Patient Comments: Dialysis - Experience

Question:

Please describe your experience with Dialysis. Submit Your Comment

Comment from: 45-54 Male (Patient) Published: January 26

I was put on the dialysis machine and was on it 3 days a week for a year and a half. I keep asking the doctor my numbers and at first he would tell me and then I started reading and researching. I found that my numbers didn't warrant me being on the machine even though my kidney function was reduced. After doing all the research and getting my facts straight I went to him and told him what I found, and the only thing he could say was that I will be on the machine the rest of my life. I refused to accept that. And most likely if he would have addressed the problem of chronic fatigue and the severe pipe bending leg cramps during treatment I would have accepted it. I have been off the machine now for two years and I am not sick and I am doing excellent. Do your own research, ask questions. Don't accept what they are telling you as the truth. To me it is a big money game, you learn a lot by turning down the sound of your TV while you are in the chair. It is your life, and there is more to life than living for a machine, living for a nurse's bonus, technician bonus. My opinion is they are too quick to put you on the machine.

Comment from: AlysonB, 45-54 Female (Patient) Published: December 07

I went to dialysis today, I go Tuesday, Thursday and Saturday 1st shift. They hooked me up and it ran my normal 4 hours. A different girl who has been doing this for 19 years, came over to unhook me from the tubes. She got a horrible look on her face. I asked her if the tubes were reversed. She said yes. She called the nurse over who hooked me up and showed her. The both stood there like 2 deer in the headlights. I wonder if I have to be concerned about this. I will for sure watch what is going on every time now. I mean, I'm alive and well right now, but it scared(s) me!

Comment from: Daughter, 75 or over Female (Caregiver) Published: September 06

My father is 75 years old and has been on dialysis for 13 years now (3 times a week). For the last few months he's been having these unusual sensory feelings in his fingers, ears and nose. He describes the feeling as if there is sand on his fingertips and in his earlobes. The feelings are so realistic to him that it gets hard to convince him that there is nothing there. We have tried to talk to doctors, have been to see specialists too, but no one takes him seriously and he is getting really depressed.

Comment from: Vertex, 45-54 Male (Patient) Published: June 01

I've been on CAPD (continuous ambulatory peritoneal dialysis) for 1 year now and have only one problem; constipation, constantly. I have tried Picolax, Movicol, everything.

Comment from: hurting, 55-64 Female (Patient) Published: April 29

I had a buried catheter for peritoneal dialysis put in 2 weeks ago and still any relief in sight. I have severe pain where the catheter is. I have no fever, no drainage and the surgery is healing fine. I had an MRI and went to emergency. No one can figure out why I am in so much pain.

Comment from: ALEXANDER, 65-74 Female (Caregiver) Published: August 02

My mother aged 72 expired within one month of starting dialysis due to pneumonia attack. At the time of starting dialysis her creatinine was 19.5. The doctor did not insist on dialysis and he kept on postponing. The caregiver also gave Ayurvedic medicine which caused the increase of creatinine from 11.5 to 19.5 within 15 days. During dialysis, the patient should not walk long, not use staircase immediately after dialysis, and no long travel which might cause pneumonia attack. Take medical counselling.

Comment from: HemoKid, 65-74 Male (Patient) Published: December 29

I am 69 and was on peritoneal dialysis (PD) for almost 5 years. I kept getting exit site infections annually until it was decided to take me off PD. Apparently peritoneal infections gradually reduce the effectiveness of PD. Anyway, for the past six months I have been on hemodialysis. I was able to work full time until employer decided 3 hours off per week was excessive and I was let go. I had not taken time off since 1995. I was about to retire anyway and was able to negotiate a severance package. Now that I am not working I find it more manageable. I don't have to bother with solution shipments, hooking up, unhooking up, power outages caused by storms, etc. I simply sit in a lounge chair and let the technicians do their magic. I read a book or watch TV, or do the crossword/Sudoku. I let the technicians do their work. My results seem to be very good. I was on a transplant list for many years and my cardiac clearance resulted in triple bypass. A prostate biopsy found a small cancer and after reviewing my options with radiologists and urologists, I decided to take a pass. I'm simply tired of surgery. I vote for hemodialysis.

Comment from: suzeeonline, 55-64 Female (Patient) Published: July 08

I have been on dialysis for about 2.5 years this time. Lately I have been experiencing restlessness and drop in blood pressure. I start to sweat and feel like I am going to crawl out of my skin.

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Comment from: Seajay, 75 or over Female (Patient) Published: March 31

During dialysis I passed out. They took too much fluid off of me according to the doctor. I nearly always get cramps. My blood pressure drops drastically, 88/44 for example. That makes me shaky and dizzy, plus I feel terrible. It usually goes back to normal the next day. Blood pressure drops when I have a bowel movement also.

Comment from: lizzyroo, 75 or over Female (Caregiver) Published: October 31

My mother was on hemodialysis for 13 years. She was in her late 60s when she got diagnosed. We knew nothing about kidney failure. She was sick for a week, then she went to the hospital, stayed for a week and then we were told she would have to start dialysis the following week. She had a positive attitude from the beginning. That makes a difference because there are a lot of things that must be followed in order for you to stay healthy during your treatments. For an older person I think hemodialysis is best. My mom did great as she progressed with her treatments. She was even able to drive herself to and from the treatments for a while. I was there to support throughout the whole process. Family support means a whole lot also.

Comment from: Joecal, 75 or over Female (Caregiver) Published: November 11

My wife is on kidney dialysis 3 times a week now and about the last half hour of treatment her blood pressure drops and she starts to sweat and sometimes gets dizzy. I have no idea why this happens.

Comment from: Maureen, 55-64 Female (Patient) Published: November 17

I just had my second kidney out two weeks ago and am on my 4th dialysis. But I am have a reaction that makes me really pale, I'm breathing funny and can't keep still. I feel weak and feel like I'm dying. I can't lie still. I don't know what is wrong with me.

Comment from: taylornibbler, 45-54 Female (Caregiver) Published: January 10

My mother gets dialysis 3 times a week and she is having severe muscle cramps in her legs. I am trying to find what she can do during dialysis to help alleviate or lessen the cramps. She is 80 years old and has other conditions, if there is something to help with the cramps it may make her time in dialysis less stressful.

Comment from: mal3, Female (Patient) Published: November 16

I have tried all three types of dialysis. Hemodialysis is tiring and takes much of your time but it allows you some freedoms that you do not get on other treatments. Peritoneal dialysis was better for me because I worked all day and it allowed me to work and still get treatment. It is more responsibility on you but worth it. I connected at night before I went to bed and unhooked in the morning before I left for work. I also tried home hemodialysis. This treatment is very dangerous and you have to have someone there with you when you hook up and unhook for support. This treatment is only offered to certain people, not everyone qualifies. If you are independent I suggest you try peritoneal dialysis. If you are scared and precautious I would go with hemodialysis. I would not try home hemodialysis unless you are confined to a bed and there are no other options. Dialysis is not a bad experience once you get use to the idea.

Comment from: Cutler, 65-74 Male (Patient) Published: October 08

Peritoneal dialysis is apparently not so well known as hemodialysis, but in my experience, it is much preferable, as the patient has the treatment in their own hands and can vary the times for exchange of the solutions to suit their daily changing routines. The danger of infection appears to me to be much less the danger of the catheter becoming infected at the entry point to the abdomen, but keeping the connector free from infection. This is not difficult but requires attention to details when connecting and disconnecting. I recommend the manual exchange, though given good drainage times, the cycler has benefits, as the exchange can be intensified, and it is run during sleep. The main problem with CAPD is the storage of the solutions and other materials, as this takes up quite some space and has to be carried to the treatment area (10 kg per box). However, if the patient can accommodate the materials and is willing to do the work, the patient is much more independent and can take holidays wherever desired.

Comment from: sajid, 19-24 Male (Patient) Published: April 15

My kidney has been paining since four month. The doctor has told me that my kidney has failed and working 20 percent, and that I need dialysis.

Comment from: Suresh, 35-44 Male (Caregiver) Published: October 13

One of my brother's kidneys is damaged and it is not working properly. Currently he is in hospital. He is undergoing hemodialysis daily since last three days.

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Comment from: Jean, 75 or over Male (Caregiver) Published: September 03

My father is 84 and has stage 4 CKD (chronic kidney disease). Tomorrow we go to the doctor for his 3 month checkup. I am afraid we might have to make a decision to prepare for dialysis treatment. He has anemia, hemoglobin is 9.1.

Comment from: Simom Dog, 55-64 Male (Patient) Published: March 31

Home hemodialysis can be done safely and, for the right patient, can vastly improve quality of life. There are also studies that suggest that home hemodialysis done on a more frequent basis may prolong life. The person who said it is dangerous may have just had a bad experience, but that is not typical if you have the proper support and training.

Published: May 02

I am just devastated. My mum has been on dialysis for four years now. She was on Hi I am just devastated-my mum was on dialysis for four years now. She was on hemodialysis for three years, and eventually after numerous catheter infections – her veins became very weak for any further catheter insertions – she went on to peritoneal dialysis. We live in South Africa, and the only option we were given were four bags, four times a day. She hated it, as the liquids were 2 liters at a time just sitting in your tummy. She put up with it for a year and then she had a protein deficiency, which led to continuous diarrhea and vomiting. It got so bad that she refused to eat – and she eventually died of severe dehydration three weeks ago. It's absolutely devastating, because through it all we were with her every step of the way. I still feel that we could have done more.

Comment from: Wizard, 75 or over Female (Patient) Published: March 18

We need your input. We would like to hear from elderly patients who are on dialysis. Our mother is 77 years old and is in stage 4 kidney failure. She needs to make a decision as far as which dialysis treatment is best for her: hemodialysis or peritoneal. Can someone please share the pros and cons of both?

Comment from: Wickliff57, 55-64 Female (Patient) Published: August 27

I have been on dialysis for three years now. It is really not that bad, except that I am freezing all the time. My circulation is lousy. I have a lot of trouble with the fluid restrictions, but I'm working on getting better.

Comment from: Cowboy, 19-24 Male (Caregiver) Published: January 03

My grandpa is a cancer survivor. They removed his bladder, prostate, ureter tubes and left kidney in 2004. He is now 75 years old and his kidney is at 20% function. They want him to start dialysis ASAP, but he doesn't want to. He said he's had enough pain and surgery. This man rescued me from my drug-addicted mother when I was 12, and now he is my best friend. I will lose him soon. Please try everything in your power to get your friend or family member to fight on, and never give up.

Comment from: Guiedo41, 35-44 Male (Patient) Published: August 10

For the past 10 years, I have been dealing with kidney disease. This past June, they failed, and I had to begin dialysis. So far, it has been a very positive experience. I feel better than I have in a long while. I really watch my diet and fluid intake, although I do not retain fluid. Something else I do is exercise; this probably helps maintain my fluid balance and keeps me feeling energetic. I try to do at least 30 minutes of cardio with about 15 minutes of light resistance training every other day at a minimum, sometimes more often. I am working on a transplant. My brother is a match, so hopefully the transplant happens next month.

Comment from: Diane, 55-64 Female (Patient) Published: May 17

I've been on peritoneal dialysis for almost three years. My initial experience was not great; I had an infection at the site of the catheter insertion that developed while I was still bandaged and had several bouts of peritonitis over the next few months. However, once that was resolved, I have been free to continue to work, to travel, and to spend time with friends. I use the cycler overnight -- two large bags of fluid -- and supplement with a manual exchange with a smaller bag during the early evening as required. I find that you just have to get your mind right; that this dialysis thing is what you need to do to live.

Comment from: Nugget, 65-74 Female (Patient) Published: April 23

I am 68 years old and have been on dialysis for nine weeks. I drive myself to the center. I go Mondays, Wednesdays, and Fridays from 2:30 to 6:30 p.m. Because my Kt/V was great, my dialysis is cut 15 minutes each session. Yay! I listen to audio books, read, watch TV. The nurses and techs are very nice. I have met some nice people -- the patients and their families. They talk about how they have adjusted to renal failure and dialysis. I write a Blog about the Big D to my friends every three to four weeks. It makes it real. The best thing is that when it's over, the next day I feel great.

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Comment from: MissPaiute, 35-44 Female (Patient) Published: March 16

I started dialysis two months ago. At first, I was very ill since December 2008 with vomiting and diarrhea. I have a catheter still, which I have had to have replaced three times because it didn't work. As of today, I am feeling much better and have more energy. Now I want to get out of the house, whereas before, all I wanted to do was stay in bed. I just hate having to go to dialysis three times a week for three hours each time as it is a pain in the butt. But I make myself go as I know it is helping me feel better.

Comment from: Morris, Male (Caregiver) Published: March 29

My grandmother is 60 years old. Very young to be in a situation like this. She at the age of 59 had her leg amputated due to diabetes infection. My family just went to test themselves for a match to donate a kidney, sad story is the doctors told my grandmother she wasn't strong enough to accept one. They are going to try one more insertion for dialysis in her arm, but if that doesn't work out, I'm going to lose my closest most precious grandmother.

Comment from: Marty, 25-34 Female (Caregiver) Published: November 15

My daughter passed away March 9, 2008 and she was 31 years of age. I watched her suffer for 4 years. I guess it a blessing that she is not suffering anymore, but on the other hand I very much wish she was here, because I miss her so much. I don't wish kidney failure on anyone. If anyone starts to feel the symptoms please go to the doctor and have it taken care of before it gets so bad that there is only time and death to look forward to.

Comment from: Amy1962, 45-54 Female (Patient) Published: September 22

I have been on dialysis since July 22nd. I go 3 times per week, 4 hours each time. I also work full time. I have had kidney problems since 2002 and lost my left leg in 2005. I am a type 2 diabetic. It can be depressing but I get up saying tomorrow is a new day. I feel really good and I am over 20 lbs lighter. I am looking into a kidney transplant and my son maybe a donor. I try to be positive. That is the only way I get through it.

Comment from: alan, 55-64 Male (Patient) Published: July 14

I am renal dialysis and I do hemodialysis at home every night for the last 2 years, usually 4 to 5 hours. I cannot get my fluid off and the nephrologist tells me to challenge myself take off more. Well I have severe cramping and mainly in my arms and hand but a lot of times anywhere on my body. I have developed severe breathing problem now and have to have oxygen 24 hours, the doctors act like it is my weight, but I think it has to do with the dialysis.

Comment from: Glenn M., 55-64 Male (Patient) Published: April 05

I was on hemodialysis for 11 1/2 years. Yes, those numbers are correct. During that time, my liver began to fail, and I went on the list to get both transplants. In 2007, at age 58, I received both organs from a cadaver at USC University and could not be happier with the outcome. I didn't find dialysis too difficult after I realized it was dialysis or the end of my life. It is amazing what the body can endure. I now lead a normal life and am happily retired.

Comment from: Able, 75 or over Male (Patient) Published: March 30

I am 76 years young I have been a diabetic for ten or more years. I recently lost my youngest son to throat cancer and as a result I worked excessively hard to start a yard sale for my daughters-inlaw. During this time my urine became very yellow. I wonder if my kidneys are starting to fail.

Comment from: princessg, 45-54 Female (Patient) Published: January 25

I have been on dialysis for 1-1/2 years and I didn't know that I had kidney problems and being on dialysis is still a problem. It hurts to be stuck 3 times a week but I know that I have to have it and I try to make the best of it to live. The way that I get through the day is thinking that somebody is worse off than I and it's rough but we just have to hang in there. I got depressed and on the days of treatments I just went to bed because I felt like this is all I have to look forward to, but I know that life is better than this. You have to get up and go to treatment whether you feel like it or not, but I go to a good center and the staff is really nice and the patients are nice too and that helps the 4 hours go by fast.

Comment from: Devastated, 55-64 Female (Caregiver) Published: January 15

My sister (61) was on dialysis for 3 years. She passed away last October suddenly. From the report she was coughing and having trouble breathing. By the time I arrived at her hose she was gone. I thought she was doing fine. She went to dialysis on Friday as usual and passed about 3:30am Monday. She went 3 times a week Monday, Wednesday and Friday. I am devastated.

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Comment from: Connie, 65-74 Female (Patient) Published: December 01

I have end stage renal disease and on dialysis for two years. The nephrologists have had a very diffuicult time determining the amount of fluid to remove at each dialysis. They use two main criteria to determine the amount of fluid to remove - my weight and listening to my lungs. This has not worked effectively. I have been in the hospital multiple times for heart and respiratory problems and each time they treat me with strong doses of antibiodics and remove fluid through dialysis treatments. During the most recent hospital stay, they determined that I had fluid in the plueral space. They removed 750cc's and during the procedure they punctured a blood vessel requiring transfusions and admittance to the CCU for 8 days. My problem is why they cannot determine appropriate fluid removal levels for each dialysis treatment. Sometimes they remove so much fluid that I cramp and m blood pressure levels really drop. Then they add fluid back but I still have the problems with oxygen levels and respiratory problems. Another question I have is will normal dialysis remove fluid from the plueral space? I have end stage renal disease and on dialysis for two years. The nephrologists have had a very difficult time determining the amount of fluid to remove at each dialysis. They use two main criteria to determine the amount of fluid to remove - my weight and listening to my lungs. This has not worked effectively. I have been in the hospital multiple times for heart and respiratory problems and each time they treat me with strong doses of antibiotics and remove fluid through dialysis treatments. During the most recent hospital stay, they determined that I had fluid in the pleural space. They removed 750cc's and during the procedure they punctured a blood vessel requiring transfusions and admittance to the CCU for 8 days. My problem is why they cannot determine appropriate fluid removal levels for each dialysis treatment. Sometimes they remove so much fluid that I cramp and my blood pressure levels really drop. Then they add fluid back, but I still have the problems with oxygen levels and respiratory problems.

Comment from: 55-64 Female (Patient) Published: November 16

There are days that I feel no better than when I went in. My shunt is puffing out and that makes me feel like there is something that is not working in the cleaning of my blood. Doubt is the biggest worry I have. You can't feel good when there is a doubt in your mind about your treatment.

Comment from: boogs73, 55-64 Male (Patient) Published: August 17

I have been on dialysis for a year and a half it sure is a life changer. The only thing I have to do is watch what I drink. The more fluids they take off the more strain it is on the heart. That is the hard part. I am on the machine for 4 hours which is difficult to handle sometimes, but you have to do it. I bring my Ipod, or watch TV. I don't recommend it. It really sucks.

Comment from: 25-34 Female (Patient) Published: July 01

I just turned 32. I started dialysis in February. I did not know I had that problem. The day I found out it turned my life completely around. I was so scared, but you have to do what you have to do. I have to live my life for my kids. I do hate going 3 x's a week for 3 hours, but I know it will make me feel better.

Comment from: Cookiewoman, 55-64 Female (Patient) Published: July 01

I've been on dialysis just over a year now. I was being evaluated for a kidney transplant and on the CT scan they found that I had renal cell carcinoma (I'd had that before in both kidneys) and in March the doctors did a radical nephrectomy. So now I have to be cancer free for a year. The only problem I have with dialysis is being cold. They had adjusted the temp of the blood flow and I'm still cold. I dress like I'm going to the north pole when I go to treatment.

Comment from: sra113, 55-64 Female (Patient) Published: September 07

I am 59 years old and in the final stages of kidney failure due to kidney disease PKD. I am terrified of dialysis or transplant and have decided that I would rather die than do either of these. I have a paralyzing fear of needles and medical procedures. I expect to have maybe 2 to 3 years left.

Comment from: Kashout, 45-54 Male (Caregiver) Published: July 26

My father is 51 years old and just got out of surgery. He's strong and just got hooked up to the dialysis machine. He's tired but smiling. I am scared and hope for the best.

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