I need to pick the collective 'CKD brain' f... - Kidney Disease

Kidney Disease
3,376 members1,547 posts

I need to pick the collective 'CKD brain' for upcoming appointment

Whitetail66
Whitetail66
32 Replies

I will be meeting with my new nephrologist, and am trying to figure out what to ask/discuss to try to get a handle on this situation. I know it's a very broad question, but any advice on questions that I should be asking, or topics that should be addressed? I am making a list of questions/topics, and any advice would be greatly appreciated.

32 Replies
oldestnewest
Mr_Kidney

The link below is to an article from DaVita listing seven basic questions to ask a new nephrologist. There are other questions you might want to ask if you are looking for a member of the Care Team you want to put together. Sadly, not everyone is willing to ask these but it does simplify the process if you want all of your physicians communicating and working together to give you the best medical advice and then also willing to abide by your ultimate decision.

davita.com/education/kidney...

The link below is to an article from the Renal Support Network and also provides questions to ask your nephrologist. A combination of both sets of questions will give you a good basis to tailor the questions to your specific situation.

rsnhope.org/health-library/...

In addition to the questions above for you to select from, I'd recommend you ask some additional questions.

"I'm looking to put together a Care Team of physicians and other professionals who will help me deal with all of my health issues and coordinate test results with other doctors on my Team. Would you be willing to be a part of this effort?

If I were to provide you with an updated medications list at each appointment will you look over that list and let me know if anything, including supplements and other OTC medications, are detrimental to my kidney health? (This means dosages as well as the medication itself).

Would you be willing to accept my decision regarding treatment options and support that decision? (This will include, should the time come, support for the modality of dialysis you choose).

Finally, those last three questions in one form or another should be asked of all your physicians. Care Team members should include all physicians, your dentist, pharmacist, optometrist, ophthalmologist, and if you have one a social worker.

I hope this helps. Best of Luck.

5 likes
Reply
orangecity41
orangecity41NKF Ambassador

Another helpful link from American Kidney Fund on questions to ask your Doctor

kidneyfund.org/assets/pdf/p...

4 likes
Reply
Mr_Kidney

OC, those are excellent questions as well. Combined with those from both DaVita and RSN they really are the best choices I know of. Thanks for reminding me about AKF.

Reply
Jayhawker

In addition to questions you should ask I think it’s important to let all your doctors know immediately what your goals are for your treatment plans.

For instance, it’s critical to me to be able to keep working. I also greatly value my independence. My doctors need to understand both of these things. This means they need to know what my job entails so they get some idea of its physical demands, etc. Similarly, they need to know what I mean when I talk about valuing independence.

And finally, I’m sure they realize that I live alone and so it’s critical that I understand exactly what my data means as well as what I need to do to take care of myself at home.

And finally, I tell the doctor that I hope she or he will provide at least 5 minutes of quality patient education in each appointment. Without patient education I’m unable to take good care of myself at home.

I also end the first appointment by specifically asking the doctor what, specifically he or she needs me to do at home and what data would she or he like me to submit for review in advance of my next appointment.

I arrive at my first appointment with tables containing my BP readings, my glucose readings, and my weight. I also have an app on my phone where I’ve tracked all my daily food intake. I share all of this with the new doctor during the meeting. I take a separate copy of the tabled information for the doctor.

And, I agree completely with the additional questions Mr Kidney mentioned. It’s critical that my doctors will work together as a team. And they have to support my final decision on treatment modalities—I assure them that I’ll listen to their advice and so will make an informed decision...

Jayhawker

5 likes
Reply
Mr_Kidney
Mr_Kidney
in reply to Jayhawker

Excellent points Jayhawker. I'd like to include them when I travel and speak to groups of new to CKD patients.

1 like
Reply
Jayhawker
Jayhawker
in reply to Mr_Kidney

Absolutely, please feel free to do so if you wish.

Jayhawker

Reply
orangecity41
orangecity41NKF Ambassador
in reply to Jayhawker

I think goals are something we might overlook, but very important in Doctor discussion.

1 like
Reply
newbie56

An interesting read for those with ckd, epecially for anyone over 65 years old

nytimes.com/2015/09/15/heal...

1 like
Reply
Mr_Kidney
Mr_Kidney
in reply to newbie56

An interesting article but unless I misread it the article fails to bring up with any strong support the need for ALL patients with a declining GFR to be advised and made aware of their options. It should be up to the patient, not the physician to decide if they wish to take any action regardless of their age, to slow the progression of CKD. It's my personal opinion that any change to lowering the numbers for seniors could possibly force many into unwanted palliative care.

Of course, that's just my opinion and I could be wrong.

2 likes
Reply
orangecity41
orangecity41NKF Ambassador
in reply to Mr_Kidney

Mr K Being a senior I agree with you completely. Quality of life is of great importance.

Reply
Jayhawker
Jayhawker
in reply to Mr_Kidney

I tend to agree with you Mr Kidney. The article certainly represented alternate medical opinions strongly suggesting that those with CKD also often experience various cardiac problems which need attention. This is another major reason to identify CKD.

It never ceases to amaze me how frequently medical personnel decide they should filter what they share with their patients. I used to pray with regularity that God would give my medical team members the courage to tell me everything; even if it was bad news. I actually have said to all my doctors that they’re MUCH better off telling me everything, even bad news. I can handle bad news. I can’t and won’t handle not being told only to learn months or years later that there had been an issue but the doctor had chosen to shield me from it.

After all, I have to figure out how I’m going to manage all of this including paying their bill! It’s critical that I plan for medical procedures and treatments to the greatest extent possible. Plus it greatly decreases stress levels. And yet so many doctors just don’t seem to get this.

I have vivid memories of the first doctor to tell me that I had CKD. I was stressed out and had been for over 8 months by that point. I had moderate anemia and renal panel data bouncing all over the place. I’d been sent to a nephrologist who didn’t bother to tell me that I had Stage IIIa CKD 8 months earlier. My PCP wouldn’t acknowledge that I had CKD. Instead he sent me to an oncologist thereby convincing me that he thought I might have cancer.

I sat in the oncologist’s office waiting for the appointment. His nurse entered the exam room to gather basic information. I literally burst into tears; I was so exhausted, felt so poorly, and no one was giving me answers. But I didn’t say any of that. She took one look at me and said that they would get me answers. I remember thinking, “Thank goodness!”

The oncologist entered the room and completed a basic exam. He then told me what tests he would run and why. He ordered numerous labs and left. I was back a week later. He went over my labs in detail ruling out one type of cancer after another. He had circled a cluster of three scores and said that they were likely the cause of my anemia. He then said that he thought I had chronic kidney disease. He saw that I had an appointment coming up with a nephrologist in a month. He said that was good and that that nephrologist would be able to get my CKD under treatment and I’d be feeling better. He then got me started on EPO injections for my anemia.

Only one doctor had the courage to tell me what was going on. I was so relieved to finally have answers. Eight months of unending stress caused by numerous medical professionals who didn’t have the courage to tell me what was wrong. Truly unbelievable! And eight months without treatment following a sudden plummet in renal function of over 75 eGFR points! Incredible, just incredible!! I’d be fired if I was that inept and unprofessional!!!

So, yes, I feel strongly that patients should be told everything!

Jayhawker

4 likes
Reply
Mr_Kidney
Mr_Kidney
in reply to Jayhawker

I'm not sure if the physicians are arrogant or just don't want to deliver bad news, (probably both) but at any age, the sooner I get told about a condition the quicker I can learn about it and take whatever steps I deem appropriate to maintain the quality of life I want. Only in my research, after being told I had CKD, did I learn that my kidneys filtered less and less as I got older. I know me and If I had been told about declining function when my numbers were in the upper 50's I would have immediately begun to change my eating habits and exercise regimen and looked at all of my medications.

2 likes
Reply
Jayhawker
Jayhawker
in reply to Mr_Kidney

Yes, I’m exactly the same way. In my case I can’t help but wonder whether appropriate renal care from a decent nephrologist would have caused more rebound in my renal function. But at this point that is certainly water under the bridge. I’m now at dialysis door and awaiting a deceased donor kidney for a transplant.

Regardless of whether I’ve experienced true medical malpractice or not, my life has been altered permanently. There’s no going back. I’m left to do the best I can with this situation. However, I’m extremely picky about who gets to be on my medical team at this point! And I am definitely in the driver’s seat with regard to my medical care.

Jayhawker

1 like
Reply
Whitetail66

This is exactly why I'm pissed off. I never heard the words "You have chronic kidney disease.", from either my PCP, or (worse yet), my nephrologist. From reading these posts, it sounds like I'm not the only one. Thank you so much for all the advice you give on here. You are truly a blessing to those with CKD.

Reply
Jayhawker
Jayhawker
in reply to newbie56

Thanks for sharing this article!

Jayhawker

Reply
HealthBuddyMelissa

Everyone has given you very good advice. I especially agree with the medications that may harm your kidneys. I have made it clear to both my doctors I have no interest in taking anything that is processed in the kidneys. Plus ask about Anemia and bone Health and ask that they monitor those at each visit with CBC Vit D levels and PTH levels.

3 likes
Reply
Whitetail66

My PCP wanted to put me on Zoloft because I was not sleeping well, and had anxiety. I picked up my prescription, and the whole time was thinking, "Do I really want to put some big pharma drug into my body that my already compromised kidneys will have to filter?" I decided not to take them, and since I figured out that my CKD was causing my issues, my anxiety has diminished a lot. With exercising and diet change, I avoided putting another drug in my body.

Reply
HealthBuddyMelissa

Yay good for you! I know a lot of my tension and uptight feelings went away after I found out I had CKD and got rid of the metabolic acidosis I had probably been in for years. Plus went off night shift which made a huge difference too.

Reply
Beckett24

Hi, Whitetail66,

One of the most important questions you can ask a nephrologist is: Can you refer me to a renal dietician so I can start a proper CKD diet tailored for me?

Diet is far more important to us with CKD than folks without CKD. Most nephrologists know very little about nutrition.

Good luck.

P.S. If the renal dietician includes any type of meat in your new CKD diet, including fish, find another renal dietician.

1 like
Reply
Mr_Kidney
Mr_Kidney
in reply to Beckett24

I have to take exception with you on fish being an issue for a CKD meal plan. I and others have had no issues with eating fish or poultry in meal plans based on labs and in consultation with renal dietitians. The only fish I've eliminated are those with a higher fat content, like salmon, since my gallbladder was removed

Reply
Beckett24
Beckett24
in reply to Mr_Kidney

Fish and poultry damage kidneys just like red meat and pork. I found this out by reading Stopping Kidney Disease by Lee Hull. Every claim by Mr. Hull is backed up by published, medical articles which are included in the book as synopses as well as their sources.

You would do much better by eliminating all meats from your diet on a CKD eating plan.

Reply
Beckett24

This is why I included the P.S.: Fish and poultry damage kidneys just like red meat and pork. I found this out by reading Stopping Kidney Disease by Lee Hull. Every claim by Mr. Hull is backed up by published, medical articles which are included in the book as synopses as well as their sources.

You would do much better by eliminating all meats from your diet on a CKD eating plan.

P.P.S. If you don't know a lot about CKD, you should look at the book on Amazon and the customer reviews. I bought the book and it taught me a lot about CKD and how to eat right to greatly improve my labs.

Reply
Mr_Kidney
Mr_Kidney
in reply to Beckett24

I will continue to follow the learned advice of two nephrologists as well as my renal dietitian with 20 years of experience.

Mr Hull is selling books.

Nobody with CKD should be listening to you, Mr Hull nor me, but follow the advice of their nephrologist and renal dietitian.

2 likes
Reply
Beckett24
Beckett24
in reply to Mr_Kidney

Mr. Hull is citing many medical, published studies and their sources to back up everything he wrote - as a matter of fact he reached his conclusions because of the studies. He did all the research and put it in one place for easy access.

Certainly dozens of world class, published scientific and medical research teams have more scientific credibility than your two nephrologists and one renal dietician.

Most nephrologists know very little about nutrition since they are not nutritionists. Renal dieticians are very hard to find (I tried). And not all nephrologists and renal dieticians are good ones. People should be listening to legitimate books backed by legitimate, non-biased scientific research. Books are how knowledge is shared.

Perhaps you should conduct your own research and see how your labs change after eliminating all meats and dairy from your diet for three months. There is no way this can hurt you and it might improve your labs.

Reply
Mr_Kidney
Mr_Kidney
in reply to Beckett24

Thank you Dr. Beckett24, but I've spent a lot of time doing what I need to do to insure the members of my Care Team, are knowledgeable professionals who will provide me with excellent medical advice. The final decision will always rest with me, the patient.

1 like
Reply
newbie56
newbie56
in reply to Mr_Kidney

Mr Kidney... i have followed you for awhile & enjoy your input.

Of course, i don't know your age, nor the ages of others commenting.

At least one or more may be "seniors"... i do believe age makes a huge difference in how our doctors treat us. I'll turn 80 soon & have come to think most kidney issues are age-related, not a disease any more than any other organ is. Our vision, hearing, muscles all lose some function.

Three years ago, my nephrologist told me i had stage 3 and his only instruction was to cut down on salt & take Vit D. He patted me on my hand, smiled & said "Don't worry"...But I did.

Well, I started googling like crazy & found several groups & decided to try Natural Kidney Journal which as most of you here know is a plant -based, extremely restrictive lifestyle. I was never 100% compliant but lost about 25 lbs in less than 3 months. I did the veggies, veggie burgers & lots of oatmeal w/fruit. Turns out my sodium & potassium are always on the low side, so I ate according to my labs (every 6 months)

Continued to lose weight (From 150 lbs to 114 today)

Still on 3 different bp meds as because b/p fluctuates so much.

Today I was told by the doctors assistant that I need to eat more! And, I'm ready to do so... avocados, cheese, olive oil, turkey & rice dressing for starters today. Even a cup of ice cream for the first time in such a long time. I'll judge my decision on the next labs. Please don't scold me. My tummy is full for the first time in many moons.

Qualiy of life? It's important. Eager to hear your thoughts.Thanks

1 like
Reply
Mr_Kidney
Mr_Kidney
in reply to newbie56

First, I'm 68. There are some items you mentioned eating that is on my list of "NOT TO EAT." Regardless of age, we are all different. I trust the folks on my Care Team and there is not just one way to slow the progression of CKD. I don't refer to what I eat as a diet. It's a kidney-friendly meal plan that works for me and it is based on the lab values I've had over the last two and a half years.

I wouldn't scold you for what you are eating. If it works for you then that's terrific. You want to gain weight and still hold off dialysis. If you find something that works, then I'll be your biggest cheerleader. What I've always said is that there is not only 1 way to eat to stave off dialysis.

For me, quality of life is what is most important. Before I retired, I traveled a lot during the summer, school breaks, and even on weekends. When I retired, I continued to travel even more. When I was diagnosed with CKD I thought my traveling days were over. I was going to be tied to a dialysis machine and spend my days watching travel shows on TV.

Instead, I found, through research that CKD could be slowed, and that I could still travel. Further research showed that should the day ever come when I needed to be on dialysis, I could still travel. I could take the machine with me in my RV and my life certainly was not over. It's become even better. I'm eating healthier. I feel great. I've met so many folks in my travels who are also dealing with CKD and even some traveling while on dialysis.

I'm also on three different meds for hypertension. That is a relatively new situation for me. I fired my previous cardiologist last May and switched to someone more aggressive and willing to work with me and the others on my Care Team. The new cardiologist kept one of the meds I was on, added two more and together we played with the dosages and within six weeks we had it correct. I've had HBP for most of my life, and while it was not the cause of my CKD, it was a contributor. It's now under control.

We each have a path to follow. I see many others on different paths, yet we are all going in the same direction.

Best of luck and continued success in your journey.

2 likes
Reply
newbie56
newbie56
in reply to Mr_Kidney

Amen & cheers, Sir Traveler !

Thank you so much.

PS

I could be your greatest fan :)

Reply
Whitetail66

Eliminating meat from my diet is not going to happen, at least not at this point. My plan is to get referred to a RD, which is one of the main reasons I'm switching nephrologists, as my other one wouldn't refer me.

1 like
Reply
Beckett24

My reply to Mr. Kidney: Mr. Hull is citing many medical, published studies and their sources to back up everything he wrote - as a matter of fact he reached his conclusions because of the studies. He did all the research and put it in one place for easy access.

Certainly dozens of world class, published scientific and medical research teams have more scientific credibility than your two nephrologists and one renal dietician.

Most nephrologists know very little about nutrition since they are not nutritionists. Renal dieticians are very hard to find (I tried). And not all nephrologists and renal dieticians are good ones. People should be listening to legitimate books backed by legitimate, non-biased scientific research. Books are how knowledge is shared.

Perhaps you should conduct your own research and see how your labs change after eliminating all meats and dairy from your diet for three months. There is no way this can hurt you and it might improve your labs.

Reply
Mr_Kidney
Mr_Kidney
in reply to Beckett24

You and Mr. Hull are espousing one method. That every physician/renal dietitian does not hand a copy of his book to every patient means that there is no one way to eat to slow the progression of CKD. I'm saying that there are many correct ways to eat to slow the progression. If you found solace in his book I'm very happy for you and everyone else who follows his ideas. However, his way is not the definitive answer. Each person has to make that decision for themselves with the help of their nephrologist and/or renal dietitian.

Of course, there are bad (indifferent) doctors, renal dietitians...they have their own methods. I put my faith in my own research and don't go to a doctor based on convenience. I look for someone who is knowledgeable and willing to follow my plan for my life.

Finally, let me call your attention to the following: South Beach, Weight Watchers, Mediterranean, Zone, Atkins, Paleo, Volumetrics, Raw Food, Nutrisystem, Macrobiotic, Optavia, Dr. Phil, Oprah, and Jenny Craig. All of these are diets that sold a lot of books that people bought and lost weight by following. I guess we can add Lee Hull to that list as well. My point is that there is not just one way to lose weight for people without CKD and certainly there is not just one way to slow the progression of CKD.

1 like
Reply
HealthBuddyMelissa

I think eliminating all meat is dangerous. You can cut it way back but your body needs protein and if you don't like vegan options you are running the risk of anemia. Not all of us want to take supplements either so meat is a viable option. I hate beans hate them so I am never going to be vegan. I do eat a mostly plant based diet but do enjoy chicken.

2 likes
Reply

You may also like...