I'm on a rollercoaster of emotions right now. Three months ago I had an efgr of 55. Five days ago they rechecked it and it's dropped to 36.9. They ran it again two days ago and it was 36.7. Not one person in the medical office was concerned. They are making the referrals now but had to pushed to do it. Needless to say I'm changing to a new doctor.
My blood sugars have been all over the place this past week. And to be honest I've never been really reliable in taking them because I've always had an A1c of less than 5.9 and it still is. My blood pressure is excellent without meds. Does anyone have any advice on what I need to ask the nephrologist when I see him? I'm stressing because no one can give me any clue as to why the renal function has dropped so far so rapidly. I've been measuring my output and so far it's pretty close to what I take in but it is tea colored. No odor, no signs of infection. At this point I'm terrified my egfr will drop so quickly that I'll need dialysis withing months. Has anyone else heard of kidney disease moving this rapidly? Oh, the doctor never mentioned ckd but I chalked that up with the rest of his issues.
My original egfr was done because I had pedal edema, short of breath with talking, pulse ox of 88. I also had leg cramps, night sweats and itching skin. Can anyone point me in the right direction for more information on what to expect and what to ask?
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There are a lot of stupid general practitioners out there. Make sure you are hydrated and don't eat a lot of protein the night before or the day of the test. You should also stay away from red meat and you should only do light exercise. The basic test is the serum creatinine test which is used to calculate GFR. You will also want the following tests done:
BUN
Albumin
Urinalysis (will test multiple things and also determine if there is protein above the normal limit in your urine which is a sign your kidneys aren't functioning properly)
Additional electrolyte tests (Calcium, Magnesium and Zinc and Phosphorus)
Vitamin D test
CBC test (Complete Blood Count)
I would also suggest not taking any supplements unless approved by your nephrologist. Not even a protein drink, daily vitamin, etc.
Many kidney disorders can present rapidly and there can be a substantial loss in kidney function over the course of a couple months. This loss can be recoverable depending on the type and duration of the disorder before diagnosis and treatment begins.
Hope this helps and keep us updated when you receive the results. Hopefully you can see a nephrologist soon, if not call you doctor and let them know you want the above tests to be done and you can go into the lab this week. You should have the tests done asap since it can take a week for all of the results and you want to have as much information as possible for the nephrologist to review.
Thank you for the information. Trying to find my way through this has me on edge. I do have my creatine level which was elevated but it's not accessible right now. Basically he told me he wants recheck me in 4 weeks. I'm not very familiar with renal disease but I know an efgr should not drop 18 points in 3 months. I've trusted this office for 5 years. I wouldn't even know I'm in trouble if I hadn't pulled up my lab results and looked at them.
I'll make a list of the tests you mentioned and take it with me when I have my next appointment with my cardiologist. My yearly exam is in November and I'm calling this week to move it up to the next available. The office I was with wasn't concerned about the wonky blood sugars he didn't want to add metformin. In hindsight I wonder if my kidney problems are related to my blood sugar.
I have a lot to learn. I'm trying to find a happy medium between renal and diabetic meals. At least until I get in and get some guidance. Thank you again.
You should be concerned. The first thing I would suggest is find another doctor, which you said you were doing.
Then get a referral to a nephrologist.
Dropping that much in 3 months is something that should have a deep dive into the cause.
Yes blood sugar can impact it, but your said you A1c was 5.9 which is an aggregate of your levels, and is a good number.
Your symptoms are indicative of CKD and it is a good thing you went to the doc.
I know you are worried but you are on top of it now which is great. Start learning about CKD and what you can do to slow any progression down. It is possible.
Do you know if they have scheduled a biopsy or an Ct scan of your kidney? They should to look for any obstruction.
The fact that your pee is tea color might mean you are dehydrated. That will impact your lab tests a lot. Did the doctor test for blood in your urine? For now, try drinking more water and change up your diet. There is a lot out there on kidney diets but in the long run, seeing a dietician is smart.
Do you take OTC pain relief? Ibuprofen is very bad for the kidneys as is large doses of aspirin. Are you taking any other supplements or drinking teas that might thin the blood. Did you know that camomile tea is a blood thinner?
And I know it is no consultation, but it is not uncommon for doctors to not inform patients about CKD unless it is end stage. It is something that really needs to change. But coming to this site will be helpful for you.
The good news is not everyone ends up on dialysis. There is much you can do to help yourself.
Hi, you sound like me. In June I was told I had stage 3 kidney disease, gfr 46 microscopic hematuria. 2 days later passed blood ,gross hematuria. Ct scan found small kidney stones. Corrected my diet by what I found on line, low salt low protein, stop processed food and canned goods. If urine is foamy indicates protein spilling out. In July my gfr dropped to 40 and then 36 from blood Drs office. I was worried because I thought would get better with new diet and I lost 20 lbs. Then on September 16th blood test came back and my GFR went up to 50. Haden`t lost anymore weight but I guess it takes awhile to turn around. I am scheduled to see a kidney Dr for first time Monday. Almost feel like don`t need one now, almost. Blood Dr says I have MGUS. Dosen`t cause symptons but increases chance of getting blood or bone cancer or diseases up to 20% over time. 3% of people over 50 have this and 10 to 15% of people over 80. My iron is low so taking a supplement. hemocritic anemia. You will find a lot of good advice here, so hang in there. I hope this helps. Oh yes I am 71, seems the older you get the higher your chances of getting something.
Hey, I hope you're still doing well. Do you have updates on your labs. I hope you've seen more improvement. A nephrologist is a great resource to prevent further decline in kidney function. The Davita kidney smart class did help me see that I can prevent more damage. I've really wish I'd bought the extended warranty because I sure need some parts replaced. Nice to read your post and realize I'm not alone in this although this isn't a journey I'd wish on anyone.
No updates, will see kidney Dr middle of next month.
How is your pH? My renal output was very dark tea colored. After a visit to the urologist and cystoscopy, no infection or cancer, the doctors were saying "I dunno". I checked my pH and I was acidic. In three days I had raised my pH to 7 and the color was pale yellow to white. I'm 4th stage ADPKD (and have been for 20 years) and I keep a daily check on the pH. So far so good. Dialysis is a cash cow for the nephrologists. I'd suggest that you get multiple Dr opinions. Get very informed besides the Dr.s before you make any decision. The medical oaths, whether Apollo or Hippocratic, mean little competition with the dollar. The road is long and I've become cynical, sorry.
Sorry not to have answered sooner. The cardiologist stopped my baclofen, hctz and naproxen right away. My urine actually went from tea colored to yellow so I'm hoping my gfr is improving. No results yet on the gtt, lab work or renal ultrasound but I expect the results this week. I'm on a NAS diet which I think I'm tolerating well. I'm so frustrated with healthcare providers right now. They put patient teaching regarding BMIin every office note but nothing about diabetes, pre-diabetes or CKD. I think every healthcare provider should have to undergo a reality patient experience to see where they can improve the non-existent teaching they do.
I agree with you 100% on the need for doctors to spend some time teaching their patients during each appointment.
I’ve actually reached the point where I take a page with my data from home, and my questions printed to each appointment. I have two copies with me; one for the doctor and one for me.
I title the section with my questions:
PATIENT EDUCATION
I make a point to say several times as I start with new doctors that I can’t take care of myself appropriately at home if I don’t understand what’s going on in my body...
The other issue besides patient education is communicating across all my doctors. And there truly is no real sense of urgency when visiting with many of my doctors. I guess we need to be in cardiac failure to really get their attention🐶🐶
I think you’re doing the right stuff. You’re taking charge of your medical care. You’re doing what you can to become educated about CKD. As you establish your new medical team, be picky. Be sure they are doctors who will spend some time in patient education during each appointment. Also they should be doctors who are current and who you can trust. And finally, their patient communication really is critical. If they don’t communicate effectively with you it’s highly unlikely, in my experience, that they will go the extra mile and communicate with one another.
Jayhawker I'm in the process of changing my nurse practitioner to an MD. I had to dump all of this onto my cardiologist because no one was doing anything. He's a great guy and got the ball rolling. I know ask for copies of all lab reports, office notes, US, x-ray results etc. I plan on taking the current ones to my office visits as well as having the docs sending updates. Trying to navigate through all of this without a definite diagnosis has been frustrating.
I got lost in the shuffle of the medical practice. And I blame the nurses for that. It's their job to give you your test results and no one alerted me to bring in stage 2. And I get a diagnosis
at stage 3.
I'm really working at changing my eating habits. Trying to find balance between diabetic and renal options is not easy. Diabetics need whole wheat but renal needs white. Same with rice, oats and a ton of other things. That's why I'm working on increasing my veggies and decreasing meats, carbs and proteins. And salt.
I’m a type II diabetic in Stage V renal failure but not yet on dialysis.
I just switched to a vegetarian diet with the encouragement of my nephrologist.
But a few things:
.1. I’ve eaten steel cut oatmeal every morning since my CKD diagnosis. It’s been fine and hasn’t increased my phosphorous.
2. You can definitely still eat vegetables and fruit. In fact, I wouldn’t make dietary changes other than low salt and low fat until you hear from a nephrologist that you need to do so.
3. In addition to a low salt and low fat diet, I’d drink water only and at least 8 glasses a day.
Then take a deep breath🐶 Get your medical team in place. And wait for your first appointment with your nephrologist.
There is every reason to believe that you’ll see some improvement in your data once you’re under the care of a nephrologist. Even if not, the nephrologist may be able to either stabilize your renal function or slow its progression.
Hi again! Been reading your posts. Enuff already eh? I have a rare, genetic kidney disorder, NOt kidney disease and ironically in looking for why my liver enzymes were high, found a Stage I mass. Nephrectomy and everything is fine. But my dysautonomia/seizures are related to MS (late diagnosis). That is all normal now.
BUT You mentioned you were looking into plant based change. Its not that you cannot have meat, but PASTURIZED meats. Its what they feed the animals, esp cows and what they inject into these poor animals that is making us sick.
Go to youtube.com and look up interviews and lectures from Dr Gundry. I got immediate relief by changing the way I ate AND lost weight. SuGAR is the enemy causing INFLAMMATION which is why makes our symptoms worse.
I did Not go through sugar withdrawal. I used his protein based shake adding vegatables. I only at organic vegetables and found out I SAVED $$ by not adding "snack foods" or sugary products.
Dr Gundry is a renown cardiologist who now studies food cultures around the world. he wondered why other countries did not have the diseases USA has. LECTINS in foods, even veggies affect the gut which affects our immune system which is in our gut which leads to DiS-EASE.
Dr Gundry will teach you a lot. He even has a cook book and can send you emails to help you. To me, he's worth looking into. He helps folks that are diabetic, MS patients and cardiac issuess for example
Between my cardiologist, nephrologist, nephrologist and family doctor every one of them says low meat intake is best. Protein is hard on the kidneys. Pasteurized meats don't have the added chemicals found in feed but protein is still protein. I've increased my dairy per the nephrologist due to low phosphorus levels. Plant based diets are difficult to not only start but to maintain. It's not the sugar I miss it's things like soft pretzels and homemade noodles. I'll try to check your suggestions out.
Well I was not promoting eating red meat, I don't. But if you wanted to just be aware of where your meats/chicken/fish come from. Many have chemicals/additives/hormones and antibiotics, including eggs.
Just check out videos of Dr Gundry. He is very informative. Most MDs do not have training in nutrition, not even in med school. You can get protein from plants and there are other ways to get your nutrients. I use Dr Gundry's fortified protein shake with almond or coconut milk as dairy is not healthy for us. I add kale or other veggies. Its a good way to get one's vegetables for those not used to eating. Its LECTINS that is the culprit to our gut health. again, Dr Gundry who used to be the head of AMA and a researcher has studied this. Wish more doctors would get educated.
Thanks, I will. I'm pretty much just in a holding pattern with preventing further decline. I did not realize how bad nsaids were on the kidneys. At least I have another doctor who has found relief for me. After 39 years. I'll check out Dr Gundry.
Life after transplant is just that “life”. I have had Symptoms of kidney disease I.e. elevated blood pressure and protein in my urine since 1969. I had a biopsy confirmed diagnosis of FSGS in 1984. In 1987 my brother gave me one of his kidneys and I have been living with that same kidney for 32 years. As I have learned over these years that there is no cure for FSGS and knowing that from the beginning has put me on a course of “moderation”. My intentions have always been to enjoy life and honor God. I have done nothing to extremes but rather moderated everything that I do. In the case of diet I have only extremely limited my salt intake, eliminated sugar. That is not to say I have not had an occasional ice cream, or cake or pie.there is a difference of having a small piece and a whole plate full. My portion sizes are most important. Eat half and take half home. Split one order with your spouse. Eating good options of fruits and vegetables is essential and honorable. I have been a meat eater for nearly all of my 70 years but I only eat it twice a week. I have maintained that a 16 ounce t-bone or 12 ounce ribeye are for the foolish. A 6 ounce portion makes more sense. So Sassysmom best to you it is your life. So live it with joy and gusto but with moderation.
Thank you so much. And I'm glad that I'm not the only one to miss some red meat. I really am trying to eat healthy. I just wish the quality of fruits and vegetables was more consistent. I've decided to plant tomatoes, cucumbers and zucchini this spring. I like the test,of fresh grown and to be honest I don't really enjoy going to town. I only go one a week to pick up my mail.
I'm glad you're doing so well with transplanted kidney. The gentleman who taught my kidney care class had given his brother one and they're both doing great after 20 years. Medic care has come a long way since Dr Bernard transplanted the first heart. I remember the splash that made. We knew that sometime in the future they would become commonplace and here we are.
I'm trying to find the middle between a diabetic and renal diet. I never realized how difficult having more than 1 disease was. I'm like you in that I do occasionally have a small serving of sweets. But I'm not going to lie, sometimes I have a small serving of potato chips. I've learned to leave the salt shaker alone but I haven't yet learned to enjoy salt free butter. I'm actually looking forward to the nice weather and getting some things done I couldn't do last year. So I'm ready to get out and enjoy myself. Well, as soon as the rain and clouds stop. This has been a long dreary winter. Thanks again.
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