I know it’s useless to do so, but I just can’t help with it.
Especially after I learned that GFR decreases at a rate of 1 every year after the age of 40 even for normal healthy people. ( I’ve been attending Google Medical School recently)
I’m 43 years old now and my GFR is 56, although everything is stable. No urine protein, no high blood pressure or anything else.
Do I get to live to 70? Do I get to see my grandchild? My daughter is only 3.....
Will I be on dialysis in my 60s?.......
All these questions just keep lingering in my minds....Life can be so challenging sometimes....
I need your advice.
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smile-hope
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When we answered a previous post about two months back and we spoke about going with a kidney-friendly meal plan. That is a crucial step in slowing the progression. Have you spoken to a nephrologist about targeting your meds for optimum kidney health? You can go to drugs.com and under their MY MED LIST you can enter all of your meds and find any interactions with other meds, foods, and that may hurt your kidneys. Those questions should be directed to your nephrologist for any changes.
Lifestyle changes are required to being successful in slowing the progression of CKD. It can be done. Do it for your family.
Mr Kidney, thank you for your kind reply. Because of your advice, I have been studying the healthy lifestyle for kidney patient , and I learned so much. I agree with you that we should find a doctor that is approachable so that we can talk with him about every aspect of our condition. That why I left my former nephrologist and found a new one, who is very knowledgeable and helpful.
Currently my urea and several other index are out of normal range. I will continue to learn how to manage them with food or supplements.
I used to think a lot about how long I would live too shortly after I was diagnosed. I also couldn’t stop thinking about dialysis specifically because my father had CKD and was on in home hemodialysis. He didn’t have a good experience on dialysis. He passed away at 62 years of age.
It helped me to learn as much as possible about CKD and how it was presenting in my body specifically. I then focused on what I could control: my diet, exercise, medications, working with my medical team.
I made a conscious effort to learn to live in the moment. I remember realizing that none of us (including healthy people) know how long we’ll live. It really is about what we do with the time we have on this earth.
My father passed away at a young age but his memory lives on through his children. The memories he created sustain me even now, over 30 years after his death.
It’s a matter of coming to grips with our mortality. I’ve come to think of that as one of the silver linings of CKD. I’m not sure I would live my life as fully if I didn’t have CKD. I know I wouldn’t eat as healthy etc.
I agree Jayhawker, that it is important to live in the moment. I am 79 and diagnosed at 3b. Learning as much as possible about CKD is helpful and also attending a Davita 101 class proved to be beneficial. By following my Doctors prescribed diet the progression is slowing. Thanks for the good post
“I made a conscious effort to learn to live in the moment. I remember realizing that none of us (including healthy people) know how long we’ll live. It really is about what we do with the time we have on this earth.”
Hi Jayhawker, your post is very encouraging. I agree with you that CKD, like all the other misfortune in life can sometimes be blessing in disguise. It teaches us to adopt a better lifestyle, to learn the meaning of life and to live life to the fullest.
I feel the same as you - mine is 33 and I've been told "we don't need to do anything about that" by my cardio here in the UK. I'm 62 and have taken anti-hypertensives for difficult to control problems since I was 18. It was finally brought under control when I was 47 and has been great since then - but this GFR has hit me like a train. I feel hopeless. I'm on every type of antihypertensive/heart drug and still it hasn't stopped this from happening. Please please take care of yourself, get all the help you can - even demand it if need be. Your life is precious - listen to the wise advice from people here like Mr Kidney.
You have been fighting with CKD like a warrior for so many years. What a journey.
Gfr 30 is a warning sign, but it’s still good, this number can keep you away from dialysis for as long as you live.
So please please continue to take good care of yourself. If your doctor is not very good, leave him and find a new one . Kidney disease is one of the most complicated diseases, so we need good doctors. Mine is due to vasculitis, a very rare immune system disease. Is your doctor sure that your kidney disease is due to hypertension? Not because of other reason?
I can't answer this I'm 68 was hit by a medication induced aKI at 8% now I'm 25 % and it probably won't get any better, But life is good despite being tired I don't dwell on what can't be changed. So my advice would be to talk to a Renal Counsellor before how you're feeling becomes full blown depression. I say never give up, never give in, and enjoy today because none of us kidney problems or not knows what else can happen.
Hi, medway-lady，thank you for your advice. I have been reading stories of kidney patients lately and they just gave me so much inspiration and confidence. I’m feeling better now.
25% is still able to keep your kidneys moderately function and live a productive life, but please keep monitoring it all the time. We will live with this disease peacefully.
I can understand your feelings of fear and despair; they are very normal when anyone hears the words " kidney disease" . I will bet that everyone in this community felt as you do when that bomb hit.
But....
My thoughts are rather than looking at what you don't have, why not look at what you do; that includes possibilities.
First, please stop beating yourself up for not acting on your CKD diagnosis and discussing it with your husband immediately. Turn the page and open the shades as the sun is out behind the clouds.
Unfortunately, kidney disease has no cure, but progression control can be in the story.
As Mr._ Kidney has attested to; diet, exercise and putting together a medical team who listens to and works with you as well as communicates with you in layman's terms and each other- key, so everyone is on the same page.
It is about mindset as Jayhawker mentioned. Don't look at the statistics on paper, but focus on yourself and where you will take yourself. Every person is different and every case is different.
This is not a sentence; it is adopting a new lifestyle.
Google Davita. See if there is a Davita center in driving distance from your home. They offer a free 90 minute Smart Class which is taught by their nurses and staff; it is both supportive and informative.
Speak to them and your nephrologist about referring you to a renal dietician who will come up with food choices which are both appetizing, healthy and nutritious based on your labs. Again, not a diet; a lifestyle.
My husband does not have kidney issues and happily eats my food. He has adopted these choices; has lost weight and feels so much better.
I also use Drugs.com and have the App on my phone. It's right there to educate and give you keys on any medication that you are given; even which antibiotics for a sinus infection are better choices for kidneys.
My neighbor has been a CKD patient since she is 40; she is also a severe diabetic and has adopted a healthier lifestyle and contained the CKD. She and her husband became grandparents during her journey and enjoy their grandson. Prior to the pandemic, they have traveled some over the last 19 + years and go one day at a time. It can be done. Initially going forward is the hardest.
If your nephrologist is not approachable, find one who is as they will be your go to for information and will quarterback your kidney care.
It begins with taking a breath, baby steps and making a few changes.
Bear in mind that this is all a process which takes time.
Please reach out to us at anytime as we are here to support and will reach back.
As I have said prior; you are among friends- always! It will all work out.
Thank you Bet! I’ve been reading your post again and again in the past week. Sorry I didn’t reply to you guys earlier as I have a toddler baby to take care of.
I will seek all the help you mentioned and down load the app for kidney knowledge. This is a life long battle and let’s get ready and be better equipped.
I’ve been reading stories of kidney patients lately, like the lady you talked about, many of them are living a wonderful life despite of the disease. People on dialysis continue to work, do short distance travel, yoga, even basketball.
We have no excuse to give up.
Like you said, it’s not curable, but it’s manageable. Just for that, we should be grateful. Many diseases, when diagnosed, it’s already too late to do anything.
The whole key is to remember that this is a process; go one step at a time- build a medical team, set your health plan and implement it into your life.
My kidney issue is also autoimmune, so I keep an eye on foods that don't cause inflammation such as sugar and take Omega 3 Fish Oil every day. I understand and promise that it will all work out.
It is an annoyance but with healthy eating and monitoring, progression hopefully will be halted.
Manageable once you get your health action plan set.
Your little one must be a joy! Wow! That's your focus and you will have a lot to enjoy.
Stay positive and go forward.
Remember that you have many friends here waiting to share and support when you reach out.
Hi Bet, thank you for your advice. I will study the fish oil you recommended and see if it works for me too. My recent test show I have insufficient Vitamin D, will also ask my doctor about that supplement.
Kidney disease has many aspects to monitor, as it will disrupt the chemical balance of our body. So let’s build our medical team and try to get educated. It’s a life long battle, let’s be patient and resilient.
My daughter is 3 yeas old. Thank God she is a good eater and a good sleeper, healthy and, talkative. ^^
All great advice from my fellow travelers about the kidney journey. It is basically this. What you do is up to you. This disease has two main benefits that other chronic diseases do not. One: The patient can control the outcome in most cases. Although kidney disease is not curable, it is manageable. MANY of us have done so with diet and healthy living which includes a positive attitude. And second: kidney disease is not a death sentence There is always dialysis and as daunting as that may sound now, they have made many changes to types and methods which make it livable.
Become educated. Learn to be in control. And don't feel bad. WE all have been where you are. Its the next steps that are the hardest but the most rewarding. You do not sound like you have other issues such as diabetes or high blood pressure. See if the doctor can find the cause for the decline. Have patience in the process.
The U of Google can be helpful but also not as there is a lot of junk and misinformation out there. Many sites are actually trying to sell you a false hope product. Find a doctor who you feel comfortable with.
Hi, Bassetmommer,Your post is very encouraging. I have come to terms with this disease now after a lot of struggle.
Even when it comes to dialysis, it’s not that bad. The technology of dialysis is improving constantly and the world record of dialysis is 50 years. Kidney transplant is another option.
The most important thing is to live our life instead of worrying and complaining all the time.
My kidney disease is due to a immune system disease. As long as it’s under control, my kidneys will not endure damage.
I wish to encourage you by saying that your premise of GFR decreasing as you age does not have to be true. My GFR was 28 last Feb, 2020. I did some research and found that animal proteins are hard on kidneys. I put myself on a Whole Foods, Plant-Based diet. My GFR is up to 56 and will hopefully continue to improve. I also do aerobic exercise daily, drink lots of water, and stay away from NSAIDs. Smile, because there IS hope!
Ive had kidney disease for over 40 years, current gfr is between 33 and 40, my gfr upto last year had been stable for many years at around 56 so for 39 years of those 40 it had been around the same level. Dehydration plays a bit part on you're gfr level, if you havent had enough fluid, or like I did walked to my appointment about 3 miles in the heat of a summers day my gfr came back at 33! Redid the test and it came back at 41. My kidney disease doesnt stop me doing anything, I walk between 20 and 25 miles a week, watch my weight, cut right down on salt, eat well staying away from too much processed food. I feel well most of the time get tired after exercise and have a 'snooze' sometimes voluntarily sometimes I wake up 30 mins later and realise i've dozed off! I would say, dont let is stop you doing anything you want to do, let you're body tell you when you need to rest, dont stop moving keep active as much as you can and dont let the fear take over you're life. You still have a life to live, dont stop living the life you have for fear of what might happen in the future, especially if this is something that might never happen.
Thank you for your encouragement and it gave me so much confidence, especially “my gfr upto last year had been stable for many years at around 56 so for 39 years of those 40 it had been around the same level.”
You did a wonderful job keeping your GFR stable for nearly 40 years! I think it’s because of your healthy life style, knowledge of this disease and positive mindset.
But still, please consult with your doctor about the recent decrease of GFR, is there urine protein, hypertension, or anything else that should be concerned?
I have regulary consultations with my renal team, blood tests done every 4 months, I do have protein, I take 2 medications for BP, candarsartan and amlodipine, atorvastarin and keflexin as a prophylactic antibiotic. The main cause of the kidney disease was constant urinary infections caused by reflux where the valves were faulty in the tube between the kidney and bladder causing urine to wash back and infected the kidney, this caused scarring and high BP, I had my left kidney removed in 1982 and the tube removed in 1985. Since then I've been well with very few infections and a relatively stable egfr. Upto 2018 I had an annual checkup, with recent changes appointments have increased due to lower egfr and finding I have several kidney stones one of which decided to travel in November last year so ended up in A&E for 6 hrs! I admit the egfr of 33 scared me to death, but repeat test showed it back up to 37 and its fluctuated between 33 and 41 since then. The good thing with kidney disease is to some extent you can control it, stay fit, eat well, watch diet and weight and have a positive attitude. I stay positive (most of the time!), have a renal team that I trust to look after me and try my best to have a positive mental attitude and if things do go awry I do as I'm advised to and have always come through any issues. I understand my condition, am aware that everyone naturally looses kidney function as we age but it most definitely is not a death sentence! I just carry on regardless and if I don't feel something is right I do something about it straight away and don't ignore the symptoms. That's been my kidney journey since 1981, everyone's journey is different its never stopped me from living my life and I hope to continue in that manner for the foreseeable!
A lot will change in the next five years for CKD patients. I'm sure in a few years there will be much more effective treatments. I was reading an article about something called bioartificial kidney which will probably replace dialysis and even kidney transplant in the not too distant future. It sounds promising. Even if that bioartificial kidney doesn't become reality (they say it will), I'm sure things will be better for patients anyway. Till then, just do what your doctors/dietitians and people here said about a life style change and wait.
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