Dialysis Side Effects

[LoveHaley]

I'm new here. I've been on dialysis at a local clinic since mid-December 2021. I was diagnosed with Stage 5 and my GFR number is 2.6. I'll be exploring in home options at the end of this month with my Doc. My question is regarding the side effects I experience from dialysis - I leave barely able to walk, weak, dizzy, have fallen several times, no appetite, have lost 70 pounds and close to giving up. This is not way to live. Have others experienced this and does it disappear over time?

[Skip77]

Seven years strong over here, and you may not like my answers. I think things like your appetite will stabilize over time, so I wouldn’t be surprised if you gain some weight back. As far as the dizziness , fatigue etc. , I can’t tell you it won’t continue. Dialysis affects everybody differently, but those side effects seem to be pretty common. I know I often exhibit those. I will say , that the year I was on PD at home, there was a definite decrease in the severity of those. So if you’re willing to commit to the time and effort needed, I recommend it.

[Juliepkd]

Hi. It sounds like you are really going through it at the moment. It's so hard when you feel so awful. I do understand.

I have lots of questions!

Do the clinic staff and your consultant know just how dreadful you feel after a session? Are you having the right amount of time on the machine? They should be able to help alleviate some of your symptoms. Maybe they are taking too much fluid off you at each session? Do you get help from a dietician with your nourishment and supplements if your appetite is poor? Perhaps you need different or more medication? It's good that you are going speak with your doctor at the end of the month, but please talk to the clinicians at the unit too. My GFR wasn't as low as yours, but I know that when I first started haemodialysis, it was a shock to the system. However, I settled into it after a couple of months and gradually started to feel so much better. Hopefully with the right adjustments, you will start to improve and get your appetite back. It's important to eat well if you can . If you do decide on home dialysis at least you won't have the travelling issue but it would be so good if you can start feeling better whilst dialysing at the unit.

Wishing you all the very best.

Julie

[LeesKees_NJ]

I just started training on a NXStage1 home hemo dialysis unit, I hear they are much gentler on your system compared to the units in-center. They keep you more stable less rebounding. I feel perfectly normal getting off, no lightheadedness or fatigue. You have to meet criteria to do it at home solo, but it was the best choice for me. I am a polycystic kidney patient so PD was not an option.

[mingmiley in reply to LeesKees_NJ]

Hi, LeesKees, Are you living by yourself at home? Do you have to have another person to help you with NX Stage 1? I heard that home hemodialysis you have to have two persons.

[LeesKees_NJ in reply to mingmiley]

I do not live alone, I have adult children here. But I do my dialysis solo. You do not need a partner if you fit the program criteria and take the 6 week course to be certified. I started by myself this week. It is a little scary and nerve wracking at first but totally doable. I can see that it'll get easier as time passes. I have talked to other soloists and they agree they like being home versus the clinic.

[mingmiley in reply to LeesKees_NJ]

Yeah, you have adult children in your house, that does give you some sense of security; I live by myself in a senior apartment, that's still scareful if something is to happen on me during dialysis. Besides, on the end, when I pull the needle out, I had to quickly get the 4 by 4 to put pressure on it, I probably will make a big mess from it. When I'm alone and do this, I might get panic, when I go clinic, seeing other people there doing the same thing, get me out to the people instead at home 24/7 by myself feels like. Thank you, I hope your doing at home gets better and better. God bless you and your family.