Stage 3, only followed by a nurse practioner who is doing nothing.

[annon12345]

I have a recently consistently dropping eGFR from high 50's (over about 3 years) to 52 in June, 49 twice in a row now Dec and Jan 4 eGFR has been done with using creatinine and cystatin C, both of which were close. Cystatin C was 1.33, creatinine was (a month earlier) 1.04

Kidneys are a bit small (by about a cm for one, 1.5cm for the other). Left kidney is covered in many cysts, the biggest is 4.5cm. They are on the outside, not inside. I was under the impression that you needed to drain them when they were that big or you had a bunch of them but nurse practitioner is the one following me and says no. I wish I could be seen by an MD but apparently my kidney function is not considered bad enough to allow me to see one. 

Have a 2mm kidney stone parked mid left kidney for 2 years and counting (taking potassium citrate for that; have passed kidney stones before - not sure if I want this one to stay there forever at 2mm or get rid of it while it is small LOL).

Chronic UTI's.

I have small fiber and axonal large fiber neuropathy including autonomic neuropathy of my entire GI system and to some degree my cardiovascular system, prediabetic with multiple cases of pancreatitis and a 6mm lesion in the side duct which is stable, recently mildly high blood pressure, three cancers (breast on both sides likely OK, follicular non-hodkin's lymphoma - one of the incurable blood cancers), high cholesterol, and some other more minor junk. Makes it hard to find a primary care physican after mine quit as they don't want to deal with this mess. As a result I am stuck with a second year resident.

MY QUESTIONS:

1) With my various kidney issues is there anything I should make a priority to get someone to pay attention to what is going on? (I live in MS, which is pretty consistently the bottom of the nation for health care and certainly many of my experiences are consistent with this. Right now I get seen 2xy year and just basic blood work is done.

2) What tests should I insist someone does?

3) How important it is to raise a big stink to be allowed to be followed by an MD rather than a NP?

4) For anyone in Houston, is there someone good there I should try to get a second opinion from? I go there several times a year as I am followed for my fnhl at MD Anderson Cancer Center. 

5) Anything else people think I should know? Resources to look at? 

6) Not once have any of these tests been done fasting. Does that matter?

Thanks.

[jodaer]

Can you move to a state where you can get better medical care?

[annon12345 in reply to jodaer]

Eventually but I live in HUD (lost my job over the 2 cancers in one year, went through all my savings and now dealing with age discrimination with finding another full time job) and those waiting lists (of which I am on some) take several years or more to get to the top of them. As a result I have to travel for a few things to get better care at a decent facility. Not the best choice but it is what it is.

[jodaer in reply to annon12345]

I'm so sorry about that. I just read an article about how bad it is in MS to get good health care. The state should be ashamed of how bad it is there.

[annon12345 in reply to jodaer]

The university system is Joint Commission is D rated and F in surgery. The other two systems aren't much better. Both have been bought in the last couple of years and have gone down hill. The for profit system in town is closing offices left and right. That for profit bought a bunch of failing hospitals and hasn't put a penny into them. This state is last in the nation for health care for a good reason. And then we have our water problems. That is a real pain. This state is terrible in so many ways.

[seabreezegirl]

Why don't you just change who you see . If it were me I would find a good Internal Medicine doctor ,( they are a specialist with extra training on top of beig a basic MD )

I would not stay with that NP otherwise ypu will end up on dialysis sooner than later .

Are you eating a good kidney diet ,??

Call around and finalize a new doctor ASAP

[annon12345 in reply to seabreezegirl]

I have been trying to get out of resident care. Practices are closed for the people who have a good reputation unfortunately. I have asked to see an actual specialist and not the NP. She told me it was normal to have your eGFR vary by 10 points!! Seriously? Mine has never done that in the past.

[Nannie-C]

sorry you’re going through this. I’m eGFR 3a but sometimes 3b. I too have smaller kidneys, not as small as yours, with multiple cysts too. I don’t have kidney stones and have other different conditions. Do you know if you have had your parathyroid gland bloods checked as faulty ones can cause kidney stones and many of your other ones too. You ne3d samples of calcium, vit d and parathyroid all taken at same blood draw for accurate assessment of their relationships and levels which can lead to a diagnosis of hyperparathyroidism. This condition can be treated. If you want more info parathyroid. com is a good site

[annon12345 in reply to Nannie-C]

I haven't had those checked. I do take Vit D supplements. I'll have to ask for that at my next apt. Thanks

[userotc]

Trying to be positive, the (only?) good thing about CKD is that it can be well managed naturally ie without medics. Have you considered a qualified Nutritional Therapist that specialises in CKD?

[annon12345 in reply to userotc]

No I haven't considered that. I doubt we have anyone like that in this stupid town.

[nonna70]

Wow! If you have a good relationship with docs at M. D. Anderson, would they be able to give you a referral to an endocrinologist or nephrologist?

[annon12345 in reply to nonna70]

I can ask when I am there in June, typically they only do referrals for cancer related side effects... my oncologist though has been helpful in the past.

[nonna70]

Ask the helpful oncologist! I pray it goes well.

[Grammy80]

I looked at your bio ...nothing there. People could be far more helpful if they had more information. You for sure have a laundry list of comorbidities like many of us...often lower kidney function is a byproduct of many of the meds I'm sure you have needed. It really matters if you are 40, 60 or 80.

Since you travel to Texas, there is a Mayo Clinic in Austin and you can't beat them. When it comes to finances, they are reasonable and work with you. They will also work hand in hand with a physician close to you...their pick. From the sound of your post, you need to have answers or stress is the boogie man that will take its toll. Best of luck to you.

[kellyscats1]

Texas has a very poor health care system.. sadly the cause of my stepdaughers death and her inability to get care..Vote wisely.Depending on your insurance Mayo may not be an ption..upt until recently they did not take medicae at all..

Be your own advocar and become informed..for now your EGFR does not sound too terrible.. avoid nsaids and do the kidney diet. don't fall for those pushing supplements..common sense. no red meat,,, plant based diet.... little salt and lots of water..your labs will tell it all..

luck