Hello Beth
My wife has basically has no kidneys i don’t have to go into detail you know hoe it works but it is now having a massive impact on her life, before we would go out on hiking trips to icy Scotland and vacations to Spain etc, but now she has to go and see the doctor every 3 days this limits the things she is able to do massively.
Due to the lack of activities for her to do and the massive effect it is having on her life she has started researching dialysis going beyond crazy, the other day she brought 10 different books from dialysis books for sale sites to the point of they will all pretty much say the same thing. The problem is ( i think ) is boredom and i feel helpless to do anything for her.
So the main question is what can i do to help her? is there anyway in the world that i can slowly pull her away from going dialysis crazy?? Any help would be greatly appreciated!
Thanks in advance
You don’t say where you and your wife live, but one thing I’d suggest is that you and your wife learn more about options for treatment. You can read about the two main home dialysis options – peritoneal dialysis and home hemodialysis – from the main page on the Home Dialysis Central site. There is an an online tool that helps people review how different treatments “fit” with your active lifestyle. Since it’s obvious you enjoy traveling, peritoneal dialysis and home hemodialysis (if the machine is portable) allow travel much easier than doing hemodialysis in a clinic 3 days a week. Check out My Life, My Dialysis Choice site at http://mydialysischoice.org/.
If she doesn’t already have it, a book written by Dori Schatell, who is the executive director of Medical Education Institute that set up this site and a nephrologist from Australia, John Agar, MD, called Help! I Need Dialysis provides helpful information about kidney disease, treatment options, including how to fit dialysis into your lifestyle, rather than fitting your lifestyle around dialysis. You can order it from Medical Education Institute here - http://lifeoptions.org/help_book or it’s available on Amazon.com in print or Kindle edition.
You and your wife might also enjoy reading and posting to the Home Dialysis Central Facebook page. It’s a closed and moderated social media site where people on home dialysis (or considering it) and their home dialysis care partners give and receive support. https://www.facebook.com/groups/HomeDialysisCentral/
Another treatment option for kidney failure is transplant. In the US, people can get a transplant when their kidney function is 20% or less. Kidneys for transplants can come from living donors (not necessarily relatives) or people who died and made their wishes to donate known before their death or whose families agreed to donate their organs. I’d suggest she learn more about this option and find out if she’s a candidate. Although transplant isn’t a cure and there are pros and cons to transplant, having a kidney transplant often allows the most active lifestyle.
Finally, your wife needs to make sure that her doctor and staff at the dialysis clinic know that she wants and needs as much information as she can get. Learning all you can about kidney disease and treatment, asking as many questions as you need to ask to get the information you need, and taking an active role in treatment and treatment decisions have been shown to help people do better and live longer.
Thank you so much for replying on her next visit to the doctor i will go with her and ask some questions myself throw the ball out there. As for the link they are really good i have joined the Facebook group later i will going to get the Sandra (my wife) with me and go through the My Dialysis Choice site form and see where it goes,on by looks of the layout of the site it will lead to answers.
I really appreciate your reply and the answers you have given Sandra will have a read through this later as well the support is amazing!!
Thanks again Beth