Dialysis - Stories and Questions

When I first reached out to her I replayed on one of her post . I thought maybe I didn't do it right. So I when to the help option and "How to Send a Private Message
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I then thought I was "doing it wrong"as I said in my pervious reply that I was asked to reply to that I was receiving the responses. Then I get another reply with most of my replay in "quotations" as I take as frustrating person replaying. So this whole "discussion has turned into a very big mess and I think I will step away. Thanks and thank you to very ones support

@jessgarduno30, you may find this article helpful:
- Replies and @mentions: How do I know who is replying to whom?
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
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Two weeks ago, I had my quarterly testing for dialysis adequacy, seeing that I am doing home peritoneal dialysis. It was a shock to learn my adequacy score was only about half what it was three months ago! My clinic immediately placed me on "double" the dialysis, and I retest this coming week to see if there is an improvement. I am really hoping this will show I am above the state baseline level of 1.7, now.

Wow, what a hit to my daily timeline, let me tell you! Doing manual PD, my schedule is pretty flexible, but it sure takes a lot of time each day, now. Get up, do first dwell about 8AM, drain after 3.5 hours, wait 3-4 hours, and repeat. It is difficult for me to do much physically while dwelling, so no outside work, or even walking; it's just too uncomfortable.

Thankfully, our local food bank is taking all my fluid boxes [identifying labels removed!], to help pack weekly pickups by some residents here.

Mentally, it has been a real eye-opener, understanding that my kidneys have really failed. How have you handled a change in your dialysis prescription, mentally and physically? I'd like to know!
Ginger

@gingerw I’m sorry that I don’t have any answers to your question because at present I’m not requiring any dialysis. But when I was learning about various dialysis types the people promoting PD claimed it could be done while you sleep. Is that true? If so, would that be an option for you?

Yes, nighttime dialysis using a machine is how many people do PD. However, there is a trick to that. It is because you need a lot of dialysis, as the bags of fluids are 2.5 times the size of the manual ones. The machine is programmed to dwell a certain amount of fluid into you at a time. Right now I do not have a prescription that requires that much fluid. To go onto a machine I would be wasting fluid everyday. But I appreciate you bringing it up to the group!
Ginger

Is there a time in which they increase dialysis or recommend a transplant? I’m concerned about my aunt, who has Lupus and goes for dialysis 3 times per week. She’s been sick a lot lately. I’m just wondering ……I don’t want to pry.

@celia16 So sorry to hear your aunt has been ill recently. It sounds like she is going to a dialysis center and doing hemodialysis. Typically, she would be meeting with the doctor at least once a month while she is there. Usually there is constant monitoring to ensure she is getting adequate dialysis.

There is a lot of criteria that need to be met and addressed to get a transplant. Has your aunt considered getting one; has she been evaluated yet for a transplant? I hope she is also being followed by a rheumatologist for her lupus. That specialist should be in contact with her kidney doctor to coordinate care for her given the health concerns she is facing.
Ginger

@gingerw ,
Yes, my aunt seems to always be seeing doctors and I know that is expected, but she always seems to be ill. I was just wondering if that is normal. I just discovered that she saw her primary and ER again this week. I’m not sure what the trouble was, but she was released.

Maybe, the next time we visit I’ll ask a little more from her. She’s never mentioned a transplant. She’s 78 years old.

@celia16 As your aunt is 78, transplants are probably not an option. I was told (when diagnosed for dialysis at age 82) that they just don't do transplants beyond age 70. That may (or may not) change when they have an artificial kidney perfected, but I think that is perhaps 10 or more years away.

@rickkaplowitz ,
I was wondering about that. I thought I read somewhere that age wasn’t a factor, but I must have misunderstood. It does make sense. Thank you.