I've been on dialysis for 30 years. I am pretty healthy other than kidney failure. I give praise to God first but I believe staying active have helped me.
@@boomerang6130 I gave away a kidney 18 years ago. The remaining kidney grows to replace up to 80% of pre-transplant kidney function within 6 months. So I technically have CKD (as measured by creatinine).
I started with dialysis at age 16 in 1983, got the first transplant in 1984 (hyperacute rejection and lost 90% of my hearing), dialysis again... 2nd transplant in 1986, it worked well for 15 years so I could graduate, study, start my profession as radiographer... in 2001 dialysis again until I got a kidney from my mom in 2004. It worked for 9 years and since 2013 I do dialysis again. I work fulltime as radiographer in nuclear medicine (PET/CT), travel as often as possible, have been with dialysis in Asia, Africa, Australia .. next March I'll visit Peru. Dialysis is not the end! Greets from Munich/Germany
I was a dialysis patient for three years, prior to receiving a donated kidney. I managed my kidney function by abstaining from foods which were more damaging to the blood, and kept my creatinine below 5.0 for a few years. When the function declined to the point when I couldn’t produce urine, and my creatinine was 9.0, I decided it was time to go on dialysis. I received a kidney three years later, and have been living with my gift, since 2001. I’m very thankful for this gift of life!
Been on since 2021. Grateful for dialysis, I'm able to hold a full time job, exercise, and even have a son on the way in July. All this thanks to dialysis . Thanks for sharing
I am 83 years old and have been on dialysis 4 years. I started on peritoneal dialysis 2 and half years ago. I am so positive about my life and opportunities peritoneal dialysis has given to me. I live by myself, cook, clean my house, mow my lawn, drive, go out, go out for walks. I can do most anything an active 80 plus year old can do. My suggestion it to forget all the naysayers and go out an enjoy this beautiful world!
I already fell in love with this women she was very informative such a sweet lady my daughter is in her 40s just went on dialysis 3mo ago went in today for angioplasty to make sure her heart was good and found blockage 99 percent needs open heart surgery wondering if she will still be able to get a donor if they fix her heart ...my heart is broken😢
Life on dialysis has definitely been worth living. Yes, it changed, but I have a high quality of life. I am also changing modalities to Solo HHD, and everything I’ve read and heard suggests my quality of life will improve even further with HHD.
Thank you DR. This is very informative. I donated one of my kidneys to my husband on 2/18/22. My husband was at 5% kidney function on the day of the surgery he decided not to do Dialysis. I feel blessed to have been able to donate to him, now I understand how important it is Kidney Health. I pray for all the kidney failure patients because as you said in some states it can be years before you get a kidney and some patients will die waiting. God bless you Doctor.
Dialysis is rough. The techs nurses and doctors have no clue what you go through. You become just there work. Become nobody. You dont get a vacation. You go sick or not. It blows. It really really sucks. And you feel like shit after. Dialysis centers and workers think they know but the have no clue. I hate it!! Hate hate hate it!!!
I’m sorry this is your experience. This is not the case at my clinic. Absolutely, 100% we don’t know what you are going through, but we try our best to be understanding and help empower our patients, educating them and allowing them to be in control of their own health decisions
My aunt choose to pass away in 2021 she had kidney failure, she had the transplant and that failed then before she passed away she caught covid beat covid after almost passing away and being in ICU from covid, She decided she just wanted to stop dialysis and Go. She was a Head Nurse, Super smart i miss her so much, She lived two weeks before she passed. Its hard seeing them Go But I can't imagine what there are going through I understand, I would be tired too. and My dad had a Transplant in 2015 his kidneys failed the day after Thanksgiving Because of cancer he has cancer too Its so hard seeing him go Through so much. Speaking of My aunt she pass almost the same way my grandmother did at the same age 72 except my grandmother was still on Dialysis she passed quietly in the hospital after being on dialysis for 5 years😭😭
My girlfriend died from ESRD and dialysis was pure torture, sick for days on end. I myself have CKD and when and if I have to do dialysis I will refuse and go on hospice the day they tell me dialysis is next.
Mhh if you are young and still have a lot to live for it could be a good option. Ive seen how well one of my relatives is doing 3 years into dialysis. Late 60s. That said though..ultimately you personally know whats best for you. The dialysis lifestyle mighy be taxing.. but there is no pain at all. Best and blessings in your decisionmaking🙏🏽
My son Was born with one kidney it was pelvic kidney not formed properly. We never knew he only had one u til it started failing him and 12 days later he passed from end stage renal failure at 44 yrs old last year. We were devastated . Please go to kidney dr even if u don’t have any issues. It could save your life
In 2018 I went on peritoneal dialysis my creatine level was 29.5 and blood pressure 200/100. After 4 years of dialysis I got a Transplant at tampa general in 2022 been doing great.
Recently diagnosed with Alport Syndrome with Thin Basement Membrane Disease. Stage 3b; not many informed nephrologist here in Alabama who are familiar with this disease. Thank you for showing 🙏🏾
You are totally wrong, I am at 8% Egfr and I am still alive, I am not on dialysis and I am working full-time as a visual art teacher and I believe I can still wait for a kidney transplant. It is totally wrong when you say we will live weeks to months because a lot of us are alive and kicking. Please do not assume that every person is the same. Only God knows what the future brings. Don't give false information to people.
I'm sorry for the difficulties experienced by fellow patients. However, ARE YOU CRAZY? I am so happy to be alive and able to get life prolonging treatment. I am 67. I only recently learned why i was so sick and for a few minutes at the ER, I thought i was dead. Like within days. I did not want to be dead. I have a son and grandson. I have friends, pets and many interests. I just retired. I want to LIVE and i am happy to sit in a recliner while a machine does the job my kidneys can't.
Thank you so very much for your videos. I have lupus and FSGS. I have been on the transplant list for almost four years now. I have so many questions. I love that I can trust your videos. You are a reliable source of information. I have been doing dialysis for a little over three years now. I have had some severe issues. I got tumoral calcinosis so bad that I would have to be in bed for a whole week at a time with severe pain and fever. Your videos are very important and I am so grateful please make some more.
Thank you so much, but I hate that you've been struggling so. Don't hesitate to send me a note with questions and I will do my best to work them into a future video!
Hang in there. I had fsgs as a child and was on dialysis as well for 4 years. I received my kidney transplant almost 20 years ago. You will get yours too I know it. Stay positive and keep the faith♥️
Yeah, I hear you. And…just 60 years ago, everybody with end-stage kidney disease just died because dialysis didn’t exist. I hope you can focus on what dialysis allows you to be here for.
My kidneys failed and I did not want to go on dialysis. I told my family that I would rather die. It was only because of my grandkids and the opportunity to see them grow up that I agreed. I was lucky that I was only on dialysis for 6 months before I had a kidney transplant. It was the worst 6 months of my life and I would not wish it on my worst enemy. When my transplanted kidney fails, I have had it for 10 years, I will not be going on dialysis. My specialist told me that dying of kidney failure is the gentlest way to die. You go to sleep and just don't wake up. That is what I will be doing. My affairs are in order and I have no fear of death.
@melinaesparza4006 I've seen God's work for myself. God created you, and he loves you. Please stop turning your back on him. This life is difficult enough. Don't suffer for eternity as well.
@@Nicolee7764 What if that does not work ,I had my transplanted kidney fail, and before it failed completely I did pray ,fast, call even elders to pray with me. Guess what my kidney still failed anyway.
@monicabubu5139 My heart goes out to you. I'm not saying that l have all the answers, only God does. I can only attest to what l have witnessed. Did you ask him what to do? You're alive, praise God. That means he can still heal you. You need to learn how to speak to him and be able to hear his voice directly. I will keep you in prayer. ❤️
My brother went to ER Wensday morning and I was told his kidneys where working 2 to 3 %, and his cre number was18, know nothing about kidney's at all, next morning I was told his blood count went down over night and his kidneys got worse. Started on dialyses Thrusday morning, it's been 3 treatments in 3 day's, his color has come back, he feels better already back to his crazy self....don't know whats next
I have kidney failure.. but I decided not to extend my life.. I dont have a wife or kids and no family so.. I am at peace to dying from my kidney failure..
@@shannon0676 Peace be with you. My Mother made the same decision and she died peacefully in her sleep. I had to respect her decision even though it broke my heart😔
My dad died a month ago due to kidney and heart failure. He was on dialysis for 4 years and ended up getting a brain stroke. Then he was admitted to the hospital and picked up swine flu. This ultimately killed him as it was too much for his weak heart
May your Dad rest in peace 🙏🏻 I just lost my mom this past week from kidney failure 😞 she also had congested heart failure 😞 May she rest in peace 🙏🏻 she was on dialysis for 3 yrs 💔
I had no idea your message would become so beautiful in the end! Thank you. I’m a 72 y/o liver transplant patient, so of course my kidneys are failing. So thanks also for helping me decide to avoid dialysis. I’ve had an awesome life!
My Dad his two kidneys fail n he is doing dylasis Every week. Now he is serious Only God knows he will survive or no, it's really hurt me seeing my dad Pls God heal him ❤ gv him another chance 😭😭
Lots of people say this. Almost all of them change their mind when they actually feel like they are gonna die soon. I try to help people understand that others’ horrible experiences will not necessarily be theirs.
@@realkidneytalk I need to goto dialysis in next 2-3 months. Please let me know how does it feel! Would I be able to do my software job? Doc said he will put me on Peritoneal Dialysis
Me and my siblings have seen our mother go through dialysis. Our perception of dialysis is very different. Some see dialysis chance to live, some only see suffering.
I suppose that there may be people who can have a tolerable life on dialysis, but there are people in horrible condition on dialysis. By horrible I mean blind, diabetic, high blood pressure, amputated limbs and basically being as helpless as a newborn baby boy, not being able to do anything at all for yourself. Being dependent on those around you for everything and putting a hell of a workload on them. Also incurring astronomical medical care costs. How much must be spent on someone who is on deaths doorstep? How long do we keep people alive on life support machines? When is enough, enough? Who wants to live their life like that? Wouldn't it be honorable for someone to say, let me go into the afterlife? I know a man in this condition, it's not a pretty site. Just end it !!!!
I agree if dialysis is only creating or prolonging a miserable existence it should be stopped (did a video on that). This video was referring to the majority who say no to dialysis without ever having tried it (and likely live better and longer with dialysis).
They just gave my grandma an option of dialysis or dying . the kidney Dr. suggested to not go through dialysis because its just a bandaid and she will be in the same bad state but longer 2wks he said. Sounded like crap for a doctor to say here in south florida.
Kidney doctor asked me if I didn't think I'd lived a long life. I interpreted this to mean he thought I'd lived long enough. I changed doctors. The new doctor isn't very good either, I can tell he is not interested in keeping an old person alive.
So from my understanding from what you're saying is that I can still die on dialysis if my kidneys are below 8 percent? I thought Dialysis keeps you alive longer as long you keep going with it even though your kidneys are gone.
Mine GFR is at 41,000 last week. I am on kerendia once a day. I feel really tired and I have other health issues. Lupus, Diabetic, High Blood Pressure and ITP. But my kidney doctor said to be a while for dialysis for me.
Thank you. My partner is 69 and end stage 4 kidney failure, just had a fistula put in. She is a frail lady and has already indicated dialysis might be too much for her. As a stroke patient, sometimes it is not always easy to know if she is fully aware of situations. I feel like I am losing her. But I will respect her decisions and I will be there for her no matter what. And we will just have to take things as they come. Your video elucidated feelings I have been having. And you are a lovely caring person. Thank you.
Last I heard (pre-covid), they were starting human trials in people already on dialysis. Maybe I'll do a video on this (and the pig transplantation they are working on) soon.
Thank you for this real talk. I'm 57 years old and my eGFR is 62 and falling. I was of the "I'd rather die than be on dialysis" mindset, but you've given me a lot to think about.
OMG, GFR is not the only criteria for CKD. Do you have micro or macro albumin or PROTEIN in URINE? If not, you don't have CKD. This DOC is scaring the shit out of people.
I was at 30percent and went to 25 percent but staying active and drinking lot of water and dnt smoke but I do smoke Marijuana and it some what help build it back up to 30percent, I didn't tell the docs that I smoke cannabis but some how went back up to 30and i don't have the protein in urine anymore neither but have anemia in the kidneys but i dnt know where it's at now but if i had to do dialysis to stay alive i would cause i have kids and im a young 43 year old still with alot ambition to my dreams of being a boxing coach and wants to be a pro trainer one day and so i carry my faith with God with me to allow that to happen, all this is the cause of takeing to much B.C. powder and Iprebuffin for my Arthritis in my ankles now my ankles getting better now left with this stupid kidney problem at a early age, i am no diabetic but has high blood pressure tho.
I am going through this right now with my father in law. He's saying he'd rather die than go on dialysis, and he's been sticking to it. He's in his 60s, just retired. We have a toddler and one on the way, and our kids are going to miss him if he doesn't accept treatment. He's at 14%, protein in urine, diabetes, the works. Hes been pretty darn good about his diet and lifestyle changes, but his function has steadily been failing the last few years.. There's just no way we'll find a transplant from the family, it's not going to happen. Wait list right now is 8-10 years. It's very frustrating trying to talk to him abour dialysis, and to teu understand what he's thinking. I know this hasn't been easy for him, but I don't understand where he's coming from. We go to these appts with the nephrologsist with my father in law, and I swear, it's like he's in an alternate universe. He hears the nephrologist say one thing, my wife and I hear something totally different. He's not honest with his nephrologist and tries to downplay his symptoms. So whatever, maybe he won't listen to the nephrologist whose been saving his life, so we thought, maybe he'll listen to family. We have extended family who are well educated in medicine and healthcare, friends who work in pharmaceuticals, my wife graduated from MIT. He won't listen to any of us, either. He acts like dialysis is a death sentence, painful palliative care. He keeps repeating something he read on a Google search, "if I go on dialysis, life expectancy is 5-10 years." Lately I feel like I'm done pleading, I'm done trying to convince and bargain. After today, I'm just getting mad. I'm starting to see how I'm powerless in this situation.... it's not my choice, whether he accepts treatment or not. It's 100% his call. If he would rather die than get on dialysis, it's his decision.
@@wolfumz my dad was on dialysis for last 2 years and eventually passed away. There is some truth in what your father in law is saying. When you get on dialysis there is no turning back and you become very hooked to the process. My dad struggled with peritoneal dialysis as it caused lots of pain in his stomach and he was constantly complaining how his stomach would hurt him. Eventually he passed away. I say eventually because my dad was a leader and it was hard watching him struggle daily not being able to live his life the way he wanted to. He was bed ridden most of the time and couldn’t leave the house since he was doing dialysis 4x a day.
My mother was on dialysis and I swore I’d never do that myself. Well, I have emphysema and surprise to me, I now have some kidney problems. Previously my GFR was 80. I suspect it’s lower now. Glad I found your channel. Gotta do some research.
Planned to respond in the video I just posted but it was getting too long! I'm glad you find my channel helpful. Please don't assume your mother's experience would be yours.
@@realkidneytalk thank you. I am curious about the connection between emphysema and chronic kidney failure if you choose to address it. I just don’t wanna sit in a chair six hours a time three days a week among other sick people. Home dialysis is kinder but still… God Bless.
I'm not aware of a direct connection. I would imagine people with lung diseases would be more sensitive to volume overload (which would only be an issue for people who can't pee out extra fluid) than those without lung disease. Wishing you the best.
I have CKD stage 4, high BP, high cholesterol, COPD, Diabetes type 2.. I don't want dialysis as i have seen my mom go through it. Everything i have my mom had. I changed my diet and really wondering how long life i have tho i know no one knows.. I'm ready to die and not scared as ill be united with my departed husband...
"I wouldn't wish dialysis on my ex-husband." = Coke through nose! :D My eGFR has fluctuated between 50 and 58 since my diagnosis at age 58 seven years ago, and my biggest fear is, of course, dialysis. Am trying to do whatever I can to protect my kidneys, but that fear never leaves. This is a great little talk you've given and to donate a kidney shows you're walkin' the walk, young lady. Color me "SUBSCRIBED", baby!
I would kill to have an eGFR of 50. You can be just fine if you take care of yourself and listen to the kidney specialists. My eGFR was below 30 for over 20 years until my kidneys finally gave out. With any luck you will die of old age before your kidneys fail. biggest things I was told to do for my kidney health are. Quit smoking. (anything that can cause blood flow issues are bad for kidneys), 2 drink plenty of water (yes you can have soda and coffee, but make sure you have water as well) and loose excess weight. Basically eat a heart healthy diet and get some exercise to keep the blood flowing properly
I've never had a weight issue, but I'm deep into all the other stuff. Thanks for your uplifting message, and best of health to you. @@jeraldbottcher1588
My husband has kidney disease, and i found a you tube channel that is very helpful!! Do yourself a favor and check out "DADVICE .TV" (copy and paste that in the search bar, but take out the space between the E and the . before hitting enter). You will get the link, James is the person in this video whose GFR went from a 13 stage 5, to now 22 stage 3 and holding steady since 2018. He did not go on dialysis, he has learned diet is the key, and drastically changed his diet. He has MANY great videos on kidney health, diet tips, do's and do nots, he has guest nephrologists, and renal dieticians who do live question and answer videos, just sign up on his you tube channel, and a whole lot more. You can still improve your kidneys by not eating out at restaurants, stay away from processed foods and foods high in salt, read all of the ingredients on the labels, and make sure you are drinking at least 4 bottles of water every day to keep your kidneys flushed, and even drink lemon water to help cleanse your kidneys! Also check out "Dr. John Bergman - kidneys", on you tube and the same with Dr. Allen Mandell - Kidneys" also great channels. I also like to watch "BESTIE HEALTH - KIDNEYS" to learn how fruits, vegetables etc. help in healing your kidneys... just though I would share... hope that helps you and others! Have a good day!
Hello Dr Vanessa… I would rather have had someone like you (cursing or not) who’s willing to “tell it like it is” and in layman’s words rather than doctors who said “you have chronic kidney disease, but you are doing good, don’t worry”. I knew zip about CKD, so I didn’t worry until the pain in my left side became significant enough to get my undivided attention (about 10 years later!)… I seriously wish I could talk to young 40 or 50-something age people who gets this news but don’t feel sick or have any pain. This world needs more doctors (of all types) like you!! Thank you!
I have had kidney disease for over 20 years, we were able to keep it at bay for a long time, but eventually my kidney functions dropped so low that I was feeling pretty bad (egfr under 12) I was deemed a good candidate for peritoneal dialysis (age 64 at the time) and am currently on dialysis (PD) Yes it is a little bit of a pain in the keister. I do fluid exchanges 4 times a day. However Peritoneal Dialysis (PD) gives me a lot of flexibility and I can still take part in most if not all of my previous daily activities. PD does not leave you feeling "washed out" like HemoDialysis can. Yes I am on the transplant list, but the waiting list can be years. On the positive side of things. my dialysis has been pretty drama free, no complications, and my adequacy is doing very well. I am feeling SO much better (I feel like I am back to 90% of normal, and considering I am looking at what normal was when I was in my forty's and am now 65 I think I am doing REAL GOOD) Dialysis is NOT a bad thing to go through. Too me I look at it as if this is a game, and the rules just got changed. Still have to play the game to win. I am grateful that they have PD as an option. It leaves me the ability to live my best life
@@nevillesellars6532 I'm sorry honey. My brother did die because he said the dialysis was just to much. I also have kidney disease. Right now mine is at stage 2. I will be praying for you.
❓Question❓ If they told me they won't do a kidney transplant as I have some other health issues. Why did they put me on Dialysis? For reference 80 years old - 4% function left - 9 hours a day in home dialysis using typically the 1 yellow 2 green and 1 purple solution each day thru that machine. Realistically how much time is it buying me?? I can't understand most of what the Dr's talk about during my appointments and continually need help to get this machine working. Really beginning to wonder if it's worth it. Any information would be helpful.
I’m 70 years old and I have polycystic kidney disease. It’s genetic, my mom had it, my sister had it and my son has it. My kidneys have big cysts growing in them and there’s nothing doctors can do for it. My GFR is at 14 and the nephrologist I see is telling me I need dialysis now and it scares me to death!’Nobody here is mentioning weight! I was normally at 104 but I’ve dropped to 87 and I can’t gain it back because most foods I like, I can’t eat! Plus I don’t have much appetite anymore. I have finally agreed to going and getting vein mapping to see where to put a fistula to start dialysis and it’s a long process. I just hope my kidneys don’t fail while I’m waiting to do the fistula and then it has to heal which takes time. When it comes down to it, I don’t want to die yet and I have a lot of other very serious health issues, like an abdominal aneurysm and losing so much weight! I’m so tired of doctor’s appointments not to mention the cost! I only have Medicare and a Medicare Advantage Plan so it leaves me owing a lot of money which I don’t have!! I have a severe case of scoliosis and it’s making everything worse and it’s painful. It’s like everything hit me at once and at my age there’s not much they can do for scoliosis other than physical therapy and that’s when my kidney function went down, when I got scoliosis. I trust in God and I am asking Him to heal me and I have people praying for me or it could be a lot worse! I am scared, but who wouldn’t be with all these bad health issues? At this point mg nephrologist is more worried about my weight than what I eat! He told me I can eat anything but I won’t eat the things that’s bad for my kidneys! I don’t have family or the money for a transplant either so I’m looking at how long I can live on dialysis with everything else that’s wrong with me!
What are the symtoms besides the GFR, mine is 13. I am dieting and walking, exercises. is dialysis better ón the arm or the stomach and do dialysis at home?
When you say 60 or 20, what test is that? My brother is in stage 5 kidney failure, but which lab should I be looking at for this number? Thank you for the videos.
I did parotoneal for 6 months before getting a transplant that lasted 13 1/2 years. Now doing hemo and I hate it. I will be going to evaluated for another transplant soon. If I'm not able to get one, to Hospice I will go.
Рік тому+3
I was transplanted at 17 due to my renal dysplasia. I was saved by the bell, by not using dialysis before. I worry about one day I will. Or that maybe since I wasn’t born with kidney disease, they could heal. Idk. Cuz all of a sudden they prescribed me calcitriol and I recall it was for my old kidneys. Like my Transplant is doing all the work.
Well today was suppose to be my moms first day, but she refused to go. But later on I took her because the doctors wanted to talk to her, she has a kidney lost one becauae of cancer. But this one isnt doing well. Diabetes and other problems as well. Shes 60. Not going to lie, when I first walked into the area where the procedure happens it was heart breaking to see all these people on their beds. (The fisrt thought in my head was that it looked like they were farming people, yeah a bit crazy because of movies, SO SORRY FOR THINKING THIS!!!!) But the doctors wanted my mom to see around, talk to some of the patients. Some were sleeping which they made it seem bad, but I guess they were just tired, others were normal watching tv, on the phone, eating their snack which started to ease me a bit. But my mom starts on Monday if all goes well!!!!! If it hit me cant imagine how much it hit her. Love you all and stay strong!!!!!❤️❤️❤️❤️
Don’t be sorry! Feel all the feelings-and then find out if they are warranted. I’ve seen so many walk into the dialysis unit and only see the absolute worst, rather than someone similar to them! Even then, one person’s experience is not necessarily another person’s. And most imagine it’s worse than it actually is. I’m glad your mom is gonna give it a try based on what you’ve shared. And if hemodialysis is miserable after 12 treatments, then I hope she’ll try peritoneal dialysis if that’s an option. At that point if the downsides still outweigh the upsides, then one can make a decision based on LIVED EXPERIENCE instead of fear. Wishing you both all the best!
It's been great for my mom!!!! Now she takes a blanket, her phone, ear phones, neck pillow haha all comfortable. She's made friends so now that she's been doing it for a year it's part of her normal life now! So the dialysis has been solmooth sailing. The bad thing has been that her catheter has clogged twice which is not good, we've had to take her to the ER. She's recovered from both but now her veins won't expand so they can't find a strong enough vein to replace the other two catheters, so she has a temporary one in her neck, previous ones were in her arms. So now we just have to wait for where the new one will be placed.@@Bloodsport1
Im currently at stage 4 and contently suffer from gout the pain is terrible im told its common amongst kidney patients. Its there anything i can do to stop it
This is a tough issue and I see it as a communication and information issue. I choose to treat and continue treating for many reasons, but I have a loved one who chose not to and they passed away. That situation hurt but I respected their choice. A potential patient needs information and different perspectives of what a life with ESRD is and can be. Also being well informed can improve your outcome and quality of life. So if you are making a decision on whether to treat or not, or have a loved one who is please talk to some patients first. Search for a support group (try to stay away from the ones sponsored or run by corporations) and get some different views on the subject. Feel free to comment here I am glad to respond.
Agree. In my experience, many say no because they are afraid or only considering horror stories. I've only had 1 patient under 80 who legitimately understood reality & chose hospice over dialysis. I supported their decision.
I have been the lucky one here. I have been living on 1 kidney for 55 years. I been around may dialysis patients because I use to work in a dietary department in a care center. I dealt with the renal diet a lot... that got me thinking about what I would do if my 1 kidney gave out. I had a scare about a month ago...the blood pressure meds went thou the kidney and was affecting it in a small way. They changed my meds and all is well. That being said it got me researching kidney dialysis to see what it really entail ...so I could decide ahead of time if needed. I am thankful for sight like this.
Good Morning Praise God . I have brother who is on dialysis he had a stroke about 6 month ago and during that time they the doctor had put him on dialysis .My brother doesnt want to do it because he say because he can still pee he dont need to go. he has missed his last appointment it has been 4 days now no dialysis what is going to happen to my brother. and who can i get his kidney damage number from because he want proof
My situation is messed up. (Not that others aren’t)… Got osteosarcoma at 15 in 1987. A year of chemotherapy damaged kidneys. Ten years later the leg I had the cancer was amputated due to an infection in the area the tumour had been. Hypertension for years. Both kidneys removed (a mistake). Thought it was cancer. Wasn’t. That was 2015. 8 years in dialysis. Feel great. Work out. My one track minded nephrologist wants me transplanted, but I am scarred I will feel worse than now. I wish I could speak or get advice from another doctor than the only one I speak with at the tiny dialysis place I go to. I had a machine at home for 6 months two years ago. I live a life alone. Eventually my first fistula collapsed and got infected. Had to be blocked. Got a new one on the other arm. Perhaps the last one they can make, so I take care of it. Works very well and I am back at the hospital three times a week, which I prefer, despite being Sick of the nurses faces and all their intrusion on me and my personal life while they tell me little about themselves. A successful transplant would definitely be a better solution, but I am afraid of it going bad and not being better than dialysis for me. I don’t need to remove fluid during Dialysis cause I have an infra sauna that I sit in three times a week. Sweat enough. They didn’t believe it would be adaquit, but it is. So. What do I do????? Continue dialysis for life or attempt a transplant if they offer me one from a dead person?
Sorry you've been through so much. Sounds like your biggest fear is that the transplanted kidney won't work, but 94 of 100 deceased donor transplants are working after 1 year. And for the unfortunate 6, dialysis is still there...
You been through it. I’ve been transplanted for 6 years now, no dialysis but I’m low key scared of my blood going into a machine. There is so much anxiety about it. But I know I’ll manage.
3 years ago My 81 year old Uncle suffered a UT blockage that went untreated and caused him to end up with 5-10% function. The Renal Specialist wanted him to try dialysis but he refused. He's still "kickin" but his QOL is poor but painless. Since it's gone on so long I have to assume that there are those people with metabolisms that are more resilient...?? Perhaps his Marlborros are keeping him going!
Maybe so . There are many different situations and some people just can not handle dialysis and all that comes with it and it is very understandable . Through the years I heard some say they just couldn't handle dialysis they were speaking for older family members who died with bad kidneys and died from it .
Thank you for your help. I am approaching seventy years of life; have heart disease, type II diabetes, and I am in the nausea, skin irritation stage. I will not do dialysis, the quality of life for me will not be sustainable, plus the burden on my brother and sister and their children. These videos plus ERD by hospice care givers has been very helpful, thank you again.
Does “optimistic” mean you hope I’ll tell you going back to normal kidney function in all circumstances is possible? If so, this channel isn’t for you. I’m doing this to give people real information, so they can better face their reality.
@@laurabeissel9345 She's a debbie downer. People know they have a serious condition, they don't need to be told everyday that they won't get better. Feeling better and optimistic is mental and physical. Feeling optimistic can help prolong your life. She need to stop.
Hey @tisha954 - Please remember, you don't have to watch my videos every day, or at all! But your comments made my latest video! Check it out (or not): ua-cam.com/video/ndiURUj0UPY/v-deo.html
My mothere egrf is 4 and creatinine is 10mg/dl...blood is 6g...she refused to take dailysis. Also suffering from HIV and diabetic..she is in pain..she can't sleep due to shortness of breath whole night..how much life she has?😢😢 What medicine we can give so that she can sleep
My Father is 81 and at 12% kidney function. He will start dialysis mid April. Why isn't the dr.being more urgent about starting dialysis sooner? He has no symptoms but will He be able to last until mid april?
The national average is to start at 10, but in my experience, people don't have clinical reasons to start until between 5-8 depending on person's size, diet, symptoms. Studies have shown starting earlier doesn't make a difference in how long someone lives.
I started dialysis at 5 percent. I pushed it a bit , I did have a graph put in my arm ahead of time, had to do a cat scan on my my adrenal glands, they saw water around my heart and I was in dialysis 2 days later.
As a transplant patient that has a transplanted kidney that’s at end of life. I have chosen to go back on dialysis eventually, and lessen my risk of continuously have cancer from all of the immunosuppressants
I started my Dialysis back in January but have been going through kidney failure since 2023 and yeah there are times when im like screw it and just wanna quite but then we can't selfish we gotta use that strong willpower thats gotten us this far in life
I forgot to mention that I have had a transplant but it was such a bad experience that I refuse to get another Transplant is not for everyone and its not a cure all. It is another treatment for kidney failure. Some people do great with transplant. We have to find the best treatment for ourselves
Completely agree. People look to transplant as some kind of miracle cure, but it is simply a treatment for kidney failure that comes with its own set of problems. For the vast majority transplant does afford a longer & better life than dialysis. I'm sorry you were one of the minority for whom the bad outweighed the good.
@@realkidneytalk thats just a part of life. Not everything is for everyone but I'm not complaining. I do very well on dialysis. I say give transplant a try. You never know. It could be the best treatment for you. I know a lot of people doing great with the transplant.
my mother in law is in stage 5 kidney disease...she was in hospital very poorly 5 weeks ago but is now home and feels well, she looks well too...but the reality is she is not having dialysis nor a transplant on her nephrologist's advice as she is too fragile for either one. Her diabetes has also returned having had it in remission for 2 years or more...the amount of meds she has in her home is phenomenal!, her lounge is like a clinic!...she tends to her own Stoma bag, she also has a catheter and yet in herself she appears fine...I am just seeing what I want to see?...I need someone to be straight, how long does she have in your experience?
I'm not a Dr- but I an an RN and a hemodialysis patient. In stage 5 ESRD she could last for months depending on additional lab values. Stage 5 is a GFR of less than 15- they usually start dialysis either when the GFR drops to around 10 or when they become symptomatic or the potassium gets too high. I didn't start dialysis until my GFR was at 10 and even then I was was ok bc I controlled my symptoms with diet. But at some point that doesn't work and you become symptomatic and you may not even feel different until you start dialysis, then you feel the difference. Hope that helped :-)
@@bethaltieri986 Thank you SO much for answering this!...she did have Hyperkalemia when she was admitted to hospital and now has a low potassium diet, as well as a diabetic diet...but, she's self-neglectful and her friends come round and give her stuff she shouldn't have!, it was chocolate on the night she was actually released from hospital!!..old people!! jeeez!...if I didn't laugh at that sometimes I would cry!...so I will say she has months, or less depending on her friends!!
In my experience, rarely does a person clinically need dialysis at GFR 10-- that's just the average nationally. I want to believe nephrologists are doing what they think is best...but dialysis is a lucrative business too.
@@realkidneytalk They have told her she is not a candidate, ever! 😪..too fragile with so many other health issues, so even when she is at 10 they won't do anything for her. x
@@plushypuppy2024 I’m sorry, I know this is very sad and scary. In truth, dialysis can make life worse for the very old and frail AND doesn’t promise a longer life. In my experience, a person has about 2-3 weeks when the medicines can’t reduce the swelling anymore. I would encourage you to get palliative care involved to help make the time she has as good as it can be.
Dr Vanessa ..ive been on this T2D/Hypertension/Ckd/ERSD Rollercoaster for over 25 years and had 3 of the 4 methods of dialysis since spring 2022.Ive been on the transplant list @ Northwestern Memorial for over 3 years now.I have hope regardless of the pros and cons of this journey..Because of my interaction with my family, freinds , specialists and my own will( despite slight vascular issues) im @ eGFR 19% and A1C of 6.0..Thanks for the insight
I'm 64 years-old. My creatinine is a 5.9 and egfr at 6. I have a daily BP readings of around 175/90 or higher Before saying yes to dialysis, somehow I didn't want to do it. Now reading these comments make me think i don't want to be on dialysis. Something tells me that it would be worst for me since my heart is very weak after having open heart surgery 4 years ago. Does anyone here experience any pain on the sides of your abdomen and in the middle of your abdomen?
Dialysis is an alternative. Sure, kidney transplant is the best treatment for kidney failure for those healthy enough to survive the major surgery, but not readily available to most people.
I have an 88yo friend who is currently hospitalized with ESRD that has just been started on dialysis. He also has CHF, the beginnings of dementia and has had no desire to eat or drink for several weeks. Since he's been in hospital, he's developed a GI bleed which is adding to his already severe anemia. They can't do endoscopy because he's too frail for much anesthesia and barely survived having the chest catheter placed. Instead, they're giving him 1- 2 units of whole blood every day. I'm so, so angry for him and his family because the doctors aren't giving them the whole truth. They're letting them all think that he's going to go home and be toodling around his little garden by spring. All they've said is that 'dialysis will keep him alive, and the most common side effects are nausea and cramping' and that he 'needs' the repeated transfusions, at least 2 surgeries, etc. I'm so frustrated and so helpless to do anything for him.
@annA-fl8um because he's never been able to enjoy his garden. They did dialysis on him for several months, in spite of him telling everyone how bad it made him feel. They did three gastric procedures on him, in spite of him not wanting them. They kept him alive. He's still alive 9 months later. He's bedbound, with pressure sores and legs and feet so swollen that he keeps telling us that his shoes are too tight when he's not wearing socks, much less shoes. He's cold all the time, hates being bedbound and incontinent, and the same people that insisted on dialysis are now the same people who are complaining about how much work he is to take care of. Complaining out loud, to him. About what they did to him. I would love nothing more than to take him outside to see his flowers, but that's never going to be able to happen again no matter how bad anyone wants it. They didn't prolong his life, they've only prolonged his death, and he resents them for it almost as much as they resent all the care he needs.
Thank you for all the encouraging comment , i find out this day that my brother have stage 5 kidney failure and right now I'm still thinking if his doing dialysis or not, it really breaks my heart
I've been on dialysis for the past month and a half. I'm already burned out on it and don't really see what I have left to offer the world. I'm not feeling better. I have no support and everything is falling apart. I've lived a good life I'm in my 40s which I guess I'm young but I'm ready to go.
I am a current hematology dialysis patient here in Australia. I am required to receive treatment 3 days a week with each session being 5 hours each time. I am currently coming up to my 4th year which began intially as a peritoneal patient but due to an infection, was given a fistula so that I could receive hematology instead. A quick Google will tell you the different types of dialysis you can receive and for what reasons. I am now 57 about to turn 58. I would say most days I am fine but there are definately days where I am "down". The good thing is the down days are few and far between and are typically after coming off dialysis. This feeling generally only lasts for a couple of hours if that and combated through either sleep, food and drink or all three. I tend to find that the feeling of being "down"is a kin to feeling a little dizzy combined with chronic fatigue. Not a very nice feeling but manageable. This feeling is usually bought on during dialysis whereby too much fluid is taken off you. If this happens your blood pressure will usually drop below 100. At this point your dialysis nurse will stop taking fluid off you and may put some back in you or just give you something to drink. It doesn't take long for this to quickly reverse the dizziness. Staff will not release you if you are feeling unwell but I have not met anyone who has had to stay longer than half an hour pass their treatment time. Where I do dialysis, the nurses are the best, they are fantastic. I cannot speak highly enough of them. I know of patients who have gone on to receive transplants and who are now living a relatively normal life and also some whose transplants have failed and are now back on dialysis. I also have one of those failures who had a not so good experience with his and said that if he had known what he knew now, he would never of gotten the transplant in the first place. He had complications and after doing further research on the life expectancy of remaining on dialysis, he would rather do just that. My personal opinion on dialysis is that I find if I do the right things, eat the right food, exercise and take my medications then my down days are pretty much non existent. I feel fine, bordering on fantastic most days if I'm being totally honest. I'm not saying I eat healthy 100% of the time and neither do I do any strenuous exercise either. A mild 20-30 minute walk pretty much everyday, minimum. I have a goal of putting in 10,000 steps everyday but if I make it, I make it. I certainly don't obsess over it. I have though just started stretching everyday coupled with some push-ups. I find this has helped me exponentially as prior to this I was feeling "old" and stiff but now find I have a lot better overall movement and functionality. Because one thing that I had noticed with the number of patients that i attend dialysis with is that they all tend to walk with a "stoop" similar to that of a very old person. It seems to gradually ingrain this characteristic into patients as time goes on. For me, I feel this has kept that at bay because of these extra steps that I have taken. That's just my personal view. So I just want to touch on the point of taking off too much fluids, something I mentioned earlier. So when you have chronic kidney failure(CKF) or end stage kidney failure (ESKF), one of the things that you will soon come to realise is that you can no longer produce urine (among other things). As such your body will now hold any fluids that you now consume in any shape or form. Be it water, milk, soup, yoghurt, ice-cream, ice block, basically anything and everything that has liquid in it. So what will happen in your very early stages of becoming a dialysis patient, doctors and nurses will try and determine what they call your dry weight. This is essentially your body weight without you not drinking any fluid, hence the term dry weight. They will then put you on a fluid restriction limiting the amount of fluids you are allowed to consume. You now have to account for all of this being mindful of the examples of those that I mentioned earlier. Your restriction will typically be between 500 mills to a litre a day. Given that you are in dialysis every 2nd day, you could potentially add anywhere between 1.5kgs to 4kgs and more if your not careful. Every litre is equivalent to a kg. During dialysis is when they get to remove this. Your body has a tolerance level that is different from everybody else's. A small fragile lady might only be able to handle 2 litres maximum before she starts to feel dizzy. I know for myself, my max is 4 but have been known to go as high as 5. That was the early days. I also know that as soon as I start feeling the telltale signs of feeling yuck, I let my nurses know immediately and they will stop taking anymore fluid off me. They will also monitor my blood pressure to make sure it doesn't go below 100, another sign that you won't be feeling well. They will try and get you to as close to your dry weight as possible without compromising your well-being. Sometimes that dry weight may have to be adjusted and that maybe due to a number of different reasons, weight gain through overeating. Sickness, loss of weight etc. So exercise, a good consistent diet and a stable fluid restriction is key to a successful dialysis. I know a lot of patients struggle with this, but if you can get some control of these areas, you will go along to managing your dialysis. The only other thing that I will say is that for me, 5 hours is a long time for me to be sitting still. I've always lived a very hectic life, so to now just to have all this time on my hands literally kills me. Most patients tend to sleep. So if you want to take up extra study or catch-up on TV programs, this is the ideal situation to do so. Hope this helps.
16 years ago, my wife gave me her left kidney. We matched perfectly! 7 for 7 markers. That was my 2nd transplant. My first kidney transplant lasted 15 years. I am now facing dialysis again bcuz the Tacrolimus medication has been helping and choking the life out of my kidney at the same time. My kidney is full of keloids and my gfr is under 19. I’m choosing peritoneal dialysis bcuz I want control over this part of my life…this time. “Rather be dead than be on dialysis?” Yepp, been there done that with that thought. Yet, by God’s Grace, this new chapter will extend my life and restore my strength & hope for what’s to come.
I been living on one kidney for 55 years now. I had kinda a scare couples week ago and it ended up being my blood pressure meds. I worked ina dietary department for years. Deal with renal diet a lot. Thank God I haven't have to make this yet so I getting inform now. I am 65 years old and I thank you very much for your vedio .
I'm only aware of stem cell transplant allowing someone not to have to take immunosuppressants after kidney transplant, not for growing new kidneys. A video about "new therapies" is on my to-do list.
I have a question Doctor, my aunt was in the hospital for several months due to a fracture, then was sent to nursing home to recover, but her foot got infected and she ended up getting her foot amputated. Then while getting therapy, she broke her hip and went back to the hospital, 3 weeks in she was told she needed to have dialysis she was retaining too much fluids. She did receive 4 treatments and she refused to have further dialysis. She left the hospital against doctors advice and now her legs are swollen again and noticied her face was puffy. To top it off she had a fever, no cough, body aches. She was told she didn’t have much time to live I just need to know if it’s advisable to seek Hospice care and or what point do we do this for her. She wanted to leave the hospital and go home but there was no one to take care of her so she begged my mother who recently suffered a CHF, now she has a fever and I am concerned for them both. Would you say days, weeks, months? I also felt her left side where her kidney is felt like a rock, very hard she didn’t feel any discomfort either. We are trying to figure out the best thing to do for her but we don’t know how much time she has left 😢 and she’s refusing dialysis she’s refusing to go to a nursing home. 😊
Very good to have found you !!! My son was put on dialysis too early by his first nephrologist that didn't have command of the English language !!! He's been on dialysis 14 years this May , but does not have the disease, polysystic or whatever his was from shock trauma due to an accident !!! His egfr at last notice was 10 could he get his kidneys shocked to work again ,??? Just recently he found he has an enlarged prostate is going to a urologist that is really not trying to help him please let Mr know if he can get his kidneys shocked he's at range all the time in his labs
My mother went on HD in 2019 and very recently passed away. Her kidney function level hovered between 13 and 20%. She had other comorbidities though and this year she started to not be able to tolerate HD because her blood pressure would drop. When her blood pressure would drop too far, the accumulated fluid could not be siphoned off by the machine. Even giving her blood pressure raising medication did not work after a while. When doctors told my father that he had to go on dialysis, he went to several HD appointments before deciding it was not for him. It took about three weeks for him to pass away.
Thank you for this information. I’m going through this right now with my mother who is 88. Her GFR is 25 , fun, and creatine levels are high. All her Drs. Tell me is to just make her comfortable. She’s not sick or anything like that or she doesn’t seem to be but I can definitely tell it’s taking a toll on her. Is there anything that I should be doing for her or that I should be watching out for ?I can’t seem to be getting answers from her doctors they suggested palliative care. She also has a pacemaker and her blood sugar levels are high diabetes..
I've been on dialysis for 30 years. I am pretty healthy other than kidney failure. I give praise to God first but I believe staying active have helped me.
Good for you! :)
I am happy for you. If you don't mind me asking, what was the cause of your kidney failure?
@@boomerang6130 I gave away a kidney 18 years ago. The remaining kidney grows to replace up to 80% of pre-transplant kidney function within 6 months. So I technically have CKD (as measured by creatinine).
God bless po
I know that's right
I started with dialysis at age 16 in 1983, got the first transplant in 1984 (hyperacute rejection and lost 90% of my hearing), dialysis again... 2nd transplant in 1986, it worked well for 15 years so I could graduate, study, start my profession as radiographer... in 2001 dialysis again until I got a kidney from my mom in 2004. It worked for 9 years and since 2013 I do dialysis again. I work fulltime as radiographer in nuclear medicine (PET/CT), travel as often as possible, have been with dialysis in Asia, Africa, Australia .. next March I'll visit Peru. Dialysis is not the end! Greets from Munich/Germany
@THyperon to God b all the glory for your precious life. I pray He continues to strengthen you and please continue to share your testimony.
Thankyou for sharing
Ya if you had money and is in a developed country
@@THyperon thank you for sharing. Sounds like you have a fabulous life! Is dialysis really as tortuous as a lot of people say?
I was a dialysis patient for three years, prior to receiving a donated kidney. I managed my kidney function by abstaining from foods which were more damaging to the blood, and kept my creatinine below 5.0 for a few years. When the function declined to the point when I couldn’t produce urine, and my creatinine was 9.0, I decided it was time to go on dialysis. I received a kidney three years later, and have been living with my gift, since 2001. I’m very thankful for this gift of life!
Been on since 2021. Grateful for dialysis, I'm able to hold a full time job, exercise, and even have a son on the way in July. All this thanks to dialysis . Thanks for sharing
I am 83 years old and have been on dialysis 4 years. I started on peritoneal dialysis 2 and half years ago. I am so positive about my life and opportunities peritoneal dialysis has given to me. I live by myself, cook, clean my house, mow my lawn, drive, go out, go out for walks. I can do most anything an active 80 plus year old can do. My suggestion it to forget all the naysayers and go out an enjoy this beautiful world!
amen❤
Bob, thank you! These are very encouraging words.
I already fell in love with this women she was very informative such a sweet lady my daughter is in her 40s just went on dialysis 3mo ago went in today for angioplasty to make sure her heart was good and found blockage 99 percent needs open heart surgery wondering if she will still be able to get a donor if they fix her heart ...my heart is broken😢
Sir you sound like myself, I love life and on dialysis been on it for 3years I'm 60 have to have a positive attitude
That's amazing coz I thought wen I start dialysis am literally physically disabled..thanks for that information you gave me some hope..
I donated a kidney to my father. I’ve never had any issues living with just one kidney
how old were you and how old are you now?
Very nice and brave how is your father doing
I have been on dialysis for 18 months , it's not too bad and the nurses are great !
Life on dialysis has definitely been worth living. Yes, it changed, but I have a high quality of life. I am also changing modalities to Solo HHD, and everything I’ve read and heard suggests my quality of life will improve even further with HHD.
That’s what I’ve been trying to tell folks! 😉 Thank you for sharing from your lived experience.
Thank you DR. This is very informative. I donated one of my kidneys to my husband on 2/18/22. My husband was at 5% kidney function on the day of the surgery he decided not to do Dialysis. I feel blessed to have been able to donate to him, now I understand how important it is Kidney Health. I pray for all the kidney failure patients because as you said in some states it can be years before you get a kidney and some patients will die waiting. God bless you Doctor.
Dialysis is rough. The techs nurses and doctors have no clue what you go through. You become just there work. Become nobody. You dont get a vacation. You go sick or not. It blows. It really really sucks. And you feel like shit after. Dialysis centers and workers think they know but the have no clue. I hate it!! Hate hate hate it!!!
@@phillywhateverguy 😢
@@phillywhateverguy I guess you're on dialysis too- it really does suck!
@@phillywhateverguy bruh cuz they are privileged not to see it yet. Karma may come
I’m sorry this is your experience. This is not the case at my clinic. Absolutely, 100% we don’t know what you are going through, but we try our best to be understanding and help empower our patients, educating them and allowing them to be in control of their own health decisions
My aunt choose to pass away in 2021 she had kidney failure, she had the transplant and that failed then before she passed away she caught covid beat covid after almost passing away and being in ICU from covid, She decided she just wanted to stop dialysis and Go. She was a Head Nurse, Super smart i miss her so much, She lived two weeks before she passed. Its hard seeing them Go But I can't imagine what there are going through I understand, I would be tired too. and My dad had a Transplant in 2015 his kidneys failed the day after Thanksgiving Because of cancer he has cancer too Its so hard seeing him go Through so much. Speaking of My aunt she pass almost the same way my grandmother did at the same age 72 except my grandmother was still on Dialysis she passed quietly in the hospital after being on dialysis for 5 years😭😭
That’s a lot. My deepest condolences for all your loss.
😭
My girlfriend died from ESRD and dialysis was pure torture, sick for days on end. I myself have CKD and when and if I have to do dialysis I will refuse and go on hospice the day they tell me dialysis is next.
My kidneys will be failing soon(Polycystic Kidney Disease) and I am refusing dialysis.
Agree with you, i prefer to die than living with horrible life
Mhh if you are young and still have a lot to live for it could be a good option. Ive seen how well one of my relatives is doing 3 years into dialysis. Late 60s. That said though..ultimately you personally know whats best for you. The dialysis lifestyle mighy be taxing.. but there is no pain at all. Best and blessings in your decisionmaking🙏🏽
My son Was born with one kidney it was pelvic kidney not formed properly. We never knew he only had one u til it started failing him and 12 days later he passed from end stage renal failure at 44 yrs old last year. We were devastated . Please go to kidney dr even if u don’t have any issues. It could save your life
@@gatorgurl1598 so sorry for your loss. Losing a child at any age is devastating. Prayers for your healing.❤️🩹💖
@@margaretcastellano3167 Thank you! It’s a tough journey but God is with me
@@gatorgurl1598 only by his Grace do we get through these devastating times in our lives. 🙏🏻
I'm very sorry for your loss.. Were there symptoms of any kind?
@@maryjuanarasta9220 one that he ever told me about
I'd rather die than have a nephrostomy! Let alone dialysis. Each to their own. ❤
In 2018 I went on peritoneal dialysis my creatine level was 29.5 and blood pressure 200/100. After 4 years of dialysis I got a Transplant at tampa general in 2022 been doing great.
What's your creatine now?
Recently diagnosed with Alport Syndrome with Thin Basement Membrane Disease. Stage 3b; not many informed nephrologist here in Alabama who are familiar with this disease. Thank you for showing 🙏🏾
Why so few views on such an important problem? She doing fantastic job explaining , it's much needed,
You are totally wrong, I am at 8% Egfr and I am still alive, I am not on dialysis and I am working full-time as a visual art teacher and I believe I can still wait for a kidney transplant. It is totally wrong when you say we will live weeks to months because a lot of us are alive and kicking. Please do not assume that every person is the same. Only God knows what the future brings. Don't give false information to people.
Amen 🙏
When i went on dialysis, i had 5 percent in my kidney. i was 49 years old, still pressing on life, and it's been going 16 years now. I'm on
I'm sorry for the difficulties experienced by fellow patients. However, ARE YOU CRAZY? I am so happy to be alive and able to get life prolonging treatment. I am 67. I only recently learned why i was so sick and for a few minutes at the ER, I thought i was dead. Like within days. I did not want to be dead. I have a son and grandson. I have friends, pets and many interests. I just retired. I want to LIVE and i am happy to sit in a recliner while a machine does the job my kidneys can't.
My husband does his treatments at home he feels and looks much better
Hemodialysis?
Thank you so very much for your videos. I have lupus and FSGS. I have been on the transplant list for almost four years now. I have so many questions. I love that I can trust your videos. You are a reliable source of information. I have been doing dialysis for a little over three years now. I have had some severe issues. I got tumoral calcinosis so bad that I would have to be in bed for a whole week at a time with severe pain and fever. Your videos are very important and I am so grateful please make some more.
Thank you so much, but I hate that you've been struggling so. Don't hesitate to send me a note with questions and I will do my best to work them into a future video!
Hang in there. I had fsgs as a child and was on dialysis as well for 4 years. I received my kidney transplant almost 20 years ago. You will get yours too I know it. Stay positive and keep the faith♥️
Sitting on a machine for four hours every other day is shit.
Yeah, I hear you. And…just 60 years ago, everybody with end-stage kidney disease just died because dialysis didn’t exist. I hope you can focus on what dialysis allows you to be here for.
@@realkidneytalkwould be better!! Im on it out of guilt and duty
@@phillywhateverguy is it very painful?
My kidneys failed and I did not want to go on dialysis. I told my family that I would rather die. It was only because of my grandkids and the opportunity to see them grow up that I agreed. I was lucky that I was only on dialysis for 6 months before I had a kidney transplant. It was the worst 6 months of my life and I would not wish it on my worst enemy. When my transplanted kidney fails, I have had it for 10 years, I will not be going on dialysis. My specialist told me that dying of kidney failure is the gentlest way to die. You go to sleep and just don't wake up. That is what I will be doing. My affairs are in order and I have no fear of death.
Have you considered asking God to heal you?
@@Nicolee7764what in the world makes you think that will work??
@melinaesparza4006 I've seen God's work for myself. God created you, and he loves you. Please stop turning your back on him. This life is difficult enough. Don't suffer for eternity as well.
@@Nicolee7764 What if that does not work ,I had my transplanted kidney fail, and before it failed completely I did pray ,fast, call even elders to pray with me. Guess what my kidney still failed anyway.
@monicabubu5139 My heart goes out to you. I'm not saying that l have all the answers, only God does. I can only attest to what l have witnessed. Did you ask him what to do? You're alive, praise God. That means he can still heal you. You need to learn how to speak to him and be able to hear his voice directly. I will keep you in prayer. ❤️
My brother went to ER Wensday morning and I was told his kidneys where working 2 to 3 %, and his cre number was18, know nothing about kidney's at all, next morning I was told his blood count went down over night and his kidneys got worse. Started on dialyses Thrusday morning, it's been 3 treatments in 3 day's, his color has come back, he feels better already back to his crazy self....don't know whats next
Why did he go to the ER? What symptoms did he have?
Beautiful black woman
I have kidney failure.. but I decided not to extend my life.. I dont have a wife or kids and no family so.. I am at peace to dying from my kidney failure..
@@shannon0676 Peace be with you. My Mother made the same decision and she died peacefully in her sleep. I had to respect her decision even though it broke my heart😔
My dad died a month ago due to kidney and heart failure. He was on dialysis for 4 years and ended up getting a brain stroke. Then he was admitted to the hospital and picked up swine flu. This ultimately killed him as it was too much for his weak heart
Omg may he rest in peace
May your Dad rest in peace 🙏🏻
I just lost my mom this past week from kidney failure 😞 she also had congested heart failure 😞 May she rest in peace 🙏🏻 she was on dialysis for 3 yrs 💔
@@Nani.S24 I’m sorry for your mom. May she rest in peace. It’s been a rough ride this past 2 months and I miss my dad dearly
I miss my daddy so much
I was about to give him my kidney when they told me I couldn’t since I have a benign kidney tumor 😢
I had no idea your message would become so beautiful in the end! Thank you.
I’m a 72 y/o liver transplant patient, so of course my kidneys are failing. So thanks also for helping me decide to avoid dialysis. I’ve had an awesome life!
thank you DOC !! 🙏 PLEASE PREY FOR MY FRIEND (M) TO GET BETTER !!
Wow awwwww thanks for being transparent sharing is caring shared bless your life
Beautiful Lady ❤
My Dad his two kidneys fail n he is doing dylasis Every week. Now he is serious
Only God knows he will survive or no, it's really hurt me seeing my dad
Pls God heal him ❤ gv him another chance 😭😭
My aunt said the same thing. She watched her dad and sister go through dialysis and always said she’d rather die.
Lots of people say this. Almost all of them change their mind when they actually feel like they are gonna die soon. I try to help people understand that others’ horrible experiences will not necessarily be theirs.
@@realkidneytalk
I need to goto dialysis in next 2-3 months.
Please let me know how does it feel! Would I be able to do my software job?
Doc said he will put me on Peritoneal Dialysis
Me and my siblings have seen our mother go through dialysis. Our perception of dialysis is very different. Some see dialysis chance to live, some only see suffering.
@@shaziachau2812
What is painful or bad thing about dialysis. Can you share some details.
I suppose that there may be people who can have a tolerable life on dialysis, but there are people in horrible condition on dialysis. By horrible I mean blind, diabetic, high blood pressure, amputated limbs and basically being as helpless as a newborn baby boy, not being able to do anything at all for yourself. Being dependent on those around you for everything and putting a hell of a workload on them. Also incurring astronomical medical care costs. How much must be spent on someone who is on deaths doorstep? How long do we keep people alive on life support machines? When is enough, enough? Who wants to live their life like that? Wouldn't it be honorable for someone to say, let me go into the afterlife? I know a man in this condition, it's not a pretty site. Just end it !!!!
I agree if dialysis is only creating or prolonging a miserable existence it should be stopped (did a video on that). This video was referring to the majority who say no to dialysis without ever having tried it (and likely live better and longer with dialysis).
They just gave my grandma an option of dialysis or dying . the kidney Dr. suggested to not go through dialysis because its just a bandaid and she will be in the same bad state but longer 2wks he said. Sounded like crap for a doctor to say here in south florida.
Kidney doctor asked me if I didn't think I'd lived a long life. I interpreted this to mean he thought I'd lived long enough. I changed doctors. The new doctor isn't very good either, I can tell he is not interested in keeping an old person alive.
Wow! You gave your husband your kidney! Simply beautiful! I stumbled across your channel and I subscribed immediately!
So from my understanding from what you're saying is that I can still die on dialysis if my kidneys are below 8 percent? I thought Dialysis keeps you alive longer as long you keep going with it even though your kidneys are gone.
Dialysis does help most people live longer once the kidneys can’t keep up. And none of us are getting out of life alive.
Mine GFR is at 41,000 last week. I am on kerendia once a day. I feel really tired and I have other health issues. Lupus, Diabetic, High Blood Pressure and ITP. But my kidney doctor said to be a while for dialysis for me.
I agree with your nephrologist. Just try to focus on protecting the kidney function you have.
Thank you. My partner is 69 and end stage 4 kidney failure, just had a fistula put in. She is a frail lady and has already indicated dialysis might be too much for her. As a stroke patient, sometimes it is not always easy to know if she is fully aware of situations. I feel like I am losing her. But I will respect her decisions and I will be there for her no matter what. And we will just have to take things as they come.
Your video elucidated feelings I have been having. And you are a lovely caring person.
Thank you.
i am 17 need a kidney transplant in about 7-8 years. don't need to start dialysis I have a donor. But what are your thoughts on the artificial kidney?
Last I heard (pre-covid), they were starting human trials in people already on dialysis. Maybe I'll do a video on this (and the pig transplantation they are working on) soon.
Dialysis is not that bad. You feel a little tired the days you get treatment. The other days you feel great.
Thank you for this real talk. I'm 57 years old and my eGFR is 62 and falling. I was of the "I'd rather die than be on dialysis" mindset, but you've given me a lot to think about.
OMG, GFR is not the only criteria for CKD. Do you have micro or macro albumin or PROTEIN in URINE? If not, you don't have CKD. This DOC is scaring the shit out of people.
I was at 30percent and went to 25 percent but staying active and drinking lot of water and dnt smoke but I do smoke Marijuana and it some what help build it back up to 30percent, I didn't tell the docs that I smoke cannabis but some how went back up to 30and i don't have the protein in urine anymore neither but have anemia in the kidneys but i dnt know where it's at now but if i had to do dialysis to stay alive i would cause i have kids and im a young 43 year old still with alot ambition to my dreams of being a boxing coach and wants to be a pro trainer one day and so i carry my faith with God with me to allow that to happen, all this is the cause of takeing to much B.C. powder and Iprebuffin for my Arthritis in my ankles now my ankles getting better now left with this stupid kidney problem at a early age, i am no diabetic but has high blood pressure tho.
Hi 👋 how do you got rid off of protein in the urine?
I am going through this right now with my father in law. He's saying he'd rather die than go on dialysis, and he's been sticking to it. He's in his 60s, just retired. We have a toddler and one on the way, and our kids are going to miss him if he doesn't accept treatment. He's at 14%, protein in urine, diabetes, the works. Hes been pretty darn good about his diet and lifestyle changes, but his function has steadily been failing the last few years.. There's just no way we'll find a transplant from the family, it's not going to happen. Wait list right now is 8-10 years.
It's very frustrating trying to talk to him abour dialysis, and to teu understand what he's thinking. I know this hasn't been easy for him, but I don't understand where he's coming from. We go to these appts with the nephrologsist with my father in law, and I swear, it's like he's in an alternate universe. He hears the nephrologist say one thing, my wife and I hear something totally different. He's not honest with his nephrologist and tries to downplay his symptoms.
So whatever, maybe he won't listen to the nephrologist whose been saving his life, so we thought, maybe he'll listen to family. We have extended family who are well educated in medicine and healthcare, friends who work in pharmaceuticals, my wife graduated from MIT. He won't listen to any of us, either. He acts like dialysis is a death sentence, painful palliative care. He keeps repeating something he read on a Google search, "if I go on dialysis, life expectancy is 5-10 years."
Lately I feel like I'm done pleading, I'm done trying to convince and bargain. After today, I'm just getting mad. I'm starting to see how I'm powerless in this situation.... it's not my choice, whether he accepts treatment or not. It's 100% his call. If he would rather die than get on dialysis, it's his decision.
@@wolfumz my dad was on dialysis for last 2 years and eventually passed away. There is some truth in what your father in law is saying. When you get on dialysis there is no turning back and you become very hooked to the process. My dad struggled with peritoneal dialysis as it caused lots of pain in his stomach and he was constantly complaining how his stomach would hurt him. Eventually he passed away. I say eventually because my dad was a leader and it was hard watching him struggle daily not being able to live his life the way he wanted to. He was bed ridden most of the time and couldn’t leave the house since he was doing dialysis 4x a day.
My mother was on dialysis and I swore I’d never do that myself. Well, I have emphysema and surprise to me, I now have some kidney problems. Previously my GFR was 80. I suspect it’s lower now. Glad I found your channel. Gotta do some research.
Planned to respond in the video I just posted but it was getting too long! I'm glad you find my channel helpful. Please don't assume your mother's experience would be yours.
@@realkidneytalk thank you. I am curious about the connection between emphysema and chronic kidney failure if you choose to address it. I just don’t wanna sit in a chair six hours a time three days a week among other sick people. Home dialysis is kinder but still… God Bless.
I'm not aware of a direct connection. I would imagine people with lung diseases would be more sensitive to volume overload (which would only be an issue for people who can't pee out extra fluid) than those without lung disease. Wishing you the best.
Stay on top of it bro.
I have CKD stage 4, high BP, high cholesterol, COPD, Diabetes type 2.. I don't want dialysis as i have seen my mom go through it. Everything i have my mom had. I changed my diet and really wondering how long life i have tho i know no one knows.. I'm ready to die and not scared as ill be united with my departed husband...
Are you still alive?
"I wouldn't wish dialysis on my ex-husband." = Coke through nose! :D My eGFR has fluctuated between 50 and 58 since my diagnosis at age 58 seven years ago, and my biggest fear is, of course, dialysis. Am trying to do whatever I can to protect my kidneys, but that fear never leaves. This is a great little talk you've given and to donate a kidney shows you're walkin' the walk, young lady. Color me "SUBSCRIBED", baby!
You have to stick to a RENAL DIET Percy…..
I would kill to have an eGFR of 50. You can be just fine if you take care of yourself and listen to the kidney specialists. My eGFR was below 30 for over 20 years until my kidneys finally gave out. With any luck you will die of old age before your kidneys fail. biggest things I was told to do for my kidney health are. Quit smoking. (anything that can cause blood flow issues are bad for kidneys), 2 drink plenty of water (yes you can have soda and coffee, but make sure you have water as well) and loose excess weight. Basically eat a heart healthy diet and get some exercise to keep the blood flowing properly
I've never had a weight issue, but I'm deep into all the other stuff. Thanks for your uplifting message, and best of health to you. @@jeraldbottcher1588
My husband has kidney disease, and i found a you tube channel that is very helpful!! Do yourself a favor and check out "DADVICE .TV" (copy and paste that in the search bar, but take out the space between the E and the . before hitting enter).
You will get the link, James is the person in this video whose GFR went from a 13 stage 5, to now 22 stage 3 and holding steady since 2018. He did not go on dialysis, he has learned diet is the key, and drastically changed his diet. He has MANY great videos on kidney health, diet tips, do's and do nots, he has guest nephrologists, and renal dieticians who do live question and answer videos, just sign up on his you tube channel, and a whole lot more. You can still improve your kidneys by not eating out at restaurants, stay away from processed foods and foods high in salt, read all of the ingredients on the labels, and make sure you are drinking at least 4 bottles of water every day to keep your kidneys flushed, and even drink lemon water to help cleanse your kidneys! Also check out "Dr. John Bergman - kidneys", on you tube and the same with Dr. Allen Mandell - Kidneys" also great channels. I also like to watch "BESTIE HEALTH - KIDNEYS" to learn how fruits, vegetables etc. help in healing your kidneys... just though I would share... hope that helps you and others! Have a good day!
All of these people dying in atlanta why aren’t these kidneys being passed out ‼️‼️
Senseless killings aside, maybe some had signed up to be donors.
Hello Dr Vanessa… I would rather have had someone like you (cursing or not) who’s willing to “tell it like it is” and in layman’s words rather than doctors who said “you have chronic kidney disease, but you are doing good, don’t worry”. I knew zip about CKD, so I didn’t worry until the pain in my left side became significant enough to get my undivided attention (about 10 years later!)… I seriously wish I could talk to young 40 or 50-something age people who gets this news but don’t feel sick or have any pain. This world needs more doctors (of all types) like you!! Thank you!
I have had kidney disease for over 20 years, we were able to keep it at bay for a long time, but eventually my kidney functions dropped so low that I was feeling pretty bad (egfr under 12) I was deemed a good candidate for peritoneal dialysis (age 64 at the time) and am currently on dialysis (PD)
Yes it is a little bit of a pain in the keister. I do fluid exchanges 4 times a day. However Peritoneal Dialysis (PD) gives me a lot of flexibility and I can still take part in most if not all of my previous daily activities. PD does not leave you feeling "washed out" like HemoDialysis can. Yes I am on the transplant list, but the waiting list can be years.
On the positive side of things. my dialysis has been pretty drama free, no complications, and my adequacy is doing very well. I am feeling SO much better (I feel like I am back to 90% of normal, and considering I am looking at what normal was when I was in my forty's and am now 65 I think I am doing REAL GOOD)
Dialysis is NOT a bad thing to go through. Too me I look at it as if this is a game, and the rules just got changed. Still have to play the game to win. I am grateful that they have PD as an option. It leaves me the ability to live my best life
Unfortunately my brother chose to die than to take anymore dialysis.
Prayers for your brother 🙏
I have kidney disease I would rather die, than live my life on a machine,
@@beverlycrawford571 my brother died almost 2 years ago. But, thank you for the prayers.
@@nevillesellars6532 I'm sorry honey. My brother did die because he said the dialysis was just to much. I also have kidney disease. Right now mine is at stage 2. I will be praying for you.
Same happened with my mom, she died within 1 months of dialysis, she got weaker and weaker, she died peacefully in her sleep, she was 47
My deepest condolences 😢
I feel you ❤❤❤❤ Be strong 🙏🙏🙏🙏🙏
Check out moringa powder, acacia fiber and consumable iodine.
Absolutely not.
@@realkidneytalk Why not? Acacia fiber looks good. Actually any kind of fiber is good for kidneys.
❓Question❓ If they told me they won't do a kidney transplant as I have some other health issues. Why did they put me on Dialysis? For reference 80 years old - 4% function left - 9 hours a day in home dialysis using typically the 1 yellow 2 green and 1 purple solution each day thru that machine. Realistically how much time is it buying me?? I can't understand most of what the Dr's talk about during my appointments and continually need help to get this machine working. Really beginning to wonder if it's worth it. Any information would be helpful.
I’m 70 years old and I have polycystic kidney disease. It’s genetic, my mom had it, my sister had it and my son has it. My kidneys have big cysts growing in them and there’s nothing doctors can do for it. My GFR is at 14 and the nephrologist I see is telling me I need dialysis now and it scares me to death!’Nobody here is mentioning weight! I was normally at 104 but I’ve dropped to 87 and I can’t gain it back because most foods I like, I can’t eat! Plus I don’t have much appetite anymore. I have finally agreed to going and getting vein mapping to see where to put a fistula to start dialysis and it’s a long process. I just hope my kidneys don’t fail while I’m waiting to do the fistula and then it has to heal which takes time. When it comes down to it, I don’t want to die yet and I have a lot of other very serious health issues, like an abdominal aneurysm and losing so much weight! I’m so tired of doctor’s appointments not to mention the cost! I only have Medicare and a Medicare Advantage Plan so it leaves me owing a lot of money which I don’t have!! I have a severe case of scoliosis and it’s making everything worse and it’s painful. It’s like everything hit me at once and at my age there’s not much they can do for scoliosis other than physical therapy and that’s when my kidney function went down, when I got scoliosis. I trust in God and I am asking Him to heal me and I have people praying for me or it could be a lot worse!
I am scared, but who wouldn’t be with all these bad health issues? At this point mg nephrologist is more worried about my weight than what I eat! He told me I can eat anything but I won’t eat the things that’s bad for my kidneys! I don’t have family or the money for a transplant either so I’m looking at how long I can live on dialysis with everything else that’s wrong with me!
My brother in law decided to die rather than dialysis. He passed away about 5 years ago
😢
I don’t quite understand. Why when all you have to do is show up 3x a week or so?? Sorry for your loss
What are the symtoms besides the GFR, mine is 13. I am dieting and walking, exercises. is
dialysis better ón the arm or the stomach and do dialysis at home?
When you say 60 or 20, what test is that? My brother is in stage 5 kidney failure, but which lab should I be looking at for this number? Thank you for the videos.
I did parotoneal for 6 months before getting a transplant that lasted 13 1/2 years. Now doing hemo and I hate it. I will be going to evaluated for another transplant soon. If I'm not able to get one, to Hospice I will go.
I was transplanted at 17 due to my renal dysplasia. I was saved by the bell, by not using dialysis before. I worry about one day I will. Or that maybe since I wasn’t born with kidney disease, they could heal. Idk. Cuz all of a sudden they prescribed me calcitriol and I recall it was for my old kidneys. Like my Transplant is doing all the work.
Good for you on getting a preemptive transplant. But renal dysplasia means your kidneys didn't develop normally before you were born.
Well today was suppose to be my moms first day, but she refused to go. But later on I took her because the doctors wanted to talk to her, she has a kidney lost one becauae of cancer. But this one isnt doing well. Diabetes and other problems as well. Shes 60. Not going to lie, when I first walked into the area where the procedure happens it was heart breaking to see all these people on their beds. (The fisrt thought in my head was that it looked like they were farming people, yeah a bit crazy because of movies, SO SORRY FOR THINKING THIS!!!!) But the doctors wanted my mom to see around, talk to some of the patients. Some were sleeping which they made it seem bad, but I guess they were just tired, others were normal watching tv, on the phone, eating their snack which started to ease me a bit. But my mom starts on Monday if all goes well!!!!! If it hit me cant imagine how much it hit her. Love you all and stay strong!!!!!❤️❤️❤️❤️
Don’t be sorry! Feel all the feelings-and then find out if they are warranted. I’ve seen so many walk into the dialysis unit and only see the absolute worst, rather than someone similar to them! Even then, one person’s experience is not necessarily another person’s. And most imagine it’s worse than it actually is. I’m glad your mom is gonna give it a try based on what you’ve shared. And if hemodialysis is miserable after 12 treatments, then I hope she’ll try peritoneal dialysis if that’s an option. At that point if the downsides still outweigh the upsides, then one can make a decision based on LIVED EXPERIENCE instead of fear. Wishing you both all the best!
How did it go?
@@Rumeel12708 🙏🏻🙏🏻🙏🏻
It's been great for my mom!!!! Now she takes a blanket, her phone, ear phones, neck pillow haha all comfortable. She's made friends so now that she's been doing it for a year it's part of her normal life now! So the dialysis has been solmooth sailing. The bad thing has been that her catheter has clogged twice which is not good, we've had to take her to the ER. She's recovered from both but now her veins won't expand so they can't find a strong enough vein to replace the other two catheters, so she has a temporary one in her neck, previous ones were in her arms. So now we just have to wait for where the new one will be placed.@@Bloodsport1
Im currently at stage 4 and contently suffer from gout the pain is terrible im told its common amongst kidney patients.
Its there anything i can do to stop it
This is a tough issue and I see it as a communication and information issue. I choose to treat and continue treating for many reasons, but I have a loved one who chose not to and they passed away. That situation hurt but I respected their choice. A potential patient needs information and different perspectives of what a life with ESRD is and can be. Also being well informed can improve your outcome and quality of life.
So if you are making a decision on whether to treat or not, or have a loved one who is please talk to some patients first. Search for a support group (try to stay away from the ones sponsored or run by corporations) and get some different views on the subject. Feel free to comment here I am glad to respond.
Agree. In my experience, many say no because they are afraid or only considering horror stories. I've only had 1 patient under 80 who legitimately understood reality & chose hospice over dialysis. I supported their decision.
I have been the lucky one here. I have been living on 1 kidney for 55 years. I been around may dialysis patients because I use to work in a dietary department in a care center. I dealt with the renal diet a lot... that got me thinking about what I would do if my 1 kidney gave out. I had a scare about a month ago...the blood pressure meds went thou the kidney and was affecting it in a small way. They changed my meds and all is well. That being said it got me researching kidney dialysis to see what it really entail ...so I could decide ahead of time if needed. I am thankful for sight like this.
Good Morning Praise God . I have brother who is on dialysis he had a stroke about 6 month ago and during that time they the doctor had put him on dialysis .My brother doesnt want to do it because he say because he can still pee he dont need to go. he has missed his last appointment it has been 4 days now no dialysis what is going to happen to my brother. and who can i get his kidney damage number from because he want proof
God bless you DRI have a question I have chronic kidney disease stage three do I have to take kidney dialysis..
My situation is messed up. (Not that others aren’t)… Got osteosarcoma at 15 in 1987. A year of chemotherapy damaged kidneys. Ten years later the leg I had the cancer was amputated due to an infection in the area the tumour had been. Hypertension for years. Both kidneys removed (a mistake). Thought it was cancer. Wasn’t. That was 2015. 8 years in dialysis. Feel great. Work out. My one track minded nephrologist wants me transplanted, but I am scarred I will feel worse than now. I wish I could speak or get advice from another doctor than the only one I speak with at the tiny dialysis place I go to. I had a machine at home for 6 months two years ago. I live a life alone. Eventually my first fistula collapsed and got infected. Had to be blocked. Got a new one on the other arm. Perhaps the last one they can make, so I take care of it. Works very well and I am back at the hospital three times a week, which I prefer, despite being Sick of the nurses faces and all their intrusion on me and my personal life while they tell me little about themselves. A successful transplant would definitely be a better solution, but I am afraid of it going bad and not being better than dialysis for me. I don’t need to remove fluid during Dialysis cause I have an infra sauna that I sit in three times a week. Sweat enough. They didn’t believe it would be adaquit, but it is. So. What do I do????? Continue dialysis for life or attempt a transplant if they offer me one from a dead person?
Sorry you've been through so much. Sounds like your biggest fear is that the transplanted kidney won't work, but 94 of 100 deceased donor transplants are working after 1 year. And for the unfortunate 6, dialysis is still there...
Get a transplant it is the only acceptable wayy off of dialysis. Talk to the transplant RN. GOOD LUCK
God bless you I will continue to pray for you. I can tell you have a strong spirit.🙏🏾🙏🏾🙏🏾
@@Paula-ps1vi thanks.
You been through it. I’ve been transplanted for 6 years now, no dialysis but I’m low key scared of my blood going into a machine. There is so much anxiety about it. But I know I’ll manage.
Work with your doctor and medical 😷 team
Im in this situation and i dont want dialysis myself i hate this situation i feel so trapped i just dont know what to do
Do dialysis or get a transplant. its worth it to keep living
Hi lam in the same boat am 64 I’m so afraid please write back
Bun and creatine levels are high.
3 years ago My 81 year old Uncle suffered a UT blockage that went untreated and caused him to end up with 5-10% function. The Renal Specialist wanted him to try dialysis but he refused. He's still "kickin" but his QOL is poor but painless. Since it's gone on so long I have to assume that there are those people with metabolisms that are more resilient...?? Perhaps his Marlborros are keeping him going!
Maybe so . There are many different situations and some people just can not handle dialysis and all that comes with it and it is very understandable . Through the years I heard some say they just couldn't handle dialysis they were speaking for older family members who died with bad kidneys and died from it .
Thank you
You're welcome
Thank you for your help. I am approaching seventy years of life; have heart disease, type II diabetes, and I am in the nausea, skin irritation stage. I will not do dialysis, the quality of life for me will not be sustainable, plus the burden on my brother and sister and their children. These videos plus ERD by hospice care givers has been very helpful, thank you again.
Is she an angel come to earth ? Nobody is that good.
Thank you. No angel here. Just trying to do what I believe I was put here to do.
I didn't feel optimistic by this vlog. Why are you doing this?
Does “optimistic” mean you hope I’ll tell you going back to normal kidney function in all circumstances is possible? If so, this channel isn’t for you. I’m doing this to give people real information, so they can better face their reality.
Wow, the doctor is just telling you the truth. Do you want to be lied to? What good would that do?
@@laurabeissel9345 She's a debbie downer. People know they have a serious condition, they don't need to be told everyday that they won't get better. Feeling better and optimistic is mental and physical. Feeling optimistic can help prolong your life. She need to stop.
Hey @tisha954 - Please remember, you don't have to watch my videos every day, or at all! But your comments made my latest video! Check it out (or not): ua-cam.com/video/ndiURUj0UPY/v-deo.html
My mothere egrf is 4 and creatinine is 10mg/dl...blood is 6g...she refused to take dailysis. Also suffering from HIV and diabetic..she is in pain..she can't sleep due to shortness of breath whole night..how much life she has?😢😢 What medicine we can give so that she can sleep
My Father is 81 and at 12% kidney function. He will start dialysis mid April. Why isn't the dr.being more urgent about starting dialysis sooner? He has no symptoms but will He be able to last until mid april?
The national average is to start at 10, but in my experience, people don't have clinical reasons to start until between 5-8 depending on person's size, diet, symptoms. Studies have shown starting earlier doesn't make a difference in how long someone lives.
I started dialysis at 5 percent. I pushed it a bit , I did have a graph put in my arm ahead of time, had to do a cat scan on my my adrenal glands, they saw water around my heart and I was in dialysis 2 days later.
You are an angel! That was soo brave of you!
As a transplant patient that has a transplanted kidney that’s at end of life. I have chosen to go back on dialysis eventually, and lessen my risk of continuously have cancer from all of the immunosuppressants
My GFR runs between 14-18
I started my Dialysis back in January but have been going through kidney failure since 2023 and yeah there are times when im like screw it and just wanna quite but then we can't selfish we gotta use that strong willpower thats gotten us this far in life
I forgot to mention that I have had a transplant but it was such a bad experience that I refuse to get another
Transplant is not for everyone and its not a cure all. It is another treatment for kidney failure. Some people do great with transplant. We have to find the best treatment for ourselves
Completely agree. People look to transplant as some kind of miracle cure, but it is simply a treatment for kidney failure that comes with its own set of problems. For the vast majority transplant does afford a longer & better life than dialysis. I'm sorry you were one of the minority for whom the bad outweighed the good.
@@realkidneytalk thats just a part of life. Not everything is for everyone but I'm not complaining. I do very well on dialysis. I say give transplant a try. You never know. It could be the best treatment for you. I know a lot of people doing great with the transplant.
my mother in law is in stage 5 kidney disease...she was in hospital very poorly 5 weeks ago but is now home and feels well, she looks well too...but the reality is she is not having dialysis nor a transplant on her nephrologist's advice as she is too fragile for either one. Her diabetes has also returned having had it in remission for 2 years or more...the amount of meds she has in her home is phenomenal!, her lounge is like a clinic!...she tends to her own Stoma bag, she also has a catheter and yet in herself she appears fine...I am just seeing what I want to see?...I need someone to be straight, how long does she have in your experience?
I'm not a Dr- but I an an RN and a hemodialysis patient. In stage 5 ESRD she could last for months depending on additional lab values. Stage 5 is a GFR of less than 15- they usually start dialysis either when the GFR drops to around 10 or when they become symptomatic or the potassium gets too high. I didn't start dialysis until my GFR was at 10 and even then I was was ok bc I controlled my symptoms with diet. But at some point that doesn't work and you become symptomatic and you may not even feel different until you start dialysis, then you feel the difference. Hope that helped :-)
@@bethaltieri986 Thank you SO much for answering this!...she did have Hyperkalemia when she was admitted to hospital and now has a low potassium diet, as well as a diabetic diet...but, she's self-neglectful and her friends come round and give her stuff she shouldn't have!, it was chocolate on the night she was actually released from hospital!!..old people!! jeeez!...if I didn't laugh at that sometimes I would cry!...so I will say she has months, or less depending on her friends!!
In my experience, rarely does a person clinically need dialysis at GFR 10-- that's just the average nationally. I want to believe nephrologists are doing what they think is best...but dialysis is a lucrative business too.
@@realkidneytalk They have told her she is not a candidate, ever! 😪..too fragile with so many other health issues, so even when she is at 10 they won't do anything for her. x
@@plushypuppy2024 I’m sorry, I know this is very sad and scary. In truth, dialysis can make life worse for the very old and frail AND doesn’t promise a longer life. In my experience, a person has about 2-3 weeks when the medicines can’t reduce the swelling anymore. I would encourage you to get palliative care involved to help make the time she has as good as it can be.
Dr Vanessa ..ive been on this T2D/Hypertension/Ckd/ERSD Rollercoaster for over 25 years and had 3 of the 4 methods of dialysis since spring 2022.Ive been on the transplant list @ Northwestern Memorial for over 3 years now.I have hope regardless of the pros and cons of this journey..Because of my interaction with my family, freinds , specialists and my own will( despite slight vascular issues) im @ eGFR 19% and A1C of 6.0..Thanks for the insight
I'm 64 years-old. My creatinine is a 5.9 and egfr at 6. I have a daily BP readings of around 175/90 or higher Before saying yes to dialysis, somehow I didn't want to do it. Now reading these comments make me think i don't want to be on dialysis. Something tells me that it would be worst for me since my heart is very weak after having open heart surgery 4 years ago. Does anyone here experience any pain on the sides of your abdomen and in the middle of your abdomen?
How are you feeling? I have GFR of 4 no dialysis
No alternative for a kidney transplant
Dialysis is an alternative. Sure, kidney transplant is the best treatment for kidney failure for those healthy enough to survive the major surgery, but not readily available to most people.
You have such a soothing voice great info ✨
Thank you. 🙏🏽
If you refuse dialysis, what is the process of dying like? Do you suffer much?
I totally agree this is what I’m telling my step mom
I have an 88yo friend who is currently hospitalized with ESRD that has just been started on dialysis.
He also has CHF, the beginnings of dementia and has had no desire to eat or drink for several weeks.
Since he's been in hospital, he's developed a GI bleed which is adding to his already severe anemia.
They can't do endoscopy because he's too frail for much anesthesia and barely survived having the chest catheter placed. Instead, they're giving him 1- 2 units of whole blood every day.
I'm so, so angry for him and his family because the doctors aren't giving them the whole truth. They're letting them all think that he's going to go home and be toodling around his little garden by spring.
All they've said is that 'dialysis will keep him alive, and the most common side effects are nausea and cramping' and that he 'needs' the repeated transfusions, at least 2 surgeries, etc.
I'm so frustrated and so helpless to do anything for him.
I'm so sorry for you, your friend, and his family. The plan can always change.
Your just a friend his family wants to see him live and enjoy his little garden why can't u accept that
@annA-fl8um because he's never been able to enjoy his garden.
They did dialysis on him for several months, in spite of him telling everyone how bad it made him feel.
They did three gastric procedures on him, in spite of him not wanting them.
They kept him alive. He's still alive 9 months later.
He's bedbound, with pressure sores and legs and feet so swollen that he keeps telling us that his shoes are too tight when he's not wearing socks, much less shoes.
He's cold all the time, hates being bedbound and incontinent, and the same people that insisted on dialysis are now the same people who are complaining about how much work he is to take care of. Complaining out loud, to him. About what they did to him.
I would love nothing more than to take him outside to see his flowers, but that's never going to be able to happen again no matter how bad anyone wants it.
They didn't prolong his life, they've only prolonged his death, and he resents them for it almost as much as they resent all the care he needs.
@@nobody8328 how sad just let him read scriptures to uplift him and to seek the Lord while he can,
Thank you for all the encouraging comment , i find out this day that my brother have stage 5 kidney failure and right now I'm still thinking if his doing dialysis or not, it really breaks my heart
What about stage 4 be reverse
I've been on dialysis for the past month and a half. I'm already burned out on it and don't really see what I have left to offer the world. I'm not feeling better. I have no support and everything is falling apart. I've lived a good life I'm in my 40s which I guess I'm young but I'm ready to go.
I pray for you. Only those in your shoes will truly understand your pain
Don’t said that pray 🙏 get close to god he will help you out.I’m also sick with my kidneys but try to be positive
Praying for your peace on earth and beyond
I am a current hematology dialysis patient here in Australia. I am required to receive treatment 3 days a week with each session being 5 hours each time. I am currently coming up to my 4th year which began intially as a peritoneal patient but due to an infection, was given a fistula so that I could receive hematology instead. A quick Google will tell you the different types of dialysis you can receive and for what reasons. I am now 57 about to turn 58. I would say most days I am fine but there are definately days where I am "down". The good thing is the down days are few and far between and are typically after coming off dialysis. This feeling generally only lasts for a couple of hours if that and combated through either sleep, food and drink or all three. I tend to find that the feeling of being "down"is a kin to feeling a little dizzy combined with chronic fatigue. Not a very nice feeling but manageable. This feeling is usually bought on during dialysis whereby too much fluid is taken off you. If this happens your blood pressure will usually drop below 100. At this point your dialysis nurse will stop taking fluid off you and may put some back in you or just give you something to drink. It doesn't take long for this to quickly reverse the dizziness. Staff will not release you if you are feeling unwell but I have not met anyone who has had to stay longer than half an hour pass their treatment time. Where I do dialysis, the nurses are the best, they are fantastic. I cannot speak highly enough of them. I know of patients who have gone on to receive transplants and who are now living a relatively normal life and also some whose transplants have failed and are now back on dialysis. I also have one of those failures who had a not so good experience with his and said that if he had known what he knew now, he would never of gotten the transplant in the first place. He had complications and after doing further research on the life expectancy of remaining on dialysis, he would rather do just that. My personal opinion on dialysis is that I find if I do the right things, eat the right food, exercise and take my medications then my down days are pretty much non existent. I feel fine, bordering on fantastic most days if I'm being totally honest. I'm not saying I eat healthy 100% of the time and neither do I do any strenuous exercise either. A mild 20-30 minute walk pretty much everyday, minimum. I have a goal of putting in 10,000 steps everyday but if I make it, I make it. I certainly don't obsess over it. I have though just started stretching everyday coupled with some push-ups. I find this has helped me exponentially as prior to this I was feeling "old" and stiff but now find I have a lot better overall movement and functionality. Because one thing that I had noticed with the number of patients that i attend dialysis with is that they all tend to walk with a "stoop" similar to that of a very old person. It seems to gradually ingrain this characteristic into patients as time goes on. For me, I feel this has kept that at bay because of these extra steps that I have taken. That's just my personal view. So I just want to touch on the point of taking off too much fluids, something I mentioned earlier. So when you have chronic kidney failure(CKF) or end stage kidney failure (ESKF), one of the things that you will soon come to realise is that you can no longer produce urine (among other things). As such your body will now hold any fluids that you now consume in any shape or form. Be it water, milk, soup, yoghurt, ice-cream, ice block, basically anything and everything that has liquid in it. So what will happen in your very early stages of becoming a dialysis patient, doctors and nurses will try and determine what they call your dry weight. This is essentially your body weight without you not drinking any fluid, hence the term dry weight. They will then put you on a fluid restriction limiting the amount of fluids you are allowed to consume. You now have to account for all of this being mindful of the examples of those that I mentioned earlier. Your restriction will typically be between 500 mills to a litre a day. Given that you are in dialysis every 2nd day, you could potentially add anywhere between 1.5kgs to 4kgs and more if your not careful. Every litre is equivalent to a kg. During dialysis is when they get to remove this. Your body has a tolerance level that is different from everybody else's. A small fragile lady might only be able to handle 2 litres maximum before she starts to feel dizzy. I know for myself, my max is 4 but have been known to go as high as 5. That was the early days. I also know that as soon as I start feeling the telltale signs of feeling yuck, I let my nurses know immediately and they will stop taking anymore fluid off me. They will also monitor my blood pressure to make sure it doesn't go below 100, another sign that you won't be feeling well. They will try and get you to as close to your dry weight as possible without compromising your well-being. Sometimes that dry weight may have to be adjusted and that maybe due to a number of different reasons, weight gain through overeating. Sickness, loss of weight etc. So exercise, a good consistent diet and a stable fluid restriction is key to a successful dialysis. I know a lot of patients struggle with this, but if you can get some control of these areas, you will go along to managing your dialysis. The only other thing that I will say is that for me, 5 hours is a long time for me to be sitting still. I've always lived a very hectic life, so to now just to have all this time on my hands literally kills me. Most patients tend to sleep. So if you want to take up extra study or catch-up on TV programs, this is the ideal situation to do so. Hope this helps.
@@GameChanger-nk4rr please trust in the Lord. Heaven is our forever home
16 years ago, my wife gave me her left kidney.
We matched perfectly! 7 for 7 markers.
That was my 2nd transplant. My first kidney transplant lasted 15 years.
I am now facing dialysis again bcuz the Tacrolimus medication has been helping and choking the life out of my kidney at the same time.
My kidney is full of keloids and my gfr is under 19. I’m choosing peritoneal dialysis bcuz I want control over this part of my life…this time. “Rather be dead than be on dialysis?”
Yepp, been there done that with that thought.
Yet, by God’s Grace, this new chapter will extend my life and restore my strength & hope for what’s to come.
@@moiyaluv May God give you grace, healing, comfort, and peace.🙏🏻💖😊
You are wonderful! Thank you for the video!
I been living on one kidney for 55 years now. I had kinda a scare couples week ago and it ended up being my blood pressure meds. I worked ina dietary department for years. Deal with renal diet a lot. Thank God I haven't have to make this yet so I getting inform now. I am 65 years old and I thank you very much for your vedio .
You are an extremely intelligent and beautiful beautiful woman. ❤😇
What about stem cell therapy
I'm only aware of stem cell transplant allowing someone not to have to take immunosuppressants after kidney transplant, not for growing new kidneys. A video about "new therapies" is on my to-do list.
I have a question Doctor, my aunt was in the hospital for several months due to a fracture, then was sent to nursing home to recover, but her foot got infected and she ended up getting her foot amputated. Then while getting therapy, she broke her hip and went back to the hospital, 3 weeks in she was told she needed to have dialysis she was retaining too much fluids. She did receive 4 treatments and she refused to have further dialysis. She left the hospital against doctors advice and now her legs are swollen again and noticied her face was puffy. To top it off she had a fever, no cough, body aches. She was told she didn’t have much time to live I just need to know if it’s advisable to seek Hospice care and or what point do we do this for her. She wanted to leave the hospital and go home but there was no one to take care of her so she begged my mother who recently suffered a CHF, now she has a fever and I am concerned for them both. Would you say days, weeks, months? I also felt her left side where her kidney is felt like a rock, very hard she didn’t feel any discomfort either. We are trying to figure out the best thing to do for her but we don’t know how much time she has left 😢 and she’s refusing dialysis she’s refusing to go to a nursing home. 😊
Thank you very much
What a stunning woman!
Very good to have found you !!! My son was put on dialysis too early by his first nephrologist that didn't have command of the English language !!! He's been on dialysis 14 years this May , but does not have the disease, polysystic or whatever his was from shock trauma due to an accident !!! His egfr at last notice was 10 could he get his kidneys shocked to work again ,??? Just recently he found he has an enlarged prostate is going to a urologist that is really not trying to help him please let Mr know if he can get his kidneys shocked he's at range all the time in his labs
purchase LEE HULLS books stopping kidney disease it could save his life it his helping my husband
@@debbiemcdaniel857 goin for transplant soon
Just found this. Very helpful, im type 2 diabetic
At 20% you Need Dialysis
Definitely not, i'm at 16 and other than some fatigue i'm able to live my life normally. I won't even be considering dialysis until i'm under 10%
My mother went on HD in 2019 and very recently passed away. Her kidney function level hovered between 13 and 20%. She had other comorbidities though and this year she started to not be able to tolerate HD because her blood pressure would drop. When her blood pressure would drop too far, the accumulated fluid could not be siphoned off by the machine. Even giving her blood pressure raising medication did not work after a while.
When doctors told my father that he had to go on dialysis, he went to several HD appointments before deciding it was not for him. It took about three weeks for him to pass away.
Thank you for this information. I’m going through this right now with my mother who is 88. Her GFR is 25 , fun, and creatine levels are high. All her Drs. Tell me is to just make her comfortable. She’s not sick or anything like that or she doesn’t seem to be but I can definitely tell it’s taking a toll on her. Is there anything that I should be doing for her or that I should be watching out for ?I can’t seem to be getting answers from her doctors they suggested palliative care. She also has a pacemaker and her blood sugar levels are high diabetes..
Nobody needs dialysis at GFR 25. Dialysis only provides about GFR 20.
I’ll follow this comment. I’m in the exact same boat with my aunt of 88. 😢. Don’t know what to do but make her comfortable.😭😭😭😭😭
@@realkidneytalkour davita here where I live won't dialize anyone unless their eFGR is below 15 %