I'm here waiting for my next GP appointment (a week from now unfortunately) in agony due to drop in eGFR and increased of ACR from microalbuminuria to macroalbuminuria. I just want to get this off my chess because I'm just very down right now.
Jan 2020 (age 37): eGFR=101, blood-creatinine=85 umol/L, ACR=11.1 mg/mmol (Urine Cr 25.45 mmol/L) => MICROalbuminuria; My GP hush it, she said "maybe it's because of stress".
May 2021 (age 39): eGFR=96, blood-creatinine=87 umol/L, ACR=43.9 mg/mmol (Urine Cr 4.27 mmol/L) => MACROalbuminuria; 2 days after Covid19 vaccine if that matters...
Lifestyle changes:
- pandemic, WFH but still exercise,
- Dietary slightly change: less sugar, slightly more fat [chicken/beef/fish/egg/avocado] due to switch in exercise to endurance sport
- Blood tests showed the effect of dietary change: Hemo A1C went down from 5.8 to 5.6, Cholesterol (total) went up from 4.73 mmol/L to 5.22 mmol/L (above 5.19 mmol/L limit).
As a 39 years old dad with 2 kids and great wife, I can see more Dr. Appointment, and Nephrologist appointment (plus biopsy) coming my way and I'm scared. I'm not a "tough guy".
I'm just very down these past few weeks after I did more googling (I probably shouldn't). Dark mind encroach to
Last year in 2020 when a test result detected microscopic hematuria (I caught a cold/virus that made my pee slightly purplish), I had to go back and forth to multiple Dr appt and blood/urine test. I ended up going to Urologist that requested multiple Urine cytology and eventually ordered a lunch special called "cystoscopy". Last 2 blood+urine test showed no more microscopic hematuria. That "war" was over by Feb 2020 and then pandemic hits in Mar 2020.
In the past 2 weeks I had been in a roller coaster stress:
stress #1: finally got my covid19 vaccine appointment (first dose) but I caught a mild bug (mild sore-throat, mild runny nose) that warranted me to get covid19 test . The off to the race between hoping my bug healed before the covid19 vaccine. Stress still high due to few reports of vaccine post-effect (I have minor thalassemia).
stress #2: after covid19 vax, I monitored any symptoms for 1-2 days with slight anxiety. Opted for annual blood+urine test. Result came back the next day => BOOM, eGFR down by 5 points (though, between age of 37-39 2 years), ACR moved to another severe category.
2 years, 2 tests, both showed albuminuria. My GP downplayed my first test citing for "stress" (yes I was, but I don't think that caused the albumin). I think I'll push her for more tests + referral to Nephrologist before my eGFR tank like titanic.
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A diagnosis of CKD requires blood/urine tests in a short amount of time, like within 60 days more or less. The four tests for a diagnosis would be eGFR, serum Creatinine, B.U.N. (Blood Urea Nitrogen), and ACR (Albumin to Creatinine Ratio). Done over a longer period of time and there are other factors that can influence the numbers. For example, the GFR is a snapshot of the time the labs were drawn. Over exercising and/or overeating, in the two days before the labs were drawn can have an impact.I'd suggest you go to labtestsonline.org and then enter TESTS and enter the name of any test you have questions about and read the easy to understand the results.
There is nothing wrong with getting a second opinion from another doctor, like a nephrologist to put your mind at ease. Your PCP was right about one thing. Stress is not a good thing. Keep in mind that stress can be positive and negative. Neither is helpful and both can have an impact on your mental, emotional, and physical health.
Until a qualified physician makes a diagnosis try your best to relax and enjoy your family.
> Over exercising and/or overeating, in the two days before the labs were drawn can have an impact.I'd suggest you go to labtestsonline.org and then enter TESTS and enter the name of any test you have questions about and read the easy to understand the results.
I stopped all of my exercise a week before the test in fear that they'll find microscopic hematuria. I did one day of 45 mins cardio/kettlebell (low-med intensity) workout about 4 days prior to the test.
I'm just stressed due to an increase from MICROalbuminuria to MACROalbuminuria. Nothing out there suggested that it's a blip and everything pointed to CKD + the issue is permanent.
> There is nothing wrong with getting a second opinion from another doctor, like a nephrologist to put your mind at ease.
The quality of the doctors around me varies a lot. One doctor would rely on dipstick to send me to urology and perform urine cytology (cancer marker). Another doctor would rely on Microscopic urine analysis.
Unfortunately I can't go to Nephrologist; referral is required.
Changing your routine is going to give you false numbers. The labs are to show where you are and not have them influenced by over-eating or over exercising. Don't do anything extra, but follow your normal routine.No insurance bars you from getting a second opinion. It's part of your Patients Rights.
Thank you for your kind words Hidden . I truly appreciate it.
> No insurance bars you from getting a second opinion. It's part of your Patients Rights.
I live in Canada. Our insurance is covered by the basic universal health insurance. I can switch GP but I can't go to specialist until referred.
> If you were to get a CKD diagnosis with those numbers you've be in the very early stages and that is not where most people are informed of having CKD.
I think what depressed me the most is that:
0. most importantly: I would love to be there for my kids + wife and to support them until the old age.
1. there's no cure :(.
2. say they give you meds, the meds could potentially degraded the CKD stage quickly thus halving my life
You are going to work yourself into an unhealthy situation if you worry prematurely. Get a 2nd opinion from another PCP, preferably not associated with the one you currently visit.Twotwo leading causes of CKD are diabetes and hypertension. I have both, however, diabetes was the cause of my CKD. I control it with my diabetes/kidney-friendly meal plan. My HBP is controlled with medication. There are many others causes of CKD, that is for a qualified physician to test for and diagnose.
I was diagnosed in June of 2017 with a GFR OF 32. Diagnostic tests determined that diabetes was the cause. Once I had the diagnosis, I was in a panic as to how it would affect me, my family, and my lifestyle.
I started to learn all I could about CKD. My fears were manageable as KNOWLEDGE IS POWER. Since then my GFR has gotten as high as 65, but more importantly, I have averaged 50 over that time.
I control my underlying conditions, exercise, take authorized meds for other health issues and live the life I want. I control my CKD, it doesn't control me.
Once I was sure of what I had to do to keep on top of my health I broadened my search to what I would do if I ever reached stage 5. I did more research and found that if I ever needed dialysis that HHD (Home Hemodialysis) would be my choice and to continue my favored lifestyle.
So, until you get a diagnosis, try to relax and live your life.
> You are going to work yourself into an unhealthy situation if you worry prematurely. Get a 2nd opinion from another PCP, preferably not associated with the one you currently visit.
I decided to schedule another appointment with another GP within the same medical clinic (my file is there).
> Twotwo leading causes of CKD are diabetes and hypertension. I have both, however, diabetes was the cause of my CKD. I control it with my diabetes/kidney-friendly meal plan. My HBP is controlled with medication. There are many others causes of CKD, that is for a qualified physician to test for and diagnose.
That's true. I don't have DB and HTN right now which concerns me a lot that this is something serious.
> My fears were manageable as KNOWLEDGE IS POWER
Knowledge sometimes scared me even more
> I control my CKD, it doesn't control me.
This is something that I should understand, learn, and adapt to my life. "X doesn't control me". Thank you.
>So, until you get a diagnosis, try to relax and live your life.
For some reason this is something that I can't solve. I need to experience it to know that something is "not that bad" before I can relax. Perhaps because I don't have "faith". Perhaps because I'm not "strong enough".
Thank you for responding to my situation. I really appreciate it!
First, until you’re formally diagnosed, you are only suspecting that you have chronic kidney disease. While it’s hard to wait this out, it is too early (IMHO) to come to the conclusion that you have CKD.
Second, when you see your PCP again, you should visit about a referral to a nephrologist, if for no other reason than to get a baseline data set with the nephrologist for your current renal function. I live in the United States where I am allowed to set appointments with any doctor I’d like; however, not all specialists where I live will see me without a referral... Consequently, I always discuss my wishes to see a specialist with my PCP who then processes a referral for me.
Finally, I grew up with a father who had CKD. I never knew him when he didn’t have CKD. While there were dietary changes to support his renal function, eg, my mother would make meals with 3 or 4 vegetable options. My father always chose those that adhered to his diet requirements. The rest of us chose what we wanted. In addition, all our meals were low sodium and low fat. We ate lots of fresh fruits and vegetables along with lots of fish and chicken. This was good for all of us!
My father worked full time until retirement in his early 60s. They didn’t have effective anemia treatment options then as they do now, so, my father often took a “power nap” when he got home from work. He took his meds and went to doctors’ appointments.
He was a music teacher. So, there were lots of extra rehearsals and concerts and parades and so forth. He taught private lessons, repaired band instruments, and tuned pianos—all outside his regular teaching job. He also had a small jazz group. They practiced every weekend. They also played at least two times a month on the weekends. He did all of this as his CKD progressed.
My father taught my siblings and myself how to live well with a serious, chronic medical condition. I think that was a wonderful gift to give his children. I have only good memories of my childhood. And, he lived long enough to put all three children through undergraduate school, two children through master’s programs, and one child through a doctoral program. He attended weddings for his children and welcomed 4 grandchildren into this world.
So, even if you do have CKD, it will not interfere with your family life or work life unless you choose to let it... So, you can make it a tragic death sentence or you can do what my dad did (and many of us who participate in this forum do); learn how to live well with a chronic medical condition.
I sincerely hope you get good news with your medical data. I also encourage you to read posts from those in this forum. I think you’ll find many of these posts to be encouraging. Most are living well with CKD. There is hope and a path forward, a good path forward, for those with CKD.
> So, even if you do have CKD, it will not interfere with your family life or work life unless you choose to let it... So, you can make it a tragic death sentence or you can do what my dad did (and many of us who participate in this forum do); learn how to live well with a chronic medical condition.
Your dad is a major source of inspiration!!!
Thank you so much for sharing this with me and everybody in this forum.
I'm not a person who wish to discuss about death but my goal in life is to be there for my family whenever they need me as long as possible as I felt that's my purpose in this world (help my family, help others). That means staying alive and (relatively) healthy until 70 probably. The problem is that I need 31 more years to stay alive, not a small feat/task. I do understand that there may be other things that struck me between now and then... (^_^)
How strict was your dad adhering to the diet if I may ask?
My wife, given her biology-focused background, is a blessing from God. She understood these things long before today so she's always promoting fish/chicken and prefer lean meat in general. She also uses less salt when cooking (and prefer avocado oil). Unfortunately we came from a culture that has rich of deep-fried food and we deep fried with canola oil. I wouldn't categorized us as "overboard" with deep-fried, but it's just that there are more deep-fried recipes (and it's easier for kids lunch too, not too messy).
The tough part is the weekend eat-out (takeout or dine-in).
Dad adhered very closely to his dietary requirements. He had potassium and phosphorous restrictions in addition to sodium restrictions and low fat requirements.
We ate fresh veggies all summer and frozen veggies with some fresh root veggies in the winter. My mom had calculations in the margins of her hand-written cookbook. These calculations showed how much potassium, etc, each serving of the entree had with various modifications she made to the recipe. We didn’t eat fried food much. We did have some beef, about 1-2 times a month only though. We usually ate fruit for dessert in the evening.
My mom created the weekly menu. Dad often did the grocery shopping. We had a vegetable garden every summer. Frankly, mom and dad were a great team as far as CKD management went.
Dad developed CKD from severe hypertension. They didn’t have as many options to manage blood pressure then as we have now. His hypertension was so severe that it didn’t respond well to the treatment options available at that time.
Dad had CKD when he and mom married at 24 years of age. It progressed very slowly. He passed away at 64 years of age. Again, this was about 35 years ago. We have MUCH better management options and medications today. Life expectancy is longer today than it was then.
He lived as long and as well as I described specifically because he worked in tandem with his physicians. He did EXACTLY what they said. Then he focused on his family and doing things he enjoyed. After all, there is no point being alive if we don’t live in the moment enjoying every moment to its fullest.
My dad clearly thought he needed to work with his physicians; he needed to do exactly what they told him to do; and then, he needed to get on with living. Frankly, his doctors wanted him to get on with living too.
I attended his nephrologist and cardiologist appointments with him for the final 22 years of his life. I heard him discuss life goals with both specialists including prolonging life via in-hone HD dialysis solely and specifically because my mom needed more time to prepare for his passing. His physicians said they expected HD dialysis would give my dad an additional 12-15 months of life. As dad and I drove home from that appointment, he decided to do in-home HD dialysis to give mom time. He also talked about putting supports in place to help mom after he passed away.
My dad lived nearly 3 years on HD dialysis, twice as long as anticipated. My mom was deeply saddened when he passed as were all of us. But she was ready. We were ready.
Stage V CKD, unlike so many other causes of death, gives us time to prepare. CKD also gives us the opportunity to cherish each moment; the opportunity to live in the moment.
When he passed away, both his nephrologist and his cardiologist called us to share condolences. I have vivid memories of thanking them both for keeping my dad feeling and functioning well for the majority of his life and keeping him alive long enough to prepare my mom and the family for his passing.
I suspect that our doctors want to see us learn to live in the moment too. I know that’s what my doctors want for me. My nephrologist knows what matters to me in life in general. He knows what goals I’ve set professionally and personally. After I share this with him I ask him, much as my father asked his physicians, if my treatment plan will support my goals—can he have me feeling and functioning well enough to do the things I’ve identified? To date, he has consistently responded with a resounding YES, he can keep me running well enough to do what matters so much to me.
So, I’m not looking for cures. I’m much more focused on quality rather than quantity of life. (I’ve got no children though.) And, perhaps most importantly, I’m at peace. I’m committed to taking good care of myself. I’m committed to working with my physicians. And, I’m committed to living in the moment. The rest is out of my control; it’s in God’s hands.
Have you talked openly and honestly with your doctor about your goals? If not, it might be helpful to do so...
Thank you for again, sharing these information that gives me a lot of hope.
> We did have some beef, about 1-2 times a month only though
This one is hard :D. We eat beef once a week but our diet is close to the Asian diet than North American diet so the beef consumption is more like the ones you'll meet in a typical Chinese restaurants: beef (sliced) and broccoli instead of Steak.
> Frankly, mom and dad were a great team as far as CKD management went.
What a blessing!
> CKD also gives us the opportunity to cherish each moment; the opportunity to live in the moment.
I've been thinking a lot about that too. To live in the moment knowing that you have this illness.
> Dad had CKD when he and mom married at 24 years of age. It progressed very slowly. He passed away at 64 years of age. Again, this was about 35 years ago. We have MUCH better management options and medications today. Life expectancy is longer today than it was then.
My dad passed away 2.5 years ago, due to cancer, at the same age with your dad. His passing was abrupt (6 months from diagnose until he got pneumonia and succumbed). It left us with traumatic experience but at the same time we know it's better for him not to go through the experience.
If I can have that 35 years between now and then... I'm definitely will be at peace :).
> My nephrologist knows what matters to me in life in general. He knows what goals I’ve set professionally and personally. After I share this with him I ask him, much as my father asked his physicians, if my treatment plan will support my goals—can he have me feeling and functioning well enough to do the things I’ve identified? To date, he has consistently responded with a resounding YES, he can keep me running well enough to do what matters so much to me.
This is my hope as well. That whatever I have right now, should not interfere with my goals in life: just to be there and healthy for my wife and kids.
> So, I’m not looking for cures. I’m much more focused on quality rather than quantity of life. (I’ve got no children though.) And, perhaps most importantly, I’m at peace. I’m committed to taking good care of myself.
I attempted to have a "cool-down" period over the weekend. One bad night-sleep (emotion, stress) almost threw me away but luckily I think I'm slowly accepted that this is my new life.
Despite a "decent" eGFR (96), last week was my first week cutting sodium, banana, and reducing meat in general (doesn't matter what meat that is). I lost 0.3kg within a week. Slightly happy, slightly demoralized that I can't reign free anymore (^_^).
I told my wife that for as long as my eGFR is above 90, we can still eat outside once/twice a week (it'll be her time-off from cooking) but I'll be responsible with what I ordered.
I also decided it's time for me to start and learn how to cook my own new dietary food (been thinking of looking into plant-based diet and to mix it with my existing diet; no plan to move to it 100% yet).
Thank you so much to share such detailed life-experience! I feel that you're very blessed to go through CKD experience with your dad first and how much your dad taught you about his approach :). It's definitely priceless (at least to me).
First, I’m sorry to hear about the loss of your father. It is never easy to loose a cherished family member. I hope that as time passes his memories will be a blessing for you and your family.
Second, you have so much more renal function than my dad did when he married—I suspect that you’ll live a long life even with CKD. By that I mean longer than 35 years.
Third, you may not need major dietary restrictions. Your labs will be what drives that decision. That doesn’t mean you can’t adopt a vegetarian meal plan for 3 or 4 days a week or more if you wish. That’s your choice. But it may not be necessary contingent upon your renal panel data
And finally, yes, I was most fortunate to grow up with my dad... He provided the roadmap I use to navigate this journey. That has been invaluable.
That is the best advice EVER I started all of this with Graves Disease, an autoimmune disease that causes hyperthyroidism, no cure only treatment much like CKD. I learned that I could remain in remission if I managed my stress. I do yoga stretches every night before bed and that helps tremendously. I'm in stage 4 with an eGFR of 22 I work full time and up until Covid I did 50k races. I still walk 30 min a day and use my rower a couple of times a week. So no it does not have to interfere with your life unless you let it.
I meant to add this to my last post. This is a copy of your Canadian Patient Bill of Rights.
There are many questions to ask the nephrologist when you meet. I have a list below of questions from the American Kidney Fund. Pick the ones you want answered first and write them down, and ask the doctor. Write the answers down as well. If the physician will do in-office visits ask if you can bring someone with you to scribe for you. This way you only have to concentrate on the answers and not worry about writing them down. If they don't allow anyone but the patient to come in, ask if you can record the information. There are many free apps for your phone that can record your questions and answers. Just get permission first.
Questions to ask your doctor
Why is kidney disease so serious?
How did I get kidney disease?
What stage of kidney disease do I have right now?
What do the different stages mean?
Is there a special way I need to eat with kidney disease?
I don’t have symptoms. Does that mean I don’t have kidney
disease anymore?
If my kidney disease starts to get worse, will I feel the
difference?
What do I need to do to stop my kidney disease from
getting worse?
How can I be sure my symptoms are from my kidney
disease and not some other reason?
If I have diabetes, high blood pressure (or both), what does
it mean for my kidney disease?
Are there medicines I can take if I have both kidney disease
and diabetes?
How often do I need to visit you?
Will you test my kidney disease at every visit?
How long does it take to get the test results back?
If I feel ok, do I still need to keep coming to these
appointments?
When do I need to see a nephrologist? (If you are
not already.)
Are there other specialists I should be seeing?
What is kidney failure?
Will I need to go on dialysis?
Will I need a kidney transplant?
What else do I need to know?
You should also ask for a referral to meet with a Renal Dietitian. When that is set up, bring as many hard copies of your labs with you. You and the RD will look over the numbers together and develop a meal plan based on your needs and preferences. This is not a diet. It is part of a lifestyle change. You should also ask about a medically approved exercise regimen that will work for you. Any underlying conditions that can be controlled must be brought under control by medication, meal plan, exercise, and changes to your lifestyle. This is not a temporary change. It will be with you for the rest of your life. It can be a rewarding life, if you take it seriously and plan to live a long and happy life.
I was 66 when I found out. By following my meal plan, keeping my diabetes and hypertension under control, taking all meds as prescribed, keeping appointments, exercising over the last four years, my GFR has averaged 50. Now that I'm fully vaccinated I plan to resume my travels. I already have several RV trips planned. Should the day ever come when I'll need to be on dialysis, I'll be able to continue to travel and do my own dialysis.
There is a good life available after the diagnosis, just a different one than you expected.
This sounds like a stressful time. One that many people, like yourself, on this forum have experienced. It sounds like you are experiencing high levels of emotional distress. These feelings are natural when having a health concern - particularly as you are someone who focuses on health and living well.
Please be kind to yourself. Have you spoken to your wife? Have you spoken to your GP about suffering emotionally due to these health concerns?
Emotions are sometimes hard and tough to deal with - the world can sometimes feel like a difficult and hard place. Please will you speak to your GP as a matter of urgency regarding your emotions?
Please consider a quick call to these people. I say this as a person who has had problems myself and that talking to someone who understands emotional distress is as, if not more important sometimes, than sorting kidney concerns out immediately.
I wish you all the best my friend, please speak to somebody about how you are feeling. Please listen to mr kidney about getting that nephrology input. Look after yourself like you would if it was your wife who was unwell; with love and kindness; stand up for yourself and be your own advocate. You do have the ability to do this. You can do this.
Thanks for the input Bluerain1 . I speak with my wife every day about this and she's been very understanding so far.
> It sounds like you are experiencing high levels of emotional distress
Yes I am. It's been getting better after a few days though... so that's good
> I wish you all the best my friend, please speak to somebody about how you are feeling. Please listen to mr kidney about getting that nephrology input. Look after yourself like you would if it was your wife who was unwell; with love and kindness; stand up for yourself and be your own advocate. You do have the ability to do this. You can do this.
I really appreciate your empathy! I have since able to get a referral to Nephrologist.
Hi Glug. I understand your anxiety - I suffer from it too although my husband, now on dialysis, lives life with very little distress. I have imagined myself planning a funeral, I have imagined myself living alone with no purpose, l have imagined medical bills swallowing up all our assets, and on and on. Then, when my hubby did go on dialysis, I suddenly realized that people can actually live without kidneys. That's why it was invented! And, even more important, I realized that none of my worries came true. And that's when I recognized I had wasted a lot of time and energy on negative thoughts and hand wringing. (I actually asked my own doctor for stress relief medication, at one point, which he graciously offered. You can do this too.) I now frequently remind myself to fully live in the present, not the future, because the future isn't here. And I remind myself to recognize and separate myself from my supercomputer brain when it tends to go off on it's own with its imaginings and narratives. Being human is both a blessing and a curse, in my opinion. Lol. You've taken a concrete step in making the decision to check in with another doctor. That's good! It frees you to engage in other satisfying activities right now. "Live today - not yesterday, not tomorrow. Just today. Inhabit your moments, don't rent them out to tomorrow." (Jerry Spinelli) Sending encouragement that you'll find yourself coming out on top of things!
> I have imagined myself planning a funeral, I have imagined myself living alone with no purpose, l have imagined medical bills swallowing up all our assets, and on and on. Then, when my hubby did go on dialysis, I suddenly realized that people can actually live without kidneys. That's why it was invented! And, even more important, I realized that none of my worries came true.
Right now, I'm "you" (mindset wise), but I'm the one with the potential CKD (hahaha). I personally am afraid of the possibility of having to go down that road even though PD/HD is great! My mindset is to hope and stop (and if I could, reverse it) the progression.
> I actually asked my own doctor for stress relief medication, at one point, which he graciously offered. You can do this too.
I'm debating about this. I try to reduce meds because now I view meds are bad for kidney. The most that I'll take is probably melatonin tablet to improve my sleeping time.
> I now frequently remind myself to fully live in the present, not the future, because the future isn't here. And I remind myself to recognize and separate myself from my supercomputer brain when it tends to go off on it's own with its imaginings and narratives. Being human is both a blessing and a curse, in my opinion. Lol.
I'm going to repeat this: you described the exact mindset of me right now: worrying too much of the future while the future isn't here. My brain is a supercomputer that can overanalyzed different "execution branch" (pardon me, I'm a software engineer (^_^)) with no terminating condition!!! :). Yes it's a blessing and a curse (well, I shouldn't say curse because it's ... my own issue).
> It frees you to engage in other satisfying activities right now. "Live today - not yesterday, not tomorrow. Just today. Inhabit your moments, don't rent them out to tomorrow." (Jerry Spinelli) Sending encouragement that you'll find yourself coming out on top of things!
I was upset during the conversation with the other GP (she slammed me down a few times, didn't really explain well) but I managed to get Nephrologist referral so that's a progress. After that call, I felt slightly better: I know the next step now => talk to Nephrologist.
Thank you for sharing your experience and advises. I hope your husband can continue to inspire us both and stay healthy for a long time!
Stress and routine changes will, as Mr. Kidney noted, play havoc with your labs. First don’t worry or be scared about the endgame. What is the point? Don’t we all know the endgame of CKD....unfortunately yes. For those of us who have anxiety and panic disorder there is a wonderful mantra that is appropriate in this case. That is, “worry only about what you can control, not what is out of your control.”
In your case, if the CKD has you outa sorts then get your diabetes and HBP under control. I don’t know about diabetes as I have been super fortunate to avoid that issue so far. However, with a good doctor the HBP should be easy enough to control and with a good doctor and a good eating/exercising plan the diabetes should come under control. If you control those things it will definitely help the CKD. Is it the answer, maybe so in your case since there is no cure. Regardless, it is a great start.
Also, with your recent illness your labs are going to be off due to those issues as well. So unfortunately you’ll have to do what most of us do and go to the doc multiple times to have labs done and probably will not get a true reading until you are healthy again. So take a deep breath, get a good doc if you don’t have one, control what you can control, eat right, exercise, and don’t stress. If you need help with the stress/fear go see a psychiatrist/psychologist who will give you the tools to deal with the stress. Sounds like a lot in a short period of time so maybe you have a conversation with the doc you trust and slow down with all the tests. I wouldn’t think your CKD would progress uncontrollably in a couple of months. I understand that things are different in Canada but I assume you have options and I can’t stress enough that you take charge of your healthcare. If you do not the system will eat you up and spit you out. Be an advocate for yourself because no one will be as good of an advocate for you as you. Make sure all providers know you are a real person with real concerns and a real backstory not a number they just count for the day. You’ll need to educate yourself and speak up for yourself but if you have good providers they will recognize that you are a human being and treat you as such.
It is not the end of the world but it can seem like it if you feel like a hamster on a wheel. Take time for yourself and family and realize that CKD is a progression of generally many years so the endgame is not right around the corner. Finally, come to places like this for support but remember no one here is a nephrologist or a medical doctor. We have our stories and experiences and while there will be similarities they are not your experiences. Therefore, educate yourself and Mr. Kidney recommends so great resources, control those things in your control, take care of your mind and body, and get great docs if you don’t have them. We will all be here to support you any way we can as you continue your journey with CKD but you must put you and your family first for the best outcomes. Good luck my friend!
Every kidney condition is unique to the person. You need a nephrologist to manage every aspects of your condition - mix and match of ALL your meds, lifestyle, health, tests, etc. I was diagnosed with kidney disease. I did the logical steps of "Prevent, Prepare, Embrace" and worked with my Nephrologist. 30 years later, I am a kidney transplant survivors. My Nephrologist is now also managing my new lifestyle and maximizing the benefits.
Do not self analyze or self med. Find the right Nephrologist for you - he will be you partner in your journey.
> Every kidney condition is unique to the person. You need a nephrologist to manage every aspects of your condition - mix and match of ALL your meds, lifestyle, health, tests, etc.
I kinda hope that my situation is not unique that the situation is known and the treatment is somewhat guaranteed but I suppose that's too naive :D.
> I was diagnosed with kidney disease. I did the logical steps of "Prevent, Prepare, Embrace" and worked with my Nephrologist. 30 years later, I am a kidney transplant survivors. My Nephrologist is now also managing my new lifestyle and maximizing the benefits.
30 years from your CKD diagnose? Whoa!!! Excellent. Mind if I ask you , when you had your transplant?
My only hope is that with my existing numbers/health condition (my age, my eGFR), I can live long enough to avoid PD/HD let alone transplant. but I sense that's a fool's thinking.
> Do not self analyze or self med. Find the right Nephrologist for you - he will be you partner in your journey.
I got a referral but I don't know the name yet. Hopefully the Nephrologist is good!
Thank you for your support and encouragement! I appreciate it, Okiksaints1955 .
My eGFR was low 20's and creatinine was mid 200's 10 years ago. My Nephrologist was able to extend the kidneys' functionality for 10 year's and advised that he could still extend it by 1 year with proper meds, diet, etc.
But he said, if there was a proper time, this is it (by-pasing dialysis). Before surgery, my eGFR was 8 and creatinine was 535. But still felt good, with no effect on my daily activities ( I run 5-8k daily up until 2 days before the surgery).
I found the right Nephrologist 14 year's ago and he was a life saver. A real partner in my journey.
Congrats on your transplant and hope you'll continue to run again.
Speaking of running, how are you able to run 5-8k every day given the dietary restriction?
I used to run 2-3x a week, avg 6-7km and I do 10k once a month. That was before I got mild sore-throat leading to Covid19 vax + Blood test + stress fallout.
After the blood test, I decided to adhere to the recommended:
- low protein (0.6g x body weight)- low potassium (avoid banana, or only eat half banana for my oatmeal)
- low sodium (overall we use less sodium already)
I did increase my carbs in-take a wee bit where my lunch/dinner used to not have white-rice at all (veggie + meat only) to veggie, white-rice (small portion), less meat mainly because my Hb1AC level is "decent" (5.6, 6.0 is considered diabetes).
I'm struggling with exercise a little bit because Run/Bike burns tons of calories and sweat (sodium). I easily got "bonked" after my adjustment (I used to eat 1 banana before run/bike now I rely on my breakfast/lunch carb intake).
My Nephro prescribe 1 big meal ( BFast), 1 small meal and snacks in between. I carbo load (1-2 cup of rice, + veg and fish) at BFast. He also prescribed Velphoro with BFast - my poop turn black. I think it encapsulates all the bad nutrients and dispose them so I do not absorb them. I have not eaten banana in years. I finish 1 liter of water before my run and another 500 ml after. Lots of discipline.
He also prescribed 1000mg sodium bicarb twice a day. 100 mg allopurinol daily - to get rid of the protein urea.
That is the unusual thing with my case, I do not feel any worse. I think it helped that I am at the stage of "acceptance" for many years already. I was at peace with my condition (embrace it).
Take care, be well. And thanks for the well wishes.
Big meal on bfast => 1-2 cup of rice cooked right? not pre-cooked.
> I finish 1 liter of water before my run and another 500 ml after
I found myself sluggish if I drank too much before run (or I may have to pee before I went out, which defeat the purpose of hydrating?). Did you finish 1L an hour before the run?
Rice - cooked enough for 2-3 days, frozen, then steamed or microwaved before eating. I plan my meals in weeks.
1 liter is consumed within 2 hours before the run, 300-500 ml during the run, another 500 within 1 hour after. 1 consume at least 3-4 liters a day ( and pee a lot).
Yes, 1 big Brunch meal (with Velphoro), 1 small meal at 4pm. And lots of healthy snacks in between.
I look at food as fuel for sustenance, not to enjoy. It takes away lots of the craving.
Works for me (lots of discipline and getting use to). May or may not work for you.
We all felt terrified when we were diagnosed with CKD and no advice was forthcoming from our doctors. However as others have said - firstly wait till you actually get that diagnosis - secondly, educate yourself from this forum and books and change your diet and exercise to ensure that you stabilise or even improve your chances.
i reversed my stage 3 to stage 1. I got on to vegan diet Leached every thing required cooking. Stopped weight training completely continued with walks. Still on oral tablets after 22 yrs being diabetic at 72. do yoga any form it does not matter . my case diet did play a very important part. creatinine and meats i found do have a relation . Got corona recovered 3 days back, my sugars shot sky high ! doc told me to get off all types of breads and rice, result was astonishing . so just surviving on pulses, vegs and fruits ( and NO No bananas) now used to it. on recovery im getting into low bp at times why ? Ps my 2 shots of covishield before getting it saved me.
I must be an outlier as I was not scared of the diagnosis as I'd already dealt with one chronic condition. I looked at it and still do as an opportunity to learn as much as I can. I always have a written list of questions for my doctors and I won't leave without an answer. If it's unclear I do the research and then ask some more questions. Many people go through life eating fast food, not exercising, and basically living an unhealthy life and then are shocked when a disease pops up such as diabetes, high BP, heart and kidney disease.
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