Reading peoples comments on here it seems to me that the medical community in general is not much interested in kidney disease till dialysis or transplants; whereas patients would like to begin to avoid those things for as long as possible.
Outlooks: Reading peoples comments on here it... - Kidney Disease
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Betsysue2002
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orangecity41NKF Ambassador
On the surface it does appear that way, but maybe other considerations come into play for Medical diagnosis?? Also maybe not educated enough on the disease? Maybe insurance issues too both Medicare and regular medical insurance plans.
• in reply toorangecity41
While I agree with both OC and Bettysue the important issue is that it's not the doctor's place to decide what you are told and when. It doesn't matter what health care coverage you have or don't have. It's critical information for you to have and not informing you, the patient, right away is in my opinion, malpractice.
I demand (in the nicest way possible) that the doctor give me the information on test results and give me my options and accept the choice I make. If the patient is told that they are entering Stage 1 of CKD and another set of tests will be done in 30 days, I can accept that. I should also be told what I can expect if that 2nd set of labs shows a slow/fast decline towards Stage 2.
As the patient, I can then begin to look at ways to slow the progression down. The only way to do this is if the doctor lets me know about the underlying causes that may have contributed to CKD and what I can do to arrest the process. If this is kept from me until Stage 3 the doctor has stolen from me the valuable time to begin a better exercise program, change my eating habits to more kidney-friendly meals, look at any medications I'm taking and the dosage.
When I found the 2nd and hopefully the last nephrologist on my Care Team I knew I found the right person. In his waiting room is a card with the websites and toll-free numbers of organizations like the National Kidney Foundation, American Association of Kidney Patients, Davita and others. I began my research. That led me to Health Unlocked.
It's not the doctor's place to decide when to tell me anything about my health. When they see the test results they should inform me. It's really a simple step.
Diddums• in reply to
I totally agree with you. We will NEVER get this time back and it really is not doctors place to withhold information I expect openness and transparency to be honestly shown. My health ,my right to know for my decision BTW doctors over here hate the Google generation. See,s if Google used you will be frowned upon.
• in reply toDiddums
I don't want to be too critical of the UK Healthcare System since my understanding of it is so limited, but... Having access to Google or anything online to find information on an issue should only be considered as good news. Having a patient with some knowledge about their health issue(s) should make it easier for a physician to explain and therefore shorten a visit or make a visit more meaningful to both doctor and patient.
The healthcare system here in the US has its share of problems and issues. One glaring difference in my experience seems to indicate that we have a bit easier time in securing a referral to a specialist or other medical professional in a timely manner.
It also seems to be an indication that doctors worldwide fail to inform their patients in a timely manner (the early stages) of their health issues. That seems to indicate to me, at least, that the failure comes from the med schools or the medical journals the doctors subscribe.
I don't know the worldwide numbers but something I read within the last couple of weeks stated that there are over 40,000,000 Americans with CKD. An even higher number when you add in the people who have CKD but don't know it. One year ago, I was one of those unknown, but securing my previous records and lab results I found out that I had it for almost a year at the time I was officially told.
There are always exceptions to this and the bottom line is that no matter what continent you live on, or what country you reside in, an informed patient should be considered a good thing.
Finally, regardless of where you live, if you do use the Internet, it's important that you don't accept the first article you find. Read as much as you can from a variety of sources. In a fairly quick period of time, you'll find which ones have legitimate, research-based information and which ones have a sketchy agenda. Beware the person in a white coat, even if they carry the title of DR. when you listen and all they are doing is trying to sell you a product or a "miracle cure." If there was a cure there would be headlines on the front page of every paper worldwide and it would be the lead story on every television and radio station.
Of course, that's just my opinion and I could be wrong.
Diddums• in reply to
I think you are spot on and thank you for warning re " people in white coats who may call themselves DR" I agree and we have glorified salespeople here too. I totally understand your reluctance to be critical of a healthcare system you don't know to well but I do and I agree doctors MUST be honest with their patients and I (accidentally) discovered my condition and (I had it for over a decade since 2007) I saw the initials CKD under diagnosis on a referral letter to a private hosp where I was paying for an MRI scan.....I finally asked me GP about it and he waffled on about GFR until he finally said "I thought you knew!" He proceeded to try and reassure me that it was not serious. Well with respect he wasn't the one dealing with it. I have never been officially told.....otherwise wouldn't have asked what C stood for I had worked out what KD stood for and assumed they must be referring to kidney removal.
I agree. There are many reasons, all individual as to why kidney disease remains silent and not well discussed.
As far as the medical community not informing the patient as to what they have found, what it means, and what the plan they are proposing for each individual's health care and condition IS the responsibility of the physician.
Test results should be available and discussed, be they good or bad. This should be part of the physical. It is not about when it is about being honest and thorough.
Preventative medicine and information yields proactive choices.
I believe its a trust issue.......if our GPs fail to mention it.....how can we trust they will ever tell us everything?
Absolutely. Forget GP's. any health care professional who we have.
" hired" to attend to our health has a responsibility to be honest with and informative to us, be the information good or posing a challenge to be faced.
If it appears in labs or anything else, it should not be dismissed, watched but not dismissed.
When a mews comes at a second stage or is pointed out by another professional, it tells us that it is time to look for someone else to follow our care.
This has nothing to do with the personality of the professional or the patient. What this has to do with is competence, thoroughness as well as cultivating and maintaining.a relationship built on trust and honesty.
It's a bit different reading posts from a US point of view, to the UK point of view,but what I will agree with is I don't think we're told soon enough about CKD,until it's gone to long. Ido agree with Mr Kidney on the fact we're responsible for our own health,to a degree. But if doctors tell you nothing until an illness has gone to far,how do we reverse if it's possible if we don't know. We as laymen can only do so much.🙄
• in reply to
Agreed. Yesterday I posted in Kidney Disease an article along with a video about the early warning signs of CKD (Look for the fictional character, Seymour Jones in the title). It doesn't matter where you live or what type of health coverage you have. You can get educated on medical issues and learn how to detect possible issues and then seek medical advice. If you suspect something and the physician tests for it you should be told about the likelihood of that illness or something more or less serious.
It doesn't mean each of us has to attend med school, it just means we have to know enough about our own bodies and health issues and look for additional flare-ups or signals from our bodies to warn us to possible dangers.
Gone are the days where we get annual physicals, the doctor says "You look good, your tests are fine." While I personally have little use for social media, there is a great opportunity now to search the Internet to find answers to questions and then to see our doctors and ask more intelligent, detailed questions in order to receive more in-depth information.
Betsysue2002• in reply to
Absolutely !
PCPs will not like this but i think of them as switchboard operators ... they need to get the information and then direct us to the proper area/specialist.
They have so many people to see that with the availability to find things these days we need to be the ones trying to get a lot of our own information.
BUT the problem is often that we feel fine with no way of knowing of an upcoming problem/condition and if the docs dont pass that information along before we're aware we can fall behind.
So we both ... patients AND docs ... need to be responsible.
Just sayin'
• in reply toBetsysue2002
Sadly the silent killers are out there and not enough physicians inform their patients soon enough. I've attached a link to an article for the 5 Silent Killers. I can think of more than five, but this will get the conversation moving.
health24.com/Medical/Incont...
Betsysue2002• in reply to
Realy interesting. Thanks.
Diddums• in reply to
Popped the links on Twitter .....will keep you posted if I hear anything.
Diddums• in reply to
Maybe they preferred "annual medicals" as there is a certain mystery attached and they dont want a' semi knowledgeable'' patient.speaking about the UK here.
Diddums• in reply to
Agree we MUST be told about OUR health
Since this is a small community made up of kidney patients that's the focus. I think part of the problem is patients who are disengaged and doctors who are rushed to see as many patients as possible. The insurance and pharmaceutical lobbyists have turned doctors into turn styles billing as many patients as possible. I'm not in the medical field so I have no idea what general practice doctors are taught in med school but I can imagine the sheer volume of issues a person might present so if a patient doesn't have the lab results and doesn't question them then they are seen and ushered out. I'm in a rural area of the US and I've been fortunate to have both my PCP and any specialist I see take time to answer all my questions, go over my lab results and what they mean. While yes a patient is entitled to the best care they have a part to play in it also.
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