It's hard to have any kind of social life when you're on dialysis.
The treatment itself takes up a good amount of time, depending on when you do (either in-center, three times a week - 4-5 hour treatments, or at home 5-6 days a week 3-4 hour treatments) and then you're not always gauranteed to feel great after the treatment, so you may spend a lot of time just resting.
I've been lucky; I've tried to keep an active life. I'm not as active as some on dialysis - I've read about some crazy folks who still go globe trotting, climbing mountains and such. God Bless em, I don't know how they do it! But I'm still fairly active. I went to school for a while while I was on dialysis, and I worked part-time - mostly doing odd-jobs for people. I run a video game company, and we make adventure games in our spare time - it's a hobby site, but we put in a lot of work to our products, and the team is comprised of people from all over the Globe. I play guitar in a band, and I still manage to get out and play a gig or two. I even got my friends and family together this summer to shoot a little comedy movie - we had a crew, costumes, a script.... it was a lot of fun. Whenever we can, my wife and I go up to my family's camp in the Adirondack - it's nice to get away, if only for a day or two, and enjoy the woods. We even did dialysis up there once, which was a crazy experience. Doing dialysis in a cabin in the middle of the woods was a very zen-like experience.
I'd say that keeping busy keeps my mind focused and on the good things in my life - but it does, at times, make me realize how limited I am. You get a taste for being on the move and doing things, and you wish you could do more only to remember you're tied to a machine with a three foot freakin' tube.
I can't for the freedom that a transplant will someday provide me with - I don't think you'll be able to stop me from going and going!
~Steve
Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. From a young man to a middle aged dad, insight and thoughts on life, love and living with ESRD - tinged with humor.
My husband also does Nxstage his treatments are about three and a half hours then you have to figure at least another hour to set up and to take him off and of course there are times you have alarms or needle placement problems that can extend his treatments. We do 5 treatments a week. My husband tried to stay active but he is always just so sick and tired its hard to even get him to get up and function lately. He is battling anemia and even with iron infusions his hemoglobin is lingering around 9.0 and his iron stores are not good. I try and give him the things he always told me he wanted when we were dating. He said he loved to travel and wants to see as much of the world as he can. So sense he started Nxstage we have been on two cruises. He loves traveling but being that he always feels pretty crappy. Both cruises he ended up spending a few days just resting in our stateroom. We have another cruise planned for March 2011. Taking so many vacations straps our budget but I think its important for my husband to enjoy life because we all know ESRD has many victims. Plus he had to give up so much like his job his freedom and his social life this is the only way I know to make him feel somewhat normal again. I'm so glad I found this blog and I hope you keep writing it.
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