I finally had an online appointment with my nephrologist and sent her the last lab reports (with Cystatin C). She had a look at them and said there's nothing wrong according to the test and everything is normal!
Creatinine 1.3 — Reference range 0.6—1.4 (GFR 73)
Again, I asked her about the increase in my serum creatinine and decline in my GFR
6 years ago 88
2 years ago 83
Last year 80
And now 73
and she said that gfr isn't that important!!! (what???) and though there's an increase, it's within the normal range... and my cystatin c is normal (1 mg/L — Reference range 0.4—1.2) so my kidneys are doing well.
She was abrupt as usual and didn't seem to wanna explain more... She even closed the chat window before I'd thanked her and said goodbye.
Am I really being hypochondriac here?!
Even my Cystatin-C-based GFR (which is said to be more accurate because it doesn't fluctuate like creatinine) is still 85-87 (according to kidney.org), and it's stage 2! Are all these websites and articles wrong?
I really wanna believe what she says and get back to my normal, no kidney disease life. But can I ignore everything?!
What if there's a problem and if doctors find the cause there'll be a chance to preserve the remaining function?
Should I talk to another nephrologist?! Cause I was going to. This appointment was booked a few months ago so I just wanted to use it.
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Sharam
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She said all is well...then do a happy dance and relax. You are nowhere near a stage where kidney disease is prevalent. So enjoy your life and celebrate and stop worry about it. Have the tests done annually. Keep up the healthy lifestyle. Watch the OTC drugs and supplements. The kidneys do decline with age. They are getting away from the GFR as being the main indicator of CKD. Yes, you have a decline, but the rest of your numbers are great. I would be more concerned if that was not true. And maybe talking to a professional about your worries is not a bad idea. Count your blessings. There are so many of us who wish we were in your shoes.
I actually got up to dance and then remembered what the other nephrologist had said so I just sat back in the couch 😂
I know and you're right. There are many people who wish they had my results. I'm not taking that for granted. And I'm grateful for having found this out fairly early and I'll always count myself lucky (I mean not as lucky as those who don't have ckd but anyway lol)
And of course, I'll do everything you said. I'll keep up the healthy lifestyle, stay away from OTC drugs, and will try to enjoy my life.
It's just that the doctors don't even seem to wanna know what has caused the decline (although mild). They just make guesses without doing anything. I actually do have some abnormal results in some other tests unfortunately. My serum complement levels are a little low (c3 and c4). My beta2 microglobulin is a little high. The other nephrologist said it could be caused by inflammation and could be the culprit.
The question is, if the cause of kidney disease is inflammation, isn't it the neph's job to do something? (Although this neph didn't even bother to look at those results when I asked her if it could be a possibility)
Even if I don't have ckd, shouldn't they do something about the inflammation?!
I read somewhere that some types of kidney disease are very treatable if the root cause is treated. I just wanna slow this down as long as I can... I'm just afraid that one day I might come here and say the cause was this, doctors could've done something to slow it down but they didn't...
Run with the rod that you have been given a good report from your nephrologist.
As far as her abrupt personality; remember that each doctor has their own beside manner and things going on in their office on a given day.
If you feel that your nephrologist is not listening to you, answering your questions and explaining labs etc to you in basic language, communicating a health care plan to you; basically not giving you the care that you feel you need, then you have the choice seek another person who may be a better match for you.
Have you met with your PCP about your nephrology concerns as well? He/ she may help by reviewing your overall health and give you some ideas going forward as well as reassurance.
We are here to support but intimately, it's up to you.
My PCP is actually a little concerned, and advised me to consult the nephrologist to pinpoint the cause of the decline. And that's what my nephrologist doesn't seem to wanna know now. She's probably not interested in taking action unless I'm stage 3. Well, this is how I feel.Unfortunately I have a few more health problems that are making things complicated. They share symptoms and some of the abnormal lab results can be cause by any of them. Like low c3 and c4 and high beta 2 microglobulin...
Thank you so much. I'm trying my best to stay positive. I really appreciate everyone's support in this forum. You're awesome people.
One day at a time. Update your PCP on the results and discuss your overall well being at this point.
Thought is that he/ she knows all of your health issues and knows you best.
Discuss how you are feeling about this your worries, unanswered questions and concerns going forward.
Perhaps he can offer support and reassurance to you at this point.
Also make sure that the specialists treating your other conditions receive a copy of your most recent labs and visit summary from your nephrologist, so everyone is on the same page.
As far as the support here; I speak for all. You're very welcome.
You should relax for now don't let anxiety hurt your health especially the kidneys. It is true that egfr is not important because it is a natural aging process besides it is an estimate not an absolute. At this point it is not your kidneys you should worry about but your heart, stress and other conditions if any . Clinical protocol you are not required to see a Nephrologist but to follow up with your primary care.
You're right. I'm trying to get a control of this anxiety first. I'm also planning to visit a cardiologist... It wouldn't hurt to have a checkup!Thank you very much
Why do you need a cardiologist.? Let your PCP order a treadmill and ecg. Then see a Cardiologist if anything is wrong. They are booked far ahead with patients following up from quadruple bypass, a-fib, and life threatening cardiac problems. I used to be a cardiac tech/paramedic.
Preventative tests should be done by the PCP and not involve specialist unless necessary, as a rule.
I had shortness of breath so I thought I'd have it checked. Ladt year, my echo, ekg and treadmill were almost clear. My heart rate recovery was kind of abnormal though (my maximum heart rate was 167 and my heart rate recovery in three minutes : 158, 124, 115) it was the only abnormal thing...
Well, the system is different here. We can visit specialists without referrals. I don't know if it's a good thing or a bad thing 😂
Honestly you still have a lot of time here on earth. I wouldn't just take one word. Mine was probably in that range too at your age. Now 20 years later... Better just live like you have CKD and make better choices.
From what most people say, most doctors don’t consider it an issue until stage 3 and won’t really bring it up or push the issue until it’s at the stage of 3-4, so they prob won’t even entertain it. I’d say most experienced doctors would see the decline over time and tell you somethings wrong, but the best course of action is to eat healthy, stay active, and do what you can to keep your kidneys healthy and preserve function.
Also, I’d recommend finding a new nephrologist for a second opinion who’s a bit more open to the new ways to tackle ckd. The younger doctors seem more open to new updates in treatment and stuff from what people have said. Also a renal dietician may be able to help too. I’d say go for a second opinion to see a younger or more open minded nephrologist who’s maybe more up to date on the newer science behind ckd.
I've been thinking about talking to another nephrologist. I had booked this appointment a few months ago, so I thought why waste my insurance like that! Let's use it lolIf the other neph says the same, and the delayed diagnosis makes me feel worse, I swear I'll come and haunt all my nephrologists after I die lmho
Yeah. It's not their life we're talking about!Some doctors tend to downplay problems.
A few years ago I went to the doctor complaining about my painful lymph nodes. He only examined them and said it was ok. It kept getting worse and I had to go to another doctor who ordered an ultrasound and some tests, and it turned out I had thrombocytopenia and later I was diagnosed with ITP...
That's one of the reasons why I sometimes doubt what some doctors say. It's happened to me a couple times... Maybe I'm not lucky when it comes to doctors lol
My creatinine is normal (.8) and so is my gfr (>90) and I have kidney disease. I have IgA Nephropathy. What is your proteinuria? Just because your kidneys are functioning well now doesn’t mean you don’t have it. What led you to see a nephrologist in the first place? You may be fine but it never hurts to get another opinion.
I'd feel like I won the lottery. Stage 2 is fantastic. She was abrupt. Find a nicer Neph if you like but you still should rejoice. I think she is just so overwhelmed with patients in Stage 4 and 5 in failure on dialysis that she can't spend time "coddling" Stage 1 and Stage 2 patients. That is sadly the way many Dr.s see it. They only spend their good bedside manner on the patients who they feel need it the most.
I say that as I worked with physicians for my entire career. Many are sweet with everyone, but many others aren't.
Plus medical staff is overwhelmed with COVID and she probably thought you'd be thrilled and didn't understand.
I would suggest taking the Kidney School Online Class through DaVita. You can interact and ask questions there as well as learn about the stages of CKD and how to treat them and how to prevent progression to the next step.
By controlling your diet, exercising, watching BP and comorbid health issues you can maintain Stage 2 for decades if you work at it.
I just got out of Stage 4 but only due to medication, not anything I could do about it on my own. Prednisone is a steroid and the side effects are not making me feel well, but it has helped kidney inflammation.
I am happy for you. One day if you get into a lower stage you'll look back and see why you should have been happier.
Without Prednisone my eGFR is 28. I'd love to hit 73. Even with Prednisone it's 42 and who knows if it will last it's only been a few months.
You're not a hypochondriac, you are concerned about your health. But you need to believe the Dr. and move on with life and enjoy it. Get tested every 6 - 12 months and follow it. Stop making it the focus of things.
Get another opinion. I think you need one for your peace of mind.
Stage two is good yeah! But no kidney disease would be awesome hahaha just kidding Well, I don't know... Maybe you're right. They're probably overwhelmed with patients in stages 4 and 5...
But she could've at least told me things I already knew (like cut down on salt, control your blood pressure, exercise, ...)
She said everything is fine as in "You have no kidney disease" But it's just obvious that I do, even though it's mild!
I don't mean to act like someone who thinks it's the best end of the world, cause I'll do my best to live a normal life, but I hate it when some doctors downplay health problems just because it's at an early stage... I'm sure they wouldn't say that to themselves if they dealt with it.
I remember one of my doctors told me the cause can be inflammation since I have ITP and I have a few abnormal things in my blood. Unfortunately she didn't do anything about it and told me to talk to my hematologist (who doesn't wanna take any action about it)
So, I was thinking what if treating the inflammation could improve everything. What if the reason my plant-based diet didn't work much is that there's inflammation?! That's kinda hard to ignore...
Yes, that Kidney School class must be very informative. I'll try to take it asap.
Thank you so very much as always for your kind comment, Sophie 😊
The kidney school meets several times per week at various hours for a 2 hour online session.
There really isn't need for a Neph at Stage 2. I was never referred to a Neph until stage 4.
That's why she doesn't think you need to come there and the Hematologist isn't sending you all over for more exams since it's so early and manageable.
No need to tell you what you already know, that is the dietician's job, not the Neph.
Be happy, find some enjoyable hobbies, and live your life to its fullest for the next 50+ years without focusing on kidneys unless you get to Stage 3B or Stage 4.
Best wishes. Smile and enjoy life, please don't worry.
Sharam: STOP....you're driving yourself into a dark hole with your anxiety. Please consider seeing someone for your obsessive thinking about medical issues. You need to educate yourself via therapy as to how to block those disturbing thoughts. There isn't anyone on this forum who would not want to trade places with your numbers. Right now, I'm sure your nephrologist is busy trying to find out the cause of kidney disease in patients who are in stage 3 and 4 and 5. You being in stage 2 is probably not high on her list. You have a life to enjoy. Please consider getting help. Most importantly, you need to find out why you're so worried about medical issues.
I know, you're right. Actually, I'm much better now compared to a few days ago! And my shortness of breath is gone (it was probably because of anxiety 😅)But anyway, I'm going to visit a therapist in a few weeks for my anxiety. Hopefully, he/she won't prescribe pills, cause apparently all the pills are bad for the kidneys lol
Actually, I'm worried about this medical issue cause it's happened to me a few times before. My doctors downplayed the problem saying there was nothing wrong, sending me home happy! and later it turned out I actually had problems...
I think I also find someone who can help me with my bad luck 😂
Good grief Sharam. I have an autoimmune disease that should have killed me 10 years ago, a blood cancer that the hemotologist told me I had 36 months to live 7 year+ ago, and Stage 4 CKD. I'm not freaking out at all. If I were all stressed and full of anxiety, I'd probably be dead. Attitude is everything in dealing with anything in life.
A therapist will teach you calming techniques. I'm not dismissing anxiety as it's a real condition and hard to control but it isn't doesn't need to take over your life. You need to learn to control it, as you learned about how to handle CKD diet. If you can't control it on your own, then meds should be considered and don't think you'll get every or any side effect listed. I'm on 12 meds to get through the day including pain meds. Consider yourself lucky. I am fortunate I don't have anxiety, and feel for those who do, but over-dramatizing health issues to those with health issues far worse than yours can get annoying. There is an Anxiety Forum here which may help you.
That's all I'll say about that. Seeing a therapist is a great step. Forget pursuing other physicians and focus on mental health for now. If the first therapist doesn't help, find another, they all won't click with you.
Its possible that you could have anticipatory anxiety, where the dread you experience before an event ends up being worse than the event itself. Was relieved to know that you're considering seeking professional help. Just as diet is known to effect the kidneys so does stress. Keep us posted and good luck.
Not sure all the psychotropic drugs harm the kidneys. But, we do know that excessive stress and extreme diets do
People on dialysis would jump at the chance of a GFR of 73% Don't worry too much and the more you look at your results the more they will drive yourself mad.
Hello there! Thank you! You mean gastrointestinal? Yeah, kind of.
I usually have acid reflux, I think, especially when I wake up. I have this bitter taste in my mouth upon waking up. I'm not sure if it's turned into GERD!
Oh really??? I had no idea!!! Thank you so much for telling me! I'll definitely bring it up in my next appt with my neph! I hope this neph is a better listener. He sounded kind in the first appt. Hahaha
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Don't worry too much and the more you look at your results the more they will drive yourself mad.
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