I was very resistent to Home hemo at first as I have probably mentioned numerous times. I had no interest in having a dialysis machine in my bedroom and having to stare at it everyday. It would just be confirmation of the fact that my kidneys are broken and I suck. Dramatic, yes, I know. But that’s how I felt.
I was psyched for my transplant. There had been so many setbacks and finally it looked like it was going to happen. Flares, illness, paralyzation for crying out loud…all of these things got in the way of my transplant. But then, in the end, my loving and giving father was found to be ineligible to donate his kidney to my at the last moment. They said his blood pressure was too high. Yes, one would think that would be one of the first things they’d look at as opposed to psyching us up, and telling us they were going to put us on the cancellation list so that we’d be called in if any other surgery was for whatever reason called off…but I honestly believe that particular transplant wasn’t supposed to happen. Perhaps something would have happened to me or my father if he had donated a kidney to me. That wouldn’t have worked…because I need him and he needs me.
I was disappointed that I wouldn’t be getting my father’s kidney, but I at that very moment I had made the decision that I was no longer going to allow myself to be held hostage by a Tuesday, Thursday, Saturday schedule. If I was ever going to go to school and go to work, I was going to have to do this on my own.
Aside from despising the idea of having a dialysis machine in my room, I also wasn’t comfortable with the idea of cannulating myself. I think cannulation in general has left me scarred. I’ve had shakey handed butchers shove sharp needles into my arm and miss the vein by miles. To think that a nurse actually laughed her head off when she tried numerous times to cannulate me without success only to find out by another nurse that she was in all along, all she had to do was draw back on the syringe. Then…she laughed. “HAHAHA, OH! I WAS IN ALL ALONG!!! HAHAHA!”.
She laughed. I cried in pain while Eddie, one of the hemo assistants, held my hand and looked at this nurse with hatred in his eyes. While one might think that would scar me in terms of having other people cannulate me, it just scarred me where cannulation is concerned period.
After learning how to cannulate myself during my home dialysis training, I’ve learned that I much prefer cannulating myself.
It’s been about 4 months since I started dialyzing at home and I feel great. I couldn’t be more happy that my apparently drug resistent form of anemia is started to normalize. I never thought I’d see the day that my hemoglobin would be in an almost normal range.
It’s also great to have a 7 day week and not a 4 day week. Dialysis days were pretty much a complete right off. I’d go to dialysis in the morning, come back and be home at around 12:30pm, sleep until about 4-5, eat, do nothing, then sleep again. Now I have my days back.
I don’t think that there has been a day yet where I said to myself “I REALLLLY don’t want to dialyze tonight so I’m gonna skip it”. I haven’t had one of those yet. Well, I’ve felt that way, but I’ve never actually skipped. I actually find that since dialysis tuckers the heck out of me, I tend to fall asleep quickly and feel quite rested afterwards.
One of the parts I don’t like is setting up my machine in the evening. 8/10 times it’s ok, but other days I wish I could wiggle my nose a la Bewitched and all the lines would be on my machine. But if I just sit on the edge of my bed and take my time, it’s never that bad.
I also don’t like these supplies receiving fiascos that keep occuring. Though I’m sure that’ll normalize itself with time.
The verdict? If you have a choice between home dialysis and in-centre dialysis, all I can say is this. If you love your life and want to regain/maintain control of it, then I whole-heartedly endorse home dialysis. Now that I’m on home dialysis, I can’t imagine how I managed to stay on the 3 day schedule in the past. Switching to nocturnal dialysis has made me realize how crappy I used to feel. I simply didn’t notice the crappy feeling because it’s how I felt all the time. Now I feel better, I have more energy, my labs are great, and I don’t have to go anywhere to dialyze. I think it’s also important to realize that in-centre dialysis (for me anyways) was 12 hours a week. A person with functioning kidneys has kidneys that are doing its job 168 hours a week. That’s a big difference. While nocturnal dialysis isn’t obviously equal to 168 hours a week, it’s definitely a LOT better than a mere 12 hours per week, which is essentially the bare minimum required to sustain life. I don’t want to live in the “bare minimum”. I want to be happy and healthy, and that is exactly what home dialysis offers.
Perhaps my day for a transplant will come in the future, but until then, home hemo is DEFINITELY the way to go.