NEW TITLE, SAME HELPFUL ADVICE: I was... - Kidney Disease

Kidney Disease
4,611 members2,017 posts

NEW TITLE, SAME HELPFUL ADVICE

Mr_Kidney
Mr_Kidney

I was recently asked and accepted the opportunity to become an NKF Ambassador.

This may mean that I'll have to post more often so I offer my apologies in advance.

44 Replies
oldestnewest
Bet117
Bet117NKF Ambassador

Congratulations!

You are a credit to this community whose incredible knowledge and compassion enhances it's quality!

Zazzel
Zazzel in reply to Bet117

Congrats to you as well Bet! You are always there to offer a comforting and compassionate word.

Bet117
Bet117NKF Ambassador in reply to Zazzel

Thanks, Zazz!

Same me, hope to reach and support more people!

...and by the way, you are pretty terrific yourself!

B....:)

Mr_Kidney
Mr_Kidney in reply to Bet117

I see you were contacted and Welcome as another new Ambassador. I'm honored to be in such excellent company.

Bet117
Bet117NKF Ambassador in reply to Mr_Kidney

Thanks Mr._K!

Working with you and being in your company is an honor for me as well!

We will make great and comforting differences!

B...

Well earned,you were the first person to advise me on here.

So a very big Congratulations.👏🏻

Mr_Kidney
Mr_Kidney in reply to Gemini71

Your serum creatinine and GFR are what the nephrologist will look at and then what underlying symptoms and results should be on your radar. Also, the values of this testing are only a snapshot in time. It's the continual numbers that actually determine your status. What can change your numbers? Medicines, dosages, antibiotics, illness, OTC supplements, and strenuous exercise. There are others, but that will give you an idea.

Ask for a referral to see a Renal Dietitian and bring your lab values with you so that a proper meal plan can be developed.

If I may make another suggestion, set up on the computer or on a spreadsheet a list of all of your labs done and values. Be sure to always ask your doctor for a written copy of every lab you have, blood and urine. If you decide to do this let me know and I can get very specific about how I set mine up and explain it to you and you can then decide how to set yours up.

Barnhouse
Barnhouse in reply to Mr_Kidney

Mr. Kidney I had three bad tests within a 5 week period of time in 2018 the best was GFR 54 creatinine 1.44 but I was working out with weights incredibly much I went back for my quote confirmatory test about a week ago about 5 months after my first test and all my numbers were normal GFR 67 creatinine 1.2 and Bun 13 what is your take on this thank you for your response, Doctor said I should be elated but still its just one test. However I have not at this point had a low gfr for three months in a row (at least that i know of) In the five intervening months i stopped the weights. No diabetes or high blood pressure

Mr_Kidney
Mr_Kidney in reply to Barnhouse

So you are at Stage 3. That's an okay place to be and if you watch your meds, exercise without too much exertion, stay with a kidney-friendly meal plan you may be able to stay there for a good long time. It's not easy and try not to get too high with good test results nor too low with poor test results. Stay current on your immunizations, avoid NSAIDs when possible and be smart when it comes to holidays, flu season, and other life crisis times. While there are no guarantees you can only control what's in your power and hope that it will be enough.

Barnhouse
Barnhouse in reply to Mr_Kidney

Mr. Kidney could I be in stage two because I've not been officially diagnosed with chronic kidney disease and my last GFR was 67 could the other three tests in August of 2018 be just a blip I was taking medication Omeprazole during that time which I cut out my GP told me that I don't even need to go see my nephrologist and I can now cut that out also if I recall when I took a insurance test and insurance medical test in October of 2017 all my numbers were in the normal range as well

Mr_Kidney
Mr_Kidney in reply to Barnhouse

Even at Stage 2 you still have CKD. The good news is that you are better off than many of us in that you know what you have to do to slow down the progression and have the opportunity to do so at a much earlier time than many of us. Also, use that time to learn what you can and share that new knowledge with others who need the help. Don't forget to look at the various modalities for dialysis and then should the day ever come when you need to look at that you won't be overly stressed out and can make a sound decision. Keep a spreadsheet of all of your labs and mark any trends to speak to your physicians about.

Barnhouse
Barnhouse in reply to Mr_Kidney

Mr. Kidney I must tell you the thought of dialysis or a transplant is utterly terrifying to me I honestly think I would opt for death Hospice Care instead of that

Mr_Kidney
Mr_Kidney in reply to Barnhouse

That is certainly an option but don't you think you owe it to yourself if not family and friends to at least look into the options? I've done the research and HHD will be the option I choose should it become necessary. Death is a good option if your only interest is in cutting back on your expenses. For me, HHD will allow me to continue to wander around the country in my RV and continue the lifestyle I enjoy and still be in control. Have you taken the free 90-minute Kidney Smart class in your area? They will explain all of your options and offer some peace of mind.

No apologies needed. You always offer quality advice!

I do have copies of all the blood tests I've had lately,but they all vary on what's been done. This started with my Rheumatologist who had my bloods in advance,but when I seen him,he asked me to go and have them done again same day,plus urine test. Then within a week my GP rang to say they wanted them again,and again the following day,then again a month later. Well I had my last one last week,I've got all the copies,and I made an appointment for Wednesday.. Well this morning I was looking on Labsonline,and got myself a bit worried but also not to clear. But I've booked a double appointment and I want to be prepared.

Sorry this post is so long,it's the only way I can explain.

Mr_Kidney
Mr_Kidney in reply to Gemini71

I can only guess why they wanted to have the labs drawn again so quickly. There is your first question for any and all doctors. What did they see or suspect? Even if it turned out to be nothing at least you have some idea as to what they were looking at and why. Each lab is just a snapshot of that time. Red flags (no pun intended) can indicate certain issues and numbers below or above the range may be a signal to test again for a more detailed explanation.

If you don't already, bring a list of all your meds with you. I have a sheet I use and it has the meds, dosage, when I take the med, how often, and when I began them. I also add non-prescription (OTC) items to that list. This includes vitamins and other items, already approved by a doctor on my care team.

Don't leave the doctor's office until you understand everything they are telling you. The following is something I do for me but it might be too much for others. I accept no "free samples" or allow the doctor to call in scripts for me. I take the written script and the doctors explanation for why that drug at that dosage. Before I have it filled I check it out on drugs.com Why? I've had issues with previous primary care physicians prescribing meds for one thing, or a higher dosage, that may be an issue with another health issue I have. even though I've told them about all my health issues they seemed to not concern themselves with that information.

You must be proactive and the doctors are supposed to give you the information you need and understand and then go with your decision. That's the importance of putting together a care team.

Bet117
Bet117NKF Ambassador in reply to Mr_Kidney

Well put, Mr._K!

I TOTALLY agree!

You have to be proactive and be in charge of your own health. Doctors are employed, they are paid very handsomely by your insurance company. You have the right to be put at ease.

If I have learned nothing in a year, it is to ask questions and demand responses in layman's terms. These people do not lose sleep at night when there is an issue or question about your health that has not been made clear to you; you and your family do.

I also investigate all medications, interactions and side effects of any drug that I am given. I am very medication allergic and make sure that I am aware of which antibiotics I can safely take for something as simple as a sinus infection; with any drug that I am given.Some doctors may ask about allergies but don't prescribe the right one. I have had to point out numerous times that bioxin can't be taken with lipitor as a simple example. Read as knowledge is power!

Know that we are behind you!

B...

Many congratulations and Thank you. GP appt WED and wondering about GFR and creatine. Have asked for most to be tested for but worried I/HE may be missing the most crucial aspect. Should I be referred to a renal dietician? Are there specific questions re CKD, In a spin!

Mr_Kidney
Mr_Kidney in reply to Diddums

There are many things that can affect CKD. Get your results and everything that is above or below the range provided on the written lab values should be your questions to ask the doctor. Not everything requires a pill or worry. It could be a recent cold, infection, some other medication you were taking and not any longer. Your activity level might have even some effect on your labs.

I use labtestsonline.org to get a reason as to why that test was run and what it may indicate. Yes, I ask the doctor first but I still check it out on my own when I have more time to read, learn and understand.

Find out if your doctor uses a patient portal for communications and join it. My PCP, Nephrologist, Urologist, and Cardiologist all use them and those that don't are very good at answering my questions on the phone within a day or two.

Diddums
Diddums in reply to Mr_Kidney

Thank you and to help further are there any questions I should be asking my Urologist/Nephrologist when see him for annual review (bladder checked yearly as mixed tissues can be a "rare" malignancy risk.....lost a kidney and had urinary system rearranged due to TB/Meningitis 14 YEARS ago.

Copied answer above and wondering if I need to check with GP re ferritin , maybe he is waiting for 'settling time'

Mr_Kidney
Mr_Kidney in reply to Diddums

I posted an article on Ferritin tests so you can check that out. I start all of my questions at the doctor with the results from my labs. Anything outside of the range is fair game. Start there and then do your own research and then ask questions through their health portal, on the phone with either doctor or nurse.

Bet117
Bet117NKF Ambassador in reply to Mr_Kidney

Can't find tbe article. Could you message it to me?

Thanks!

Mr_Kidney
Mr_Kidney in reply to Bet117

It was posted a bit further down in these postings. Here it is again.

mayoclinic.org/tests-proced...

Bet117
Bet117NKF Ambassador in reply to Mr_Kidney

Great article! Covers many bases.

Thanks!

Diddums
Diddums in reply to Mr_Kidney

Will be in touch,thanks again

So you know anything about Ferritin levels which have been high for some time. GP mentioned inflammation indicators but then did little more.Could it be kidney?

Gemini71
Gemini71 in reply to Diddums

Diddums that Labtestsonline Mr kidneys talking about its very good,but if your from the UK instead of .org put .co.uk

Diddums
Diddums in reply to Gemini71

Am from the UK thanks for heads up!

Mr_Kidney
Mr_Kidney in reply to Diddums

I take an extra iron vitamin because of just this question. I pulled this article from the website and found it answered a lot of questions, some I didn't even think about before reading.

mayoclinic.org/tests-proced...

Diddums
Diddums in reply to Mr_Kidney

Interesting article and was advised by GP hemochromatosis usually needs readings in k's

Mr_Kidney
Mr_Kidney in reply to Diddums

I should have also explained that different labs will have different ranges based on testing methods, the person doing the testing and additional factors. The range is only meant to give a "normal" reading. Anything way above or below the range should be a strong indication of something may be wrong and worthy of attention or at the very least a further explanation.

Diddums
Diddums in reply to Mr_Kidney

Got it thanks!

Hello Mr. Kidney, I also add my congratulations on your new status. You have helped many newcomers in the past and I am sure your advice will continue to be of great value to us all - best wishes - Curleytop1.

Thanks a lot Mr Kidney,I will take all that info with me. I'm annoyed I just started a post then lost it😡. Anyway I'll start again. I take your point in doctors giving drugs that can affect another drug your on,the reply I get is "oh your ok" well he is he's not taking it. I take quite a few Meds at the moment so I get very apprehensive at taking more.

I had Heart Failure some years back,and I was put on Amiodarone,for a while,which in turn gave me an underactive Thyroid,means another drug. I also suffer chronic stomach pain,and have had no end of drugs given me,I'm still taking two of them that I'm trying to wean off. So you see I've had my fair share of doctors mistakes,so I'm very cautious.

Long post again. Rant over. Thank you.

Mr_Kidney
Mr_Kidney in reply to Gemini71

Your concerns are why I like and use drugs.com They have a section on interactions with other drugs and that has saved me a lot of heartaches. I don't have the doctors call in the initial script until I check it out for myself and then if necessary get back to the doctor with additional questions. Usually, this is with the PCP, as the specialists I've encountered are aware of more drug interactions. This may not be your experience but so far with me, it has been a concern.

Hi Mr,K, itook your advice and joined drugs .com,but I found I was already a member,but I must have forgot I joined🙄. Nethertheless ,I went through all my Meds again. And would you believe they all interact with one another. Mainly moderate and I've been on them some years,so I'm not to worried. But don't you think this is crazy,that you have to be so on the ball with your health. Doctors get good money,and have supposedly trained to take care of people's health. I'm not saying we should not help ourselves,but when it comes to important stuff like medication,that's there job.

Well I'll let you know how I get on tomorrow,and once again thanks for your help.🤞

Mr_Kidney
Mr_Kidney in reply to Gemini71

WOW! I do understand your frustration. Keep in mind that when you are knowledgeable and aware of your health issues and medications you can be and stay in control. This is one of the main reasons why I don't allow doctors to call in original scripts for me. I take the written script and after I check it out (after I check with the doctor about interactions with other meds) and if I find something the doctor didn't mention I call them back and get clarification. Only after I get that do I take the script in to be filled.

I don't mean to sound like I don't have any trust in my doctors, I do. Especially my current care team. I do it because my previous experience has caused me health issues that I may have been able to avoid. Doctors know a lot, way more than I could ever hope to know, but, I know my health better and it's up to me to focus on the advocacy for my health.

Mr. Kidney,

You have a wealth of information. Your sharing is greatly appreciated. Hopefully you will be able to help even more people.

lowraind

You were an excellent pick based upon recent messages. As Ambassador, do you get to live in a consulate?

Mr_Kidney
Mr_Kidney in reply to Dixidude39

Okay at some point the jokes have to stop. I'm getting a complex. Actually, in less than two months I go traveling in my RV for half the year. I do bring my computer and I work from that while on the road. Thanks for making me laugh about it.

Mr. K, that's an amazing story (RVing for 6 months a year). I can't say I have ever met someone who owned and used an RV. I read that it can be almost like a fraternity in that one meets many of the same people as an RV sojourner. I'm also blown away by the occasional RV sales lot I pass crammed full of brand new RV's. I assume many are over $100k.

Mr_Kidney
Mr_Kidney in reply to Dixidude39

My RV is a 27-foot travel trailer. When I was teaching I traveled during summers and vacation time and used a lot of what I saw to build lesson plans. After standardized testing, that pretty much went away but the habit of traveling never did go away. Now in retirement, I go where I like staying for a few days or a few months. I'm still able to stay in touch with others thanks to cell phones and wifi so it helps. The hardest part is keeping up with health issues on the road. Advanced planning is all it takes.

You'd be amazed at how few people I meet for the 2nd or 3rd time when I'm traveling. There are so many people doing it. Staying in contact with new friends is usually done through another forum for RV travelers that I belong to. It is fun to see parts of the country and I never get tired of it.

cmaxwell78
cmaxwell78NKF Ambassador

Welcome!

You may also like...