Feel out post, tell me how you're doing? let's support each other. ❤️

[Live4Hope]

Hi all, some of us have just been diagnosed while others have been battling this condition for years. How are we all doing? If you're comfortable with sharing, let some of us know when you were diagnosed and how long you've been able to manage your condition. Let's talk about what we've done well and celebrate the small victories.

I was diagnosed not to long ago, maybe six months now? I'm doing "okay". There are days when I get stuck on a future I cannot predict but I focus on my overall successes I made before and during diagnosis:

1. I lost over 100 pounds.

2. I ran two miles without stopping.

3. I made a low sodium meal that was almost as good as I used to cook.

4. I've put on ten pounds of muscle.

5. My body fat percentage is 15%

It's important to remind myself of all the things I can do versus the things I convinced myself I can't.

What keeps my head up:

The amount of people who have managed the condition for years, I love reading your stories, gives me hope. Many of you are why I haven't given up yet because of the support I get on here.

[orangecity41 NKF Ambassador]

Keep us posted on your CKD journey. Thanks for sharing.

[Darlenia]

I love your motivation and drive. My husband could have done so much to turn his life around, but spent the vast majority of his time in denial; not interested in changing his lifestyle. May you go far in life. You have my encouragement and respect.

[userotc]

Good to hear. Did you follow up the Nutritional Therapist links I sent you 1mth ago?

[Live4Hope in reply to userotc]

Hey! I'm glad you commented. I saw you sent me a message but Everytime I tried to view the message in my chat box, it keeps saying I only have welcome messages from the kidney association.

[userotc in reply to Live4Hope]

I've resent original message and then added the 2 links. Hopefully you receive this time.

[Live4Hope in reply to userotc]

I did, thanks! I think the app thinks I had two accounts on here but merged them under the same email, it's very strange.

[ShyeLoverDoctor]

diagnosed at 38. About 12 years at stage 3a. Two years stage 3B. One year stage 4. Dialysis at age 53. Transplant 54. I’m blood type B but took a type A sub 2 kidney as an incompatible match. PRA score zero. Matched 2 of 7 antigens. Transplant beats dialysis any day of the week but is not a cure and I will never be as healthy as I was at stage 2. The transplant medication dance never stops.

My transplant center has a weekly support group which is fantastic. I’ve been hospitalized 4 times since my transplant, 3 were due to transplant meds.

My personal opinion is a lot of the “preserve function by diet” is not true for all people. For some, yes. For others, the disease will progress no matter what. I was in the second category and am still a little bitter at my doctor. I had chronic damage from medication.

[Darlenia in reply to ShyeLoverDoctor]

CKD is such a broad term that has many underlying causes. Agree that for those with polycystic disease, an autoimmune condition, etc. - diet may not go far. But for those with diabetic kidney disease, especially T2D, diet and lifestyle are critical to halt the damage to kidneys. My MIL did that and lived well into her 80s with kidneys functioning well, her son didn't and suffered the consequences. So some conditions are highly responsive to certain approaches, while others are less so. Sadly, like you noted, one size doesn't fit all. It's always a good idea to huddle with one's team