Diagnosis and results from biopsy

[horsie63]

I finally got the biopsy results and my nephrologist says my CKD is due to scarring on my kidneys that is due to high BP. The only time I have high BP is when I'm at the docs. At home it's been well below 120/80 unless I have a migraine. I also have anemia and low vitamin D. He says the scarring is irreversible so does that mean my CKD will get worse and there's no way to get it to be better? There's been no talk of a dietician so I'm going to talk to my regular doc about a referral. I am getting and iron and B12 test to see what's causing the anemia as that is what really is bothering me as I have absolutely no energy and barely get through the day when I used to do ultramarathons.

[Hidden]

While there is no cure for CKD it is possible to slow the progression. Since you are going to speak to your PCP and know the cause ask for guidance in developing an exercise regimen that will work for you. The appointment with a Renal Dietitian is the biggest step to take. Bring copies of your last years' worth of labs and you can help develop a kidney-friendly meal plan based on your wants and needs. Also, bring a list of all your medications and go over each one to see if what you are taking, and at the current dosage, is safe for your kidneys. I'd also recommend setting up a free account at drugs.com. Enter all your medications and track interactions with each medication as well as foods. Avoid all NSAIDs, processed foods, red meat, and smoking.

It's a long journey but a rewarding one if you stick with it.

[horsie63 in reply to Hidden]

Medications are easy, I take one...Coreg a beta blocker. I have Graves Disease, an autoimmune disease that causes hyperthyroidism but it's in remission right now. Thanks for your reply. I'm working on a list of questions for my nephrologist.

[Bassetmommer NKF Ambassador]

HI Horsie63,

I get higher BP when I go to the doctors too. I go every month for an infusion and the girls slap on one of the BP machines. They were getting ridiculous high readings. I know it does go up when I am there but not what they were getting. They would switch the cuff, the arm and still.... it would be high. Finally a more seasoned nurse did a manual check and it was normal. So now, I insist on a manual BP and my readings have been fine. If you are doing readings yourself, I would talk to another doctor about the BP findings. You can get them done somewhere else, like a pharmacy or even you ambulance corp can do them.

You do not say what your GFR readings are or creatinine. Yes, anemia can make you feel very tired. There are many thing to do to help that including just taking an iron pill. But it is a certain kind and you may need a prescription. Same with Vit D. If those are low, that will make a big difference in your engery.

Diet will help once you figure out what is going on. You say you have migraines. Make sure any medication you are taking is safe for your kindeys. Ibuprofen is a big no no.

And yes, you can help your kindeys with careful diet, proper medications and enough hydration. They may improve, some people do. But if nothing else, you can hold on to what you have.

Let us know how else we can support you.

[horsie63 in reply to Bassetmommer]

my creatinine on 9/23 was 1.9. That was the last time it was done. So based on online calculators eGFR was 29. I had abnormally high protein in my urine also.

[Bassetmommer NKF Ambassador in reply to horsie63]

Did your doctor do a renal panel on you? Don't go by what a on line calculator tells you. There are many things that go into diagnosing CKD and it seems from what you are saying the doctor has not been very clear with you. Communication is essential when you are working with your health care team, but you are in charge. So if you would like, we can suggest things to ask the doctor. First of all, ask about the perinephric hematoma and what does that mean for you. Then have them go over your renal panel. There should be a series of labs that should indicate your GFR decreasing and your creatinine increasing. If not, then I would ask why not.

The one thing to hold on to is the fact that CKD progression in many cases can be slowed down. I was put at stage four three years ago and for the most part, have keep my numbers somewhat steady.

[horsie63 in reply to Bassetmommer]

What is a renal panel?

[horsie63 in reply to Bassetmommer]

Okay just got better look at labs. Yes a renal panel was done and the GFR was 29. It said that the Cockcroft-Gault would be better so I did that and it was 23.

Bassetmommer what have you done to stabilize your levels? I'm supposed to get iron and B12 tests done to check on the anemia and if I can get that under control I hope I have enough energy then to start a walking program again. Probably never be able to do an ultramarathon again but I'd be happy with 5 miles a day at least.

[Bassetmommer NKF Ambassador in reply to horsie63]

HI,

I changed what I was eating. I used to eat chicken and fish, but no read meat for over 26 years. I really cut back on protein. So I eat egg whites alot sometimes with one yoke. I cut back on chicken and hardly ever eat fish anymore. I do eat cheese but I watch it. No potatoes, no tomatoes in any form, no squash, no nuts, no,,no,,no.... It sounds like there is very little I can eat, But not true. I eat a lot of veggies made different ways. I make my own bread and even sometimes my own pasta. I limit fruits but do eat apples and applesauce. I grow my own lettuce in the summer and my own herbs. I experiment with foods and try different things. There are way to make tasty food that is good for you. I lost 38 pounds and for the most part it has stayed off. The thing is to stay away from processed foods of any kind. No fast foods as they have a ton of salt. I do not cook with salt, but instead use fresh herbs and different kinds of pepper. I do not eat pre-made anything and I only go to two specific restaurants that will prepare what I want the way I want.

I walk, which is about the only thing I can do since I have psoriatic arthritis. My hubby and I try to walk at least a mile when we can and he has an app to measure it. We walk either down by the lake, or in a nature park. I also try to spend at least two hours every day doing something physical such as house stuff or garden. Even shoveling snow is good for you.

But I also rest when I must. Like today. I do not over do it and push it. There will be a tomorrow if I take care today. So when I am exhausted, and that happens, I rest. Then I am good to go for the next couple of days. I am also 66, which I do not think is old...lolol. We live in a world where people think that have to go go go all the time. But for me, sitting in my garden, even in winter is the best tonic for me when I am wiped out.

When my hemoglobin and iron was low, I was prescribed iron tablets which I took for about 5 months or so. Got my levels up and they have stayed pretty steady. I do eat some veggies which have iron in them, but have to be careful with that as they are also high in potassium, which I have to watch.

The best thing you could do for yourself is see a renal dietician to help you map out a meal plan and edcuation on what will be good for you to eat. If you read through some of the other posts, you will see a lot of variety as to what people can and cannot eat. That is why it is good to see a dietican.

Lastly, the National Kidney Foundation has a peer mentor program. They will match you up with someone who has similar situation and you can talk on the phone confidentally with them. Its a great program. It is free and I highly recommend it for newly diagnosed patients.

kidney.org/patients/peers

[horsie63 in reply to Bassetmommer]

That was so helpful. I have high cholesterol so I don't eat a lot of beef mostly just chicken. I'm not overweight so that's not a problem. I'm looking around to see if I can find a renal dietician in the area but we are very rural. It's one of my questions to the nephrologist when I see him again Nov 3.

[KatyBGood in reply to horsie63]

I had my renal dietitian consult remotely via telehealth. It seems to be the preference these days regardless of access. Perhaps your healthcare insurer could give you a list of covered dietitians who offer this.

[My_Kidneys in reply to Bassetmommer]

You mentioned that " I only go to two specific restaurants that will prepare what I want the way I want." What are their names and how did you find them?

[Bassetmommer NKF Ambassador in reply to My_Kidneys]

One is a local take out place: La Bella Mangia. We started using her when she was still getting established this last winter and we did a lot to spread the word of her business. She really likes my husband and I so she fixes food for me with my directions, like chicken parm with no sauce or greens with no beans. One meal will last two days or more. We order from her a lot. We did a lot of social media things for her, and I am involved in a lot of groups in the Village and we spread the word. Now she is the most popular restaurant in our Village. She survived while the other more fancy Italian restaurant in the Village closed this summer because of Covid... and they weren't as good. The other restaurant is called Otto Tomotto's. The Chef and owner was one of my high school students. I have known the family since he was 16. He is now 30 something. His father had a massive heart attack and they remodified the menu to accomadate "lighter and healthy fair" on many of their items. But he will change things as you need or prefere. Fabulous food. Kid was a pain in the butt in school.

[My_Kidneys in reply to Bassetmommer]

Thank you so much. I will research those two restaurants.

[Darlenia]

Hi Horsie. I read your account with great interest. You have graves disease, scarring, anemia, etc. But what really caught my attention is that you're a former ultra-marathoner....so you were probably running over 50, 100, or more miles at a time. This, in itself, can be damaging to kidneys. (My son is an ultra-marathoner who recently scaled back to protect himself.) In my opinion, it's important to know the catalyst behind the kidney disease diagnosis. As you talk to your primary and as you eventually assemble a "team" of professionals, please throw this in the mix. Their statements will tell you lot about progression and diet direction. Knowledge is power.

[horsie63 in reply to Darlenia]

I wish I was running 50 or 100 miles. I was in fact just walking my 50ks. I was trying to build up to a 50 miler but life changed that...lol.

[Darlenia in reply to horsie63]

Lol, I'm relieved to hear that you "walked" it. Much better for your health. You have an interesting situation going on! I'm hopeful your primary will answer your questions - don't forget to bring a list of questions with you. Please keep us posted on your situation!