New and Overwhelmed!

I have had kidney disease for several years. My creatnine level is currently 4.2. At one point in time my creatnine level rose to 5.8. My doctor has mentioned the possibility of dialysis becoming necessary in the near future. I’m feeling overwhelmed and frightened and totally uneducation and unprepared. All these terms are an enigma to me. I’m reading and trying to learn on my own as I’m not getting much education from my busy physician. I travel statewide on my job and have been concerend that, if I have to be on dialysis, I may be unable to continue to my job. When I started reading about home dialysis and the possibility of “portable equipment” I felt a little more encouraged.

Your website and discussion boards are excellent, but a little too advanced for me right now. Where can I get some “basic education”. For example, I’d like to know how each of the 5 types of home dialysis are accomplished, what equipment is used in each, etc.

Any advice, assistance, and encouragement is appreciated.

Besides the main website for these discussion boards at:


there is also a sister site called kidney school. Here is the link:
http://kidneyschool.org/

Take some time to go through all the modules of kidney school - it’ll take a few days - as you go through it write down any questions you have. Usuaaly your questions will be answered as you go through the modules but if not then I am sure your doctor could answer them or the people here could give you some input.

When you discribed your job my first thought was that PD would be right for you. Have you talked to your Doc about PD?

Right on this site, at http://www.homedialysis.org/v1/types/, you can find downloadable sections on each of the types of home dialysis–including how you do them, what kind of equipment you need, how long the training is, etc.

Kidney School is also a great idea! You might also consider subscribing to the dialysis_support email list (go to http://www.yahoogroups.com and type in “dialysis_support.” This is a great group of folks at all stages of kidney disease, doing all different types of dialysis (or transplant). Check it out!

the fear of dialysis is much worse than the reality.
ask your doctor to refer you to a clinic where they can give you an overview of all the different types.
everyone is different and what works for one may not be the best for someone else. education is your best bet.
many centers will orient you in what is available for you.

Hi Joan, When my creatinine got to around 4 my nephrologist sent me to a class that explained all the different kinds of treatments. Your nephrologist should be able to help you with this much more then a primary care physican. Also, for all the latest news in the dialysis world coming to the net is the very best. Hope this helps.

Hi Joan,
I would like to second that you should ask your doctor about classes in your area that could help you understand more about kidney failure, treatments, diet, and how to cope and pay for kidney disease, I am a social worker and have worked with many, many people who started dialysis feeling very frightened. In addition to working with the Home Dialysis Central team, I help to coordinate education classes for people approaching the need for treatment for kidney failure. I wish doctors referred more patients because those that attend know significantly more on post-tests than they knew on the pre-test we give them and equally as important, they feel better emotionally. Some of our patient speakers have told the group that they wish they could have attended a class like ours but they didn’t know they existed.

Besides attending a class, ask your doctor if you could talk with the social worker that works with his/her patients in the dialysis clinic. I worked for many, many years in dialysis and wished I could have met more patients prior to their starting dialysis so I could have talked with them about their fears and helped ease them. Like you, many people want to know how their kidney failure will affect other aspects of their lives besides their health and emotions. They worry about the effect on their family, whether they’ll be able to keep their job, whether they’ll be able to afford their care, etc. I could answer many of their questions, but it often helped more to have them talk with dialysis and transplant patients who had lived the experience. That is one of the greatest things about support groups (online or in-person) and message boards like this one. Good luck!