Living with dialysis has been a struggle. I can't say that any part of it is easy. I have to be on top of my game everyday, no days off. Before I got on dialysis I was constantly reminded of how horrible the disease is and how difficult dialysis is. I was also reminded about how young I was to be suffering from kidney disease.I got sick of hearing it and talking about it. I did not talk much about it, only to my family and close friends. And even then, I felt slightly uncomfortable talking about it.
As I started my treatment, started to do things on my own and got into a routine. I would soon learn that things needed to be adjusted. I would either need more dialysis solution exchanges, longer dwell times, stronger solutions, and a stricter diet. Other issues would also arise; machine wouldn't work correctly, alarms would sound, my treatment would last longer and I would end up being late for work. I've had my share of dialysis spills and leaks. The solution is made of "sugar" so the floors would end up sticky if there was a leak. My diet has changed dramatically. I can't eat items that have too much phosphorus (dairy and nuts mostly), along with voiding carbs and sugar. Traveling is more difficult and I love to travel with my family. But now, I have to lug around my dialysis machine, (which TSA always gives me trouble with) making sure it doesn't get damaged in flight. Let me remind you, I also need to put advance orders in or take extra solutions with me. It sucks. Its extra baggage.
If the physical aspects of the treatment did not get to me, the emotional part did. I feel a lot more distant from family and my friends. Because I am stuck on my machine for 10 hours at night, planning my days and weeks were the key to everything. Gone are the days where at the drop of a hat I can go to something as simple as dinner and a movie. It felt like my friends treated me as if I had this contagious disease. I stopped getting invites to things, the texts and calls slowed down, till I got nothing at all.
Not even a "Hi, how are you doing?"
I am very grateful, for the few who have checked up on me or even attempted to invite me to things. Although, I might not show it, I appreciate it greatly. I am not contagious. I can still enjoy going out. I just need extra time to do so. It is very lonely on dialysis., especially being the age that I am. I feel it hard to relate to other dialysis patients because most dialysis patients are much older. Until I get a transplant, it feels like my life has been put on hold. I did however find a small group of patients who are about my age, that I can discuss living with kidney disease Although, I did find some people, it still is a small group of people. I find some comfort in that.
Sometimes I feel angry and deserted by my friends. And if I do hear from them, its more for their own conscious than general concern. Thoughts and prayers are great, but time and action is much better. Again, I do appreciate the genuine concern people have shown, it is very reassuring, just understand that dialysis is very difficult for anyone to go though, I would not wish this upon anyone.
"Don't tell people that you Loved and Cared for me at my funeral, tell me now whilst I'm still here."