Share your (home) dialysis expereinces

I am writing a book on ESRD for patients. I am a PD pateint, and i feel that there is not enough being said about dialysis and its options. It seems as though there are so many people who are on in-center hemo dialysis because they do not know of the other options or have never talked to anyone else who is doing another form of dialysis.
I was wondering if any of you would be willing to share your experiences as a home hemo patient. I even took the time to answer the questions that applied to me as a PD patient.

		Life on Dialysis and Your Options

I decided to go through with this project to try to educate people. My goal is to get the word out there to those on dialysis and those not yet diagnosed with kidney disease. Many people have heard of dialysis, but are really not sure what it is, or have many misconceptions of it, therefore denying or delaying treatment, resulting in further irreversible damage. Many people fear or refuse to acknowledge their potential future of needing dialysis. There are many people who do not know that they may have to go on dialysis in some point of their life. A lot of these people are those who have high blood pressure and/or diabetes at the moment. As high blood pressure rises, as well as diabetes, kidney disease will become even more common. Many, Many people are in the dark when it comes to this disease. I feel as though there is not enough information or education out there on kidney disease. I also want to get the word out in hopes that people who do have high blood pressure and or diabetes will do their part in trying to prevent or delaying dialysis.
I want to reach out to those on dialysis and let them know that there are other options. Kidney disease is becoming more and more common, especially with young people, and I myself am young with kidney disease. Even though it’s common now, you still do not hear about it, like you would cancer. Very few of us kidney patients are lucky enough to know neighbors, friends, or family who have had to go through kidney failure, that we can just go to when we have questions.
I hope you are willing to share your story so that you can reach out to someone else. Remember what it was like for you when you were told of your diagnosis of kidney failure. Know that you are not alone and there are many others who have felt the same way that you do. Know that through sharing your story or by answering just one question, that you may have reached out to someone who is feeling the same way that you did when you were first diagnosed. Or maybe they can relate their experiences or diagnosis to you.
I have already made an example by answering some of the questions myself. Hopefully my answers might inspire you to answer one or more question(s) and share some of your experiences and thoughts from another patient’s perspective.
The whole point of my doing this project is to help others on dialysis as well as to reach out to them. Dealing with end stage kidney disease is very difficult, and may seem like you are the only person going through it, or at least you do not know of very many people who are actually going through the same thing. Many people on dialysis feel as though that hemo or their chosen modality is the only choice that they have. I want to see other kidney disease patients learn as much as they can about their disease as well as their options. I feel that patients who learn as much as they can are better advocates of their situation and illness, in turn feel better about themselves, and have a better outcome and don’t feel like so much of a victim.
I have also come to realize that many patients on dialysis do not have a computer and do not know there are resources out there to help them, this can make a person feel even more alone, this limits their ability of being able to hear other patient’s stories’. I really want to put together a book to help others realize what it is like from another patient’s point of view. I want to do whatever I can to reach out to other patients and educate them as much as possible.
As a fellow patient, I only ask that you fill out the questions that you WANT TO ANSWER. Do not answer more then you want to. By answering one or more question(s), I do ask that you provide your age, and your occupation if employed. If it would make you feel more comfortable, as well as to respect your privacy, I do also ask that you give a false name. I would like you to provide your age so that other people your age will see that they are not alone, as well as your occupation. If someone has the same occupation as you, then they can see that they too can work or do what they are doing while on dialysis.
If you feel comfortable, you can add a picture of yourself, or yourself doing dialysis, or whatever you feel comfortable with. However I do ask that you take no more than 30 days from the time that I give you this questionnaire to answer the question(s).
You can reach me if you like, you can e-mail me, or you can mail them to my home address to 2540 Carson Detroit, Mi 48209. You can call me If you like and I can verbally give you the questions over the phone at 313-622-1379, or if you are in the metro Detroit area I can meet you in person somewhere.

(By answering 1 or more questions I do ask that you leave at least your age and sex)
Name (Please use false name)/sex:
My answer: -Lisa/female
Your answer:

My answer: -I am 26
Your answer:

-Occupation: (unemployed, retired, student, homemaker, etc.):
My answer: single mom, dialysis patient
Your answer:
-What caused your kidneys to fail?-“My answer: Well for me, I was diagnosed with lupus, which is an autoimmune disease that causes your body to attack itself, and it attacked my kidneys.”
Lisa, 26, single mom
-your answer:

-When you learned of your disease, were you educated on your options such as the different types of dialysis or transplantation (Cadaver or living donor)?
-“Yes I was, and I am listed on the kidney transplant list, and have been on it for close to two years”.
Lisa, 26, single mom
-your answer:

-(how long have you been on dialysis or your chosen modality?) and why?
(e.i. Hemo dialysis, peritoneal dialysis, transplantation)
-“A year and 4 months. I started October 2007”.
Lisa, 26, single mom

  • “(I personally have been on hemo for a month in 2008 to recover from surgery and at the moment I am on hemo recovering from another surgery.) It is only 3 days a week.”
    Lisa 26, single mom

-Stories (this is where you can give your story) –Lets hear of your story of how you got diagnosed, any complications, or specifically what has your experience been like.
“Ever since starting, I have had to deal with two hernia surgeries. Apparently I am prone to hernias, which does come from having a previous pregnancy, and carrying around fluid. Now I really do not mind going through surgery. It may seem tedious but I try to look on the bright side. I get a break from PD.
When I was 16 I was diagnosed with lupus. Lupus may have been in remission since then, however it has left a lot of scar tissue, and I knew that I would eventually face dialysis, but was not sure when. It took me 8 years to need dialysis. When I first knew I would need dialysis really soon, I was a patient at the University of Michigan in Ann Arbor, Michigan. I was in complete denial first. They called me, and I was like “I’m not doing it; there is nothing wrong with me”. The thing is I remember not wanting to do either dialysis! I really don’t like needles, and the other alternative, to me was an ugly catheter in my belly. So, I was dead set against getting either access. At University of Michigan they were even willing to list me on the kidney transplant list before I started dialysis, but that was provided that I get a fistula in my arm, since at the time I said hemo just get my nephrologist off my back.
Well months later, I got my mother’s insurance, and since I was enrolled in college at the time. Since University of Michigan did not take my new insurance, I had to start the process all over again at Henry Ford Hospital in Detroit. I still was in denial. In October of 2006 I saw the nephrologist I saw on my college breaks. He told me he was not going to do anything at the time. Well at the time my creatinine level was 4.0. So I took that information and ran. I stayed busy with a baby at home, commuting 45 minutes several times a week to school. When I had an appointment, I blew it off. I didn’t go back to see my nephrologist until the summer of 2007. He did labs and called me and said my creatinine level was 5.5 and that I was in need of dialysis right away. I said I wanted to do P.D.
An appointment was scheduled to see Dr. Strand for placement of my catheter. In August of 2007, I had my surgery to place my Peritoneal Dialysis catheter. In September, the tip of my catheter was found in my chest instead of my pelvic region. So, back to surgery I go. (This rarely happens, 1 week before I went to the Michigan State Fair and went on a ride that kept me upside down). They had to stricture my catheter in my pelvic region to ensure that it won’t move again. I had this surgery in September of 2007. I had to stay in the hospital to dialyze because my potassium was too high, even though I hadn’t started my training to do it myself. I was scheduled to learn how to dialyze at home the first week of October.
Well I wasn’t happy where I was at, so I decided to switch doctors, by complaining to the department head of where I was at. So the next place I went to was the Detroit Medical Center. This was a good choice for me. I totally love and get along with the medical staff at both the P.D. clinic and the hemo clinic. Without the staff I probably would not be where I am at. A month later after Christmas, I was trained on how to use the cycler. I was only able to use the cycler for a week before I went to surgery to fix my umbilical hernia, from the P.D. I then got a perm catheter inserted in my neck/chest for my hemodialysis access. I went to hemo dialysis thrice a week for about three weeks. Afterwards I was still then able to drive 45 minutes to school. At this time I was still taking classes. While I was in the chair, I got my homework done!
After three weeks, I went back to P.D. Months later out. I had to go to the hospital in Florida, so they could unclog my catheter. A month later I ended up with Parinitious, yet again. I had a cloudy bag. I was then started on antibiotics, and I had to back to the clinic many times for more antibiotics and I had to stop the cycler and was on manuals until the infection cleared up. I got this infection by injecting heprin into a bog on my machine, while holding the bag I stuck myself with the needle, and continued on as though it didn’t happen. Never do that!
A month after that, I was in so much pain I could barely stand up. I had to call an ambulance to take me to the hospital. I didn’t see a cloudy bag, so I didn’t think it was another infection. I thought It was my second hernia having a problem. (yeah, after I got the first hernia fixed, out popped another one). Everything came back negative from labs they did take in the ER. I was released so the next day was when I saw the cloudy bag. I was rather upset. That cloudy bag was not a full fledge infection. The labs could tell there was something there, but not a typical pernitious. They decided to treat me as though it was a typical pernitiiious, since I was due to go to Sicily in just a few short weeks.
I ended up with another hernia. Not just in the belly button, but also in the goin area. The one in the goin area was actually painful, so I wanted it fixed. I was graduating this year, and I wanted to wait until the new year. Which I did, in the first of the year, I got the two hernias fixed and was back on hemo for another 6 weeks.
Lisa, 26, single mom

For those on Hemo dialysis:-
What is good about the hemo you are on? (in-center hemo, nocturnal hemo, or one of the home-hemo. Specify home or in-center nocturnal home hemo)

-If on hemo dialysis what do you do to pass the time?

-How have you adjusted to the needle stick?

-Any advice for those people thinking about hemodialysis?-“Treatment is -only 3 days a week for in-center hemo, DO NOT MISS A SINGLE TREATMENT! If you have something else going on that day they may be able to work with you and reschedule or do whatever they can so you do not miss a treatment, and you must be compliant”.
Lisa, 26, single mom

-What is good about CAPD or CCPD (for those on P.D.)?
-“P.D. is good because it is on your schedule. You don’t have to go to a center. It is daily and it takes a little bit of fluid off at a time. Best of all you can pretty much eat whatever you want as long as you don’t overdo it. You do have to watch your phosphorus like you would on hemo. However, the diet is a lot less restrictive then being on hemo. You do not have as much as a fluid or salt restriction, and you have to eat potassium because being on P.D. causes your potassium to become too low. Potassium isn’t as much as a restriction”.
-“I usually do CCPD or, the “cycler” because my whole entire day is free for what I need to do. I am only dialyzing at night when I am sleeping”.
Lisa, 26, single mom

-Advice for people thinking about Peritoneal dialysis? (any mistakes you made while you were on P.D)
-“Always, always wash your hands before an exchange, and you must wear a mask before and after disconnecting”.
Lisa, 26, single mom

(For transplant recipients)
-Was your transplant from a cadaver or a living donor?

-Do you remember what you were doing when you got the call and how did it make you feel? What was your reaction?

-Before a transplant, were you on dialysis? If so, for how long?

  • How long has it been since your transplant?

  • How long did your transplanted kidney last? (For those on dialysis NOW)

  • What are the names of the medications used to prevent rejection, and what are their side effects?
    -What caused your rejection? Was it acute or chronic rejection?

-What did you do to pass the time waiting for your transplant?

-With a transplant, what do you now know about transplants that you didn’t know before? What advice would you give someone waiting for a transplant?

-How did you cope with your diagnosis of ESRD? What is your support network? (medical staff, family, friends, church, etc.
-How has it impacted/affected your friends and family?

-What are some of the steps you have gone through to cope with having to go on dialysis and how have you coped?

  • “At first I was completely in denial thinking that God was going to heal me. I thought he was because in a sense he healed me from lupus. I have been in remission of lupus for nearly ten years, which was when I was first diagnosed. At first, I was very angry. I refused to believe that I was going to need dialysis in the near future. I just didn’t believe that I was sick. I seemed so healthy. Then I wondered “why me”? And, “what did I do wrong to deserve this?” A lot of times now I think to myself “this is my cross to bear. Everyone has their thing and this is mine”. And sometimes I still have to deal with these coping steps. I struggle with accepting reality.”
    Lisa, 26, single mom

-What have you learned from having ESRD(end stage renal disease)?
-“I have really learned that life is precious, and not to take it for granted. You never know when something can be taken away from you until it is too late. I also learned to never procrastinate. You never know what tomorrow might not bring! Live life to the fullest. Dialysis isn’t a death sentence; it is another chance at life. Life is short; take all the opportunities that you can”.
Lisa 26, single mom

  • How has dialysis changed your life?-“I now take every opportunity I can to travel and live life to the fullest. I can’t do everything at the spur of the moment. It is a challenge, but it makes me want to live life to the fullest extent. I was even able to go to Sicily on dialysis”.
    Lisa, 26, single mom

-What advice would you give future dialysis patients?
As a Kidney patient, looking back on your experiences, what would you do differently?(i.e. not miss any treatments, etc.)
-“Don’t wait. Learn as much as you can. Start dialysis as early as you can. You might preserve what kidney function you do have left. It is always worth a try, in the long run. I would make sure I had enough heparin before I leave the state”.
Lisa, 26, single mom

-Any memorable experiences while on dialysis?
-When I was on hemo dialysis last year, there was a woman who refused to sit in her chair because the television did not work. She insisted on waiting on a chair that the television worked. I overheard a tech say to the woman “well you could have been here an hour ago, but you refused to sit in your chair because the tv broke. But you refused to sit in your chair”. Her time was delayed all because she refused to sit in a chair that the tv was broke. That is funny.
-“There was another time on hemo dialysis that her blood pressure was dropping. A tech said, “you’re dropping it like it’s hot”. That is funny to me because there is a song by rapper Snoop Doggy Dog called “Drop it like It’s hot”.
Lisa, 26, single mom

-Words of Encouragement
-“Focus on the things that you can do instead of the things you can’t do. Dialysis is a lifestyle and a major life change, but not a limitation! If there is something that you want to do while you are on dialysis as long as you put your mind to it, it will be achievable”!
Lisa 26, single mom

-Recipes: Give us your favorite dialysis/ kidney friendly recipes
Your answer: (Com’on now the dialysis diet sucks, don’t you have any secret of good protein levels and good phosphorus levels?)

Thank you so very much for answering the questions. I am hoping to reach out to as many people as possible!!

You are very correct, many people are not aware that they do have an option. When I first started Dialysis, I was included in this group. It is by education and self learning that I discovered that I do have a “say so” on how I would be treated. The more I starte learning, the more I realized that I had a voice and should be included in my treatment plan and not just do what someone else thought is best for me. All involved should work together to decide the best availalbe treatment plan based off of the individual.

There is going to be a great Webinar pertaining to this subject. Home Dialysis Central has many resources including webinars by different individuals in the field, usually on a monthly basis on different topics in the dialysis community.

The next one is on Infored Consent and Treatment Options on August 25th 8:00-9:30. Feel free to join and spread the word. You can read more about it on the front page of this site… including Registration.
Feel free to Register and come back after and share your comments on the Webinar.