Hello everyone. I just got diagnosed with stage 3 CKD early this year. It was (and is still) quite a shock as there were no indications in previous years. I have HBP, but it is under control. My wife just got pregnant with our first child. Although that is a blessing, I also feel quite depressed as I don't know how long I have to see my child growing up.
I am curious in any coping mechanisms to deal with this condition.
Without knowing anything about you, I can only point out one thing. If you are suffering with pain, possibly from an active lifestyle, and are taking an NSAID drug daily, that can cause a drop in GFR. If not, it's hard to say what might be happening.
Hi, thanks. I never use NSAIDs as I cannot tolerate them. The doctors couldn’t be sure either as the actual cause so we will simply work on in slowing down the progression. My eGFR are ranging between high 40s and mid 50s so far.
If your doctors are not sure of the cause ( I know you said you have high blood pressure) but did they offer you a kidney biopsy to gain a better understanding, because you are young.
1 doctor did mention it, but he stated he didn't prefer doing a biopsy at this point in time as it is invasive. I'm not familiar with kidney biopsy and how "invasive" it is. It does sound scary...
It is expensive and they do have to insert a needle into the kidney using lidocaine to numb the area and ultrasound to guide them. You are awake and go home in a few hours. It’s not horrible. I guess if they think high blood pressure is the cause you probably do not need a biopsy but if they don’t think blood pressure is the ultimate cause then I would think they would want to do a biopsy in a young individual.
I have very low blood pressure and no one believed that was the cause, they did the biopsy, and it confirmed that indeed was low blood pressure was most likely cause. So now they finally put me on medications. I’m in my 40s.
Anyways make sure your blood pressure is in good control, and keep your protein intake to your doctor’s recommendation. I was told 0.8g of protein per kg of body weight. I’m 140 pounds so that converts to about 50 grams of protein a day. At first I was so depressed about this disease. I’m still not happy but I guess I’ve come to an acceptance and just try to keep my dr appointments, eat well, exercise, ect. Just keep going, it may be a long long time before you have to deal with other treatments. I wish you the best
Thank you for sharing your own struggles. Yeah, it's quite disheartening when I heard about the diagnosis. 50grams of protein a day must be tough! It's also a challenge for me as I love my protein! How are you coping with the low protein diet and hunger/energy level?
When I went vegetarian (I tried because of my kidney disease) my energy levels went down. So, I added back meat, mostly chicken and fish. I keep my protein around 50 grams, give or take. Once you get in the habit it’s not that bad, but I don’t obsess over it anymore. I use to track on an app daily, even weighing my protein on a scale. That was good because it gave me an idea of how much 50 grams of protein looks like. Now, if I go over some, I go over some. That’s probably bad advice:) I just could not obsess anymore. I pay attention, but not hyper focused. I also lift weights, which my doctor allows as long as I don’t consume too much protein and don’t take supplements/no protein shakes. Not everyone agrees with weight lifting with kidney disease but I have to live my life too and do stuff that makes me happy. I’m stage 3a. If I drop significantly, I’ll probably become hyper focused again. I’m not really more hungry, I’m guessing you could try and fill up more on fiber or carbs if you can. I forgot why right now but a high fiber diet is suppose to be really good for kidney disease. Hope this helps some.
Discuss with your Doctor about your past and current eGFR results. There are options to slow progression such as CKD diet. Also go over Meds with your Doctor for interactions that could effect your kidneys.
Thanks. Controlling diet seems to be my challenge as most foods are focused on carbs and fried stuff here (white rice, noodles). And I have to watch for my purines as well as seems like my Uric acid level can easily rise and my doctor told me to watch for it. It is more difficult as nobody around me, including families and friends, understand about the disease and the diet restrictions I would need.
Any good resources for options on CKD diet?
There are options for tracking CKD diets and recipes on Davita webs site. However is best you contact your Doctor for an appropriate diet.
As has already been indicated in response(s), it is difficult (and wrong) to try to manage your personal condition via this forum. But hopefully you can find a qualified and accredited Nutritional Therapist that can.
See my responses to 2 other CKD posts here eg by april201954, for further details.
Get diet counseling from a nutritionist about proper foods to eat and which to not eat ,very soon .
** And look up DeVitia best foods to eat .
Eat Organic as much as possible your kidneys do not need pesticides.
Eat some cabbage everyday.
Broccoli , Cauliflower , blueberries cherries so on..
Small amounts of meat
Lots of pure filtered water .
Watch too much Potasium
Phosphorus, Salt , and sugar in diet.
And watch this also that are hidden in processed foods .
Cook from scratch as much as possible .
Grow your own organic garden if possible and fruit trees like Apple ,Peach. Cherry. ( not apricot)
Doing these things will slow your CKD way down .
Enjoy your life with your family .
.
Thank you for the tips and hints. Will look further into your list.
Check out kidneyschool.org
Also, DaVita.com has lots of kidney friendly recipes that you can follow easily. My neph suggested that I cut out red meat altogether, which I have. I'm hovering between 3a and 3b stages of CKD and had to have my left kidney removed due to damage.
Thank you for sharing your own experience. How are you coping up so far with the sudden diet change?
It isn't so bad; I was not a huge red meat eater so cutting it out was not an issue. Also my life depended on the changes. It's all a matter of setting your mind to it and doing it. I know it's the right thing to do and I have explained this to my family and afterwards they're very supportive. It's your life and no ands, ifs or buts about it!!!!
It is understandable for you to be anxious. Here was my experience. I first tested as Stage 3a around 1997. At the time, I was in my early thirties.
You can monitor most of the issues your nephrologist cares about with a renal function panel and a comprehensive metabolic panel. There was a period of time they asked me to do 24 hour urine collections, which were awkward to do at work.
In the 24 years between 1997 and when I got my kidney transplant in July 2021, I usually visited the nephrologist every six months until my GFR dropped into the low twenties. At that point, I did bloodwork and saw the nephrologist every three months. there were also periods I saw him every 6 weeks toward the end.
One of the side effects of CKD is that it can cause mineral imbalances in your Calcium, Potassium, and Phosphorous. When my potassium went haywire for a period of time, I did adjust my diet until things stabilized. The biggest issue for me was the high fiber cereal I ate that was high in Potassium. Once things stabilized (about 3 months later), I went back to a diet rich in fruits and vegetables, though I avoided the usual culprits- like bananas.
The rate of progression is going to be different for each of us. For example, I spent 10 years with an eGFR in the 20s. In a 6 month period in 2018, my eGFR dropped from 23 to 11. I made some significant changes in my diet and self-care, and it recovered into the mid to high teens where it remained until my transplant 3 years later.
My point is that while it is unfortunate to experience CKD, you don't have to be a victim. The changes you make will play a large role in how and how rapidly your journey unfolds.
The critical thing is to find a nephrologist you trust and follow his/her guidance. Keep your BP and weight in check, eat appropriately per your doctor or dietician's guidance, and make time for exercise. Never be afraid to ask questions or advocate for yourself. I am an engineer, and I can understand much of my test results. If I don't understand, I ask questions or do my own research to help me understand.
I was lucky in that I never experienced many of the typical side effects associated with end stage renal disease such as nausea or a metallic taste in my mouth. Up until three months prior to transplant, I was swimming 45 minutes 4x per week.
Lastly, pay attention to the long term trends in your bloodwork. It is easy to get fixated on a change in your blood values or eGFR, but your eGFR can fluctuate based on level of hydration, etc. so focus on long-term trends.
I hope some of this helps.
this is a great answer. I’m in my late 40s and my eGFR has been around upper 40s to low 50s the last 5 years. When your eGFR dropped to 11, or 3 months before your transplant & swimming 4x/wk, were you also on dialysis?
Wow, thank you for sharing your own experience. Appreciate to hear these stories as I feel I'm not alone in this. With your diet restrictions, how do you cope with energy levels? I'm in the middle of adjusting my diet, but it's hard keeping up my energy level to do exercises (especially when I limit my protein and carb intake).
indobeat,
During my CKD journey, I was only on a restricted for about six months. This occurred three years into my journey. I had to limit potassium. The hard thing for me was I had to cut way back on the fruits and vegetables that ate. I do not recall being tired (and I was not exercising as much).
The last two years prior to my transplant, my albumin levels dropped to below 3.4, so rather than limiting protein (normal intake is 0.6 g/kg/day) I had eat massive amounts of protein (100 g/day). Once I found protein shakes, I would have one for breakfast (38 g when mixed with 1 cup milk) and protein bars, which gave me another 25 g).
I was not on dialysis. My nephrologist had me get on the transplant list once I dropped below 20 because for my blood type and where I live, he estimated I would get a transplant within 2-3 years, thus avoiding dialysis. It turned out to be 21 months.
I would have kept swimming until my transplant, but I developed an autoimmune disease, bullous pemphigoid, that manifested at blisters all over my body.
Also, just to clarify, my eGFR dropped to 11 in March 2018, but I did not get a transplant until July 2021 (from a live donor).
Which vaccine? Covid? Yes, I got vaccinated and boosted once.
The first thing I would do is get a full list of all your test results and then research each level. I would also do as many have suggested..change your diet. I am on dialysis now. If I had my time over again, I would immediately go on a plant based diet and stick to it. I was always told by my renal team, diet would not make any difference. With hindsight, I know it does. It will be hard but if you don't, then you are in for a bumpy ride. I think we all know how scared you are. We have all been in this situation. You do feel very confused and very alone. You have made a great decision joining this site. The people on it are amazing. Some of them are even more knowledgeable than my medical team sometimes. Its okay to be scared but you are stronger than you think. Start taking one day at a time. You will face many challenges but you will soon take them in your stride. If there are days when its overwhelming, then reach out to the members on this site. You have got this my friend.
Thank you for the encouraging words. Yes, I do feel alone as nobody in my family nor relatives have ever had kidney diseases. I'm glad I found this community. I'll do some more readings on the resources many have pointed out here.
I was diagnosed the same back in 2017 and it scared me to death. I started going to see a nephalogist right away and all they did was do blood work every three months to check my EFG.... the lowest mine got was 38 and I wasnt aware of that bad EFG thank goodness but all other testing came anywhere from 52 -58 ..I stopped all soft drinks and stuck to water.. now my last few tests showed 58 -62 and my last one was 68 and the doctor told me I didnt have to get tested maybe once a year.. I dont even go to the nephologist anymore they werent doing anything but doing the blood work so I just have my primary dr do it for me.. Myself I feel so much better of course I am 75 now and they said your numbers can tend to go lower as you age.. I would say just get tested every few months and check your numbers Good luck
When you 1st find out it is a shock. But as you learn about this disease you will begin to accept that Stage 3 is something you can manage. 40 is young and your nephrologist should rule out any complications, should try to determine the cause if possible and do additional specific blood work. A sonogram is something I would ask for. It took me a few months to settle down emotionally. You can control your diet and your general health and that will help with the CKD. Congratulations on the baby. You'll be around to see your child grow up!
Yes...agree! The eGFR is too low for his age and it's vitally important to find the definitive cause. It could be initiated by most anything - poorly controlled blood pressure, autoimmune conditions, polycystic disease, etc. I'd be seeing a nephrologist immediately or switching to one that gives me the tests and answers. It's wise to get ahead of it instead of mopping up after it.
what was your number on your grf as mine is 50
My latest eGFR is 53
I agree with what others have said about trying to find a cause if you can and changing your diet. Low protein worked the best for me to slow my progression. I just want to send some encouragement to you. Even though I knew I had kidney disease, having my kidneys fail so early was a shock to me, so I can't imagine what you are feeling right now. I had my transplant this February at age 35 and I have three small kids. It has been challenging, but I am grateful to still be here to see my kids grow up. I assume you live in Indonesia? Do you have dialysis and transplant options available to you if your kidneys do fail? Maybe you don't know about treatments yet since you are newly diagnosed, but if your kidneys fail you can use a dialysis machine to filter your blood and keep you alive. It's not perfect and has it's challenges, but it is life saving. A kidney transplant is a good option as well, especially if you are otherwise healthy. I just want you to know their are options and hopefully more will come available with medical advancements.
As for coping mechanisms, what I did to help when I started to feel sad or overwhelmed was to start thanking God for all the things I was grateful for and focusing on living and being grateful for each new day. For me personally, my Christian faith gives me hope and peace in the tough times.
Congratulations on your wife's pregnancy! Try to enjoy every moment!
Thank you for sharing your own experience. Yes I live in Indonesia. I think dialysis is not something uncommon nowadays (although not often discussed). I have not looked into transplant options yet. Do you mind sharing what happened that you got kidney failure? My doctor had three theories so far that might caused mine. First is uncontrolled hypertension (but my previous years' of medical checkups didn't show any problems). Second is an untreated infection, while the infection is now gone, for some reason the aftermath damaged my kidneys. Third is IgA nephropathy, and to be sure on that, a biopsy has to be done. Right now, my doctor wanted me to focus more on maintaining whatever is remaining (better BP control and lose weight) as it might be difficult to pinpoint the exact cause at this point in time.
And yes, the blessing of our first child can be the hope that will light my dark days. Thank you for your positive encouragement. I'm glad I found this forum to at least have a channel to have discussions.
Yes I have a genetic disease called polycystic kidney disease, but mine failed far before the average (about half of the people with this condition have kidney failure by age 70). It can be easily diagnosed by a noninvasive kidney ultrasound (just by seeing numerous cysts and enlarged kidneys). Although it is mostly genetic some people do get it with no prior family history. It does cause high blood pressure. Everyone is different, but for reference my egfr was in the 50s seven years before transplant and I have a faster progressing disease.
You could have your glucose checked to make sure you don't have undiagnosed diabetes, I believe that is the leading cause of kidney failure.
I know untreated/severe strep infections can damage kidneys.
Just gather whatever info you can so you have a good idea of how to best move forward, but don't stress about the cause or think about "what if" I had discovered it sooner. Just from personal experience, the damage is done and the best thing you can do for yourself is find ways to help keep the function you have left and enjoy your life! Especially with a new baby coming, try your best to make joyful memories and not look back on this time as a sad time, I know that is not easy to do but you can do it!
I've wondered if the vaccine caused a decline in my kidney function.
CKD, Stage 3 Symptoms and my Nephrologist.
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Ckd hbp stage 3 lot of life change inquiry.
