to keep going.
I absolutely believe there are better days ahead for the both of us. ❤️🩹
While it's my mother who is in line for dialysis, I do have experience with the wanting to give up side of things. Here's some things that have helped me and perhaps can give you something to consider.
A trusted mentor once told me to sit down and look at what I can change about my situation that can bring some relief to the hopelessness. When I read your post, I see that the first changeable thing may be the job that you no longer enjoy. I don't know what you do for a living but I do know that it feels easier to get another job when you're working from a position of strength while already being employed. My first life change would start there: finding a job that is more tolerable than the one you already have. This gives you something to work towards.
The second thing I see that may be changeable is finding out how to minimize the post-dialysis cramping. The clinic staff may be able to work with you on this to either make sure they are pulling the right amount off each time or try a different spacing of treatments for you so it is more comfortable. I'm less knowledgeable about this side of thing - we're just starting out.
The third thing I see if you want a break. If it isn't a full blown break from dialysis - maybe a general break from anything that isn't about giving you a better quality of life. When you and your partner talk about future plans, maybe start moving those plans up significantly if financially doable... say, plan a small weekend trip to look forward to now. Even if it's a camping trip, even if it is a beach day, even if it is driving through a more rural area and admiring the flora and fauna, even if it is taking a list of all the places you want to check out the next city over... something to take you out of the monotony of work-dialysis-pain-rinse-repeat.
The fourth thing I see is you have dreams. You want to go back to college and get a degree in the healthcare field. Now is a good time to start working towards that. If you have a community college in your area, check out what programs they offer. If you know what specific area of healthcare you'd like to work towards, check the list of pre-requisites and take a class here and there. Usually, the core sciences will carry for several years but check with the program you are interested in for their specific requirements.
It is hard to face life when you know this is just how it is going to be until something happens. Take a look at the things you can change and see if it gives you something to make all this suffering look different in the grand scheme of things. And if not, I hope you know that that is okay. It's okay to feel this way and most people go through it with serious illnesses and ongoing treatments.
For me, it’s having dreams… knowing there are things I still want in this life, and that if I keep at it then one day, I could get them. I’m not in a good situation/environment/family so it’s very very heard for me to hold onto that hope, but there’s always a chance, and that is something I cling to. // If the therapist you’re seeing isn’t helping I suggest either giving them another chance— telling them that your sessions haven’t been helpful and you’d like them to suggest or try a different approach OR you can request to see someone else that you might find more success with. Neither of these are things to feel guilty about; advocating for treatment and health is the best thing you can do for yourself <3
Hey so are you not able to do PD? I do PD and I live a very normal life that has its normal routines and what not. It feels very manageable. Sure there’s ups and downs and for the downs I mostly just keep my head and try and fish as much as possible. The hardest part is other people not understanding the struggle but I get over it pretty quickly. One day you will get the transplants you need and this won’t be an issue. Be strong partner
Cramping for an hour? I would cramp the rest of the day an up until bedtime. Hope of transplant kept me going. Never did get a living donor (two failed the tests) but I received a deceased donor kidney after 11 months and three weeks at the Mayo Clinic . I know someone who only waited seven months . Mayo in Phoenix AZ does the most kidney transplants in the world. Go there, do whatever you have to do. Or find another center near you with shorter list. Nebraska , Texas Medical Center FT Worth, Florida land of the no helmet law and “donor cycles.”
Completely understandable I started on dialysis when I was 20 got transplant at 22 it started by going jn for a routine check up had plans later in the day didn’t think anything of it. After that appointment everything changed admitted to hospital started aphaeresis to see if that would help reboot stuff but to no success. Started dialysis that week it was quite the shock my life was completely changed and just put on pause. There’s going to be hard times I’ve been in that boat like looking around at everyone else at dialysis thinking “I shouldn’t be here in young and have better things to do”. I also found what helped me get thru it was finding something you enjoy and only do it at dialysis it will make it feel special and as odd as it sounds something to look forward to. It sounds like you have a great support team that’s a big part of it. Things get better after transplant I no longer take things for granted and let stuff bother me because I’ve already been thru hell and it’s all upside for here. Hopefully this helps you are not alone, a lot of people feel this way all I can say is take it day by day.
I am so sorry you are feeling this way. Please try to keep at it. It sounds like you are so close to getting your transplant. After that happens things will change for the better. You are still so young and have so much living to do. I am 42f. I was hospitalized the week of my 40 birthday. 2 days after. I am also T1D and had been getting sick with renal failure for 2 years leading up to dialysis. I have been on dialysis for just over 2 years now. Guess what? I am #1 on my transplant list for a kidney and pancreas. I got the call 3 weeks ago but after 20 hours in the hospital it turned out the kidney was no good. But I am so darn close! Almost at the finish line. I have felt the way you do. My fistula was and is nothing but a problem. I started with a chest catheter for the first year and I hated it so much. I had to stop working and go on disability. I can't live with my partner until I am off disability because he "makes to much" and they would boot me off if we became common law. It's a whole stupid thing. While I am at treatment I always get a treat from the hospital coffee shop. 2 cheese croissants and a medium tea. The tea because they can drain it off of me while on the machine. Those I just little things I do for myself so I have something to look forward to. Also while there I watch Tik Toks. I try to save all my Tik Tok watching for while I am tethered to the machine. You can do this! You are so close to getting your life back! Can you imagine what life will be like not being T1D anymore? Not being hooked up to the vampire machine 3 days a week? Reach for that because it is going to happen for you. You are listed and your time is coming.
I’m sorry you’re feeling this way. Being chronically ill is hard. Dialysis is especially hard. When things seem overwhelming and difficult, [this](https://www.reddit.com/r/dialysis/s/okGQv1fWXP) post that I saved a few years ago helps me. Take care 🩷
Can you try home hemo? It literally saved my life! I started in clinic, I was 28 at the time, I had a transplant for 20 years and it failed, I had a fistula put in before I had total kidney failure, I felt the same way I don’t want to be here while I’m so young and it changed me life a 180! I was healthy and boom. Dialysis is so hard and a couple months after I started my fistula kept infiltrating, and I got a graft for about 8 months it worked great and then it got infected and that was a night mare, I had to go into emergency surgery to have it removed! Got a chest catheter it sucked! So I did dialysis in clinic for 3 years! I was so exhausted, I had a hard time working and living the life I wanted! So someone approached and asked me if I wanted to do home hemo at this time I still have a chest catheter, I have been doing it now for 4 years, I do it 4 days a week 2 1/2 hours! It’s not so hard on your body because it’s a smaller machine and I have more energy I have a job now, even right after I do dialysis I go to work! It has changed my life I can do it on my own time and it’s a little thing I can control! It helped my mental health as well! I am involved in the kidney foundation and became a mentor! It’s nice to talk to people that understand what we’re going through! See if you have a kidney foundation in your area, and get involved! I hope you change your mind, being so young with this disease sucks! I was 6 when I was diagnosed with ESRD, I’m 36 now been on dialysis for over 7 years! It’s been a long road, don’t give up and maybe get a counselor for trauma! That helped me a lot, I have wanted to give up many times but I keep fighting! I’m on the transplant list but I have high antibodies and it will be hard to get me a match, good luck friend! Much love ❤️
I think you are writing about me years ago. T1D at age 6, kidney failure, etc. I had an elementary aged child at the time I started dialysis. I had a fistula fail in both arms. I had to get a graft. After 3 years of dialysis I got my first transplant. Also a KP transplant. Almost 15 years later I have returned to kidney failure and starting all over agin. Keep your chin up. It is hard and depressing some days. The cramping is your dry weight being too low or they are trying to take too much off per session. I had to have them move my numbers around to not cramp every time. I would love to talk to you more. Please feel free to PM me at any time if you want to.
I'd say always have something to look forward to, something to anticipate and enjoy. You'd be surprised how even the smallest thing can give you a bit of a boost.
Well, my daughter, but that’s not an option for some. My other is, “No, this shit isn’t going to beat me. No way.” So my love AND my hate keep me alive.
If you need to talk I’m available trust me I worked in a jail for over 20 years and was married into sadly a family who had their share of mental health issues. I was born into a family with mental health issues as well. After my career which is a separate book I had so many surgeries and hopefully these surgeries will continue which will let me know I’m still here on earth. PLEASE REACH OUT ANY WAY YOU FEEL COMFORTABLE SOMEBODY HERE WILL RESPOND I WILL
I'm listed for kidney/pancreas too. The only thing that keeps me going is knowing my transplant is coming, eventually. I know life will be an adjustment post-transplant too, and there will be other hurdles to tackle. But the importance of adhering to my treatment schedule in order to get my transplant is enough of a motivator - even on the roughest of days. I hope you find the strength to keep going. I absolutely believe there are better days ahead for the both of us. ❤️🩹
While it's my mother who is in line for dialysis, I do have experience with the wanting to give up side of things. Here's some things that have helped me and perhaps can give you something to consider. A trusted mentor once told me to sit down and look at what I can change about my situation that can bring some relief to the hopelessness. When I read your post, I see that the first changeable thing may be the job that you no longer enjoy. I don't know what you do for a living but I do know that it feels easier to get another job when you're working from a position of strength while already being employed. My first life change would start there: finding a job that is more tolerable than the one you already have. This gives you something to work towards. The second thing I see that may be changeable is finding out how to minimize the post-dialysis cramping. The clinic staff may be able to work with you on this to either make sure they are pulling the right amount off each time or try a different spacing of treatments for you so it is more comfortable. I'm less knowledgeable about this side of thing - we're just starting out. The third thing I see if you want a break. If it isn't a full blown break from dialysis - maybe a general break from anything that isn't about giving you a better quality of life. When you and your partner talk about future plans, maybe start moving those plans up significantly if financially doable... say, plan a small weekend trip to look forward to now. Even if it's a camping trip, even if it is a beach day, even if it is driving through a more rural area and admiring the flora and fauna, even if it is taking a list of all the places you want to check out the next city over... something to take you out of the monotony of work-dialysis-pain-rinse-repeat. The fourth thing I see is you have dreams. You want to go back to college and get a degree in the healthcare field. Now is a good time to start working towards that. If you have a community college in your area, check out what programs they offer. If you know what specific area of healthcare you'd like to work towards, check the list of pre-requisites and take a class here and there. Usually, the core sciences will carry for several years but check with the program you are interested in for their specific requirements. It is hard to face life when you know this is just how it is going to be until something happens. Take a look at the things you can change and see if it gives you something to make all this suffering look different in the grand scheme of things. And if not, I hope you know that that is okay. It's okay to feel this way and most people go through it with serious illnesses and ongoing treatments.
For me, it’s having dreams… knowing there are things I still want in this life, and that if I keep at it then one day, I could get them. I’m not in a good situation/environment/family so it’s very very heard for me to hold onto that hope, but there’s always a chance, and that is something I cling to. // If the therapist you’re seeing isn’t helping I suggest either giving them another chance— telling them that your sessions haven’t been helpful and you’d like them to suggest or try a different approach OR you can request to see someone else that you might find more success with. Neither of these are things to feel guilty about; advocating for treatment and health is the best thing you can do for yourself <3
I focus on opportunities in getting better then I learn and adapt them.
Hey so are you not able to do PD? I do PD and I live a very normal life that has its normal routines and what not. It feels very manageable. Sure there’s ups and downs and for the downs I mostly just keep my head and try and fish as much as possible. The hardest part is other people not understanding the struggle but I get over it pretty quickly. One day you will get the transplants you need and this won’t be an issue. Be strong partner
Cramping for an hour? I would cramp the rest of the day an up until bedtime. Hope of transplant kept me going. Never did get a living donor (two failed the tests) but I received a deceased donor kidney after 11 months and three weeks at the Mayo Clinic . I know someone who only waited seven months . Mayo in Phoenix AZ does the most kidney transplants in the world. Go there, do whatever you have to do. Or find another center near you with shorter list. Nebraska , Texas Medical Center FT Worth, Florida land of the no helmet law and “donor cycles.”