Starting Dialysis

1-StartingOver the Christmas holiday time both Peter and Armand left comments about their nervousness starting the BigD, Peter for his soon-to-be wife and Armand for himself.

They are not alone. Everyone gets nervous about starting something as dramatic and alien as the BigD: the needles, being a patient, the machine, watching your blood go round and round through the dialysis kidney, the time commitment – it is a big life change.  Also, most people feel very unwell by the time the starts dialysis, so unwell that they can no longer work or play.  Things feel bleak.

But after a few weeks on the BigD, they begin to feel well again – often well enough to start taking their life back.  And once you get used to the routine (which takes about a month), you begin to realise that dialysis itself is no big deal:  you arrive with toxins in your blood, you sit there for three to four hours then you leave with nice clean blood.  Some people like to think of it as a four-hour pee.

So what is the real BigD life change?  It’s the time it takes to make it all happen – usually about 15 hours a week.

When I started, my doctor suggested that I think of the BigD as my second job and to make allowances for getting there each session.  And I worked out pretty quickly that I really have no choice but to be there, it’s not some optional hobby.  So now I think of it as my main job, and I think of family time, my for-pay job, the gym, hobby time, movies, etc, as things I can do because of my main job.

So now that you are joining the BigD club, the question is not How much of my life do I have to forego?  Rather it’s How will I refashion my life around this new BigD “job”?  Because of BigD, you still have a life.  So you can review it: do I want to keep doing what I did before, or is this my chance to reassess and reprioritise?  Should I negotiate to reduce my work hours?  Or should I start BigD early and work later?  Maybe change the focus to family, fitness or a new work/home mix?

Life with BigD will not be worse, just different.  It’s your choice how different.

5 thoughts on “Starting Dialysis

  1. Awesome way to look at dialysis. My mother & grandmother also had polycystic kidney disease, so I have been aware for many years that this would happen to me. Luckily enough my numbers have stayed up there since I had my fistula put in a year and a half ago. Some days I wish I could get started on dialysis – feel like I’m living in limbo – can’t start a full time job, make too many far off plans, never know if I’m going to get an infection, feel tired or drained of energy. Kidney clinic in February, so hang in there until then!!

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  2. I’m starting dialysis next week. My GFR is 9 and has been since Sept. 2011. I have IGA nephropathy with no family or other history at all. Last month my husband of 20 yrs died after a 2 1/2 yr battle with melanoma (skin cancer). Freaked-out doesn’t even start to describe the terror I’m feeling as I feel fine 98% of the time. I know several people that have told me I’ll feel better but I just see a lifestyle destoryer of epic proportion. I’m not working right now because of what happened with my husband and am not sure I will be able to due to the Big D. I used to travel and spend alot of time sailing. Now that looks like I won’t be able to do that either – for awhile atleast. This SUCKS.

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    • Hi Cactus Queen. I am very sorry to hear about your husband and your kidney failure. You are right, it does suck. But you will get back to work and travel, and sail, because other people have been where you are now and got through. So can you. Your life will be different, but not over. These first few weeks are the hardest. The key is to recognize that its a paper tiger. It’s not as big or as bad as it looks. Good luck and keep in touch! Greg

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  3. Good article. I myself just started dialysis in October. Before I started I could not even walk up a flight of 4 steps. I thought my life was over. I was really fit before I found out I had kidney failure. After the first 4 weeks, when I vomited every time on the machine, I suddenly started to feel good. Now 3 months into it, I feel really good. I am back in the gym, I cycle, ride my motorbike, and I don’t even feel that I have anything wrong with me anymore .I can’t believe how good I feel. I really was not expecting this. I keep thinking something is going to go wrong. but my mentor, as I like to call him, a man who has been on dialysis from the age of 13,now 49.says to me, don’t live in fear, just live.
    And he is one strong looking man.so crack on, Dialysis is not the end of the world.

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    • Absolutely, I agree. I have been on dialysis for almost a year. I am not sick anymore and have way more energy. I pedal the exercise bike 1-3 times a week and find it does a great deal of good. Since I started dialysis my numbers have remained pretty constant, so I still have a lot of leeway in what I can and cannot eat. I am on the transplant list but am quite happy on dialysis. The staff at my unit are wonderful and caring – can’t say enough good things about them.

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