So, I’m a 59 year old man with only high cholesterol and hypertension (both being treated with medication).
My creatinine has been creeping up s-l-o-w-l-y over the past several years, with my internist musing, “let’s keep any eye on this."
Recently, had new blood work, with creatinine up to 1.6 and a GFR of 45, which puts me at Stage 3b.
Met with a nephrologist, with the treatment plan consisting of swapping out one of the BP meds for a different one.
So, for those of you experienced folks here, I’m curious with what the future holds. (I ask this fully knowing every patient’s disease course is absolutely different).
I understand that CKD is not reversible (can’t grow new new nephrons!).
So, do I just continue to monitor creatine levels and urine for protein until reaches a threshold for dialysis, then I’m forever tied to home for PD or making sure there’s a HD center near by? I’m sure there’s more to it than that, but it’s feeling like I’ve just knocked off 10+ years of my lifespan. Guess this is my first brush with any serious illness I’ve experienced in my 59 years and it’s got me freaking out a bit.
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Argelius
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First of all, good for you to get to 59. The next years are up to you and your health team. The first step was to check your medications and it looks like that has been done. There are lots of drugs that help BP that are kidney protective and actually help. At stage 3b, you have a great likelihood of stopping or at least slowing the progress or decline of your kidneys. Simple changes in your life can make a huge difference. There is a lot of information out there on diets and things you can do to help. But the best thing is to see a renal dietician.
We can give you some suggestions for now. Watch your protein intake. Animal products such as beef are not good. Try only consuming chicken and some fish. But even better is to limit all animal protein. Dairy, milk and cream, are particularly hard protein on the kidneys. The most vegetarian you can get, the better. Stop any processed foods, such as soups in the can, frozen dinners or manufactured foods. Go for whole foods, fresh and green, and as organic as you can. Better foods in, better health out. Stop dark colas, limit caffeine intake, especially if you have high BP. Water is best and lots of it. Watch your salt intake. No extra salt at the table, watch chips and snacks. The best thing is to become a label reader. Know what you are eating.
Take care of yourself. Watch out for people who are sick. Practice distancing and wash your hands often. Exercise is important. Find something you like and stick with it. Even a basic walk is better than nothing.
To answer about the future is kind of hard. Many people who monitor their food and follow the practices I have mentioned above stay off of dialysis for a very, very long time, if ever. There are lots of us on this forum. For me, I have been fighting this battle for over 17 years after medications damaged my kidneys. I did not get really serious when I was stage 3 b because no one told me anything. That also is very common. When I got to stage 4, I went into overdrive and did everything I could to slow the progression. I changed my diet and went mostly plant based. I started working out bi-weekly and walking 2 miles daily. My nephrologist told me in 2018 I would be on dialysis in six months. 5 years later, and I am still not on dialysis, but it is in my near future. I have other comorbidities which I have limited control over, and I am also older than you. I have been making preparations and learning what I can. I will be doing home hemodialysis for two reasons. I can schedule my time when I want, and it has the best outcome of all the dialysis for longevity and lifestyle. But my preferred choice is transplant. That is a whole other post.... but you should start to look into what is available where you are. Why? Not because dialysis is going to be tomorrow for you, but it will help alleviate your fears of the future. Knowledge is power.
Ask questions here. There are lots of us who love to offer sage advice, even when you don't want it....lolol
my husband gfr was a 34 he then started taking care of his body stopped advil and ate better and drank more water his gfr three years later is at 61 so I don’t know how it was so low at one point not it’s normal almost for him being 70 years old
ADVIL..... and all ibuprofen is what will destroy the kidneys. That's exactly what happened to me. I was prescribed 1800 mg daily for 3 years. Bye, bye kidneys.
Me too! Arthritis and fibromyalgia started me on the same route. Too many Advil to count. That and type two diabetes, then heart disease. I found my own problem, when I was looking at lab work results. My own doctor had not even noticed that my eGFR was at 32. She never batted an eyelash. She just took me off Metformin and referred me to a renal specialist. I had been seeing her for six years. I wonder how many physicians even look at a patient’s lab reports?
I was a big Advil user before I was diagnosed CKD Stage 3. My doctor told me Advil was one of the major culprits and I have stopped using it. Whenever I need to use any pain killer, I use Tylenol instead.
I had a Primary Doctor prescribe Mobic daily for a couple of years. My new Primary Doctor diagnosed me with CKD and put on appropriate diet. The Mobic could likely have been a contributor to my CKD but were other factors too. I only take Tylenol if needed.
CKD can be managed naturally including nutrition and lifestyle. My mum followed Nutritional Therapy guidelines only for >5y and has almost doubled her eGFR to ~60 and weaned off a BP drug (so avoiding recently reported concerns with kidneys eg link below). 🤞🤞
So I suggest you consider seeing a qualified NT that specialises in CKD for personalised treatment and improved health.
i think low sodium diet - 1,500mg a day, regular exercise, and stopping any NSAIDS or other harmful meds and stopping dark colas, and red meat is the best place to start.
I was stage 3b for about 10 years. It’s scary when you first get diagnosed, but it is manageable.
Please be careful with the results of doubling eGFR and weaning off BP meds just from lifestyle modifications and following nutritional guidelines. While that may be your experience or that of your significant other, parent, child or loved one, most of us cannot double our stage 3/4 lab numbers and stop taking meds with a change in diet. While diet and exercise matter to all of us with CKD, most of us do not double our lab values and wean from medication. I’m so proud for those that have those outcomes and get significant improvement for a relatively simple modification of diet but that is not the experience of most of us.
Additionally, just because there is a published medical study doesn’t make that theory the study is attempting to prove by either “live trials” or meta-analyses medical fact or energy relevant to the OP’s question. Just because there is a medical study published in a journal on dangers of specific BP meds doesn’t mean those studies should be shared. Maybe the OP’s physician has weighed the pros and cons of all meds to treat X’s condition. X is newly diagnosed and comes here to find info on CKD. He runs across some info shared that the meds he takes for acid reflux is dangerous and one person shares what looks like and official medical opinion that my medicine for stomach gas really causes liver and kidney failure. I need to see my doctor now, or as quickly as I can they think and we have created a problem for a newly diagnosed patient they didn’t know they had. We all respond to our illness differently so my suggestions to you is to find a trusted medical professional to lead your care. Make sure you educate yourself on your specific illness and you do your own research, make yourself the smartest in the room on you and your health.
IMPORTANT!
Please take what we say here on a trust but verify basis because the majority of us not doctors and have no background in medicine, but for the most part treating with lifestyle modification, diet modification and adding Mr YouTube influence’s snake oil “special supplement” for a mere $400 a month that cured his stage 5 CKD and my Diagnosis of death. That’s right this experts supplement cure death itself! I digress and I injected some sarcasm, I apologize!
No one will be a better advocate than you for YOUR SPECIFIC CARE AND TREATMENT. Never let anyone unilaterally decide to put anything in your body even a vaccine to protect you against a coming illness they say can kill you. You decide your care. You don’t let a friend or some “expert on jewelry store break-ins” decide whether it’s best for you to break into a jewelry store, you know robbery is wrong. Similarly never let a health care professional or physician put anything in you, your mouth, or your IV without questioning. It is your care own it. Finally, if in the UK and you are satisfied waiting on the system to provide you treatment or answer your questions I’d suggest finding someone here and ask how they are not waiting as long as you. The “old-timers” know how to manipulate your system. I’d suggest you find the best and emulate their behavior. Your system is broken in the UK so find someone here or locally who knows how to game the system. It is evident to me that being your best advocate in the UK system will require you to learn to work around a National Healthcare system that is broken so I believe you need to learn how to beat it from someone here or someone locally because it seems like your system is so broken it is a danger to your health so I’d recommend becoming an expert on how to see the best doctors not the one assigned by the NHS and how to work around the wait times so long I’ve heard/read they are killing patients along with deadly illness and other diseases. Find a work around!
I was diagnosed CKD Stage 3 last year. Since then my eGFR has been stable and I have no symptom. I watched my diet and followed guidelines what I should eat and what I should avoid, do some exercises (which I could have done more) and drink a lot of water daily.
I was kind of depressed when I found out about my Stage 3. Then I came to this forum and read a lots of posts and gave me lots of hope. I know it could never be cured but at least it could be under control. One of the most important thing is to remain positive, that will really help a lot.
I have defeated a very serious pneumonia (20 years ago), kept my hypertension under control and I know I can keep my CKD under control as well as long as I keep a positive attitude. Life is too short and we should enjoy every minute of it as much as possible.
Good that you are diagnosed early and now given a chance to follow a treatment plan to slow the progress. I wished I had had a good neph in stage 3 and that there were meds offered to me. Now there are at least 2 meds available to slow the progress and may or may not be right for you: zafiga and one that starts with a "T". Sorry I can not think of it. You may google and see what meds come up. But there are several. Check with your insurance and your neph. I am referring my daughter to check these out with her neph too. There is a community locally for me BAAKP to support me and I just got a kidney transplant. So there is hope. See a therapist if you want someone to be honest about your feelings with along the way as I cry at times and yet laugh and see the bright side too more often now, and I am grateful too. Also I learned to be more honest with my family about the disease and my future options. And some people live almost 20 more years with a transplant. Maybe seeing who in your family and friends may want to donate in your future. Hope this is not too much. Be positive as much as you can. All the best to you. BB
Welcome, yes it can be overwhelming but you can be I. Control . I didn’t hit stage 5 until the past year I knew of my kidney disease since my 39s I’m 66. There new meds out there to to slow profession of ckd you may want to ask your doc if you qualified for any of those.it will probably be awhile before you go on dialysis and you can’t get on a transplant list once your eGFR hit 20. Dialysis doesn’t mean you have to stay home. If you do hemo you can always connect center where you are traveling to and do it there. If you do pd you can even have your boxes ship to your hotel or place where you are going to. I will be starting dialysis soon I will not let it stop living my life.
I did home PD for 15 months then received a kidney transplant. My life is back to mostly normal and recommend a transplant over PD.
Best of luck to you hoping your kidneys last you a long time. Diet and exercise does help slow it down from what I have read. I went straight to diaylsis & transplant no stages for me. 0-100 in 69 seconds!!
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