My doctor has told me that I’ll probably need to start dialysis by the end of the year. I work full-time. My friends and family tell me to take disability. I get tired, but my boss has been understanding and so far I’ve been able to work most days. Should I quit working and take disability or would I be able to work on home hemodialysis?
Mike there are many people who work and do hemodialysis. I started working through the carpenters union after being on dialysis for four years. That was 1995. Today I have worked my way up to a fully qualified journeyman and enjoy the insurance benifits that come with a union job. I would do all I could to keep a job. There are a number of emotional benifits but insurance may be the biggest reason.
For instance Medicare does not pay for dialysis abroad, however my insurance through the union will reimburse me for expenses related to dialysis that are not covered by Medicare. I just returned from Europe where I received 6 treatments that I payed for out of pocket - I expect I will have a reimbursement check within two weeks from my union.
Home dialysis - PD or Hemo - is an excellant way to keep flexability in your life and will make it easier to keep working. It is incredable to me but the fact is fewer than 20% of the dialysis units in the United States have evening shifts, without which keeping a 9-5 job is very difficult. If you can keep working or take a short leave while things sort out then I think that would be by far the best course of action.
The tierdness may go away if you are able to dialyze more frequently. Are you currently on EPO?
Thanks for telling me about yourself and your experience with dialysis. It makes me feel more hopeful. My blood count was down and my doctor just started giving me EPO. He told me that it will help the way I feel. I look forward to that. I’d been feeling like all I do is go to work and drag home to be a couch potato.
You hear everywhere that exercise is good. No one has talked with me about exercise. Should I be exercising? Should I avoid exercise? Suggestions?
Mike I think that exercise should be a part of a person’s life whether they have diminished kidney function or not. The problem as you say is how to get out and exercise when you have no energy. It is an act of faith but my experience is that the more I exercise the more energy I have, in fact it can help create an upward spiral - you exercise, then eat better, then sleep better, then have more energy to do it all over again. Before starting an exercise program you should always speak with your doctor first but I think sometimes the idea of “exercise” can be a bit daunting. What about thinking in terms of movement?
Just get outside and walk around. I have often suggested to people in your situation that they should get a dog because then you will have to get off that couch and go for a walk. You can also borrow a dog. I bet you have a busy neighbor who would appreciate it if you’d walk their pup. I’m lucky that I can bring my dog to work so I stop at the dog park before and after work to walk for about 20 to 30 minutes. That is really enough to make a difference in how you feel. I also know a friend that parks about 20 minutes from her job on most days. She then can stop at her favorite coffee shop and sip some java while walking to the shop. Then after work she has a little quiet time to decompress while she walks back to her car. My advise to anyone is to just make movement a part of their life and always take the stairs.
I have several patients who work and do home hemo. They do both nocturnal and conventional (the same thing you do in the clinic 3 times a week). What you do depends on you and how you feel.
I had patients in the clinic who preferred to do conventional treatments at the clinic 3 times a week after work. They came in at 4pm and ran their treatment and then went home. You do not have to quit your job if you don’t want to. Another option can be found and it does not have to be home dialysis.
I have seen how well home patients do, but I have also seen MANY patients do as well in the clinic because that is what they chose and what they were happiest doing. It all boils down to what do YOU want?
Life Options created a free resource on exercise that you can download. Go to this link:
http://www.lifeoptions.org/combined/materials/indexpa.shtml, and scroll down to the booklet called, “Exercise: A Guide for People on Dialysis.” It’s actually not JUST for people on dialysis–anyone could probably benefit from the suggestions it contains.
If you’re starting a new exercise program, talk to your nephrologist to see if there are any cautions or particular things you should avoid (e.g., people with high PTH levels are at increased risk to rupture the quadriceps tendon, so certain weight machines are not a great idea). Generally, you’d start slow, build up gradually, and keep a record of what you’ve been doing so you can see progress.
I have been on home hemo for 7+ years and I work full time up to 60 hours per week and travel almost every week. I have excellent health insurance and my employer has been highly supportive. Being on a home therapy I set my own schedule, for example treatments on Sunday nights.