so today I went for a second opinion to another neurologist. My last grf was 48. It has been 36.
He didn’t seem concerned. As he said people with stage three can live along time. My creative was 1.2
Which was not bad according to him. He found no blood in my urine. My blood pressure was fine. He is going to do further bloodwork and a 24 hour urine test. He said if all checked out I was good to go for six months. I asked him about taking monjaro
Shots again and he said was fine. The other office said some patients had to go on dialysis. I was relieved that I wasn’t close to dialysis but aggravated I had been asked to go every three months to be told we will keep a watch on it. Was it for my insurance pay out? Any thoughts.
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Its a nephrologist, not neurologist...lolo... If he is doing a urine test and has run labs, he has done what he should. He had you come every three months to see if there was a decline. I do not know why you are aggravated, he did what he should. Now it is up to you to maintain a renal diet and healthy lifestyle to stay off of dialysis....which you would not go on until your GFR was MUCH lower and a way higher creatinine. Be grateful, your doctor is right, you are fine for now.
sorry I am sleeped deprived with new puppy. Didn’t watch my spelling. I’m not aggravated. I’m questioning why new Doc doesn’t seemed as concerned with this diagnosis as the one that had me coming every three months. New doc says stage three is t a death sentence. Said I could come every 6 months. He saw no blood in urine and wasn’t concerned about creatine levels is all I was asking. I’m trying to decide who I need to stick with and any advice. I’ll do better on spelling
Just to pick up on your comment "maintain a renal diet" if I may. By that, I presume you mean a diet that's even more restrictive than a very healthy diet with lower protein etc etc. But there's various comments from trusted kidney organisations indicating that this is unnecessary at stage 3 or earlier. I presume that NKF disagrees with that?
Personally I believe it may be wrong to introduce a restrictive renal diet too early - but on a risk-benefit basis - so likely case-by-case rather than for all.
I think it depends on when "now" is. Stage 1, 2, 3, 4....or at birth? Sorry if that sounds unintentionally flippant on a message.
For example, one risk to consider on a risk-benefit basis is that of sarcopenia (which can be serious) with low protein that would probably be included in a renal diet.
We've elected to closely monitor/control my mum's ckd 3 before introducing restrictions.
The renal diet should only be prescribed by by health professionals who can then take frequent blood draws to make sure all electrolytes and other data stay in the normal range. The full-on renal diet can be dangerous - impacting other body functions and producing muscle wastage, elevating glucose, etc. To double-check IF one's diet needs tweaking, one can check one's labs to see what items are flagged and raise it with the doctors.
Overall, eating lots of fruits, veggies, whole grains and moderate amounts of protein while exercising on a regular basis and addressing underlying medical conditions are the best ways to keep your kidneys working properly.
Yes, indeed, it's always good to stay away from processed foods. We often don't pay attention, but some nutrients also from soil and ground water. I'm glad you mentioned underlying conditions. Those are definitely instrumental in guiding diets. Diabetes, for example is a leading cause for kidney disease yet the renal diet promotes rice, potatoes, and wheat-based products like bread and noodles. These are not recommended for diabetics, it only hastens the pace to dialysis. I've watched this go down - my hubby is a diabetic who has gone through kidney disease, then dialysis and finally transplant. He finally slowed things down, but it was a strict diabetes diet that did it. So, a word to the wise. Everyone should seek professional guidance before setting out on any diet unilaterally. And before making that appointment, please check out one's own labs, see if anything is "flagged", and make that part of the discussion with their professional. We are all different, we all have different issues and requirements. Kidneys rarely cease on their own. Kidney failure is usually driven by an underlying condition. Keep an eye on it.
A renal diet is often combined with a diabetic and/or heart-healthy diet to help manage your blood sugar levels and blood pressure, and help reduce blood cholesterol. Kidney disease doesn’t always happen inside a vacuum; rather, it can happen alongside other conditions like diabetes and heart disease. By focusing on a diet that helps address each condition, you increase your chances of prolonging your kidney function. A registered dietitian can help you with coordinating diet decisions to best meet the condition you’re trying to improve or prolong.
Thank you! One can definitely combine elements of diets. Customization. That's the way to go. As for diabetics, the diabetes happens first, the consequences come later. It's a direct cause-n-effect. Diabetes uses weaponizes glucose to increase triglycerides, cholesterol and more - destroying blood vessels and eventually causing blindness, kidney failure, heart attacks, amputations, and more. It may take a decade or two for these things to happen. Yes, it's a good idea to seek out a "registered" dietician who will take you seriously, do regular blood draws, and follow you over the years. Alternatively, seek out a good doctor who will do that for you.
I am just picking on you about your neurologist... I think we should all see a neurologist. I am confused by your posts. First of all, stage 3 is far from a death sentence. I would not be seeing that doctor. 6 months is a normal visit amount for stage 3. But if you were seeing the other doc every three months, that's a good thing to keep an eye on your levels. I know many people with stage 3 that maintain that level for life.... so you can too. Learn about renal diet. It kept me off of dialysis for 6 years. I was stage 4 so do not equate that with yourself.
it’s fine. My dilemma here was to which doctor I should keep going to. One checks every three months the other is more thorough and doesn’t see urgency in stage 3 with my levels or numbers. I am about to start monjaro and although it has been said can cause lower grf I want to keep watch on it. He said the second one the new one that typically it does show a decline at first. There was a new study recently that came out showing that ozempic and these meds were or helped kidney disease. Go figure. And no offense taken Bassett mom on spelling. lol.
Reply thank u!!!that is what I was looking for. Not judgment. With that being said. He told me I could do the monjaro shot to lose weight. The first time I did it my numbers dropped. They said this can be expected. Any thoughts on the monjaro shots. Etc.
That type of drug has its benefits although it does or can cause issues with peoples kidneys. So you will have to find a doctor who maybe able to test your blood every month to see the effect on your biology and chemistry serum markers.
I am in Australia, so the preferred drug here is Ozempic.
What I do know is the following, which may assist you in your decision making:
Mounjaro is a medication for individuals with type 2 diabetes to help manage their blood sugar levels. However, there are some known side effects, including gastroparesis, gallbladder disease, and kidney damage.
THE LINK BETWEEN MOUNJARO AND GASTROPARESIS
Gastroparesis is a condition characterized by delayed emptying of the stomach contents into the small intestine. It can lead to symptoms such as nausea, vomiting, bloating, and abdominal pain. Recently, there have been reports of individuals who developed gastroparesis after taking Mounjaro, which belongs to the class of GLP-1 receptor agonists. This has raised concerns about the potential association between Mounjaro and the development of gastroparesis.
GLP-1 receptor agonists are a group of medications commonly used in the management of type 2 diabetes. They work by stimulating the GLP-1 receptors in the pancreas, which leads to increased insulin secretion and decreased glucagon release. This helps to regulate blood sugar levels in individuals with diabetes. However, these medications have also been found to have effects on gastric motility, which may contribute to the development of gastroparesis.
The exact mechanism by which GLP-1 receptor agonists may cause gastroparesis is not fully understood. It is believed that these medications may slow down the movement of food through the stomach by affecting the nerves and muscles that control gastric emptying. This can result in delayed emptying of the stomach contents and the symptoms associated with gastroparesis.
The occurrence of this side effect appears to be rare, and the benefits of Mounjaro in managing diabetes may outweigh the potential risks for many individuals
THE LINK BETWEEN MOUNJARO AND GALLBLADDER DISEASE
Mounjaro, a GLP-1 receptor agonist, has been the subject of recent studies exploring its potential link to gallbladder disease.
Several studies have suggested a possible association with Mounjaro, and an increased risk of developing gallbladder disease. Gallbladder disease refers to conditions such as gallstones or inflammation of the gallbladder, and can cause symptoms like abdominal pain, nausea, and vomiting. The exact mechanism behind this potential link is not fully understood, but it is believed that GLP-1 receptor agonists may affect the function and motility of the gallbladder.
One possible explanation for the increased risk of gallbladder disease with the use of Mounjaro and other GLP-1 receptor agonists is their effect on gallbladder emptying. These medications have been shown to delay gastric emptying and reduce appetite, which may also slow down the emptying of bile from the gallbladder. This prolonged storage of bile can increase the likelihood of gallstone formation.
THE LINK BETWEEN MOUNJARO AND KIDNEY DAMAGE
Several studies have suggested a possible link between the use of Mounjaro and an increased risk of kidney disease. The exact mechanism behind this link is not yet fully understood, but it is believed that the medication may put additional stress on the kidneys, leading to damage over time. Additionally, some studies have shown that GLP-1 receptor agonists can cause an increase in urinary albumin excretion, which is a marker of kidney damage.
I've posted before on my ozempic/mounjaro journey. Search under my name for details. MJ allowed me to get off insulin and lose weight. My gfr increased. No one can tell if it was from losing 50 pounds or from the MJ itself. I was stage 4. I even went active, then inactive on the transplant list. When my gfr was below 20 I saw Dr every 3 months. Now that I'm above 30 I go every 6 months. I also see Endo every 6 months and try to space them out so I have labs every 3 months. No one has mentioned that your gfr was lower when doc one said every 3 months. It is higher now and Dr 2 said every 6 months. That completely is in line with my experience. No one should follow a diet blindly. Eat to your labs. Only reduce phosphorus and potassium and salt based on your personal labs. Several studies show a vegan diet delays CKD progression.
it sounds like you should continue to see both. even though, as you say, your neuropathy is connected to your ckd ,both are specialists with different sets of skills. your nephrologist is not as well trained in neuropathy and vice versa.
To me, your post seems to confirm that different medics eg nephros, have different ideas. For example, my mum's is relaxed (more than us actually!) with her fast-increasing albuminuria and is against drugs for her because her bp is normal. Conversely others' nephros wouldve prescribed something according to reports Ive read on this forum and others eg a FB Group.
Also compare your medic indicating stage 3 is a "death sentence" with many reports from respected kidney organisations indicating otherwise eg “With treatment and healthy life changes, many people in Stage 3 do not move to Stage 4 or Stage 5” from kidneyfund.org/kidney-disea...
WE accept this variation because we research, treat and monitor ourselves but its frustrating.
starting a renal diet in stage 3 kept me in stage 3 for over 10 years. At stage 3, it really only meant, low sodium (under 1,500), no dark colas, and limit red meat.
As for your doctors, did your first nephro see you every few months and you were just diagnosed or was it years doen the road that you were still seeing him every 3 months? When one is first diagnosed, it makes to see the doc more frequently to check how progression and labs are doing. After some time, and assuming things tend to be stable, every 6 months is fine. Once you get to gfr of 20, you may go back to seeing nephro every 3 months.
Every six months sounds fine to see your nephrologist. If that seems a long time for you to not know what your labs are then perhaps you can go to your regular doctor after three months to check your eGFR and creatinine just for your own peace of mind
sorry everyone for the comment about death sentence. This is why I went to another doctor because of what I was being told or led to believe. I did NOT join this group to be judged only for answers and help. I agree with Pecan Sandie what a thing for you to say for someone who has been misinformed, watched her sister literally die with her skin seeping and kidneys failing right before me. Why would I be scared! Have a great day.
Ah, that's good! I would go with the neph who wants to see you every six months. If your eGFR is in the 40s, checking blood work to make sure nothing weird is going on every 6 months is usually enough. In addition to seeing the nephro, you are also seeing your primary care doc twice a year, right? The best thing to do with try to get the appointments alternating every 3 months, so you are totally covered.
I think that what the "death sentence" remark was intended to mean was, once you've reached stage 3, you stand nearly no chance of ever getting back to the days of 100% kidney function.
Regarding diet, I was told, once I'd reached stage 5, that I was too far gone for diet to help much. Now, my diet is tailored to getting me off of the dialysis machine sooner. It's not much different than the regular "renal diet". I just watch fluids. Basically, I keep fluid retention to a minimum (low/no salt) and avoid fatty foods the day before dialysis (helps the blood flow without pesky fat embolisms).
Ive been in the GFR 30's for around 6 years now. Had three different nephrologists during this time, At first, new ones ask you to come back every 3 months and then eventually 6 months. However, all of my nephrologists first asked me if coming back every 6 months was all right with me. I've been fine with the "every six months" and know if I want to come back sooner, I can. I struggle with the diets, but I don't give up. I struggle with drinking enough water, but I don't give up. I struggle with exercise especially walking outside in Florida, but I don't give up. BTW not one of my doctors ever said that GRR 30's was a death sentence. Instead, they encouraged me to do what I can to stop the progression and always had a positive attitude. Sorry you had a different experience, but after reading all these posts, I hope you can stay positive and get busy being proactive with your condition. The best to you. Keep us posted.
Oh, and I had a creatinine level of 1.1 twenty eight years ago. My creatinine was 1.4 a couple of months ago. Stage 3a. Am 66 years old. You'll live. And probably for a long time. Think positive. Do positive.
Yes and thank u. I was not properly educated and was running on scared. I’m so glad I have this site. I can now move forward with a different attitude.
There are a number of ways for doctors can interact with patients - some will be "very polite", others will be "very direct" and so on. My hubby, a diabetic, only made big changes when he finally saw a very frank, no nonsense nephrologist who bluntly told him he only had 7 years to live if he didn't make life changes.
Please ignore the following if you're not a diabetic. (I'm assuming you may be a diabetic with "Diabetic Kidney Disease" since you've mentioned peripheral neuropathy, Mounjaro and more.) If you're a diabetic, I personally feel your first, very direct, nephrologist is the one who really cares about you. He has a proper awareness of diabetes. The first doctor noticed the neuropathy occurred; he doesn't want your kidneys to be the next victim. Diabetes is stealthy - no one knows "exactly when" diabetes will strike and could take your legs, heart, eyesight, etc. And here's the thing - it can happen very quickly for diabetics. So, the only way to do that is to stay on top of things. You see, diabetes is a metabolic disorder involving glucose and glucose, of course, travels throughout the body - not just the kidneys. Most doctors will let people drift along until there is no point of return - late stage 3 or stage 4 - simply writing up prescriptions and nothing more. That's not enough. My hubby immediately made dietary changes (see my comments above re diet) to control the glucose, began exercising to drop weight, and managed to go off all diabetes meds but it came too late to stave off dialysis. (Damage done by diabetes over the years can't be undone.) Sadly, when I asked the dialysis center nurse how many were there because of diabetes, she responded, "almost all" were diabetics. So, my advice is to know yourself, which approach motivates you, and go with that doctor. My hubby really values his straight talking nephrologist and has thanked him for his direction and guidance. My hubby and I both wish we had seen him when my husband was still in the earlier stages. He would have avoided a lot of trouble. But we are all different - what works for one may not work for another. In your case, your creatinine is good, there's no blood in your urine, and your blood pressure is good. You are very blessed to have the time to change everything for the good. My hubby's mother was also warned early on of encroaching diabetes, took care of matters, and lived well into her 80s. I see the same for you.
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