Stage 3 chronic kidney disease (CKD): What specialists do I see?

carnes, I am equally confused by your situation. I admire your desire to get things explained to you so you know what is going on. That is the best hope we all have. Unfortunately, not all professionals feel the same way. So, my only thought/question is to ask you to consider taking someone with you on your appointments as a 2nd set of ears and voice. Who could do this with you. Your best bet would be someone who could be a consistent companion at the appointments. With your husband working, maybe you have someone in mind.
2nd thought/question - How about having this person make your calls and inquiries for/with you.
Does any of that sound possible? What do you think?

@rosemarya, I know a lady who carries a small battery-operated pocket recorder and lists her questions on it as they occur to her. She also takes it with her to medical appointments to record doctor's instructions, etc. And many health providers will give you a print-out of your visit, summarizing what was discussed, what was decided or advised. Some clinics even have an online patient portal where you can look up your visit reports, lab values, physician's notes, email your doctor, etc. Not all offer this, however, so using a pocket recorder might be a good strategy. I think Walmart has inexpensive ones and a lot of the newer cell phones have a recording feature.

New labs are back. GFR up from 24 to 33, close to where it was before neph increased diuretic only this time BUN and Creatinine or lower. So I've gone back into Stage 3 by staying on my vegan diet and using the recipes - that plus time for my kidney to recover from the extra diuretic are responsible, according to neph and primary. Phew! Neph wants me to consider having vascular access done so it will be there when - or if - needed but no dialysis soon. I so appreciate your support and encouragement during what has been a very difficult time.

Would like some feedback. Not medical advice, just patient opinions from other CKD people. I've moved back into stage 3 CKD and am feeling quite well but neph wondered if I should go ahead and have the arterial-venous access graft surgery some time this year in case dialysis becomes necessary sooner than we currently think it might. I asked my neph to refer me to another neph for 2nd opinion and am in the process of getting an appointment for that consult. I don't want to put anyone on the spot but here's my question: would you go ahead and have the graft done if your eGFR is 33 and your BUN and creatinine are coming down closer to "normal" (but still high) or would you wait and see if your kidney function improves some more? I'm not asking for diagnoses or medical advice, I just want to know what others in my situation might do. Thanks!

@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the recommendation of my nephrologist, I had the fistula surgery done 3 1/2 years ago. Still not on dialysis yet. If my eGFR was 33 and holding steady, I would not have the surgery. If it was dropping, I would begin thinking about it, but would probably wait until it was lower. That's my opinion.

@marvinjsturing, thank you very much for sharing this. Neph was thinking if there was a sudden drop or an emergent situation they'd have to access the vasculature in my neck, which even though I'm a nurse I think is pretty drastic and wouldn't want to have to go that route. But I was thinking ig my eGFR stays at 33 or even improves, I might be able to wait awhile. When you had your fistula surgery, was it outpatient? Did you have to do dressing changes or was it "bandaid" surgery? How long did it take to do it and how long did it take to heal and "ripen"? Is it uncomfortable for you now? Sorry to pester you with more questions but I appreciate your input. Thanks again.

@kamama94 My surgery was done as an outpatient. It was done 3 1/2 years ago. I don't remember having to change any dressings. I went back to see the surgeon 4 months after my surgery. At that time, he told me I had to continue "exercising" the fistula, but it really didn't grow much after that. Mine is in the upper left arm. I was told that the first choice is in the lower arm, but the veins in both of my lower arms were shot from all the chemo I received. Most of the time, it doesn't bother me. Once in a while, it feels like it is pressing on the muscles in my arm. The one thing I didn't expect was that in order to protect the fistula, I cannot wear my watch on my left arm and you are never supposed to draw blood or take your blood pressure using that arm. Because the fistula is in my left arm, I am not supposed to lay on my left side when I sleep at night.You are supposed to check it every day to make sure there is a thrill or a pulse. With mine, I can look at it and see it pulsing. But when you put your hand on it, you can easily feel the thrill. (I have no idea why it is called a thrill, but I like to say that dialysis nurses get a thrill out of feeling my arm.)

A couple of year ago, my wife temporarily needed dialysis after her heart valve replacement surgery. She had it done in her neck. I am glad I have my fistula, because after watching her, I don't want it done in my neck.

My husband's tunnel catheter was in his upper right chest, not neck. It had to be kept dry and the dressing changed each time of dialysis, but it was not painful. It is supposed to be a temporary solution when dialysis is needed and there is no fistula. At the time they put it in (March 2017), they did not expect him to live very long. In June of 2017 he was put on Keytruda, which has kept the cancer at bay - it truly is a miracle drug.

His fistula was put in last June. The operation did not take an hour or so, and was outpatient. They did not start using it until November.

Thanks, @gaybinator. Sending you both positive thoughts.