Coping with dialysis
Q. I have been in dialysis for a little over a year, going three times a week for treatments. I read, watch TV and sometimes sleep. I know that dialysis is keeping me alive, but I really get depressed when I think this may go on for years until I get a transplant. How did you cope with it?
A. I know just how you feel. I was on dialysis for over six years before getting my transplant. I had many friends offer to donate a kidney and two went through all the testing before they were rejected as candidates, one just five days before transplant surgery was scheduled. The disappointment was crushing. It seemed as if I was trapped in a system that cared for my bodily functions but did nothing for my mental health.
I solved my depression by taking charge of my own treatment. Three years in a dialysis clinic was all I could tolerate. After my last live donor was rejected, I asked to be trained for home hemodialysis. That decision resulted in my changing clinics and doctors, but gave me back my independence and ultimately led to me doing daily dialysis at home which greatly improved my health and outlook. Once I was doing home dialysis, I was back in an environment I could control, I could relax and enjoy on my terms and my schedule. It made a world of difference in my attitude. Dialysis treatments were no longer unpleasant and dreaded, and the disease no longer defined me nor limited my lifestyle. I cover my experience with this change in detail in my book, Becoming Me. I hope your read it and that it helps you. I encourage you to look at all the options. Talk to your doctors, nurses and social workers. Tell them how you feel and insist that they help you find a better way.
Q. I am very serious about doing my own hemodialysis at home but am scared of needles. I can't image putting those large needles in my arm every day. How did you do it?
A. It's really a case of mind over matter. I found that being independent again, doing treatments in the comfort of my home on my own schedule, far outweighed the inconvenience or initial pain of canulating (sticking needles into my fistula) everyday.
I started canulating while I was still in clinic, with a nurse or technician supervising me and helping me gain confidence. After a few months, I discovered it was no longer painful and that I was actually better at sticking myself than the nurses or techs. I got so good at it that I rarely had any blood loss. By the time I was home doing dialysis six days a week, my fistula was so strong that canulating became routine, like giving oneself insulin injections. The size of the needle no longer mattered.
I used the ladder method, where you pick a new spot each treatment. Many people prefer the button hole method, where you reuse the same spots over and over again. That way you can use a blunt point needle. It's is not supposed to hurt as much, but I never liked the idea of having to pick away a scab on a previous needle placement. I felt it was more sanitary and healthy to let a previous wound heal fully.
I also discovered Sureseal Pressure Bandages for sealing the puncture hole when the needle is withdrawn after treatment. They consist of a cellulose sponge pad on an adhesive strip. The adhesive strip surrounds the pad on all four sides, securely sealing the wound site. The pad expands on contact with blood which exerts pressure on the wound site and assists with controlling bleeding. Once the Sureseal was in place (my wife helped me remove the needle and apply the bandage - it's hard to do with only one free hand), I put a folded gauze pad over the bandage and wrapped paper tape over it to add constant pressure. Usually within 10-15 minutes I could remove the gauze and forget about the wound until the next morning, when I removed the Sureseal and the wound had scabbed over. It was much easier than having all that gauze and tape wrapped around my arm and having to apply pressure with my free hand.
Some clinics use Sureseal bandages, but many don't because they are more expensive than gauze and tape. I found them on the web from www.metromedicalonline.com They cost less than 20 cents a bandage and were worth the cost because of the convenience they provided. I recommend them highly.
Of course, daily hemodialysis improved my health tremendously. I had more energy and could work every day. I no longer had any down periods as I had when I went to the clinic three days a week. And I could eat many more foods high in potassium since I was dialyzing more often.