Nephrologist Visit

[TopazForests]

I saw the nephrologist today and am so glad that I did. First, she is a total sweetheart and spent a lot of time asking questions and really listening to the answers. Then she spent time telling me what she thinks happened and what she thinks will happen in the future. Everything was positive and I liked what she had to say.

She agrees with my PCP that the kidney damage was caused by long term use of inflammatories for my arthritis and metformin. She said that both my diabetes and high blood pressure are under control and appear to have been for a while. I talked about my weight loss and she talked about how that could impact kidney function for the short term. She said that she not only would clear me for the weight loss surgery that she emphatically supported it.

Because my PCP had just lowered my BP meds in July she is leaving them the say and predicts that she will soon need to reduce them again. She also thinks that it is very likely that once I lose weight that I will be off both of those meds.

As an update to my kidney stone situation, she said that absolutely I should take the Potassium Citrate to dissolve the kidney stones. She is contacting the urologist's office to have them send over all the images so she can see those.

She talked about the Farxiga and said she thinks it is a good med for me to be on. She said it does have a drying or dehydrating effect on the kidneys. As it eliminates sugar in the urine that causes the kidney to pull water from everywhere to help do that. I told her that I drink at least 64 ounces of water a day and possibly more and I have to start logging my water intake as part of the process prior to the weight loss surgery. Next time I see her, I will have all those water logs for her to see. I may have to drink even more water.

She wants me to do a 24 hour urine collection (what fun!) and has sent in the orders for that. She took blood work today and wants to do that again in a month. She is going to add what she wants onto the bloodwork my PCP has already ordered for next month. Being within the same large hospital/clinic system make it easy for them to view the same lab results.

I asked about protein and potassium intake and she said at where I am and my lab results over the last 2 years, she doesn't think I need to be on any dietary restrictions. Which is good because that allows me to follow the guidelines for weight loss surgery.

[Dana66CKD]

TopazForests, sounds like good feedback from nephro overall. So happy to hear you have an involved md to help guide you through this challenging life event.

No dietary restrictions sounds awesome...

I see my nephrologist next Tues., whom also happens to be a woman at my request. Hope she is as knowledgeable and competent as your md seems to be🙏 and I hope we click. Trust is important, as well as feeling that the doctor cares enough to listen to any questions or concerns I may bring up.

Good luck with your surgery and hope you stay well and enjoy improved health and well being. 😊🙏

[TopazForests in reply to Dana66CKD]

I told my husband that it felt like I won the lottery with her. My PCP referred me to the Nephrology group in general and I told the receptionist when she called me that I wanted the first available appointment. I hope your doc is just as wonderful.

[Dana66CKD in reply to TopazForests]

My Nephrology appt. was uplifting! My husband accompanied me there. Dr. very knowledgeable, spent an hour reviewing my history w/me, acknowkedged my concerns, explained the progression of ckd and what her recommendations are. It was refreshing to have this doctor spend so much time on my case. Though it appeared my situation not as urgent as I'd thought initially, my nephrologist will see me routinely every 3-4 months, monitor my labs and autoimmune disorder effects if any changes. I feel that she is very competent, thorough and will be there for my future concerns. She appeared sincere in her advice. 😊🙏

[TopazForests in reply to Dana66CKD]

Yay! It sounds like your doc is much like mine. Just visits every 3 months to monitor bloodwork and make sure nothing changes. We can do this happy dance together.

[Darlenia]

Glad you had a wonderful visit with your nephrologist and things are looking up for you! We all need those good days. Keep on keeping on!

[Blackknight1989]

Thanks to both of you sharing your positive experiences with your specialist. Unfortunately it isn’t routine for some as there are many nephrologist who believe they only add value when they can recommend dialysis after we get to stage 5. Like you both, when I was initially diagnosed then the victim of a awful doctor who’s bad decision caused me to go quickly from CKD to AKI (in 4 days), I though luck of the draw got maybe the best nephrologist in Arkansas. He truly saved my life so those who are good add tremendous value to those of us with CKD at any stage.

Your shares provide the answer to anyone reading who may wonder if they should see a specialist as both the NIH (US) and the NHS(UK) recommend after initial diagnosis no matter what stage you are in. Certainly visits as y’all’s go a long way towards helping us live with our disease as normally as possible and does ease worry over and above seeing any other doctor on our team. Great posts thanks!

[TopazForests in reply to Blackknight1989]

I have an excellent PCP, but as most primary care docs, she knows a little about everything and the referral info for a lot of specialists. Some of the things she told me about CKD is similar to what you read online and is very general. The nephrologist knows mostly about kidney disease (although because of the connections she also knows a lot about diabetes and hypertension) and was able to give specifics based on my case and previous testing.

An example: most info on CKD says to severely limit potassium and sodium. My nephrologist has access to all labwork back 10 years and she was able to check the levels of so many things, then she asked me a few things. Like when things were off in October 2016 and I told her about my fall, injured leg, multiple surgeries and very long hospitalization. Then those lab results made sense. That is when she said that I didn't need to worry about dietary restrictions since my labwork didn't show that it was a problem.

My husband had labwork done this week and his creatian is off along with his eGFR, neither of which are as bad as mine. I'm going to say he is at Stage 2. However, his is a diabetic with A1C too high and his bp is not stable. His PCP (not the same as mine) had him start NSAIDs when hubby mentioned a stiff wrist. Tylenol would have handled the pain and some specific movement exercises from a PT would have handled the stiffness. I am going to guess the nephrologist will take him off the NSAIDs and metformin. She is going to address the A1C and bp. Not sure if she will change the meds or if she will contact the PCP to do that. He will see the same nephrologist that I did and I'm sure she will take the time to explain everything to him. He won't be as happy as I was because I'm betting she will recommend dietary changes for his diabetes and also because his potassium level is high normal.

[Blackknight1989]

That is great Topaz. A quality care team is key to conquering all the issues that arise with the progression of our disease. Keep in mind that only in the last 3/4 years has a serious amount of money poured into CKD research from both public and private sources. Some serious changes have been made to the way our disease is treated and the “history” of our disease versus the new guidance from the agencies driving the historic changes in research to treat or affliction sometimes don’t align. Most of the time docs can’t keep up so please especially with both you and spouse having this is to get smarter than anyone else on your care team than maybe your specialist. No one will ever be a better advocate for you and your top quality of life than YOU! If you don’t do it than who, will you really put that kind of complete trust in your doctors? They see what maybe 100/400 patients, do you really believe they will advocate for your health decisions better than you? If you do that, I believe as patients it is the most important thing we can do over any medical change we can really affect in our health. It is all out there and if you don’t do it who else will. I’ll offer you my list of sites I use and I spend about 4/5 hours researching a day. If interested I’ll post but I don’t want to seem authoritative only trying to be helpful. I wish you the best!

[TopazForests in reply to Blackknight1989]

I'd love to see the links. From what I gathered from the nephrologist my condition was caused by decades on NSAIDs for my severe osteoarthritis and long time use of Metformin. I also have diabetes and high blood pressure, plus morbid obesity. Both the diabetes and high blood pressure are well controlled. I am in the process for weight loss surgery with an expected surgery date in early January. Basically, I am taking control of my medical conditions. I think that's the important part of any chronic condition, knowledge and taking control with the help of the medical team.

[Blackknight1989]

I applaud you and your commitment to overall health. Should go a long way to help maintain your kidney function. Both the females in my family have had the weight loss surgery. Forget the ancillary benefits of any perceived improvement in appearance, the health benefits alone make the surgery a huge benefit to anyone who truly needs it. It changed the health of both my wife and daughter and will no doubt prolong their lives due to the health benefits. Health insurance companies are behind the times, among other things like virtually worthless. I wish you the best of luck in the journey of maintaining you optimal health for a lifetime and wish you success!