I regret so much that I haven’t been taking my medicine properly

[smile-hope]

I was diagnosed with vasculitis 10 years ago, and have been carefully following the doctor’s advice and taking the prescribed medication until about two yeas ago.

Two years ago I somehow forgot how much damage urine protein can do to my kidneys. Besides, prednisone can make my face swollen and I decided to take only one pill a day when I was supposed to take two. Urine protein appeared and I didn’t pay much attention to it, thinking that I would be fine.

Lately I found that my GFR is around 60, and it used to be 80. Creatinine is 100 and it used to be 85.

I did several tests already lately and I don’t think I can come back to my former stage ever again.

I can’t describe how I stupid I feel and how I want to kick myself. I can’t tell my husband because he cares about my health so much and works so hard to support our family. I don’t want to disappoint him....

Kidney disease is a life long battle. Never let your guard down and always listen to your doctor! I don’t want anybody to go through what I just did.

Now I feel so bad. I can’t sleep and don’t want to eat.

[Hidden]

Hi,Please don't compound one mistake with another. Tell your husband about what happened. You didn't mention a kidney-friendly meal plan and if you haven't been on one then speak to your nephrologist, or get one if you don't have one, and ask for a referral to a renal dietitian. Your number is still high enough so that you can take your medications and still be able to slow the progression of CKD. Bring all hard copies of your previous lab results and you and the RD will be able to develop a kidney-friendly meal plan designed specifically for you. That, along with an exercise regimen, getting underlying health conditions in control, taking all medications will go a long way towards slowing the progression of CKD.

Best of luck.

[orangecity41 NKF Ambassador in reply to Hidden]

I agree Mr K. Prescribed diet based on eGFR plus bloodwork results of sodium, potassium, and phosphorus, has helped slow down the progression of CKD, along with appropriate exercise routine My Doctor told me it has helped put off dialysis.

[smile-hope in reply to orangecity41]

Congratulations dear. I feel so happy for you!

[smile-hope in reply to Hidden]

Thank you Mr Kidney. I will work on my health plan, especially the diet . Thank you for your encouragement. I feel much better now. Life is always full of hope.

[orangecity41 NKF Ambassador in reply to smile-hope]

You are welcome. We do the best we can under the circumstances.

[Bet117 NKF Ambassador]

Hi smile- hope,

Welcome to a great community! You are among friends.

I agree, Mr._K and OC,

You can't look back; only forward and keep positive thoughts. Your husband is your partner and friend, consider sharing what is going on with him, so that he can support you as you climb to better health.

I also agree that several of the keys to stop the progression of kidney disease are through healthy eating; a kidney- friendly diet and exercise. It becomes a lifestyle and not a diet as the foods recommended will be both nutritious and appetizing.

Keep an eye on your labs and be frank with your medical team to put together a health action plan to get all of your issues going in a positive direction. If you are uncomfortable with taking prednisone, speak to your doctor and see if he/ she can prescribe an alternative. You are a work in progress and a team.

Please come back and let us know how you are doing as we are in your corner.

Beating yourself up accomplishes nothing but moving forward slowly does.

Bet

[smile-hope in reply to Bet117]

Thank you Bet117! I am feeling much better now. In the past two months, I’ve been working on the cultivation of a better spirit, which is the most important weapon for fighting this disease.

Let’s all be positive and cheerful!

[Bet117 NKF Ambassador in reply to smile-hope]

Hi smile-hope,

So great to hear from you!

I am so happy that you have cultivated a positive spirit and are moving forward. It often takes many deep breaths and a good look out the window on a sunny day to get you going and keep reminding you that life is about seeing the good and not looking back.

If you haven't told your husband, please consider doing so. He is your best friend and support.You won't disappoint him; consider this - if the situation were in reverse what would you do? Sometimes one carries the 80 and the other the 20 and sometimes it reverses.

You are here and will stabilize ! Don't give up!

Keep taking care of yourself and please reach out again.

Love to hear from you!

Bet

[Darlenia]

Oh, my dear! I so feel for you. Thankfully, you have read the tea leaves and are taking it in hand. I respect you for this; I'm sure your husband will too if you chose to inform him. My husband, a diabetic type 2, refused to involve me in his health picture. My husband continued his lifestyle of choice, until he was told he had 7 years left to live if he continued on the path he was on. I was completely blindsided, but together we began to work on his situation. (It was too late to save his kidneys so he's now on dialysis.) We have since become close partners on his journey to a new kidney. I'm sure your husband will be initially disappointed but will then quickly rally to your side. Your decision wasn't deliberate, after all, it was simply a lack of awareness. Yes, your gfr has fallen and your creatinine is rising, but you can live a beautiful, long life with those numbers if you take care of your health and stabilize them - you have sufficient time unlike my husband. So that's good! If you discuss this with your husband, do so with positivity; your numbers are a warning, not a death sentence. You are to be commended in taking the initiative and reacting to it meaningfully - that is the best news a spouse would like to hear. Sending positivity and hugs your way.

[smile-hope in reply to Darlenia]

Hi dear Dalenia, thank you so much for your encouragement and sharing with us the story of you and your husband. I’m glad to know that you and your husband are now fighting this disease together and I’m sure even your husband is already on dialysis, there is always solution.

I heard the world record of dialysis is 50 years. Dialysis is unpleasant, but it help us to live and spend precious time with our loved ones.

Lots of hugs and best wishes!

[Bet117 NKF Ambassador in reply to Darlenia]

Oh my gosh, Darlenia, what a journey!

Thank you so much for sharing- your courage and strength are both insurmountable and inspirational.

Unfortunately, with diabetes, and other chronic illnesses the acceptance and self care do not always parallel until the patient hits the wall. I have seen this in my own family.

Your story is a testimony to true love and partnership.

Unfortunately your husband's kidneys could not be saved due to his choices but most importantly you are facing the journey together. Despite his being a dialysis patient; together you have a strong meaningful life.

I have hope and will pray that his new kidney will soon be found and it will go smoothly.

I have always believed that adversity and experience makes you strong.

If your story can an help another person not make a mistake as he did and model love as you do, than when the storm subsides you will find a greater purpose for all of this.

I send you hugs, support and prayers and the strength to never give up.

Always behind you both!

Sincerely,

Bet