Looking for info - rapidly decreasing EGFR

@gvan143 Welcome to Mayo Clinic Connect. I am so sorry, your post slipped through on me, and I am just now responding.

First off, how is your mother doing today? I can only imagine your anxiety! When you say you would get shut down by her if you ask questions, are you speaking about your mother or her doctor? Do you have medical power of attorney, or has your mother given you authorization to have her medical information? It's not that you want to make the decisions for her, rather that you need to be aware of all the concerns and issues, as her caregiver, so a knowledgeable discussion/decision can happen.

If she has not seen a nephrologist, will she? Getting to the cause of the drop in kidney function is crucial, in order to be able to understand what is going on. If your mother is resistant to seeing a medical professional about all this, can you think of why that is? Did she have a bad experience in the past, is she stubborn, or perhaps dealing with mental decline to make sound decisions?

Please let me know how she is doing, and how you are doing, also? When is that appointment with the doctor?
Ginger

Today was a better day. We have repeat blood work on Tuesday and back to the nephrologist on Thursday. He’s the one who has told her that she won’t be a candidate for a transplant and has started talking about the dialysis options.

I’ve got a broad POA. My mom was my dad’s caregiver for years, and now I’m doing all I can to take care of her. He had a complicated medical experience the last few years and it took a lot out of her. I manage her household, her medical appointments, her finances and generally take care of her household. She is independent, but highly dependent.

I don’t know if she will do dialysis. She gets tired of the appointments in general and getting out of the house multiple times a week is is exhausting to her. Going to physical therapy after her stroke sometimes took more out of her than it strengthened her.

I did try to ask her once recently her thoughts on dialysis and she walked away from me. She’s told me quite a few times that she is generally just done and doesn’t want to do anything more.

She most likely isn’t going to change her diet nor is she able to really exercise after the stroke she had in September.

I have had two aortic valve replacements. The first got calcium on it so they replaced it. They do a fantastic job and this one is functioning really good. I have the best heart surgeons using the latest procedures and I don't think they would elect not to replace a aortic valve. You might want a second opinion.

@gvan143 I was thinking about your mom last night, and you said you have blood work on Tuesday with appointment on Thursday with nephrologist. My suggestion is to have a list of things and questions that concern you. Explain to your mother you want to completely understand what is going on.

When you mentioned the rapid decrease in eGFR, it occurred to me to make sure your mom is well-hydrated for that next testing. Also, if she had a recent infection, or was on antibiotics, that may have affected her readings. Remember, we want to look at trends, not a one-time reading.

In general, dialysis is talked about, but not started until eGFR reaches about 10%. I myself started at 14%, my choice due to other circumstances. To decide to not do dialysis is also a decision. Let's hope that decision is a long ways off, and this sudden decrease is something that can be remedied. I believe this is why the doctor wanted her back quickly, to look at the fact this was a one-time sudden decrease.

Please let me know what you find out this week, will you?
Ginger

Thank you, I definitely will. It’s so hard because every day is such a roller coaster. I spent this morning with her at church and she was so good. I went home for a couple of hours and went back because she needed help with a sewing project she’s working on, and I can see she’s just mentally struggling so much. My Mom has been an avid seamstress and quilter for years, and now she’s struggling to understand a pattern we are working on. She’s making covers for the local NICU’s isolettes. She’s upset, telling me how confused she is and that her brain is dying. It’s heartbreaking.

She’s got a lot going on and I won’t be surprised if she makes the decision not to do dialysis, if and when that time comes. I’ve told her, I will always be her strongest advocate, but I also appreciate being able to ask her questions to understand her decisions.

I appreciate your feedback, too. It’s a helpful way to approach the appointment, and hopefully in a way she knows that I am there to understand so I can advocate on her behalf.

And I’ll see her results before the appointment so I’ll know where things are going too. I’m grateful for the portals so I’m not caught totally by surprise.

HELPFUL , My moms GFR dropped from 35 to 23 since last year and I'm verry worried about it, we see the Nephrologist in 1 week. Tx.

After scaring the heck out of my mom based on her gfr alone I kind of regret reading tho those results ten days out. I switched her lasix to every other day to relieve kidney stress on my own.

@wr61 Please be sure to tell her nephrologist what you did with her lasix! Any changes in medication dosages are important to share with your medical team as a whole. What prompted you to do that?
Ginger