First day; first week of dialysis: what was it like?
Posted , 4 users are following.
As I get closer to dialysis, I find myself wondering what to expect the first day of treatment. I'm planning to try PD dialysis first, but I'm interested in hearing about first days for both PD and HD dialysis. In addition, as you completed the first week or two, how did your experience with dialysis change? (Did you beggin to feel better or not? How long was it before you felt better? Or did you find that you didn't feel better while on dialysis?)
Thanks for sharing!
Marj
0 likes, 7 replies
MrsO-UK_Surrey marj01201
Posted
Lots of good luck wishes, Marj. Hope you get lots of positive replies,🌹
mikewordman marj01201
Posted
Hi Marj, I can talk about PD. To start, this is a reminder that after you have the surgery to install the catheter there is a lead time of 4 to 5 weeks for your body to "heal" around the tube so fluid doesn't leak out.
Ok, so let's assume it's 5 weeks later and you're ready to start. The nurses will give you training and start you off a small amount of fluid because it feels weird getting fluid pumped into you when you're not used to it and also, it's somewhat uncomfortable holding fluid in your belly in the beginning. Over the course of a few days they will increase the amount and you start getting used to it. Within a week, you'll be up to carrying a "full load" and off you go.
For myself, once I was up to 100% fluid load I started feeling better within maybe 2 days. It's a pretty fast improvement, after all the fluid is doing it's job to pull water and waste out of you. You diet opens up quite a bit which is fun, and your energy improves. So you just keep on keepin' on until you get a transplant.
One pearl of wisdom I can provide is to expect bumps in the road along the way. There's always something - maybe the catheter "sticks" inside you during draining, or the concentration of the fluid needs to be changed, or the machine (if you're using a machine) needs to have its tidal flow setting adjusted... You get the point. There is always something that needs adjusting. If you expect it and try and roll with punches, it'll make those hurdles much easier to deal with.
I hope that helps.
marj01201 mikewordman
Posted
Mikewordman,
Thank you so much for sharing!! It's encouraging to think that:
1. The first day/week on PD may not be too overwhelming
2. It may only take a few days or a week before I'll be feeling better on PD
I think that waiting this out may be much worse than the actual treatment once I am finally placed on dialysis. I am truly thankful that PD is an option for those of us who ultimately need dialysis today. It certainly seems as though it would be much more manageable than in-center HD. (I'm single and live alone do have no partner to serve as a care provider for in-home HD. So, if PD doesn't work for me I'll have only in-center HD as my other dialysis option. I'm not as excited about that option.)
Marj
mikewordman marj01201
Posted
You're welcome Marj. May I ask what your kidney function is currently at (%)?
marj01201 mikewordman
Posted
It's currently fluctuating between 18-20%. My creatinine is fluctuates from 2.85 to 2.92.
I've been seeing a new nephrologist who has been talking with me more about dialysis than my former nephrologist. So it's on my mind a lot right now.
My current nephrologist wants to be sure I realize that my renal function could fall back down into renal failure pretty much any time. (I had 8% function with creatinine of 4.6 when he first saw me about 10 months ago.)
Of course I realize what he's saying to me. However, I'm also feeling MUCH better and functioning much better on a daily basis right now. So I can't help but be thankful for that, no matter how long that may last.
I'm preparing for the worst but hoping for the best. However, I am convinced that PD dialysis will work for me. And, I do realize that like anything else, there will be ups and downs with PD; however, I like the idea of daily cleansing for my body. I also think it's easier on your cardiovascular sumystem. That's another real advantage. It will also work more readily around my work schedule.
Anyway, while I'm thankful that my renal function has improved over the last 10 months, I'm realizing a need to prepare for dialysis.
Marj
mikewordman marj01201
Posted
Not to worry Marj, you'll be fine. Thousands of us have been through it and as I always say, if I can do it, anybody can do it. One piece of advice, and that's to start the dialysis when they say you are eligible which is usually around 12% or so (your nephrologist will clarify for you). Me, I waited until I was down to 6-7% and by that point I was pretty desperate to get started on it. No point in waiting in waiting until you get that low.
marj01201 mikewordman
Posted
My eGFR was 8-9% from Decenber 2016 through August 2017. I was seeing a different nephrologist at that time. I really expected he would put me on dialysis, but he didn't. There were a number of issues with him so I ultimately requested a consult with another nephrologist. That resulted in me seeing my current nephrologist.
I appreciate my current nephrologist a lot. He clearly knows what he's doing. Of course the change he made in my treatment plan has improved my renal function some. But it clear that he is also preparing me for treatment options when my renal function deteriorates again.
I will definitely listen to him and follow his advice. I'm sure that I'm no different from anyone else. I want to do whatever I can to feel well and function as normally as possible. If dialysis will help me accomplish both of those objectives, I'll embrace it.
Marj