Hello I am new here

[MarBea]

Hello I am new here. I am a 58 year old divorced female, living in the Northern VA area.

I wrote a lengthy introduction in the Kidney Community hub. I just found out I have CKD last Friday. My GFR was 68 in June 2019 and it dropped to 55, two weeks ago. I had no idea I had kidney disease in June, I remember my new PCP saying we need to re-check kidney function soon. This disease was never on my radar. I have been pre-diabetic for about 15 years, and I have done a great job, keeping my A1C down, through diet. I had my Thyroid removed due to Stage 1 Papillary Thyroid cancer 6 years ago. I have always focused on BP, glucose, cholesterol, and A1C, I did not even know what a GFR was. I met with my PCP yesterday, and she had me STOP all vitamins except a small dose of Iron and Melatonin. I am one of those people who USED to take a lot of vitamins, before yesterday. My PCP said, I could take a few of them, once we get a handle on my CKD and GFR's.

I am watching my salt and carbs, and I am drinking A LOT of water. I am a vegetarian, but I am guilty of enjoying carbs a bit too much. We will be checking my levels in 2 weeks, and re-checking them every couple of weeks for the next 2 to 3 months. I am going to get an Ultrasound Monday, to rule out anything other than CKD.

If my levels don't go up, I will be seeing a Nephrologist. I was given GREAT advice from Mr. Kidney, on the other board, to ask to see a Renal Dietician, and I plan to make that request as soon as possible, regardless of my GFR. I just did a search in my area, and there are many dietitians in my area, that specialize in renal disease! I received some good advice from the Kidney Community, and I am so grateful to have these boards.

My questions for those of you that are not on a Stage 5 Renal Diet are: how much water do you drink or TRY to drink on a daily basis, and what is the maximum amount of sodium you allow yourself? I have been using My Fitness Pal for years, does anyone have a site they like better?

Thank you in advance

[runningjohanna]

Hi MarBea

You struck a chord with me as I am also a 58 year old female with CKD. You impress me with your general health knowledge and you also sound well supported by medical staff. I posted first time last week re various issues to do with fitness and the impact of kidney disease on muscle strength etc. I am trying to drink more water and watch the salt. Unfortunately the first nephrologist I saw was very dismissive on diet and it’s impact on ckd. As you said too, this condition came as a bit of a shock. Do you get tired? Anyway welcome and thanks for posting. It’s good to know we are not alone!!

[MarBea in reply to runningjohanna]

Hello and thank you for responding! When I found out that I had kidney problems, I was in shock. I had my own private pity party, and just started reading! I think I am going to order one or two books on CKD, in the next few days. I didn't have a real PCP for a few years, and it took me a few months, to find one that I like. The first thing she did was a physical. I am drinking as much water as I can handle, making serious dietary changes, and cutting WAY back on the salt. It saddens me that the first nephrologist you saw was dismissive.

Have you been able to see a dietician? I looked up dietitians online, and many stated they specialize or have experience, working with people with renal diseases. I plan to make an appointment to see one in the next few weeks.

I have been tired for a while, and since I found out, I seem to be more tired.

It is nice to meet you, and I am here.

You are not alone, and I am here if you want to talk.

Blessings to you

[honeycombe1]

Hi, MarBea.

I'm from the UK.

I was diagnosed with Kidney problems about 5years ago. gfr 31.

Last week... gfr 35.

My numbers have been.

31

31

32.

29.

24.

31.

So, it's higher now than 5years ago.

I'm 65 years old.

Nephroligist is not concerned as it is pretty stable.

I have regular check ups.

At the beginning I panicked and had terrible anxiety.

This site is really good. Many people have helped me on this journey which was very scary at the start.

Wishing you all the best. Dawnxx

[MarBea in reply to honeycombe1]

Hello Dawn,

Thank you for responding.

Its wonderful that you have been able to keep your numbers steady!

You must be doing a lot of things right!

I understand the anxiety, and I think its normal.

I took me for a loop.

I decided to learn as much as I can about this disease, and I am fighting it.

I agree, this site is wonderful.

I look forward to being a part of it.

Sending good vibrations to you, across the pond.

[Bassetmommer]

HI Marbea,

To answer your questions about water... it really depends so it might be something to float by (no pun intended) your doctor. But most CKD advice is around 2 liters a day. And it depends on if you are having edema as well, which is why you should check with your doctor.

I fill my 24 ounce glass first thing in the morning and water is the first thing I drink even before coffee. I keep refilling it all day until after dinner which I stop unless I am going to be up later than 10 p. It is a habit now and I do not even think about it. I take water with me also when I am out and about. I always had water in the same fashion when I worked And yes, I spend a lot of time running to the potty.

I used Fitness pal for my first year and then switched to Davita. I found that I could keep track of potassium and phosphorous better. Fitness pal's directory of foods is from the users and not always accurate either. I took a break from tracking for a while.....and I have to go back.