How long have you been on dialysis?
How long have you been on dialysis (either currently or in the past)? What type of dialysis? Please share your experiences with us!
I've been on dialysis twice, and both times, it was hemodialysis, and both times, I had a tesio catheter line in my chest for access. I did have surgery for an AV fistula, but that didn't work. the first was a short amount of time, less than a year, and I had a transplant, but then after my kidney failed, I was on it for 6 years.
Both times were quite hard physically. I was constantly dizzy or fainting from low blood pressure after I finished my treatment, from having too much high blood pressure where I had hypertension and had to see the dietitian for having high potassium, which meant I needed to change what I eat and drink. Still, the WOSRT of it all was fluid requesting. It was so hard only to drink 500ml on days I was over my fluid limit, and if I didn't take off all the fluids, I would have to consume less, but that max I was a loud was a litre of liquid.
Thanks Sabad (Team Member)
I agree with Sabad. The restricted liquids “diet” was and still is one of the hardest parts of dialysis. The multiplier factor is many people on dialysis find themselves dehydrated after dialysis. Almost like the old cartoon of the prospector crawling across the desert and turning his canteen to discover it’s empty. Joking aside there are serious consequences if one chooses not to stay within their liquid restriction.
Phil
I can’t imagine just how hard this must be. I mean we are educated and told to drink, drink, drink in our lower stages and we get used to that. Then we hit rock bottom and are told we can’t drink. I think I would just die. I am constantly dry mouthed and wanting to drink. This must be very hard and there must be skills used to circumvent the drinking issue. I guess a lot of hard candy to suck on?? Take care and keep fighting the good fight💚. Cindy (TM)
I have been on PD for 3 years.
, how are you doing on this type of dialysis? My youngest son has been on dialysis for 3 years also. He started on home hemodialysis but is now on peritoneal dialysis. Let us know how this treatment is working out for you. We would like to hear more from you. Diane (Team Member)
Note I’m 82. In my experience with PD, it worked well for 7/8 months until I had three non PD infections plus Covid requiring hospitalization. I was notified my clearance rate on PD had dropped below expected rates. My care team felt I could raise my clearance rate if were willing to go up from 4 to 5 sessions a day and that might increase my hooked up time would increase my hooked up time from around 12 hours a day to somewhere between 18-24 hours a day. My care giver and I decided the we couldn’t tolerate the expected hooked up time and I returned to hemodialysis. The final view was the infections had damaged my abdominal lining.
I’ve had three different chest ports over about a year and a half. When they activate your fistula, they start with two very small needles and gradually over a period of time work their way up to the size needed to optimize your dialysis. If you experience pain, there’s a spray that eliminates the pain. I’m two weeks post surgery for my fistula. So far everything looks fine. I do have to wait until 6 weeks post surgery to start activation. Squeezing the rubber ball or rubber kidney is a major and important task from surgery to activation. I have had orthostatic hypotension occasionally. Almost all the time, when I tried to stand after dialysis.Just let the techs know and you might have to stay a little longer after dialysis. Rather than worry about what might happen, work with your nephrologist. In my unique case, my nephrologist was able to stave off dialysis for about twenty years.
Philthanks for the info.
1YEAR
Hi! Congrats on your one year journey with dialysis. Can you share a little bit about your first year with us? How was it in the beginning, how did you manage the needles (my biggest scare), did you ever have a bad event during dialysis or afterwards? I’m stage 3b and not really thinking I would do this but maybe more information would be good. Thanks for sharing. Keep fighting the good fight kidney warrior.💚. Cindy (Team Member)
