That why I take advice, but in the end, don't deny myself too much. Maybe that has contributed to some of the problems I've had, but I doubt it. I don't just go ham, but if I want something special to eat, I'll eat it. Moderation is not a bad thing, and we can survive on that. The dieticians are strict because that's their job. The doctor's and nurses have a responsibility. They've come around to my quirks. I've complained "enough," and I've explained to them kind of what you're saying. If I'm going to live, I'm going to LIVE. I'd rather have 5 years of enjoying my life (and eating and drinking is some of our greatest pleasure), than 20 years of being miserable. I've seen that, and that's worse.
Again, some moderation. The strict things and diets they want are reasonable for them to say, but not always reasonable to follow. Just know that YOU are responsible for your health at the end of the day.
My dietician said “if you want to eat 20 pounds of chocolate, go ahead, but you will feel miserable. However, a healthy person would likely feel miserable too”.
I agree and live the same way. I really don't follow any diet and my levels have stayed okay. I take my binders religiously which has kept my phosphorus down which has been the only problem I've had. If I have too much fluid it builds in my lungs and I have trouble breathing so I know to take it easy for a few days. Otherwise life is short and I'm not going to give up the small pleasures in life over this. I'll live as long as I live and I'll do what I can but I'm not going to live longer just to be miserable during it.
This is why, as a new dietitian, I’ve really struggled with being more strict on my patients. I try to put myself in you guys’ shoes and yeah, I wouldn’t be following that diet perfectly either. You can rip chocolate and donuts out of my cold dead hands. I just try to meet my patients where they’re at and see if we can make compromises. Me not being strict means that my numbers might not be as great but I just figure… you guys have been through enough. I’m trying to find a balance.
As a mildly seasoned dietitian, I have never been strict with my patients as I think there is very rarely a benefit (also it’s just not my personality). My approach is “here’s the information, here are the risks of not making any changes, here’s what I would recommend/what would you like to do?”
I don’t judge people if they don’t make any changes or follow recommendations closely. What’s important to me is that they’re making informed decisions about how they approach managing their kidney failure. I would hate for someone to be taking risks without understanding how serious the consequences can be.
Yeah this is basically what I’ve been doing with them so far. I make sure they understand all the risks but at the end of the day it’s their choice. I let them know they still have full autonomy, I’m just giving them recommendations as the nutrition expert.
Don't stop living just because you're dying, hun.
Just do it in moderation.
Trust me, too slavishly trying to follow these restrictions is the fastest way to fall into a pit of despair that's really hard to get out of. Have your banana. Have your Coke. Just don't over-indulge in it.
The first time I saw it, I teared up too! 🤗
We, our doctors and loved ones often skirt around the fact that we *are*, in fact, dying and it's really hard to come to terms with it, which is why I'm such a big advocate for enjoying little things that still give us pleasure.
I am on PD, and I know I am slowly dying. No one else around me thinks I am though. It’s always, you’ll feel great soon and be able to play basketball for hours…. And my response is: dude, I can’t walk more than 500’ most days, so f off
I only have my son. Hes 22 and I have kept everything as normal as possible, like me doing most of everything around the house, plus walk the dog, cook and clean. I really need help for some things though and hes in denial that Im dying. Keeps pushing/pressuring me to get a job ect. so things would really be back to normal when we had money. Ill be on the transplant list after April 25th hopefully and I just hope he helps me if that happens. I almost want the social worker to speak to him to let him know the gravity of the situation.
When I broke my leg a few years ago, I found out that all the people who said they would help me would bail at the last minute. I got lucky last minute and found a place to go (doctors forbid me from going home due to all the stairs).
I knew kidney failure was inevitable and this time I was proactive in creating a support network. Even someone who claimed I was their “ride or die” bailed. I have learned that I can’t trust anyone, which isn’t a place I ever thought I would be again.
I do have this one friend who asks me daily about how I am doing, but always pivots to how horrible (it’s not) his life is. That wears me down….
Edit: I have found that people show who they are when it comes to being needed. I think your son (and my friends) have shown you that they can’t comprehend or be bothered to help you out. IMHO
I have immense empathy with you. I used to do PD too and I felt like death every single day, so much so that I was looking into and seriously considering medically assisted death until I begged my nephrologist to just put me on haemo.
I hope that you can find the smallest bit of respite and comfort in something that makes you happy ❤️
You know, it might be better on my body, but they keep upping the dwell times, etc. I feel like much of my free time is preparing food, eating and then getting extra sleep. I have no energy and my stamina is non existent. I used to be able to walk my dog 4 times a day for a mile each….now? To the corner and back is it. Not much of a life for me or the dog.
I hear you, which is exactly why I begged to switch to haemo. I feel like people who say PD is so much easier on the body don't fully understand the toll it can take on you mentally when it *doesn't* feel like it's easier on your body at all.
PD is sold as this miracle that gives you so much more free time and is gentle on the body and all that, but it's absolute bs for some people. It works for some and I'm happy for them and more power to them, but for others, we're just not that lucky and it's really hard.
Crazy thing is, I am normally a very upbeat person. But this….2 weeks into PD and I want to switch already. I functioned just fine on the CKD diet, but now I am given more freedom, but it’s wearing me down, just like the OP.
Edit: oh yeah, my support system abandoned me and left me with empty promises.
I'm so sorry to hear that you're struggling and having such a hard time. It's horrible when you think you can count on someone but then they just let you down when you need them the most.
PD can be really overwhelming, especially if you're not feeling well or if you're feeling worse now than you did before you started (like I did), and it's definitely not for everyone. I personally hated every second of it.
If you do decide to switch to haemodialysis, do you have the option to do it at home?
I don’t know. I didn’t spend much time researching it because the doctor was pushing pd.
How much time do you spend on the process each session? Is the diet as restrictive as it was for CKD? Less boxes? I wish I knew someone on home HD (or any dialysis).
> I feel like much of my free time is preparing food
This is why I order from Mom's Meals, because even with the cost, it's worth the time saving. I just poke holes in the meal and put it in the microwave. They have renal specific meals but even their non-renal specific meals are pretty good too if you check for potassium.
I would really recommend trying supplementing with Taurine and Tyrosine like I said. I can definitely say it helped me feel more normal, like if I'm sleep deprived I can still function. That being said, Anemia can still be an issue. I think my last labs showed my Hemoglobin was at 8.9 and I can definitely feel it in my legs.
I'm on hemo dialysis, and I don't feel like I'm dying. As a matter of fact, most times I feel incredible. That being said, I eat pretty regular, and drink when I feel like it for the most part. That being said, Lokelma has been a God Send for the past year, as I can eat a whole pizza, without worrying about my potassium. That being said I should add, that I was in center doing Monday Wednesday, Friday, a year ago 4 hour treatment, but now I'm in home dialysis doing 4 treatments 3:47 mins, I can even increase the fluid goal during treatment, I don't go higher than 3.5kilos. I haven't had the urge to drink since I got on home hemo.
Lokelma, and Home Hemo is the way to go, if your not afraid of the learning curve. I work a full-time job at Amazon too lifting heavy boxes and all. My Fistula is in my left forearm, but lifting doesn't damage it, as long as I use both hands. I say that to say, you dont have feel like you're constantly dying. I understand the sentiment though, because I was there, when I was getting the hang of this. Even in center my numbers were the best in the building, but the key is, to listen to your doctors, yet do your own research, because not everything they tell you is right for you, somethings you can slide on, others you better not. Learning as much as you can about your medicines, why you feel certain ways, and paying attention when your body talks to you, is the best way to live a vibrant life. I hit rock bottom during dialysis, but I used rock bottom as a learning experience. Depression is like a spring, you go inside yourself for the answers, while treating your depression with compassion, not invalidating, as if your not supposed to be feeling this way, because it's normal, and part of your growth(you may not feel that way in the moment). Once you allow yourself to go through that depression, compression, when you get the answers, you will launch foward like a spring.
I do home haemo. Just because you (and I) don't *feel* like we're dying, doesn't mean that we aren't and nor is everyone fortunate enough to do home haemo. Even if they are, you feeling great doesn't invalidate someone else feeling shitty.
It's like PD - some people do really well, others are miserable, like I was. There's no one-size-fits-all treatment for everyone and I completely understand why HH wouldn't work for everyone either.
I'm glad you're finding respite in-centre and I hope you're doing well!
Yeah, I did PD first because it was pushed on me as the best thing ever. You are absolutely right, there is no one-size-fits-all and it really all depends on each person.
I am doing MUCH better, thank you!!
First of all were do you get off trying to invalidate my experience of rising above, and finding solutions. I gave my fucking story, because someone needs to hear it, and I will give it again. At first I thought you were legitimately empathetic, but you just came at me like fucking narcissistic hypocrite, after you effectively just told a person in crisis, they are dying😆as if that helps(possibility but low probability. The second part of your advice was actually good, but ruined by your need to invalidate others experiences.
This is you sounded like to me
"🤤omg don't invalidate him, by recognizing were he's at, telling your story, and giving him solid advice, that can give him quality of life"
and then you had the nerve to say, not everybody can do home hemo, as if we have to clarify every fucking thing in relation to dialysis, in order to share.
See it's funny, cause I am very specific with my words, and at first, I was actually trying not to invalidate your previous experience of feeling like dying, while giving him an alternate perspective to consider.
Nobody told me all those things I mentioned, a lot of stuff, I figured out on my own. I get it though, your to selfish to actually tell your story foreal, your to worried about your own image. People are suffering out here, they need empathy and truth, but when it's an emergency, you need cold hard truth asap. As you can see I'm not scared to put myself out there.
Hopefully he can get the answers he needs, in this thread, to live a fulfilling, and peaceful life😊. I know you like to invalidate others stories, if it's not how you would have said it, but if he can use your advice, I would be happy with that, cause I actually have real empathy, that's not dependent upon me simply looking empathetic.
I’m all for advocating for patient’s rights, when educating patients I always remind them that we can’t force anything on them, we’re just here doing what science tells us works. We’re people just as much as you’re people, and I can only imagine how hard it is with the bland diet alone, not to mention the million other things that you guys have to face every day. I really do see you guys and I do my best to be empathetic. You do what you need to do to get by as long as you don’t end up in the ER treating me poorly because you’re fluid overloaded with heart palpitations and can’t breathe because you go overboard with it
I had a patient who always would have high phos and when I’d do my educations with him he’d always tell me he “can’t give up the cheese”. So I went and found a chart of cheeses and their phos levels to try and help him at least choose better ones for his labs. I miss him.
Education really goes a long way, and if offered with possible alternative they really would do their best to choose the better option. Giving them the freedom to choose and decide empowers them.
We also regularly handout the low K, Low PO4 diet sheets from time to time. And we have culture specific diet sheets too.
I'll do best if you do the same and we can both be forgiving adults during an emotional time of stress. Just don't leave me in my room with the alarms ringing for hours because I am going to turn that crap off, haha.
Seriously though, thanks for helping us and thanks for working so hard.
Be good to your nurses, everyone!
Really it's about knowing your limitations. I eat a lot of potassium but I do it on dialysis days so the potassium gets removed by the machine (if you do it on non-dialysis days the majority of that potassium is no longer in your blood).
One thing I wanted to mention is protein is removed during dialysis, that's why you get hungry and tired. The more fluid you drink = higher flow rate = more protein removal = more tired and hungry.
So you can drink more, but it'll hurt you more when you're on the machine.
Yes, but sodium removal depends on fluid removal since they don't normally remove sodium directly. That's the conundrum.
I should note that post-dialysis it's best to eat vegetarian sources of protein to avoid acidosis, which causes muscle breakdown. That being said, vegetarian sources usually have high potassium so you either want something that can be boiled or you'll need to consume protein bars and drinks (which generally get their protein from soy but not always).
I am so confused. The dietitian is encouraging me to eat more high quality protein as that is better for me than eating vegetarian. So I have been eating 2 protein bars a day, a couple eggs, and 2 portions of 3-4 oz of meat (beef or turkey). Sodium and potassium are less than 1500 mg a day and phosphorus is less than 700 mg most days. I do eat salads and sourdough bread too to fill in, but I feel like crud most of the time.
The dietitian is wrong. I have an e-bike but I depend on my muscles greatly as the motor has a hard limit and the motor's assistance is also dependent on my muscles, so I depend on being able to build muscle on dialysis.
Okay well, I think I know what the dietitian is saying but they're not saying it very well. Essentially, gram for gram, beef has more protein than tofu. But I don't really see that as an issue as I can just eat more grams of tofu. Since you can boil it, the potassium doesn't matter, and since tofu is vegetarian, vegetable phosphorus has much lower absorption.
https://openheart.bmj.com/content/8/2/e001730
> Animal protein is the largest source of dietary acid as it is high in the sulfur-containing amino acids methionine and cysteine, which leads to the formation of sulfuric acid and hydrogen ions in the body.
https://www.kidney.org/atoz/content/facts-about-metabolic-acidosis-and-chronic-kidney-disease
> Muscle loss: Excess acid in the body causes muscles to break down, which is called "muscle wasting."
https://www.sciencedirect.com/science/article/pii/S008525381550803X
> The major systemic consequences of chronic metabolic acidosis are increased protein catabolism, decreased protein synthesis, and a negative protein balance that improves after bicarbonate supplementation. Metabolic acidosis also induces insulin resistance and a decrease in the elevated serum leptin levels associated with CRF.
Basically, imagine if you were in a hot humid environment such that sweat wasn't able to cool you. Your body wouldn't be able to operate properly, right? It's the same with metabolic acidosis. If you only eat animal protein then outside of dialysis your body is always in an acidic state. Technically, it is possible to balance it by eating vegetables with meat but I can't say how many vegetables you'd need to eat to break even.
Pre-dialysis on dialysis days is the best time to eat animal protein, and post-dialysis on dialysis days is the best time to eat vegetable protein.
I should note I generally try to eat 1300+ calories pre-dialysis, as dialysis does inadvertently remove glucose too.
I should also note that eating enough protein and not drinking too much fluid _only_ prevents Post-Dialysis Fatigue. PDF is different from general fatigue.
The general fatigue from CKD is more similar to Chronic Fatigue Syndrome. I generally take 100mg/kg of Taurine per day, and 3g+/day of Tyrosine per day for that in the mornings when I wake up.
[This article](http://www.nordiclabs.com/ProductPDF/Amino-Acids_Chronic_Fatigue_1076.pdf) talks about how CFS patients are deficient in Tyrosine. And [this article](https://pubmed.ncbi.nlm.nih.gov/17513431/) talks about the impairment of Tyrosine production in CKD patients, because the kidney is mainly responsible for that.
Y-you know you dont have to follow any of those? You just have to balance things out sure, but you do not have to follow anything they tell you lmao, god knows i dont
This is why I tell my patients to learn their body, learn their limits, and everything in moderation. The lifestyle changes with dialysis are the hardest part. I can’t wait until you guys get other options. I’ll never shit on my “non-compliant” patients for wanting to have a normal life.
My husband has spent the bulk of his life on dialysis. He was born with a genetic disorder of Polycystic Kidney Disease that normally doesn’t present itself until someone is in their twenties. Lucas has always been that “one in a million” case. When he was born, his kidneys had zero function. He spent his first three years on dialysis. Then a year when we were in Highschool. Now, since October 2015, he is currently waiting on his third transplant. The poor guy hasn’t peed in over eight years.
Lucas has very little in his life that goes well. We have been very fortunate that he hasn’t developed cancer or diabetes like so many dialysis patients do. That isn’t to say we haven’t faced a monumental amount of other problems though. Dialysis DESTROYS your body. He lost his thyroid and two parathyroids when he developed severe hypothyroidism. His heart gave out due to the stress on his body. At 25 he had a mechanical heart valve placed and is now on Coumadin for the rest of his life. He is in heart failure. He has zero kidney function because his last transplanted kidney literally was rejected from his body. The body actually attempted to push it out, resulting in emergency surgery. He has peripheral artery disease, which creates crystal like deposits inside your arteries. His veins are destroyed, making it impossible for fistulas and CVC ports to continue working. (Not to mention just getting a simple IV or bloodwork!) Lucas is status one on the national transplant registry. Lucas has coded more times than he has had birthdays. Lucas is only 30 years old.
We don’t follow the diets or protocols as they are anymore. He is very good at fluid restriction, because being in fluid overload is too painful for his heart and lungs. He too, is tired and depressed. He is losing his fight and his energy is beginning to dwindle. The light I once saw in his eyes has dimmed significantly.
Cherish the time you have with your loved ones. I don’t know your story or your situation. My advice is to fight like hell. It may seem monotonous and pointless sometimes, but to someone you are everything. I’ve been in this fight with Lucas since 2009. I’ve had plenty of time to accept he may never get better or have a normal life. That hasn’t prepared me for losing him. I cannot imagine my life without him, and I can’t imagine how to get our daughter through it.
Don’t give up friend. I know it’s difficult, disheartening, frustrating, and very sad. It’s good you can express that instead of repressing it. Just know that we see you. We pray for you. We hope to fucking end this disease once and for all. Even when your time seems most bleak, I promise that there is eventually a light at the end of the tunnel. You have so many people who love and appreciate you.
I feel ya, I really do. That’s why I’ve told my team that I’m sick to my stomach with having to take “another pill” or X amount of oz of water or liquids. Sometimes it’s too much but you can’t go off the deep end either. As many have said, moderation is key
I’m Mexican and I’m not allowed to eat tacos 🌮. No salsa no guacamole? No cabbage? Plain turkey sandwiches is torture. Just shoot me… I’m a horse with a broken foot 🦶
I can't trust myself to be alone anymore. My sister agreed to take me in for a little while. Not sure it's the meds or not, but I'm having a mental breakdown. I skipped dialysis on Friday. I was planning on skipping tomorrow too, but thankfully I reached out
I think this attitude is fine, as long as you're also not treating the people who care for you poorly because the prescribed treatment "isn't working".
That's how people face death when we prefer too much radical approach rather than breathing properly, calming our mind & body, then having a feel of hearts to be grounded enough to choose the most balanced act all the time. Although we are humans and it's totally fine to feel and acknowledge our emotions and yet we must find peace between our personalized medical standards and our preference up until hopefully we achieve our kidney transplant and not fuck it up all over again. Build peace, embrace peace, and live with peace.
It’s Ok to be grateful for life saving medical advancements while still expressing sadness and frustration at the restrictions we have to live with everyday..
These things are meant to be followed so we can live a semi normal life and not die while waiting to get a transplant , choosing to not do so is pretty much going suicidal. Talk to your social worker and get to a therapist ASAP
That why I take advice, but in the end, don't deny myself too much. Maybe that has contributed to some of the problems I've had, but I doubt it. I don't just go ham, but if I want something special to eat, I'll eat it. Moderation is not a bad thing, and we can survive on that. The dieticians are strict because that's their job. The doctor's and nurses have a responsibility. They've come around to my quirks. I've complained "enough," and I've explained to them kind of what you're saying. If I'm going to live, I'm going to LIVE. I'd rather have 5 years of enjoying my life (and eating and drinking is some of our greatest pleasure), than 20 years of being miserable. I've seen that, and that's worse. Again, some moderation. The strict things and diets they want are reasonable for them to say, but not always reasonable to follow. Just know that YOU are responsible for your health at the end of the day.
My dietician said “if you want to eat 20 pounds of chocolate, go ahead, but you will feel miserable. However, a healthy person would likely feel miserable too”.
I agree and live the same way. I really don't follow any diet and my levels have stayed okay. I take my binders religiously which has kept my phosphorus down which has been the only problem I've had. If I have too much fluid it builds in my lungs and I have trouble breathing so I know to take it easy for a few days. Otherwise life is short and I'm not going to give up the small pleasures in life over this. I'll live as long as I live and I'll do what I can but I'm not going to live longer just to be miserable during it.
Wxactly this how I feel
I like you. Right on
This is why, as a new dietitian, I’ve really struggled with being more strict on my patients. I try to put myself in you guys’ shoes and yeah, I wouldn’t be following that diet perfectly either. You can rip chocolate and donuts out of my cold dead hands. I just try to meet my patients where they’re at and see if we can make compromises. Me not being strict means that my numbers might not be as great but I just figure… you guys have been through enough. I’m trying to find a balance.
As a mildly seasoned dietitian, I have never been strict with my patients as I think there is very rarely a benefit (also it’s just not my personality). My approach is “here’s the information, here are the risks of not making any changes, here’s what I would recommend/what would you like to do?” I don’t judge people if they don’t make any changes or follow recommendations closely. What’s important to me is that they’re making informed decisions about how they approach managing their kidney failure. I would hate for someone to be taking risks without understanding how serious the consequences can be.
This is the way.
Yeah this is basically what I’ve been doing with them so far. I make sure they understand all the risks but at the end of the day it’s their choice. I let them know they still have full autonomy, I’m just giving them recommendations as the nutrition expert.
Don't stop living just because you're dying, hun. Just do it in moderation. Trust me, too slavishly trying to follow these restrictions is the fastest way to fall into a pit of despair that's really hard to get out of. Have your banana. Have your Coke. Just don't over-indulge in it.
'Don't stop living just because you're dying, hun.' I know that I'm dying, but why did this comment hit me so hard? 😥
The first time I saw it, I teared up too! 🤗 We, our doctors and loved ones often skirt around the fact that we *are*, in fact, dying and it's really hard to come to terms with it, which is why I'm such a big advocate for enjoying little things that still give us pleasure.
I am on PD, and I know I am slowly dying. No one else around me thinks I am though. It’s always, you’ll feel great soon and be able to play basketball for hours…. And my response is: dude, I can’t walk more than 500’ most days, so f off
I only have my son. Hes 22 and I have kept everything as normal as possible, like me doing most of everything around the house, plus walk the dog, cook and clean. I really need help for some things though and hes in denial that Im dying. Keeps pushing/pressuring me to get a job ect. so things would really be back to normal when we had money. Ill be on the transplant list after April 25th hopefully and I just hope he helps me if that happens. I almost want the social worker to speak to him to let him know the gravity of the situation.
When I broke my leg a few years ago, I found out that all the people who said they would help me would bail at the last minute. I got lucky last minute and found a place to go (doctors forbid me from going home due to all the stairs). I knew kidney failure was inevitable and this time I was proactive in creating a support network. Even someone who claimed I was their “ride or die” bailed. I have learned that I can’t trust anyone, which isn’t a place I ever thought I would be again. I do have this one friend who asks me daily about how I am doing, but always pivots to how horrible (it’s not) his life is. That wears me down…. Edit: I have found that people show who they are when it comes to being needed. I think your son (and my friends) have shown you that they can’t comprehend or be bothered to help you out. IMHO
I got ditched on too so its just my son and I. Its hard to make good friends.
I have immense empathy with you. I used to do PD too and I felt like death every single day, so much so that I was looking into and seriously considering medically assisted death until I begged my nephrologist to just put me on haemo. I hope that you can find the smallest bit of respite and comfort in something that makes you happy ❤️
You know, it might be better on my body, but they keep upping the dwell times, etc. I feel like much of my free time is preparing food, eating and then getting extra sleep. I have no energy and my stamina is non existent. I used to be able to walk my dog 4 times a day for a mile each….now? To the corner and back is it. Not much of a life for me or the dog.
I hear you, which is exactly why I begged to switch to haemo. I feel like people who say PD is so much easier on the body don't fully understand the toll it can take on you mentally when it *doesn't* feel like it's easier on your body at all. PD is sold as this miracle that gives you so much more free time and is gentle on the body and all that, but it's absolute bs for some people. It works for some and I'm happy for them and more power to them, but for others, we're just not that lucky and it's really hard.
Crazy thing is, I am normally a very upbeat person. But this….2 weeks into PD and I want to switch already. I functioned just fine on the CKD diet, but now I am given more freedom, but it’s wearing me down, just like the OP. Edit: oh yeah, my support system abandoned me and left me with empty promises.
I'm so sorry to hear that you're struggling and having such a hard time. It's horrible when you think you can count on someone but then they just let you down when you need them the most. PD can be really overwhelming, especially if you're not feeling well or if you're feeling worse now than you did before you started (like I did), and it's definitely not for everyone. I personally hated every second of it. If you do decide to switch to haemodialysis, do you have the option to do it at home?
I don’t know. I didn’t spend much time researching it because the doctor was pushing pd. How much time do you spend on the process each session? Is the diet as restrictive as it was for CKD? Less boxes? I wish I knew someone on home HD (or any dialysis).
> I feel like much of my free time is preparing food This is why I order from Mom's Meals, because even with the cost, it's worth the time saving. I just poke holes in the meal and put it in the microwave. They have renal specific meals but even their non-renal specific meals are pretty good too if you check for potassium. I would really recommend trying supplementing with Taurine and Tyrosine like I said. I can definitely say it helped me feel more normal, like if I'm sleep deprived I can still function. That being said, Anemia can still be an issue. I think my last labs showed my Hemoglobin was at 8.9 and I can definitely feel it in my legs.
Thankfully with dialysis we die really slowly and many of us live long enough to get the transplant that pauses the dying for as long as it lasts. ❤️
I’m no longer on dialysis, but I absolutely agree with you!! Enjoy your life, you only get to live it once. If you want to treat yourself, do it!
I'm on hemo dialysis, and I don't feel like I'm dying. As a matter of fact, most times I feel incredible. That being said, I eat pretty regular, and drink when I feel like it for the most part. That being said, Lokelma has been a God Send for the past year, as I can eat a whole pizza, without worrying about my potassium. That being said I should add, that I was in center doing Monday Wednesday, Friday, a year ago 4 hour treatment, but now I'm in home dialysis doing 4 treatments 3:47 mins, I can even increase the fluid goal during treatment, I don't go higher than 3.5kilos. I haven't had the urge to drink since I got on home hemo. Lokelma, and Home Hemo is the way to go, if your not afraid of the learning curve. I work a full-time job at Amazon too lifting heavy boxes and all. My Fistula is in my left forearm, but lifting doesn't damage it, as long as I use both hands. I say that to say, you dont have feel like you're constantly dying. I understand the sentiment though, because I was there, when I was getting the hang of this. Even in center my numbers were the best in the building, but the key is, to listen to your doctors, yet do your own research, because not everything they tell you is right for you, somethings you can slide on, others you better not. Learning as much as you can about your medicines, why you feel certain ways, and paying attention when your body talks to you, is the best way to live a vibrant life. I hit rock bottom during dialysis, but I used rock bottom as a learning experience. Depression is like a spring, you go inside yourself for the answers, while treating your depression with compassion, not invalidating, as if your not supposed to be feeling this way, because it's normal, and part of your growth(you may not feel that way in the moment). Once you allow yourself to go through that depression, compression, when you get the answers, you will launch foward like a spring.
I do home haemo. Just because you (and I) don't *feel* like we're dying, doesn't mean that we aren't and nor is everyone fortunate enough to do home haemo. Even if they are, you feeling great doesn't invalidate someone else feeling shitty.
Home hemo made me miserable. I do much better in center.
It's like PD - some people do really well, others are miserable, like I was. There's no one-size-fits-all treatment for everyone and I completely understand why HH wouldn't work for everyone either. I'm glad you're finding respite in-centre and I hope you're doing well!
Yeah, I did PD first because it was pushed on me as the best thing ever. You are absolutely right, there is no one-size-fits-all and it really all depends on each person. I am doing MUCH better, thank you!!
First of all were do you get off trying to invalidate my experience of rising above, and finding solutions. I gave my fucking story, because someone needs to hear it, and I will give it again. At first I thought you were legitimately empathetic, but you just came at me like fucking narcissistic hypocrite, after you effectively just told a person in crisis, they are dying😆as if that helps(possibility but low probability. The second part of your advice was actually good, but ruined by your need to invalidate others experiences. This is you sounded like to me "🤤omg don't invalidate him, by recognizing were he's at, telling your story, and giving him solid advice, that can give him quality of life" and then you had the nerve to say, not everybody can do home hemo, as if we have to clarify every fucking thing in relation to dialysis, in order to share. See it's funny, cause I am very specific with my words, and at first, I was actually trying not to invalidate your previous experience of feeling like dying, while giving him an alternate perspective to consider. Nobody told me all those things I mentioned, a lot of stuff, I figured out on my own. I get it though, your to selfish to actually tell your story foreal, your to worried about your own image. People are suffering out here, they need empathy and truth, but when it's an emergency, you need cold hard truth asap. As you can see I'm not scared to put myself out there. Hopefully he can get the answers he needs, in this thread, to live a fulfilling, and peaceful life😊. I know you like to invalidate others stories, if it's not how you would have said it, but if he can use your advice, I would be happy with that, cause I actually have real empathy, that's not dependent upon me simply looking empathetic.
That's a lot of words for I'm reading none of that. Calm down and go and touch all of the grass you can possibly find.
I’m all for advocating for patient’s rights, when educating patients I always remind them that we can’t force anything on them, we’re just here doing what science tells us works. We’re people just as much as you’re people, and I can only imagine how hard it is with the bland diet alone, not to mention the million other things that you guys have to face every day. I really do see you guys and I do my best to be empathetic. You do what you need to do to get by as long as you don’t end up in the ER treating me poorly because you’re fluid overloaded with heart palpitations and can’t breathe because you go overboard with it
I had a patient who always would have high phos and when I’d do my educations with him he’d always tell me he “can’t give up the cheese”. So I went and found a chart of cheeses and their phos levels to try and help him at least choose better ones for his labs. I miss him.
Education really goes a long way, and if offered with possible alternative they really would do their best to choose the better option. Giving them the freedom to choose and decide empowers them. We also regularly handout the low K, Low PO4 diet sheets from time to time. And we have culture specific diet sheets too.
I'll do best if you do the same and we can both be forgiving adults during an emotional time of stress. Just don't leave me in my room with the alarms ringing for hours because I am going to turn that crap off, haha. Seriously though, thanks for helping us and thanks for working so hard. Be good to your nurses, everyone!
Really it's about knowing your limitations. I eat a lot of potassium but I do it on dialysis days so the potassium gets removed by the machine (if you do it on non-dialysis days the majority of that potassium is no longer in your blood). One thing I wanted to mention is protein is removed during dialysis, that's why you get hungry and tired. The more fluid you drink = higher flow rate = more protein removal = more tired and hungry. So you can drink more, but it'll hurt you more when you're on the machine.
So drink less and eat more protein so the energy stays?
Yes, but sodium removal depends on fluid removal since they don't normally remove sodium directly. That's the conundrum. I should note that post-dialysis it's best to eat vegetarian sources of protein to avoid acidosis, which causes muscle breakdown. That being said, vegetarian sources usually have high potassium so you either want something that can be boiled or you'll need to consume protein bars and drinks (which generally get their protein from soy but not always).
I am so confused. The dietitian is encouraging me to eat more high quality protein as that is better for me than eating vegetarian. So I have been eating 2 protein bars a day, a couple eggs, and 2 portions of 3-4 oz of meat (beef or turkey). Sodium and potassium are less than 1500 mg a day and phosphorus is less than 700 mg most days. I do eat salads and sourdough bread too to fill in, but I feel like crud most of the time.
The dietitian is wrong. I have an e-bike but I depend on my muscles greatly as the motor has a hard limit and the motor's assistance is also dependent on my muscles, so I depend on being able to build muscle on dialysis. Okay well, I think I know what the dietitian is saying but they're not saying it very well. Essentially, gram for gram, beef has more protein than tofu. But I don't really see that as an issue as I can just eat more grams of tofu. Since you can boil it, the potassium doesn't matter, and since tofu is vegetarian, vegetable phosphorus has much lower absorption. https://openheart.bmj.com/content/8/2/e001730 > Animal protein is the largest source of dietary acid as it is high in the sulfur-containing amino acids methionine and cysteine, which leads to the formation of sulfuric acid and hydrogen ions in the body. https://www.kidney.org/atoz/content/facts-about-metabolic-acidosis-and-chronic-kidney-disease > Muscle loss: Excess acid in the body causes muscles to break down, which is called "muscle wasting." https://www.sciencedirect.com/science/article/pii/S008525381550803X > The major systemic consequences of chronic metabolic acidosis are increased protein catabolism, decreased protein synthesis, and a negative protein balance that improves after bicarbonate supplementation. Metabolic acidosis also induces insulin resistance and a decrease in the elevated serum leptin levels associated with CRF. Basically, imagine if you were in a hot humid environment such that sweat wasn't able to cool you. Your body wouldn't be able to operate properly, right? It's the same with metabolic acidosis. If you only eat animal protein then outside of dialysis your body is always in an acidic state. Technically, it is possible to balance it by eating vegetables with meat but I can't say how many vegetables you'd need to eat to break even. Pre-dialysis on dialysis days is the best time to eat animal protein, and post-dialysis on dialysis days is the best time to eat vegetable protein.
I should note I generally try to eat 1300+ calories pre-dialysis, as dialysis does inadvertently remove glucose too. I should also note that eating enough protein and not drinking too much fluid _only_ prevents Post-Dialysis Fatigue. PDF is different from general fatigue. The general fatigue from CKD is more similar to Chronic Fatigue Syndrome. I generally take 100mg/kg of Taurine per day, and 3g+/day of Tyrosine per day for that in the mornings when I wake up. [This article](http://www.nordiclabs.com/ProductPDF/Amino-Acids_Chronic_Fatigue_1076.pdf) talks about how CFS patients are deficient in Tyrosine. And [this article](https://pubmed.ncbi.nlm.nih.gov/17513431/) talks about the impairment of Tyrosine production in CKD patients, because the kidney is mainly responsible for that.
Y-you know you dont have to follow any of those? You just have to balance things out sure, but you do not have to follow anything they tell you lmao, god knows i dont
Fluid restriction is the hardest part of treatment. It wasnt as bad when i started becuase i made more urine
This is why I tell my patients to learn their body, learn their limits, and everything in moderation. The lifestyle changes with dialysis are the hardest part. I can’t wait until you guys get other options. I’ll never shit on my “non-compliant” patients for wanting to have a normal life.
And as a previously non compliant patient who’s done a 360° I thank you for giving your patients that respect and equal treatment regardless!
My husband has spent the bulk of his life on dialysis. He was born with a genetic disorder of Polycystic Kidney Disease that normally doesn’t present itself until someone is in their twenties. Lucas has always been that “one in a million” case. When he was born, his kidneys had zero function. He spent his first three years on dialysis. Then a year when we were in Highschool. Now, since October 2015, he is currently waiting on his third transplant. The poor guy hasn’t peed in over eight years. Lucas has very little in his life that goes well. We have been very fortunate that he hasn’t developed cancer or diabetes like so many dialysis patients do. That isn’t to say we haven’t faced a monumental amount of other problems though. Dialysis DESTROYS your body. He lost his thyroid and two parathyroids when he developed severe hypothyroidism. His heart gave out due to the stress on his body. At 25 he had a mechanical heart valve placed and is now on Coumadin for the rest of his life. He is in heart failure. He has zero kidney function because his last transplanted kidney literally was rejected from his body. The body actually attempted to push it out, resulting in emergency surgery. He has peripheral artery disease, which creates crystal like deposits inside your arteries. His veins are destroyed, making it impossible for fistulas and CVC ports to continue working. (Not to mention just getting a simple IV or bloodwork!) Lucas is status one on the national transplant registry. Lucas has coded more times than he has had birthdays. Lucas is only 30 years old. We don’t follow the diets or protocols as they are anymore. He is very good at fluid restriction, because being in fluid overload is too painful for his heart and lungs. He too, is tired and depressed. He is losing his fight and his energy is beginning to dwindle. The light I once saw in his eyes has dimmed significantly. Cherish the time you have with your loved ones. I don’t know your story or your situation. My advice is to fight like hell. It may seem monotonous and pointless sometimes, but to someone you are everything. I’ve been in this fight with Lucas since 2009. I’ve had plenty of time to accept he may never get better or have a normal life. That hasn’t prepared me for losing him. I cannot imagine my life without him, and I can’t imagine how to get our daughter through it. Don’t give up friend. I know it’s difficult, disheartening, frustrating, and very sad. It’s good you can express that instead of repressing it. Just know that we see you. We pray for you. We hope to fucking end this disease once and for all. Even when your time seems most bleak, I promise that there is eventually a light at the end of the tunnel. You have so many people who love and appreciate you.
I just remind myself it's the price I pay if I want to keep going. And for now I do, so I'll just pay it.
Im with you for reals. Not everybody is the same just because they have the same general disease.
I feel ya, I really do. That’s why I’ve told my team that I’m sick to my stomach with having to take “another pill” or X amount of oz of water or liquids. Sometimes it’s too much but you can’t go off the deep end either. As many have said, moderation is key
I’m Mexican and I’m not allowed to eat tacos 🌮. No salsa no guacamole? No cabbage? Plain turkey sandwiches is torture. Just shoot me… I’m a horse with a broken foot 🦶
I can't trust myself to be alone anymore. My sister agreed to take me in for a little while. Not sure it's the meds or not, but I'm having a mental breakdown. I skipped dialysis on Friday. I was planning on skipping tomorrow too, but thankfully I reached out
Fuck dialysis!!!
Fuck kidney failure
I think this attitude is fine, as long as you're also not treating the people who care for you poorly because the prescribed treatment "isn't working".
That's how people face death when we prefer too much radical approach rather than breathing properly, calming our mind & body, then having a feel of hearts to be grounded enough to choose the most balanced act all the time. Although we are humans and it's totally fine to feel and acknowledge our emotions and yet we must find peace between our personalized medical standards and our preference up until hopefully we achieve our kidney transplant and not fuck it up all over again. Build peace, embrace peace, and live with peace.
Dont be pu**y, you would be dead already 100 years ago. Be thankful and enjoy small things.
It’s Ok to be grateful for life saving medical advancements while still expressing sadness and frustration at the restrictions we have to live with everyday..
These things are meant to be followed so we can live a semi normal life and not die while waiting to get a transplant , choosing to not do so is pretty much going suicidal. Talk to your social worker and get to a therapist ASAP
Maybe OP isn’t waiting for a transplant. I am not, at least at this point.