Newbie

[Cinnamondog]

I am new here. Just found out I have stage 3 and really overwhelmed. Creatine had been high for years and doctors did nothing . I should have been more involved but this year I said enough we need to find out why . Blood pressure in normal and no diabetes

[Dustypye]

It can be overwhelming. I cried when they told me (over the phone) that I was stage 3. That's when I was diagnosed. I tell my friends that it's like when your cell-phone is almost out of power and you forgot your charging cord. Talking to other people who are dealing with CKD is scary at first. You hear all of these different stories. But, it really affects everyone differently, so, don't read someone else's story and think that it will be yours too. Read up on the symptoms and recognize them if/when they occur. And remember, fight for yourself! Sometimes these transplant centers can have a "conveyor belt" mentality and treat you like a number and not a person. Remember, you're a person!

[Jenkea in reply to Dustypye]

Just had Dr appt and my kidneys had slightly improved from 6 mths ago I'm stage 3. Been eating tons of Blueberries and strawberries and watching sodium. Apart from a few diet changes I carry on As normal.

[hazel-hearty in reply to Dustypye]

Yes this interruption (CKD) is overwhelming. Taking care of yourself is vital and being an advocate for yourself is also very vital. Always remember that you are not CKD, you have an interruption, aggravation, whatever you want to name CKD. Start cooking for yourself by planning your meals. DaVita Recipes is a great place to start and substitute whatever herb or seasoning you like. In our kitchen we never use salt except what is naturally in the vegetables or foods we purchase. We never eat or buy processed meats, or prepared foods because they are loaded with sodium. Our go to enhancer is Costco's no salt seasoning. I monitor closely the amount of potassium and phosphorous in foods, I work on slowing down my HR by mediating and my breathe. I take time to exercise daily. For example, this morning I rode 11.5 miles on my bike. Yesterday I did Barre and yoga. As I do for my diet, modify I also modify my exercise classes. My GFR is 15 and I have lived for 76 years and which to continue living and appreciating my surroundings and most important to see my precious grandson work towards his efforts. Hope this help you keep a positive light on this CKD situation. The best to you.

[BBland in reply to hazel-hearty]

How long have you had / been diagnosed with CKD?

[Hidden]

Welcome You are not alone, especially here. There are lots of places to go to get information to help you understand your specific situation. Study your labs and know what they mean. Learn as much as you can about CKD and your specific situation. Yes, you are a person and should be treated as such, but more importantly, you are your own best advocate. The more you learn and understand the better you'll know that you have a strong team around you (PCP, Nephrologist, Renal Dietitian, etc.) and can ask intelligent questions and know when you get a "you specific" answer. A good way to start is to go to and see if there is a free class in your area. kidneysmart.edmeasures.com/... class near you that will help you get started on handling CKD. Best of luck.

[orangecity41 NKF Ambassador]

Welcome Cinnamondog to a good forum. I had similar situation. My new Doctor diagnosed me correctly at 3B (1 1/2 years ago) while previous Doctor did not recognize the symptoms and bloodwork showed declining kidney function for several years . I was put on a "pre-dialysis diet" and prescribed exercise routine. Doctors' goal is to stay off dialysis as long as possible. Things are going fine.

[Dixidude39]

Per Mr. Kidney, I took the 90-minute FREE Kidney Smart class offered by DaVita, the national dialysis chain. Taught by one of their nurses, It was packed with valuable information.

[Cinnamondog in reply to Dixidude39]

I plan to take the class soon Thanks

[cmaxwell78 NKF Ambassador]

Hey there. You sure came to the right place. You're right that each of our health journeys looks different. Where we can all agree on is that the uncertainty that can accompany learning news like you just have is something everyone experiences. Kudos to you for taking control and deciding no more to not being as involved as you can be in decisions about your health! We're here to hear your ideas, plans, and progress! Take care, meantime.

[Cinnamondog in reply to cmaxwell78]

Thanks

[Cinnamondog in reply to cmaxwell78]

I was going to one doctor he said it's stage 2 don't worry about it . I couldn't stop thinking about so I changed doctors and she moved on it fast . Had ultrasound two days later and appointment with a renal doctor in two weeks It is stage 3 don't understand the other doctor telling me wrong

[Jenkea in reply to Cinnamondog]

My Dr won't refer me to a Nephrologist Says it's too soon stage 3

[orangecity41 NKF Ambassador in reply to Jenkea]

Jenkea: From what have been seeing on other posts, that might be true that some Doctors think stage 3 is too soon (had one that did too) .. Maybe insurance issues?? Don't necessarily agree with that as think the earlier you can start remediation, the better.

[BBland in reply to Jenkea]

Oh no no no. Insist on a Nephrologist . Be your own advocate . Best of luck to you.

[Catmommy in reply to Cinnamondog]

It's typical. When I found out I asked my doctor thru the patient portal why they missed it at my previous annual physical. Instead of answering my question he said he looked back thru my records before I became his patient and that I had ckd since 2012. So I got a double punch in the face. He was just covering himself not caring that it would be an even worse shock for me. I am now my own advocate and follow the renal dietitian's advice based on my labs. I play pickleball 3x a week and walk and keep my stress level as low as life allows. I'm so sorry you're going thru what I did last August. My husband was no support at all as he was pissed I was sick and how it would affect his life and wouldn't talk about it. I was so alone before I found this group plus a closed group on Facebook. I read everything from books, online davita stuff and reading posts. I'm in charge now and I deal with the fear of the future. It will take time, but you will accept it as your new normal and go back to enjoying your life.

[orangecity41 NKF Ambassador in reply to Catmommy]

Catmommy: Your post is so true about diagnosis. Guess depends on the Doctor's evaluation and good you too got another Doctor to get a treatment plan. I was fortunate to get the new Primary Doctor also.

One has to be proactive for your health and good you are doing that. We will make our goals to be off dialysis for as long as we can, even though at times the diet can be frustrating. Are you on the "pre-dialysis diet" or another renal diet?

[Cinnamondog in reply to orangecity41]

Not yet but I am taking a class next week

[Catmommy in reply to orangecity41]

I am following the diet my renal dietitian prescribed based on my labs. If my labs change I will return to see her for new instructions. Davita uses some ingredients I don't likem. I cook real food without any salt added and stick to the portion size. I've gone from 125 pounds to 114 pounds as it's very restrictive. I use lemons and garlic to add flavor.

[Cinnamondog in reply to Catmommy]

My husband isn't very supportive either. I plan on having him go with me to the Renal doctor so he can hear everything first hand .

[Jenkea in reply to Cinnamondog]

My husband isn’t supportive either, never spoke about it since I told him in June .

[orangecity41 NKF Ambassador in reply to Cinnamondog]

Cinnamondog:My wife went with me to a Davita Kidney 101 class. It was very helpful to both of us. Maybe something to consider if you have a Davita in your area.

[Jenkea in reply to Catmommy]

since I was diagnosed my husband doesn’t talk about it either, he has never asked one question, I don’t think he knows how to handle it

[Catmommy in reply to Jenkea]

That's probably true. Bringing him to your appointment is a good idea. After a few months of leaving me alone with no support dealing with the worst diagnosis of my life, he admitted that he couldn't handle it because it meant his life too would be affected adversely. Once I saw the dietitian and realized I could control the progression I accepted my situation and didn't think of myself as sickly. I could stay at stage 3 for a long time if I followed the diet, drank my water and exercised which for me is playing Pickleball 3x a week. I hope the same for you!

[Jenkea in reply to Catmommy]

Thank you. I'm meeting up with an old Dr friend in 2 wks , she is going to review my labs as a favor I'm so glad

[orangecity41 NKF Ambassador in reply to Catmommy]

Catmommy: What you wrote is so true. Great encouragement. Diet and exercise can work.

[maxwell03 in reply to Catmommy]

hello I'm in the same boat I found out last October through my ob/gyn who stepped in because of the issues I was having. And after having a ultrasound and going back through blood work. Its been bad since 2012 . I called my PCP and asked why he didn't do anything yrs ago he didn't have anything to say. I was so mad. I switched Dr. In Jan of 2017 and working with the kidney Dr now . Its not a fun rollercoaster I see him every 6 weeks

[Catmommy in reply to maxwell03]

It's really sad that so many doctors order labs and then pay no attention to the results. And of course we the patients are the ones who pay. Thank God for your fun I who caught it and your under the care of a nephrologist. Please see a renal dietitian next with your labs in hand and get the diet instructions just for you. The best to you, the best to all of us!!

[Cinnamondog]

What did they tell you to do? Did he give a diet or anything ?

[Jenkea in reply to Cinnamondog]

Nothing. I even asked to see a dietician for help but he said too soon I'm doing it all on my own from reading He said no need for me to change my diet. Somehow I went up a point.

[orangecity41 NKF Ambassador in reply to Jenkea]

Jenkea: Thanks for post I am in similar situation. My Primary Doctor told me she can handle CKD treatment and her secondary specialty is chronic disease. Things are going ok with treatment. So think will be watchful and discuss with her further. ( I got referrals to specialist for other conditions.)

[Jenkea in reply to orangecity41]

What is she telling you to do? Mine said no need to change my diet but I did anyway My kidney improved slightly no thanks to him. Just other on line folks advising me

[orangecity41 NKF Ambassador in reply to Jenkea]

Doctor put me on a pre dialysis diet and prescribed zetia, Omega 3 and vitamin D. Also exercise routine.So far working.

[Cinnamondog]

Wow lots of diets on Pinterest hope he doesn't tell me I am coming to him to soon . But my primary doctor is sending me

[Hidden in reply to Cinnamondog]

Try going to davita.com for recipes. They give the breakdown on all nutrition information, including things you don't normally see on package labels. It's never too soon to see a nephrologist. Get to know the doctor and build a relationship with that person and know that they are willing to work with you and accept that the decisions you make are based on knowledge. The idea of building a care team that includes, you, your PCP, nephrologist, renal dietitian, and others is important by Stage 3 for you to be proactive and taking control of your healthcare.

Best of luck.

[Jenkea in reply to Hidden]

I have asked my Dr twice if I can see a Nephrologist and or dietician, he says no and my condition is mild at this point Worries me .

[Cinnamondog in reply to Jenkea]

I had to change my primary doctor because he told me not to worry about it too. He told drink more water ! I couldn't stop thinking about so I went somewhere else and the first doctor told it was stage 2 when it's really stage 3

[Jenkea in reply to Cinnamondog]

It's hard to change Dr where I live. There is a shortage. What is your new Dr telling you to do ? Did you do other tests besides lab work?

[Cinnamondog in reply to Jenkea]

Yes new doctor did blood work n send me for ultrasound. I don't have high blood pressure or diabetes so she wanted to make sure I don't have a tumor. Which I don't thank god but it showed stage 3

[Jenkea in reply to Cinnamondog]

I took myself off blood pressure meds and I'm doing great with that. I need to ask about an ultrasound, he will most likely say no.

[Cinnamondog in reply to Jenkea]

Hope not but he will listen

[Hidden in reply to Jenkea]

You should be worried. You should also consider finding another doctor, a PCP, that will be part of your care team. Make sure your new one is willing to be open and honest with you and understand that any final decisions will be 100% up to you to make. Same goes for the nephrologist. Find a doctor who will follow your wishes now, not later. In the meantime start being proactive. Stop smoking if you do, cut way down on any alcohol drinking, try going to davita.com and look at their recipes and change what you need to make your meal plan kidney-friendly. After you see a nephrologist consider finding a Renal DIetitian and bring you most recent lab values with you so that person can see where you are with controlling protein, phosphorus, sodium, calcium, and potassium.

It's your health, your life and your opportunity to stay off dialysis as long as possible. Keep all of your doctor appointments and take things seriously. You are the most important member of your care team as well as your spouse or significant other.

Good luck and come back here for support.

[Cinnamondog]

I was just checking the schedule for the class . I think I will go before my doctors appointment so I know a little more about this disease