what do you tell yourself to keep going?

Hobbies. But also i'll be damned before i give up, fuck you genes you aint shit.

The not feeling good is part of how things are before dialysis. While it was a rough start for me, I feel so much better on dialysis than I had been before, I hadn’t realized how much I was run down. Some days I wake up and feel like a million bucks now.

I can’t speak to the arm thing; I opted for PD. I’m also middle aged and my field of proverbial “ducks” about appearance has long been dry and barren. I do kind of enjoy the occasional double take I get out and about because I just tape my catheter to my gut and it’s noticeable beneath my shirts. Can’t wait to rock a bikini with it. I’ve never had anyone who did double take say anything unkind, mostly anyone who has asked has a level of sympathy I found kind of nice to see in strangers. Human kindness is not completely dead yet.

Find the little things that make life worthwhile. Small joys in life. Kidney disease is a lot to deal with and we all have days like what you are describing and deserve to show ourselves some slack and grace and give ourselves a big internal hug. 🌸

Really, it's perspective. Dialysis is just one thing I do to stay alive. It's an off-shoot and a consequence of my real disease, an incurable cancer. I go to treatment for that weekly, too. I go to dialysis to keep me alive so I can continue to fight and stay in remission for my cancer. I have three jobs: teaching, dialysis, and cancer treatment. That's how I approach them.

It's rough at first, but three years in, and (and despite suffering from a bad case of bronchitis atm) I feel stronger and healthier now than I have in years. When I first got sick, this bronchitis would have landed me in the hospital for at least a week with pneumonia. Now, I'm just on a z-pack of antibiotics and on the mend.

Right now, I don't qualify for a transplant because of my cancer. I have to be in remission for 5 years, but it is a future goal. And if for some reason, I come out of remission and the goal is moved, I know I can fight and continue.

Anyways for a more constructive reply. Careers meh, not worth living for that anyway. You dont miss out on much, you just have to be more in self control, you can still go out, party, have fun, do hobbies, etc. Personally i just do whatever i feel lile, which is usually gaming but still, cycling, walking, you can watch stuff, do art, so much more. Im tired of this rethoric that somehow we are limited in what we can do, no we are limited in what and how much we can eat and drink, but if your only problem.is dyalsis then nothing is stopping you from doing shit you might do as a normal person, just in a more controlled manner.

I don't want my nieces and nephews to look at family photos and point at me and go "who's that?"

Like what else am I gonna do? Everyone has their struggles, this is mine. Just gotta keep putting one foot in front of the other.

I can't tell you anymore. I think about ending it every day. Granted I have more than dialysis stuff going on. But I'm pretty much over it all.

You don't feel well probably because you need to start dialysis. You might have toxins building up in your body, possibly your brain, which could be affecting how you feel right now. Once you start your treatment, you may feel better.

As far as our arms are concerned: I have a fistula. It's fully healed and mature. You have to really look to find the scar, but you can see where they put thr needles. I never cover up my arms when I go out in public. I have yet to catch anyone checking out my arm.

I'm not feeling pain, so sorry for that. I do PD every day and I don't like it at all. I need it, so I do it. It's just another routine, like brushing teeth, but takes much longer.

I've worked out logistics for travel and done it, so I don't let it drag me down. If there's a local event that looks fun, I go. Everything is not possible, but so what - it never was.

Dialysis is a means to an end and at least I know my path forward. It will end I will get a transplant and ideally lessen my daily burden

Music has always gotten me through life, it still does. I look at pictures of my nieces, remember how cool they are and how much I’ve enjoyed watching them grow. They’re both only toddlers still, but they’re so smart and so damn witty— I really set myself up with the oldest sometimes, she’ll call me out on the funniest of things (ex. “will your snoring wake me up?” because her room was above mine). I hold hope to be able to raise a child one day. I hold hope that things will improve— starting dialysis and relieving the symptoms of renal failure has helped immensely. I feel good now. A couple months ago I ran around and played hide and seek with my nieces, before dialysis I would’ve been too tired and nauseous to do that. I 100% understand the money aspect. I’ve got debt now because disability support is not a livable income, it sucks. Allow yourself to rely on people when they offer… it’s not charity, it’s care. <3 As for looks, I have a CVC and I don’t give a shit. I’m almost 30 and over time I care less and less about what other people think, and care more about showing myself kindness and love. Hold space for yourself to feel all your feelings out, do not hold them in. If you need to talk to someone, reach out to your doctor, or nurse and they can usually direct you to resources. I did not want to get back on dialysis, but now that I have, feeling good is better than a painful, miserable death. Yes, there are limits, but now that I feel good I feel like I have more freedom (even if I need to rely on a machine to be my kidneys). <3 Hang in there, you’ll feel better, but you have to give it time.

I have a son, he just turned 10. As much as everything hurts and I want it all to end, I owe it to him to be there as much as I can. That's all that keeps me going.

Life hurts with or without dialysis so personally I’d work on letting that one go first and foremost. Okay maybe we face more physical pain than your average joe but we’re still not guaranteed that if we had healthy kidneys.

I restarted dialysis again this January after a 10 year break thanks to my donated kidney. Betweeen around august last year and march this year I felt quite rough overall. Now, 4 months into dialysis I am seeing the old me from my transplant days and I love it. It takes time but you WILL get there!

Another point is do not let it consume your life. It will feel all consuming for a bit, and for now it is, but slowly as you feel better get back into your hobbies. I promise you it’s possible! I started circus training 3 years ago and am back at it now so I genuinely believe it is possible for you too!

I don’t have the option to give up. I’m only 38 with a 12 yo. I went on emergency dialysis on Jan 1st of this year after gaining 50 lbs of fluid that would go away. I’m finally down to the weight I was before getting sick and I am SO thankful for dialysis. Is it fun? Absolutely not. I actually take a melatonin before I go and stay up way late the night before (I go in at 710am) so I can’t sleep through it but I am thankful. I had a career in HR and I promised myself after transplant I WILL go back. Everything is relative. I also have other chronic illnesses and got a divorce through it all. I even had to move back in with my parents bc of how sick I am but God will see me through it all

Nearly dead, you can make it. Don't quit now, you've come so far. Try and take as many with you as possible when you do kick the bucket.

I’ve felt the same way; unnatractive, anxious about my future, tired about being tired, tired of the pain, feeling like no one understands my experiences - besides people on dialysis. I guess what keeps me going is trying to reestablish a new routine; working towards RN requisites, helping out at home, educating myself on healthy habits and teaching those to family members. There are some days I relapse and find it hard to get out of my room, but when it does happen I know to go outside and focus on moving and doing something. You should try to find out what gives you substance that’s short-term; little projects, short events, volunteering, and a couple of long-term goals.

I felt rant down going into kidney failure. I felt like I was dying and I had no energy. Even going up the stairs in my house or getting out the car was a chore. So I went to see my doctor who did a blood test. She called me the next day and said to go straight to the ER. I did. Spent two weeks in the hospital and came out with a chest tunnel catheter. They did 11 dialysis and gave me 4 transfusions in the hospital and I caught the rare calciphylaxis which I'm still dealing with. (, only two sores and both are healing). But I feel so much better. I'm actually working right now. I'm looking forward to starting PD soon so I can do my treatments at night at home. I don't like the clinic the chair is in uncomfortable and 9 hours in my bed sounds better than 4 hours in that chair. Plus pd is easier on the body and kidneys I'm told. I want to start the ball rolling on transplants. My mom is offering hers as we have same blood type. My dad is offering his as well but he's 0-. I'm A-. Honestly yes dialysis sucks. The renal diet sucks. But life is all we have. I want to keep going. I'm going to fight and focus on what I can do, what I can eat. My big complaint is I paid out a lot of money to join a country club the week before I went to the hospital only for pool access and now I can't use public pools. Such a waste. . I swear you'll feel better once you start dialysis. The removal of the toxins makes you feel better almost instantly.

It’s very difficult mentally and physically. I’m doing peritoneal dialysis and I hate the look of a tube hanging out my belly. Honestly sometime I want to stop doing it all and just die in my sleep, actually sounds peaceful. But then I think about my mom, she had a hard life and she’s still alive, I think I was the reason she’s still living, so for me to die like that I feel like it’s unfair for her. Also as mental as this sounds I think my future husband will be the one giving me a kidney so I’m waiting for him. Is that enough reasons? Probably not. But at least there are two.

I died twice last year (coded).

Not ready to die yet, so I go to dialysis because if I don't, I'll die.

Over five years on dialysis here. I’ve never been a whiny whimp and not gonna be one now. I also constantly remind myself that dialysis is better than the alternative. On the transplant list and can’t wait for the phone to ring.

The prospects of the future are usually what keeps people going. Family, friends, future goals, and an eventual transplant.

Give yourself some time to grieve and begin to heal. You will probably feel a bit better you start treatment. Don’t worry about the money or other material things right now, your life is your priority, the finances can be figured out later.

Is PD an option for you? Some people prefer it and can get back to a somewhat “normal” life on it. You could always give it a try before starting HD to see if you are okay with it.

I completely understand it does hurt at first your meds you might want to look over those talk to your doctor about your meds if your not feeling good taking them kidney disease is horrible I had a huge learning curve the first year I just simple tell myself I gotta keep going its definitely not the same for everyone sending you positive vibes 🫶

I’m sorry about how you view yourself, you are normal, the graft is your life line, you can still have a career, you can still have a personal life as well. I personally been on dialysis 7 years still working. Life is gonna be as good as you want. Please seek help as clearly as you are struggling mentally with the process. Things will get better.

I can only speak for myself, but dialysis has been much better for me than PD. And as others have said, find a hobby and dig into it

I’ve also gone through that, now got transplanted. Just hang in there and start the dialysis good things will happen. Maintain your haemoglobin with the dr prescribed injections. and follow the diet, you will be fine.

It beats dying.

How new is your graft? I have one also. I actually have two. It hurts at first. It will get better. You should have been given pain meds to take. If not, call and get some. Yes, you can do my graft, but who cares. It is part of me. Deal with it or don’t look. I have scars all over my body and I just don’t give a shit anymore. They have made me who I am today.

As far as going on every day, focus on what you can do, which is get practically anything.

If you are able to get an early morning or later in the afternoon hook up time you can still work. First time I worked full time. This time as I am older, I have opted to go on disability and say screw my job.

You need to approach this as just another stepping stone. It is just a stumble in life that happens to some people. Keep you head up. If you want to chat, DM me. I am an open book.

Oh buddy I felt similar to this when I started. I kinda get what you mean.

It seems impossible, but honestly, you still wake up each morning and go about life. It will be a different life, but just like always, there will be good days and bad days and dialysis will be a part of it, but you will still be you. You will feel so much better once you've started and the fear and uncertainity will ease out.

You will feel and look a bit different, but for me, the relief of feeling better on dialysis kind of balanced it out and I really did not care. I do understand that it might be different for everybody, that's just my experience.

I was so scared and angry before starting, but once I got started, I just got used to the changes I had to make for my new life. Sometimes I had to remind myself that life was different before and not all people are on dialysis - it became such a natural part of my life, it was hard to imagine otherwise.

I am now year and a half post transplant and I can tell you with all my heart, it is worth it. Life will change, fear, anger and confusion are perfectly normal, but through all of it, you will still be you living life as best as you can. Good luck ❤️

this is temporary

Something must be wrong with your graft because I've had 2 and they never hurt at all. I just tell myself that I have kids and family and friends that want me here.

At this point, I was gifted 10 additional years of life due to dialysis. I HATE the treatment and restrictions (I'm brutally upset about it), but life is worth it. There are a lot of people in the would that aren't lucky enough to have been born in a place where this is available. I'm extremely thankful, usually.

Edit to add: Woah, didn't even realize it's 11 years now.

Thank you all wonderful people for sharing your stories so others in similar situation can relate and provide their own perspectives. You are all awesome to make it this far in life and I want to hear more from you all!

I used to work at renal company manufacturing dialysis products. I was a chemist and worked hard to ensure the product made was safe to use. Every year the CEO would visit amd telling us how the conpany fared during the year and what the patients said about the company. It brought me to tears that we supported so many patients and made their dreams come true and it could be a small thing such as having a hobby that I take for granted myself.

Every month we would receive pallets of damaged and used product to be destroyed as per waste management policy as it is not fit for use and poses high risk for patients. I suspected some illegal activities in relation to shipping these products to the third world countries or developing nations to use as these patients does not have any other options than take the risk of using damaged or used/infected products. It's wrong by western standard but felt like the right thing turn a blind eye to as to other nations may not have the technology to produce dialysis filters/solutions.

Nursing jobs are tough and they do not get compensated to put up with the stress. In your next dialysis visit please tell your nurses or dialysis technicians or treating team that they did a great job - such simple positive encouragement will make not only your life better but everyone around you.

It is free to spread positive energy as this is something you can control and please take advantage of it.

Positive energy - be kind and please share your goals, talk about your hobbies, what are you looking to achieve? discuss topics that are in your interest. If you are shy - write it here or elsewhere online, make an anonymous account to protect your private identity. Everyone in reddit have the opportunity to listen to you and provide positive feedback. You will feel much better by being heard and understood - it will keep you going.

These important conversation has a tremendous positive effect on the wellbeing of yourself and everyone around you.

Maybe one day you do not have that positive energy and that is when someone else will bring back that positive energy that they got either got from you or another person.

If you have lost your cognitiv function to understand, reasoning and decision making capabilities - that is when positive energy may not reach your thoughts. Patients with intellectual disabilities, patients who are blind are unable to participate on Reddit, If you have hearing impairement you will not be able to understand communications via voice. Any disabilities of your senses will reduce your capacity of understanding positive energy. Keep your mind engaging at least with another human being whether it is in-person or online.

We all are dealt with different cards to make the best use of life - do not regret your choices will get you a long way in life.

I've been on dialysis since I was 14, I'm almost 35 now! Started off with ER hemo and quickly switched to PD which was better as a hs student. I still got to play sports! I felt good and did normal things and then my senior year of HS at 17 I was blessed with a kidney transplant, on Christmas day! Literal gift from God! It only lasted three years though and I went back on PD for another 10+ years while waiting on transplant list..they say it's harder to find a match second time around bc of increased antibodies. Well during that time I was living a normal life pretty much so thankful for PD and then I got a very rare disease from doing PD that long with no complications at all.. encapsulated peritoneal sclerosis..very rare but you might want to talk to Dr to maybe change out the catheter after 5+ years? Idk why but I guess they don't expect you to do PD for so long so well? But bc of major scar tissue bc of nature of PD it messed up my abdomen and it was the worst pain of my life, since EPS is soo rare, they didn't know what was wrong with me at first and I was in and out of hospital so much didn't know if I was gonna make it! Thankfully my nephro decided I need the catheter out and sure enough the catheter was literally disintegrated inside.. so in 2021 I started hemo, got fistula in arm and been stable and well since. Better than ever! It took a while to recover from effects of EPS but I got stronger and now am doing personal training to get stronger! I look better than I did when I was doing PD! I think when I did PD, I held on to water more and just looked swollen even though I wasn't. Body adjusted well I think and I treat it like a job.. after that near death feeling experience, I told myself I will do everything I want to do like going back to school as I couldn't finish degree at CC before when I was always not feeling well due to kidney issues and had to drop classes. I bought a sports car so I can have a little more excitement driving to dialysis 😜 just gotta do more things that will help your self esteem, take care of yourself, improve yourself! I also struggle with things like career bc I rn in my situation bc of health insurance I can't work full time and have a good 'title' which brings me down but I'm still going to work towards that! I think I can work full time eventually doing something fulfilling to me but need to strive for goals like degree ECT. just TRY bc you'll never know unless you try. Also have faith in God bc all that I went through was def not anything I did but bc I put faith in God who provided everything for me and helped me through everything..I think I'd literally be mentally unstable without my supports and faith considering all I went through and still going through.. stay positive and surround yourselves with good family and friends. :) Be Brave!

All I can tell you is keep fighting is gonna get worse before it gets better but I actually look forward to my dialysis because I feel so good the next day. I had panic attacks while connected to the machine. Now I’m so relaxed when connected. Stay strong. 💪🏽

I am getting ready for my first treatment which will give me some direction. I hate to say it but if I have to do dialysis 3 x a week then I would rather check out. I am 72, I have had a great life & 3x a week is no life.

thanks everyone for sharing your experience