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[Lilly234]

Hi. My name is Kathy and I am at renal failure (so they say). I have been fighting this for months. I lived in Milwaukee County all my life and was diagnosed as having Stage 3 for a couple years. I had to move to Green Bay when I was laid off and could not get another job nor afford my high rent. When I had lab tests done here, I was categorized as 4th Stage then a drop to 5th Stage, then back up to 4th Stage, then back to 5th Stage. What? I feel something is wrong. I am on dialysis but do not feel better. I feel that the labs up here are off compared to Milwaukee. Does anyone else have any problems with wondering if the labs could be wrong in some cases?

[Hidden]

Lilly, maybe you are thinking in the wrong direction: could be that the labs might be right in some cases. : )

If you are stage 4, why are you on dialysis? Just asking.

[Lilly234 in reply to Hidden]

I don't know. That is why I am so confused. I don't feel good when I go to dialysis. My blood pressure falls and I end up vomiting. The other day, I was sick all over myself and was so embarrassed. I feel like I don't need dialysis but I am just a patient. I skipped my dialysis yesterday and I felt wonderful. Today, I feel good and woke at 5:30 a.m. to start my day. Thanks for contacting me.

[Dixidude39 in reply to Lilly234]

Lily, I'm not a doctor or other healthcare professional, but I am CKD4 because my right ureter and kidney were removed due to cancer in 2016. My blood tests indicate that my eGFR (estimated Globular Flow Rate) is 27. I'm 80 years old, so if the day comes when dialysis is knocking on my door, I'm not convinced that I should go on dialysis, I'm not sure if I will go on dialysis, or just let nature take its course. I sense, however, that you are much younger than I am. I read posts on this site indicating that there are patients with a eGFR as low as 8 who are doing well WITHOUT dialysis.

[Lilly234 in reply to Dixidude39]

Wow. This gives me hope. I am 71 and I have read about some people who have stopped dialysis and doing great. I have been eating all the right foods (mostly). The only thing I don't do is get enough exercise which I plan on doing soon. I have been very optimistic about my future. I have to be. I have 3 grown children, one of them lives with me and can't work so I support her. She can't survive without me. They lost their Dad at an early age and don't want to lose me right now. I also find that music and singing helps my mood and I am always smiling when around other people. Take care and thanks for writing.

[Hidden in reply to Lilly234]

Lilly234, I quite agree with Dixidude39: I am 83 and have been stage 4 for many years. GFR 21. Sure, I am careful in several ways, but when it finally comes to dialysis, why bother? That is the feeling today, tomorrow, ? I ask again, "why are you on dialysis?"

[Lilly234 in reply to Hidden]

I dropped down to Stage 5 and then back up and down again. I feel better on the days when I don't have to go in. I tried to check my numbers by going into the Davita website and was told I can't because my name and password are not valid. I think my last GFR was 11-15 but I want to see for myself. I was even thinking about having my blood tests done back in Milwaukee and see where the discrepancy is. I was Stage 3 in Milwaukee for a very long time. I moved here to Green Bay and my numbers supposedly changed dramatically.

[WYOAnne NKF Ambassador]

What is your most recent eGFR and creatinine? I think you should make an appt with your nephrologist and let him know how you feel and what is happening when you do go to dialysis. Write down your questions to ask at your appt. If he is not willing to work with you, maybe it's time to find another nephrologist. You need to understand what is happening to you and is his job to help with this.

I was living in Milwaukee when I had my transplant at U of WI in Madison. Are you listed for a transplant? Oct 15th is my 20th Kidney Transplant Anniversary!

[Lilly234 in reply to WYOAnne]

Congratulations on your 20th anniversary with a new kidney. I am going to be put on a waiting list for a Hep C kidney (the waiting time is shorter). I am too old to be put on a regular waiting list. My doctor is on maternity leave and she only comes to the center once a month. I have my numbers in a print-off I have but don't completely agree with them. When I do see my doctor, at least one of the nurses, the receptionist and the dietician are all hovering around with their notebooks. I wish I could talk to her one on one. I may have to make a separate appointment with her at her office.

[KidneyCoach NKF Ambassador in reply to Lilly234]

What are your lab values? GFR, Creatinine, phosphorus, albumin, hgb, tsats? These tests help determine stage you're in. Getting sick at dialysis i.e., bp drops and vomiting, cramps are indications they are removing too much fluid too fast. This can be completely avoided. How much fluid are you gaining between treatments? What is your target weight do you know? Have you considered home dialysis? Have you checked out kidneyschool.org ? This will offer answers and explanations for many of your concerns. If you want to talk to any one of your team members be it dietitian or physician one on one then merely ask at the time or ahead of time. They are required to concede to that request. There is no specific age limit for transplantation. If you're being told you're too old (HOW OLD ARE YOU?), then look for another hospital or transplant center and request evaluation for a transplant. Blessings

[Lilly234 in reply to KidneyCoach]

I was told that because I am 71, being put on a list would be about 5-7 years so they suggested a Hep C kidney where the wait list is shorter. I don't want to do an in-home dialysis. I don't have room and part of my exercise routine is swimming. I can't get in to the Davita.org website to check my numbers. It is telling me my name/password is invalid. I have to talk to someone about this on Monday.