I found out for myself that I had CKD and had a GFR of 38. A receptionist gave me a clue and I googled for info. I asked a doctor if I had this and was informed 'yes'. From then on I have been refused a nephrologist and dietician. My doctor ignores my questions and is totally disengaged and uninterested. I do not feel there has ever been any care for me and that there never will be. I am afraid to speak up but I will and to add insult to injury, I will endure more stress for doing so.
Lack of professional concern.: I found out... - Kidney Disease
Lack of professional concern.
Written by
esperanta
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46 Replies
•
Go look for another doctor like TODAY! My doctor sent me to a Nephrologist at gfr 52 but I’m in South Africa I don’t how things work over there.
• in reply toDaveThebe
Since you are a resident of the UK you have to abide by the dictates of your NHS. That will leave the majority of the work on you. Learn all you can about CKD and what you can do to slow the progression. I can offer you some suggestions.
Use kidneyschool.org and watch the learning modules about CKD. Write down any questions and research the answers and/or come back here and ask.
If you have additional underlying health issues that you take medications for I suggest you use drugs.com and set up a free account. Add to that all of your medications and dosages. You'll then find out about specific interactions for someone with CKD. Ask your physician about those problems and guide yourself accordingly.
Ask you physician to help you develop an exercise regimen that will allow you to do what you can to stay active and help improve your health.
A kidney-friendly meal plan is the best way to slow the progression. Hopefully, you have hard copies of all of your previous lab reports. If not, do your best to get copies. Once you have them you need to look at which specific items like sodium, potassium, phosphorus, protein, and calcium. Those need to be within the reference range that should be listed on your lab report. You can use the davita.com website and look at their RECIPES link. Until you are okayed to meet with a renal dietitian you will have to work this out on your own. Don't take any of the recipes at face value. Adjust each one to your personal preferences and needs. Do not try to completely eliminate any of those items from your plan. Your body does need them to function, just not in abundance.
Best of luck.
Mr._ Kidney,
Super and comprehensive advice and plan.
👍
You said it, Bet! Way to go, Mr. Kidney!! 😊👍👍
esperanta• in reply to
Thanks Mr. Kidney for your very helpful advice. I will look up drugs.com as have read that lansoprozole is very bad for the kidneys and I was left on that for years. I just take calcium carbonate for GERD now and understand that that is a phosphate binder anyway. I am hoping to book a blood test for end of June to see what my latest figures are and hopefully the surgery will be open after lockdown. I will then be able to see whether the changes I have made have had a favourable effect.
Your response and the half a dozen or so others I received from people meant so much to me. I was so overwhelmed I cried. Thanks so much to everybody.
Change your doctor. I had a doctor who showed a lack of care and I changed to one who did. Keep changing to you find one that takes you seriously. You've only got one life but there's lots of doctors.
Awesome reply! And so true! 😊👍
BassetmommerNKF Ambassador
Esperanta,
There is not much more to answer that hasn't been said. You need a new doctor. My doctor (PCP) never told me I had CKD and was giving me medicine that made the situation worse. I have had two doctors in my life that I have fired. It is like any other business. They do not give you want you need, then shop else where. I am not sure what the protocol is where you live, but find someone else.
I too had a PCP that never told me I had CKD and was prescribing a medicine that made situation worse. PCP was asked to leave the practice. Agree is best to shop for the best Doctor for your situation if possible.
Yes, turns out mine was asked to leave the group he was in as well. He was so nice and spent a lot of time talking, but not about the right things. We both worked for the same health system. If I had stayed with him, I probably would be either dead or on dialysis. He prescribed a medicine for me for diabetes. It not only did not do anything to help my sugar levels, it was harming my kidneys. I took myself off of it and a new doctor came into the practice so I went with her. Got to be careful.
Yes for sure. Learning how important being pro-active, for your health, is.
I’m sorry to hear that Bassetmommer. I’ve also been burned by destructive meds. This kind of thing always irritates me to no end. This is something that doctors should be made accountable for. It’s just nonsense (and potentially deadly nonsense at that). ☹️
Agreed, Sammi!
I hope that we all don't have a story, but many of us do.
It is so important to read, speak to your pharmacist and let the prescribed know if you don't feel well. If the prescriber is dismissive, and insists with no discussion, then it is time to part company.
Life is hard enough without having to deal with a provider who is not properly treating you.
Yes, regretfully I realize that I’ve got to hunt for a new nephrologist yet again. Ugh!!
The Vitamin D toxicity that has evolved is treatable. But it also would not have evolved had they monitored my Vitamin D levels as required for the Med they prescribed. Then add to that chaotic appointments, no returned phone calls, a patient portal that doesn't work but is their preferred means of communication, and rotating me through endless nurse practitioners thereby causing little continuity of care.
I just don’t want to have to do this as I teeter on the edge nearing dialysis. But I have to face facts. This practice has solid knowledge base but the organizational infrastructure is a nightmare. I’ve truly reached my upper limit.
My appointment (telemedicine) on Wednesday was interrupted 3 times. I actually heard a discussion about another patient who was mentioned by name. There was no time to discuss my questions about the toxicity etc. or the process to transition to dialysis... No return phone call to schedule an appointment with my actual nephrologist. No lab order sent anywhere yet although they need new labs in 3 weeks. No medication (I was experiencing fluid retention on Wednesday and had been for several weeks with elevated blood pressure) prescription sent.
Clearly I’m on my own dealing with my symptoms. And yet I’m sure I’ll get a bill for this appointment.
So, as I sigh, I have begun looking yet again for another nephrologist. I sincerely hope changing nephrologist’s won’t negatively impact my relationship with the transplant center... but if it does, I guess that’s just the way it goes.
I’m truly frustrated. This practice had organizational issues before COVID. However, COVID has shone a bright light on these issues. The vitamin D toxicity should have been monitored beginning last October, well in advance of COVID. I’m definitely realizing a need to be patient with medical personnel right now... But this has really become too much I guess.
Jayhawker
Hi Jayhawker,
I am so sorry to hear of the plight that you are facing with your nephrologist. It is never easy and quite frankly a frustrating, disappointing nuisance.
Candidly, I have been through a similar situation; two in one practice at a well known metro teaching hospital and the other co- chief of nephrology in the teaching hospital rated #2 in my state. I will spare you the details, but I will assure you
that the nightmare will end.
You are a great personal advocate, know what to do, but need the fine medical care that you are entitled to.
Right now, the priority is about getting you that medical care that you deserve and then using your intelligence to make sure that another patient does not go through what you have.
My thoughts are to speak to your PCP or another respected member of health care team as they are your
" go to "people in finding a new and competent nephrologist as this person will become a vital part of your health care team and that they will have to work with them as well.
It was my PCP who helped me find my present nephrologist who is not only out of her network, competent, communicative, progressive but also associated with a teaching hospital which is closer to home.
She made an oral referral via a conversation with the new patient assistant and then consulted with me before an appointment was made.
Let them help you as you do not need any additional stress; especially at a time where our nation faces a serious medical
crisis.
Additionally, as you know, you have experienced not only incompetence but also HIPA violations. I understand that the pandemic has effected many things but should not effect medical competence.
As far as the tech end, that is not right but not uncommon.
As annoying as this is, you will straighten this out and then, when the time is right, find the phone number or place of report on your former physician's network or hospital website where you can either openly or anonymously report unprofessional conduct and incompetence as they should be made aware of what you endured as to address this incompetence on many levels.
Mr._ Kidney's posting of the "Patients Bill of Rights" says a lot as well.
You have been through enough and are sharp - on top of things and you deserve better.
Take a breath and act. Know that you are not alone.
Take care of yourself and
please reach out and let us support you.
Bet
Okey, I reached out to both one of my physicians and the nurse who directs the Davita center I’ll be assigned to when dialysis starts.
The physician has given me names of a few other nephrologist’s in a different practice. He’ll help me get in quickly for an appointment once I decide which would be my preference.
The nurse, Celia, who directs the center told me which two practices her center works with as well as contacted the nephrologist who started my current practice. This nephrologist is semi-retired now. He only oversees the PD Dialysis patients in the center now.
He does have an excellent reputation and certainly is still considered to be the best nephrologist’s in the metro area where I live. He’s just no longer seeing patients in practice, unfortunately.
The semi-retired nephrologist called me last night. He accessed my lab data. He wants to see me at the dialysis clinic for an appointment. However, he noted that my data is stable now and definitely high enough that he would not necessarily expect me to need dialysis yet. But he wants to see me to make a definitive recommendation.
Meanwhile, he is reaching out to the nephrologist to whom I’m assigned but have only seen once. So, I’m going to see if this can be worked out.
I have to say, I learned more in a 5 minute conversation with the semi-retired nephrologist last night than I have over the past 2 years. It’s a shame he’s no longer seeing patients. He does have good patient rapport. And he knows what he’s doing.
I’ll ask him who he’d recommend I see for my regular renal care. I made it clear to him that I need this situation calmed down; I need a doctor who takes time to actually know his or her patients. I simply can’t trust advice otherwise. I ended by saying that without a solid doctor/patient relationship, I might just as well go to the ER when problems arise; my medical care is no better than crisis level emergency care. That is certainly not optimal or even effective care when dealing with Stage V renal failure. He agreed.
I’m guardedly optimistic at this point. I feel pretty strongly that whomever this semi-retired nephrologist recommends should be a good situation. He’ll likely recommend a shift to a different nephrologist within the practice. I’m fine with that and would be happy to give that a try. If that’s what he does, I suspect he’ll talk with that nephrologist as I make the transition. All of that should help.
He did confirm that the doctors in the practice are working in the hospital only right now due to COVID. This is to protect the NPs. I said that it would likely be helpful if the practice would let the patients know about that. He agreed.
Definitely a pattern of poor communication with this practice. That’s unlikely to improve anytime soon, if at all. However, my thinking is that if I can work with one nephrologist (2-3 appointments a year) and one nurse practitioner (2-3 appointments per year), my care will at least stabilize.
Jayhawker
Hi Jayhawker,
Thanks for getting back to me as you have been in my thoughts.
I am glad to hear that you got some positive direction from both the Davita Center and the senior staff member that you spoke to. I am delighted to heat that he will see and assess you personally before you make a move.
Hopefully, his influence and recommendations will lead you to a new person who will provide you with the care that you need and are entitled to. More than likely the senior staff member who will be assessing you will consult with your new physician. I would bring that up at the appointment as to set a plan.
Most importantly, you are seen and connected asap.
Bear in mind that every system works differently, so if you are within the same practice make a point of conveying your needs to the new person and no need to consult with your former physician.
Honestly, my thoughts are a different practice so you can start fresh. If you know the names of these physicians google them and see if Health Grades or Vitals lists a patient evaluation on them.
Honestly, when my PCP and I were looking for new nephrologist, she suggested we stay away from the prior medical centers. We initially looked at a senior staff member who treated my condition in my present medical center. When she called, the patient assistant highly recommended my present nephrologist who had joined the practice shortly before as he was well liked as well as competent. Ironically he did his residency and fellowship at the first metro hospital that I was seen in and knew the staff well, but they were gone as this was a new place.
I looked him up and by the time that I walked in the door had seen my records and was wonderful!
Remember that if this practice doesn't work out, you will find another as you have already spoken to people who can help you.
As far as visits; my thoughts, see where we and the medical centers are as time passes with this Covid. If you feel that you want to see your own doctor, ask if this can be arranged.
With the experience that you have had, the stress must stop.
Please keep in touch and let me know how the appointment went and your direction.
Stay safe and know that it will all work out.
In your corner!
Bet
I’m with you on the need to move to a different practice entirely. I’ve begun investigating the other practice that this dialysis center serves. I do think the nurse who directs this center is very good and also patient-centered. That will be important as I start dialysis. So I would prefer to stay with this center if possible. However, if the practice that seems best works with a different center I’ll contact the nurse who runs that center and more or less interview her or him to see how I feel about that option.
Meanwhile, I’ve been off the problem medication for a week at this point. What a difference a week makes! I’m stunned by how much better I’m feeling! At this point I strongly suspect that many of the symptoms I’ve been experiencing for the past 8-10 months (gradually worsening over time) are attributable to the toxicity the medication was causing.
I’d imagine that at a minimum the senior nephrologist will get me transferred to a different nephrologist at the practice. But, as I said in my initial post, the disorganization that pervades this practice will continue no matter who I see. And they clearly do not understand the importance of patients working consistently with the same nephrologist and nurse practitioner. It isn’t just continuity of care; it’s also establishing a solid doctor patient relationship. There is no trust with regard to medical recommendations without that relationship.
Well, I know what I have to do. But I also know I have to keep some sort of care in place in the interim as I search for a new nephrologist.
I appreciate your words of wisdom and support. I’m thrilled to be feeling better. I suspect my renal panel on July 10th will be stable or show some improvement.
Jayhawker
Hi Jayhawker,
Happy to hear that you are feeling better since you are off that medication. Honestly, it comes as no surprise to me that you could have had medication reaction symptoms rather than disease symptoms. I was put on a statin for mildly elevated cholesterol around the time that my kidney disorder was discovered. I had a violent allergic reaction.
Thanks to the work of my PCP and my present nephrologist, I am taking alternatives and my LDL is 100 and cholesterol normal.
I am convinced that doctors prescribe various medications based on what they think will work and it is not right for every patient.
I read your thoughts about a fresh start with a new practice.
My instincts would be to go that way as you will already be settled in when and if you do need dialysis.
It sounds to me like the contact nurse at the center would be a great resource as they know who is who. I don't have to tell you to let her know what you are seeking in a physician and a patient portal system. Explain your plight, and that due to your health condition it would be appreciated to be able to be seen at their earliest convenience. Take it from there.
Having the name of the person that the senior nephrologist recommends is like having a bird in the hand as you still have the option to see that person if you choose.
Most importantly that you
receive monitoring and the good care that you deserve as expediently as possible as the stress must go.
Honestly, my working with my PCP and changing area as well as medical centers was the best move that I ever made. It was ironic and to my advantage that my nephrologist knew the metro crew; personalities etc. from both prior places. With this move, I obtained great compassionate, thorough, and communicative care without egos and other issues haunting me.
My husband, myself and my PCP are extremely pleased not only with the nephrology care but also the office staff.
July 10th is the birthday of one of my closest friends. It will bring you good luck. You will be writing to me with good news.
In the meantime, please stay safe and don't hesitate to reach out to me. I promise to always reach back.
Bet
I am curious as to which diabetes medication hurt your kidneys.
Tragenta
If you are in the U.K., it is not very common to be referred to a renal consultant at CKD Stage 3. When the eGFR rate was first introduced into the U.K., a fruend’s GP complained that half his patients so diagnosed were rushing off to renal consultants. The Doc’s actual words were that with the new style lab results “the Government had opened a can of worms with everyone demanding referral to a renal consultant”., adding that it is normal for kidney function to reduce as people age. At Stage 3a then and 3b now, I started off by seeing a renal consultant privately. Now under the NHS but have been unsuccessful with my requests to be referred to a renal dietitian. Do change your Dr - you might be luckier.
I am in the UK too, & also have been refused referral to a renal consultant & dietitian at 3A with GFR 47. There is little one can do about it except go private. Best advice is to educate oneself with the help of the organisations as referenced by Mr Kidney.
So, I suppose my question to everyone here is, why are these doctors getting paid the amounts per hour or per patient, that they do, if we have to do most of the work that really, they should be doing? I just don’t understand this.
If we’re on our own, without the benefit of their proper guidance and expertise, then why are they reaping the benefits of doctors’ wages? It is their job to help us maintain our medical well-being, and this should include keeping us properly informed of where we stand and advising us to the best of their expert ability. This is their field of work. It’s what they get paid for. We’re not paying them (or in some cases, the government’s not paying them) to help us throw our health down the toilet. This can be so frustrating. Goodness, gracious! 🙄
• in reply toSammi_n_Munk
I felt the same way three years ago when I found out about having CKD. Seventeen years prior I found out I had T2D and HBP but the doctors didn't inform me about what could happen if they went unchecked. In time, I did manage to get both under control but still developed CKD. The best thing that happened was the learning that I had to be in charge of my health.
Every one of my Care Team physicians knows about all of my health issues but when a doctor tells me that they want me to try a new (to me) medication I open my phone to the drugs.com app and enter the new med. I then check it for negative interactions with other meds, foods, and health issues I have. I ask questions at that time and don't leave the office until I've discussed the issues with the recommended script. Four of my physicians, the PCP, nephrologist, cardiologist, and urologist give me the med and dosage, then leave to see another patient and come back to me to answer my questions.
Before I place a physician on my Care Team, I explain all of this and so far I've only interviewed one doctor who said it wasn't possible to do that. When I explained that I wanted to check on interactions with other meds before I left, he told me that was his job. I've seen him one time since that meeting and that was at the grocery store.
It's up to the patient and as such we have every right to know what we are putting into our bodies and the potential harm it can cause, not to mention the expense of some of the scripts.
Being proactive doesn't just mean sitting in front of your computer and researching your health issues to learn more about it. It is also being proactive in the exam room chair by explaining your concerns to the doctor and getting answers to your questions that you understand. I no longer expect the doctors to remember all of my medications, health issues, and other minutiae, that is my job. At every appointment, I provide an updated copy of my medications. I do expect the doctor to listen and explain everything. This has resulted in med changes and/or dosage adjustments. From this, I've developed a daily medication schedule for my doctors to look over if they recommend a new medication, and then give me the best time of day to take the medication so as to get the best effect. This was specifically needed for medications from my cardiologist to control my HBP.
Now there are pharmacies that will package your pills that way for you. I'm not ready for that yet, but it is an option for some.
I've included a link below to a copy of the Patients' Bill of Rights.
I was under a nephrologist when I was diagnosed with stage 2 CKD. And was seen regularly until I was diagnosed end stage. Then I was sent for my fistula surgery and then boom dialysis. I’m in the UK and I have never heard of such poor practice. I am totally gobsmacked. I guess it comes down to your postcode but I don’t want to believe that’s true. I’m in North Wales and my Care has been top notch. I’m so sorry you feel isolated and unheard. All the advice given on here will steer you in the right direction. Good luck and remember we are always here for you, you’re not alone anymore xx
I guess your reply was meant for Esperanta, but just wanted to give a pat-on-the-back to those providing your healthcare in North Wales. Keep well.
Hi Cazzy. Thanks for your reply. I believe that care in Wales and Scotland is superior to that encountered in England. So I have read anyway, because there is more per capita spent on health. I will have to move. One of my grandfather's was Welsh and my father was Scots. Both countries are beautiful. Thanks for your very kind words. Xxx
If you ever need any advice or just a bloody good moan I’m here xx
Thanks for that Cazzy. I should have the latest blood test results tomorrow or Tuesday and if my eGFR has gone down I will be having a moan. I will let you know. Take care. Xx
I agree that you should find another doctor. My nephrologist told me that at GFR 19, it was too early to get evaluated for a transplant because I was still feeling well, and "why get surgery when you're still well?" That shocked me. All my research had told me otherwise. So I went to get a second opinion and was told by the second nephrologist at one of the top medical schools/hospital that I should absolutely get on the transplant wait list immediately because 1) the wait to get a deceased donor kidney where I lived was 8 years, and 2) even if I had a potential living donor, it could still take up to a year to be vetted. As it turned out, my potential donor had to withdraw at the end. Seven donors later (which I realize I'm incredibly lucky/blessed to be able to say), I had a donor who was able to pass able to give me a kidney. That was four years ago and I'm doing great.
It's important to advocate for yourself. Websites such as kidney.org and the ones listed above provide good information. Go to your appointments with a list of questions. A local kidney support group may be helpful as well. People there may be able to refer you to good providers. I find the vast majority of doctors/nurses want to partner with you and provide good care. If you feel your current doctor isn't anwering your questions or meeting your needs, find another. one.
Best wishes. Keep us posted if you can.
Bet117NKF Ambassador
Hi esperanta,
Welcome!
Mr._ Kidney has given you brilliant advice. Look into it as he has provided you with fabulous sites and information - knowledge is power and it will give you some foundation.
Having a close friend living in the UK, I have heard about how the health system works.
I know that the GP handles all issues until you hit stage 3bCKD.
My good friend had an excellent GP but she really became unwell on a weekend and went into the emergency room. Her GP chose a wonderful Consultant; she was found to have Minimal Change Disorder, an autoimmune kidney disorder.
Her GP and Consultant work together. She is never left with any question unanswered.
However, she tells me that you can seek out the care of another GP.
Putting together a Care Team who who will listen to you with compassion, communicate openly and clearly in basic language and consult with each other is very important.
I would start at that point as no receptionist should be giving out medical advice and if ANY GP; forget a
Consultant is rude, dismissive and not listening to you and providing you with the care that you are entitled to, then it is time to part company.
You can enlist the services of another GP who will address your concerns based on your labs.
No physician should be causing you stress and sending you to " Google" as they are not doing their job.
Do not be afraid to advocate for yourself.
Please reach out to us again and let us know how you are feeling and how your search is going.
I promise that one of us will always reach back.
You are not alone; keep that in mind. It will work out.
Good and healing thoughts,
Bet
Welcome to this board and I hope you find a better, more caring doctor. Although I like to think that most doctors got into their profession to help people, just remember that doctors do not get paid based on patient outcome. They get paid by the office visit or by the surgical procedure. What this means is you need to fully "own" your situation and do what you need to to make sure you get the best possible care. Good treatment of CKD can delay the progression of the disease and you might never have to do dialysis. Good luck..
Hi I am like you I didn't find out till I saw a nurse who told me I had CKD I said what on earth is that, was shocked when she told me what it was and when I asked her how long she said years had I never been told. I have BP and now diabetic so have my bloods tested each year and kidneys but that is all, never been given any advise either just like you, hope you manage to get some help ever heard of the proverb physician heal thy self seems that's quite apt in our cases good luck Love & Hugs Xx
Same happened to me, a nurse mentioned my CKD - what CKD ? I asked. I complained to the GP , explaining that as I didn't know I had it , how was I to declare it for my travel Insurance? And if I had not declared it , but had kidney illness while abroad the insurance company, finding that it was a pre-existing condition on my medical records but not declared, could refuse to pay for treatment. He did apologise , but I was quite cross about it.
We Brits in the UK like to think that our NHS is a first class system; unfortunately it is not & it needs reform.
Yes I think your right there, we need to learn as much as we can and the people on here are so helpful Love & Hugs Xx
Hi Shortmat. I totally agree with your comments. We could be charged for withholding information from the police but doctors are not held to account for keeping information from their patients.
When I was approaching forty over thirty-two years ago this is what happened. I was sent home from work for feeling ill. I made an appointment with my doctor and he sent me away without checking bp. The next day I had to attend the surgery again for a pre-booked smear test. The nurse took my BP and told me it was dangerously high. Therefore, I had to see the same doctor the next day. He had to take my BP grudgingly and found it high and when I told him about the day before he said, ' Yes, I know, you've been here three times this week's. That what I have had to put up with and still do. Take care.
Mr_Kidney is right. What helped me most was to never stop learning about CKD. There are a lot of great resources to help - just be aware that you need to overlook the negative information. While there is no cure/fix/repair/rebuild for kidney damage, there are things you can do to improve your health and reduce the burden placed on your kidneys. With dedication and some luck, you may be able to slow down, halt, or even regain some of your lost kidney function. I found the best resource to help me was working with a renal dietitian as part of my health care team. They were amazing at helping me learn how to eat (and I love eating) without putting stress on my kidneys.
Best of luck!
James @ Dadvice TV
If for some reason you can not switch doctors, which I highly suggest if you can, and it stresses you out to speak to the doctor about issues, see if you can have someone to advocate for you and your needs. Maybe a good friend or family member to help you make your points without you having to receive the brunt of the stress.
Hi Melissa. That is a very good idea and I did start to look this up recently. It's is a shame when an intelligent and articulate woman, albeit working class which can still be an issue in England, has to have someone to speak for them. It could help though. Thanks for your response.
It is very easy to get intimidated by a doctor, and even if the person is just there for moral support to help you find your voice, can be very helpful. Best wishes, and keep us posted.
Hi. Will do. Have another blood test booked for June 18th. The nurse will have to come to my place as it still is not safe to visit the surgery. I'm hoping GFR will have improved. Will post the outcome when I know it.
can’t you change doctors?
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