Kidney Living Voices

Fall 2013 Issue
Peer Advice
Life on dialysis can be challenging at times. What have you learned “along the way” that might help others? What advice would you give someone starting dialysis?
It is very important to keep a positive attitude. By eating properly and limiting your fluid intake, I find it much easier while dialyzing. The less they have to remove the easier it will be on your body.
Posted by: gloria jean
The center you use makes all the difference. I have a perm cath which can easily get infected. The care you receive makes all the difference!
Posted by: Dan Cruz
Never give up. I did peritoneal every night and still worked as an Elementary teacher. I was on it for four months before getting my transplant 8 months ago. Stay positive and ask lots of questions.
Posted by: Nicole O'Neal
My advice is simple. Never give up on the hope of having a kidney transplant someday. While I never needed dialysis, my father and brother were not as fortunate. I learned through their experiences that dialysis was extremely challenging and that caused me to be an even diligent about becoming a more proactive kidney patient. My goal was to slow the progression of my disease and my hope was to avoid dialysis altogether. Through a timely live-donor kidney transplant I succeeded on both levels, and I now have a new found gratitude for life and the human spirit. Even if you are already on dialysis, it’s never too late to consider a transplant if you are still transplant eligible. (If you were told you are not transplant eligible, find out why and what you can do [if anything] to improve your odds someday). You deserve to live the best quality of life possible. Compare the outcomes between dialysis and transplant and you’ll see for yourself that this is a goal worth seeking. I received a preemptive kidney transplant, (a transplant performed before the need for dialysis). I was able to do this through the heroic act of a living, non-related kidney donor. I am now living my best life ever. Find out if you could be transplant eligible and END YOUR WAIT with a living kidney donor. Look into NKF's PEER mentor program and be inspired by others who have walked this path before you. Do not settle for less or simply cope with what you have if you can live a better quality of life. And, if you're reluctant to explore living-donor transplant opportunities, search the web for key phrases like: "how to find a living kidney donor?" or "how to be a more proactive kidney patient," or "new hope for kidney patients." You may be surprised to see what's just a key stroke away.
Posted by: Risa Simon
I have read all of the other responses before writing my own. I have only been on dialysis at a center 3 times a week since 01/21/13, so my experience is relatively short, but I agree with many of the points made by others about taking your medications, especially the binders, watching your fluid intake, taking an active part in your dialysis treatments, asking every question every time you have them, working with a nephrologist you trust and are comfortable with, and knowing that dialysis is allowing you to live your life to the fullest every day.

One thing I would say directly to people who are just starting or about to start dialysis - get the lidocaine cream for use on your access site IMMEDIATELY. Do not suffer through the pain of having the needles inserted without it. I personally think it is bordering on cruel to make new dialysis patients (who may be scared and intimidated to begin with) suffer through the first several treatments/needle insertions without the cream. With it, there is NO PAIN on insertion and the treatments go much more smoothly for you and for the nurses/techs who are working with you.

And, if possible, have an advocate. Someone who is with you when you go for your treatments and can speak up if you are unable - asking questions, getting assistance, letting the treatment center staff know if you have an issue or need something else, to be sure everyone is on the same page regarding your treatments.
Posted by: Deb Wetherell
An emergency entrance into dialysis can be a scary experience. It didn't take long for me to determine that this situation had to managed instead of it managing me. The nurses and techs were phenomenal and I quickly appreciated their significant contributions to my health and well being. I also took time to enlist the support of the Financial Coordinator, the Social Worker, the Front Office Staff and the extraordinary Dietician. Getting registered in the Organ Transplant Program was a top priority. I continued to work for almost four years often teleworking from my dialysis chair. Fortunately for me, I received a kidney transplant after four years of dialysis and that was definitely one of he most scary and exciting times in my life.

In addition to my family, employer, co-workers and friends, the one thing to which I attribute a lot of my success was my pursuit of Physical Therapy (including water therapy) during dialysis and following the transplant. In my opinion, PT helped me immensely, kept me focused with some voluntary structure, kept me feeling good about myself and prepared me physically for the transplant and post transplant. I would encourage every dialysis patient to pursue the benefits of physical and water therapy as part of their health treatment plan if possible. I have now been living with my 'new' kidney for a year and a half now and it has been one of the best times of my life and I appreciate everyone who helped me get to this point.
Posted by: Wayne Brooks
I've been on dialysis for almost 4 years now, and though I was distraught at first, I've come to regard it as a routine treatment that helps me feel healthy. For four hours, three times a week, I sit while a machine cleanses my system. At first I would usually sleep during this time, more out of depression than anything else but now I use the time as an opportunity to catch up on reading, and now because of our facility's free wi-fi, I can bring my tablet and have all kinds of fun online. The bottom line is that I've accepted this process as part of my daily routine and realize that without it I probably wouldn't be around to enjoy life!
Posted by: Jose Sotela
It's too easy to fixate on the inconvenience of dialysis. My best advice is to look at the time outside dialysis rather than the 3 days, 3 to 4 hours each that you spend in dialysis. There are 168 hours in a week and you spend 12-15 of that in dialysis so you spend about 90 percent NOT in dialysis. Dialysis gives us life so we should focus on the life it gives us.
Posted by: DevonTexas
I have learned that dialysis has saved my life. On September 3, 2013 will be my first "anniversary". I'm going to a center close to where I live. I'm on Hemodialysis. I take treatments for four hours Mon, Wed, and Friday.
The first day I went I was very sick, but after several treatments I began to feel so much better. I would tell someone who's starting dialysis that you will find not only kindness, but expertise in the staff who does the treatments. I have found a family there and made many friends. I am grateful to God for dialysis and allowing me to live longer.
Posted by: Camilla Dawson
You can work and do dialysis! People say you can't do dialysis and work at the same time, I work a full time job and a part time job and do my dialysis 3 times a week after work
Posted by: kevin lewis
Having ESRD is a FULL TIME JOB. It helps to view it that way. Not only is there time on a machine (3 times a weeek) and set up and post clotting, but there's a lot of time learning. Learn to take care of your access (and how) and what foods have which minerals and which you need more of/less of and which combinations work best. And that's on TOP of what one does to live their life. An extra full time job can be exhausting!
Posted by: Brian J Cormier
I began dialysis at age 28. I was scared, angry, and depressed. Now 4 years later, I've learned that dialysis isn't a death sentence unless you want it to be. It allows me to live longer to be with my son.Its not always easy but you must tell yourself that "it could always be much worst."
Posted by: Tamika Smallwood
Become proactive in regards to your health. Learn all you can about your treatment options and what all the terms are for lab work and what they mean to your health. Don't be hesitant to speak up if something doesn't seem or feel right. You know your body better than anyone. Be compliant with your diet and fluid intake and your treatment will be easier on you. And remember, there are no stupid questions so ask, ask ask.
Posted by: Michael Scott
My advice to others who are starting Dialysis is Take one day at the time, get plenty of rest, watch your fluids and food intake. Being on dialysis has taught me to see that life is PRECIOUS,FRAGILE and WORTH LIVING. I been living with End Stage Renal Deceased for the past 31 years. I am thankful to have availabe this treatment that gives me the oppotunity to keep alive so I can spend time with my Family.
Posted by: Elizabeth Kemble
Listen to your Dialysis Coordinator, Always ask questions, Never Assume.. Build a good communication relationship with your Doctor, for he is there till the end.
Posted by: Marla Hoxie
I was on dialysis for a little over one year before receiving my new kidney. I did PD and continued to work full time as a RN in a hospital. I would tell anyone to educate yourself with all your options and remain positive. Also, continue to work or do something fullfilling in your life.
Posted by: Vanessa Williams
When your life is punctuated by medical management, you have a choice. Hope or despair? We all face this choice and the answer is simple. Grip onto hope, endure the lows, and celebrate the highs. And despite it all—live happy.
Posted by: Jennifer
My personal advice would be to listen to your Nephrologist. Do NOT overload on liquids and drink the recommended amount of 32 ozs a day. Take your binders and any other medications prescribed to you. You will have hard times but try and exercise and live a productive life. Stay away from foods that are high in potassium and phosphorus. Do your full time and go to dialysis on your scheduled visit. Do not skip a visit. If you're going on vacation, make sure you have a center in place before you make your plans. And most of all, remember the nurses and dialysis technicians are there to help you so if there's a problem, make sure you speak up.
Posted by: Sandra Glasper
I won't say it id easy , because it is not.it is very time consuming and restrictive, especially the fluids.It becomes a big part of your life(mine takes up 10-1/2 hours od actual dialysis time plus waiting before and after).But unfortunately we have no choice so we have to do it and try and cope with it.
Posted by: John Niemczyk
I have been on dailysis for 3 months now. I do the in center 3 days a week. I have learned its extremely important to limit your fluids to 32 oz a day and to take your meds. Ever since I have started dialysis, I experience exhaustion like I have never experienced before day in and day out. Im starting to realize to get as much sleep as possible since dialysis is so draining on the body. I expect to have a transplant in the very near future so im excited about that. Im looking forward to getting back to the way i was before i started dialysis.Hope this helps.
Posted by: Jeremy J
My boyfriend is 22 yrs and started pd 3 weeks ago the best advice I can give anyone is to be like him he has not let this bring him down he is always in high spirits loves to travel and that keeps him busy and he also likes to go fishing but most of all he has the most positive attitude so stay positive keep laughing because life isn't what your given it's what you make of it.
Posted by: daisy belman
I myself was'nt a dialysis patient,bui my wife was on dialysis for 18 years and the best advise i can give you is to never skip treatments. You may feel like missing treatments at times,I know that what you are going through is hard on you,but when you skip treatments even once a month it will take a greater toll on your body than you can imagine. Missing treatments will mess up your labs,build up toxins on your brain,affect your blood pressure,cause you to have to be put on different meds that affect your body in ways that you dont want. Dialysis is already hard on your body. Don't make it even worse on on your health. Please listen to your doctors and nurses and follow your diet and take your meds. Remember dialysis is keeping you alive so that you can live your life to the fullest and be with the people you love that need you in their lives. So please no matter how bad you feel some days never skip your treatments. Take it from someone who knows that if you start skipping treatments you will be missed by those who love you the most.Don't become a memory stay on track!
Posted by: John Richards
The best decision I made with my loved one on dialysis was to train to do hemodialysis at home. Although it was very intimidating at first the rewards are well worth it. Our lives no longer revolve around the treatment center's schedule. Always remember to put yourself first!
Posted by: Deidre Callahan
Your health and quality of life is up to you. Learn all you can and communicate with your doctors and nurses. You will get depressed occasionally and it is Ok. You will find that after abit you look at it like brushing your teeth it is necessary to be healthy. I feel so much better now that my body is clean inside. Listen to your body it will tell you what is needed.
Posted by: lisa
Although life on dialysis is challenging, I believe somethings in life are not worth it without a challenge. The best advice I can give is remember germs are everywhere, take your meds as perscibed everyday. What worked for me was to look at my kidney disease as a determined life style change. That's all. Easy. Keep a postive attitude and focus on what is important to you. Your health is the most important. If you don't have your health in check, you will miss out on all the good things. Make your life matter; cause it does.
Posted by: Paige Michael
As a home dialysis patient for 5 years, I have learned that each day is the one you must live in. Just get through the dialysis treatment for that one day and it will make it a lot easier than thinking about tomorrow. Tomorrow will always bring us into a state of fear, dread and the ability to ruin today. 8 days ago, I had open heart surgery to replace my aeortic valve due to a blood infection. Life is quite challenging now and I need to go back to the center for a month to receive antibiotics with my treatments. Although I am not as happy in center, I realize it is a nice break from my routine and it is nice to see all my friends and workers at the center. Dialysis is hard enough but when you add another illness to it, it almost seems too much. Tomorrow I will complete my first week at the center, 3 more to go then back home again. Enjoy the day today and let your heart be comforted that we have centers to help us through everything. I am very grateful for the caretakers who keep pushing me forward. Stay strong!
Posted by: Francine Hillpot
Pay attention. Learn all you can. There are multiple sources to turn to, the most important being the doctor, nurses and techs. Take an active part in your treatment. The more you are involved you are, the better off you will be.
Posted by: Kevin Sumner
I HAVE BEEN ON DIALYSIS NOW FOR 36 YEARS. IN THAT TIME, I HAVE LEARNED THAT NO MATTER WHAT I HAD TO FACE. DO NOT GIVE UP. STAY FOCUS ON YOUR GOALS AND DREAMS. THOUGH YOU MAKE BE ON DIALYSIS OR GETTING READY TO START DIALYSIS. JUST REMEMBER YOUR LIFE IS NOT OVER AND THAT THE LORD CAN USE IT FOR HIS GOOD, BECAUSE HE HAS THEN PLANS FOR YOUR LIFE. MY GRANDMOTHER WOULD ALWAYS SAY "TRUST IN THE LORD FOR HE WILL SEE YOU THROUGH ANYTHING." I AM NOT GOING TO SAY THAT IT IS EASY OR GOING TO BE EASY, BECAUSE IT IS A FIGHT FOR YOUR LIFE EACH DAY, BUT AS LONG AS THE LORD WAKES YOU UP EVERY MORNING, GIVE YOU STRENGTH, IN YOUR RIGHT MIND AND YOU IS ABLE TO GO. IT'S ANOTHER OPPORTUNITY FOR HIM TO DO SOMETHING WONDERFUL IN YOUR LIFE, SO GET UP GIVING HIM GLORY AND WATCH WHAT HE DO FOR YOU BY EXPECTING HIM TO DO IT. MOST OF ALL I WANT YOU TO BE ENCOURAGED.
Posted by: Albert Way
1.Dialysis is to give me a life, not to just keep me alive.
2.You need to keep an open communication with your doctor. If you don't feel comfortable with your doctor, find another one.
3.Don't be scared or afraid of the unknown...ask, ask, ask
4.Never feel any question is too stupid...ASK, and expect a truthful answer.
5.Dialysis is NOT a death sentence. Some patients live over 20 years or more on dialysis.
Posted by: Andrea Z.
The best thing I did as a dialysis patient was to never stop learning about dialysis and kidney disease. It's a lot to learn at once, so just try to learn one new thing every week. Talk to other patients in your clinic, read information online, and have conversations with your medical team. You will know better what questions to ask your doctor, what changes to seek in your care, and feel more in charge of your life. You can never have too much knowledge about being on dialysis.
Posted by: Julia H
Being a professional and working with ESRD patients for 40 years I have noted that helpful support is so important for these patients.Obviously if the patient wants to do home hemo or PD the patient does need to be a part of the care plan. Support groups if available are also healthy means to share with others. Keeping in touch with local and national kidney organizations also keeps patients abreast of issues. Keeping one's mind busy and not dwelling with negative thoughts also hinders the care. A feeling of empowerment helps so if the patient can find something that helps them feel better -exercise to increase endorphins, a hobby, which helps adequate sleep at night, and compliant with diet and meds. Having a skilled medical practitioner that the patient feels comfortable with and sharing also important
Posted by: Charlene Ruyle Vollmer
We thank and praise our God that we have another chance at life. We learn to live a different life style. You'll have good days and a few bad ones. You'll learn how to live on dialysis and maintain your life style just a little bit differently.
Posted by: Blondell Pasley
I was on dialysis for almost 4 years before I got a kidney transplant in January. One thing I kept telling my self was that without dialysis my kidneys would shut down. Hope for that transplant to happen was very important. Watch your fluids and take your binders. Dialysis is not the most enjoyable way to spend your life, but it does save your life.
Posted by: Carol Joiner
Keep an eye on your fluid intake and remember to take your meds everyday and try to exercise as often as possible
Posted by: Lorenzo (Larry) DeSantis
Remember that you are in charge of your treatment at all times. Ask questions and don't stop until you are satisfied that you understand the answers. If you feel bad during or after treatment, discuss this with your nurse and nephrologist. They will be able to make changes that will help adjust your treatments so you do not feel washed out afterwards. If at all possible, investigate home treatments (PD or home hemo) so that you can be in charge of your own treatment.
Posted by: anonymous
Just stay positive, I've been on dialysis for 4 years but I know one day I'll get a kidney. Theres always a light at the end of the tunnel.
Posted by: Roger Duque
As the mother of a kidney transplant patient all I can say is STAY POSITIVE! My son was born with abnormally small kidneys that failed when he was 23 years old. He learned to manage his dialysis so well that he would pack all of his supplies for en entire day and take of and go to Disney World . The he would ask for a clean sterile room to do an exchange of fluids and then he would go back out into the park for another 4 hours. He is now 37 years old and will be 13 years post transplant on Sept2.
Posted by: Julia Dawn Mason
Before starting dialysis choose a modality that fits best with your life style. I myself started doing in center Hemo dialysis 3-times a week. I later moved on to Hemo dialysis at home for 5-days per week. I then decided to do peritoneal dialysis. For this modality you need a catheter inserted in your stomach. I found this modality to work best for me. This modality can be self preformed using a cycler over night while you sleep. This gives you the whole day to do what wish. I also found that this modality required less storage space for supplies. Peritoneal dialysis is a 7-day a week modality. Overall I was on dialysis for a little over 2-years before I received my transplant.
Posted by: Keith E. Caro