Looking for a Nephrologist to work with me on Meds

@stuartbelstuartbell
Welcome to Mayo Connect. I was going through all my medications this week on what I can take with what, meals, each other, and it is so confusing. I did a little research on "Medication Therapy Management". It ussually with a pharmacist who reviews your medications. Some insurance companies have someone who can do it. Unfortuntaly I do not qualify to have done with mine.

I plan to ask my primary the next time I see her whether Mayo offers that service. When you see multiple specialists, it is hard to keep track of them.

I also keep a list of all my meds with reason taking and instructions on how to take. It helps when you see a provider, and they ask.

Can you call your insurance provider (the number is usually on the back of the card)?

I have records of my CKD dating back about 10 years all plotted along with a list of my medications.

i’ve read the label information and as many of the research papers leading up to the medication‘s that I can find.

I believe I need additional medication now that I have progressed the stage four.

when I discussed this with my nephrologist, he grew quite agitated and accused me of you surfing his authority. All I was asking for was a discussion of what I do next.

He offered me a tour of the dialysis center but no discussion about medication.
When I requested a specific medication that is well within the range of what should be prescribed for my level of CKD he agreed to prescribe it, but refused to get pre-authorization from the insurance company and also refused to monitor any side effects related to that medication.

I’m now looking for a new nephrologist.
In the meantime, I’ve discussed this at length of my primary care physician, who, while willing to prescribe the medication offers that he does not have the specific experience to do the best possible monitoring for a person with CKD 4.

I’ve spoken with the insurance company, including their counselor nurse, and was told that all their permitted to do was provide a list of plan physicians.

I’ve contacted several of these physicians with a written request for a treatment plan and none of responded even though I have a course offered to come in for a visit and obviously pay their consulting fee.

I’m beginning to feel the south Florida. The nephrologist are interested in what they earn from the dialysis centers and are kind of pushing me along on that direction.

@stuartbell Let me add my welcome to Mayo Clinic Connect! I had a response typed out, and it disappeared, dang it! We are not medical professionals on this site. We are fellow patients, family members, and caregivers who share our experiences with others, including what worked, or didn't work.

Does your primary care know a nephrologist they can refer you to?

One of the first things is to determine why you have a decrease in function. Diabetes and high blood pressure are the two leading causes of chronic kidney disease. Other factors can be lifestyle, long term side effects of medications, or hereditary factors. It is important to figure out the root cause, and address that, to proceed forward.

You didn't mention what medication you feel you need at this point. Will you share that with me? As kidney patients often we find we need to do a lot of our own research and education!
Ginger

my primary care physician does not have an nephrologist he can recommend.

I am presently taking lisinopril and Doxosin.

I would like to consider Farxiga.

i’ve recently lost 30 pounds and wanted to discuss a GLP-1 medication to help me maintain the weight loss.

My BMI is about 25 and my GFR is about 23.

Over the past 10 years no one has been able to tell me the cause of my CKD although they’ve ruled out polycystic nephritis with an ultrasound.

Thank you for sharing your situation! I can relate. I have been dealing with CKD for 30 years. I also tried Farxiga at stage 3 and it didn’t help me. At stage 4, I began creating fliers to promote my need for a kidney living donor, posting the flier everywhere. 1 week later I found a donor and 2 months later I was transplanted!! Truly a miracle! After transplant, I still have the medication struggles and side effects. The nephrologists don’t have the bandwidth to go deep with side effects after transplant, which I completely understand. I have used multiple resources to find different specialists who are knowledgeable about ESRD and transplant. It’s a journey, but I’m healing, learning and growing. Hang in there! Sending prayers your way!

thank you for sharing. I do hope you do well with your transplant and the management of your medication’s.

@stuartbell Looking at the medications you list, am I correct that your dealing with cardiovascular issues, like high blood pressure? Congratulations on the weight loss! Continuing on that same regimen will more than likely help you maintain that weight loss. As your body adjusts to the new weight, I know from experience that we need to be even more vigilant.

High blood pressure issues could be the cause of your CKD. Reread my other post here to see the different causes.

I certainly can understand the reluctance of your doctors to get you on more medications! The fewer we have to be on, the better.
Ginger

Before I started the mediation, my BP was high and caused some heart damage. I've been on medication for about 10 years and my resting bp is in the 140/70 range, high, but I think not dangerous.

Once I lost weight, my resting bp dropped to 125/55 - and I was dizzy. I cut my medication to get my bp in the 140/ range and I'm still losing weight - my target loss is about 3 pounds per week and I'm schieving that.

I also exercise 5 times/week and work toward a sustained heart rate of 120 when exercising - now that I have been exercising a while, it is hard to get above 100 or so -- but that is a good thing.

Thank you for your comments.

@stuartbell welcome again to Mayo Clinic Connect. You’ve been busy! I feel as though I’ve come across your posts in a few other discussions.
You have caught the attention of 3 volunteer mentors with Mayo Clinic Connect. I just want to reiterate what somebody already said. We aren’t medical professionals or a medical practice / clinic. We don’t diagnose or prescribe. We are just fellow patients sharing our health journey stories in the hopes of offering hope and encouragement.
Laurie, Volunteer Mentor @roch gave some great suggestions regarding insurance, “Medication Therapy Management” and medications.
Ginger, Volunteer Mentor @gingerw always has helpful information in all the discussions of the kidney Conditions and CKD groups. She knows a lot about medications, dialysis and transplant. She helped me post a link about finding a Mayo nephrologist (Jacksonville) in another discussion. (It might have been in response to you!)
I applaud your diligence in doing your research, your dedication to exercise, your commitment to losing weight. I just noticed three things that worried me.
1) When you mentioned a BP of 125/55; that sounds low (no wonder you were dizzy!) Better BP goal.
2) A target weight loss of 3 pounds per week. Is that too ambitious? I’ve heard smaller, slower loss is more realistic and more likely to be maintained.
3) Working toward a sustained heart rate of 120 when exercising. Is that safe? How long do you exercise?
Perhaps you could run these 3 goals by your doc for their input &/or rubber stamp of approval?

@cehunt57

as a get closer to my target weight, I’m about 165 pounds. I’ve been reducing my weight loss rate to about 1 to 1 1/2 poundd per week.

my primary care physician is also cardiologist and also feels the target heart rate of 120 bpm is a little high.
It turns out after achieving that rate for a while I can no longer achieve that rate, although my exercise level has continued to climb.

I think fitness is starting to set in.

I’m traveling now, but I intend to review the nephrologist at Mayo Jacksonville and try to find one that will work along with me to manage potential medications.

My rate of decline of GFR has stabilized since I’ve begun managing my diet and weight loss but I doubt that I can my rGFR climb.

Thank you for your help