Can anyone help?

[Love101cats]

I've been on the heart failure community for some time. It helped me care for my husband till his death then my own, heart failure (2/3). So it's a shock to be stage 4 kidney failure. How did this happen.? I was having regular blood tests. When did I have stages 1,2 &3? I was supposed to see a consultant on friday but it was cancelled because I'm clinically vulnerable. I had a phone call from a nurse who was very helpful and confirmed I was stage 4 and would not go back to 3 but the plan was to prevent me moving into stage 5. I admit it's scary but I'm a great self helper but there is so much stuff to trawl through and time may be short. My bloods will be tested every two weeks and they are arranging an ultrasound. Medication is being discussed with heart consultant. So if any of you were where I am now and can suggest what I read and digest would like to hear please.

[orangecity41 NKF Ambassador]

I am age 79 and was diagnosed at level 3b CKD about 4+ years ago. Some things to discuss with your Doctor is a diet appropriates for you and check on a class on Kidney 101 given by Davita. It was helpful. The diet has slowed down the progression of CKD. You have come to a good forum for support, and information on our CKD journeys

[Olivia007]

R u diabetic? My mom was diabetic and had heart failure and was on dialysis. She never followed a diet and ate what she wanted I still believe if she took her meds and watched what she ate she would have been feeling better. But she didn’t she would love to eat and drink beverages all kind but with heart failure and dialysis u r only allowed a certain amount of ounces daily. Good luck and watch ur diet and take meds if u do take any.

[Sammi_n_Munk]

Hello Love101cats. Welcome to our community. I’m sorry to hear that you’re going through so much distress. With CKD, even stage 4, I don’t believe that steps can’t be taken to, at the very least, slow down the progression. That’s about all we can do for ourselves on this journey. Not sure if your medical team has referred you to a renal dietician or not, but if not, you should certainly ask your PCP for a consultation with one, as they can use your most recent bloodwork results to compose a diet plan best suited for you at this point.

There are also many websites you can visit for more information on kidney function, and kidney disease, and also sites like DaVita.com for some lists of foods to avoid and such. You may be able to have better control over your readings by following these tips:

1. Stay away from any anti-inflammatory medications whether prescribed or over-the-counter such as Advil, Motrin, Aleve and Aspirin. These are known for being tough on the kidneys. Tylenol would be a better choice for pain relief providing you don’t have any allergies to it, or any liver issues.

2. Try to maintain a diet that’s lower in protein. Steer away from red meats, processed foods of any kind, protein bars or shakes, nuts, seeds, beans or legumes (lentils, chick peas, etc.), any whole grains including whole wheat bread or pasta, barley, quinoa, etc., dark sodas, chocolate, and any foods that tend to be high in sodium, potassium or phosphorus. Eat mainly fruits and low-potassium veggies and stick with lean proteins like fish, chicken and egg whites. And your protein portion size should be about as big as a deck of cards. If you smoke, try to quit, and only a little amount of, or no alcoholic beverages.

3. No strenuous exercise, especially weight-lifting. This tends to raise creatinine levels. Also, keeping yourself well-hydrated is always beneficial. This helps to flush your kidneys and your entire system. Ask your physician about how much water daily you should be consuming, with respect to the heart failure issue.

4. Ask your physician about what type, and how much, exertion you can engage in on a daily basis, as a little exercise, in order to maintain a healthy heart rate, can also be beneficial.

Aside from the DaVita website, there is also the NKF, kidneyschool.org, and some others I believe. You should know that this is a very warm community with many wise people that will often share their experiences and sound advice with you. I’ve been a member here myself since September or October of last year, and I have found it to be very helpful in better understanding my CKD journey. This community is very supportive and so knowledgeable, as well as inspiring.

Once again, welcome to the forum dear. Remember we are always here for you! I look forward to reading more of your posts! Do take good care! Many blessings. Bye for now! 😊👍🙏✌️

[Love100cats]

I'm struggling with DaVita as they wont accept my phone number. It certainly looks like an interesting site. I prefer written information as I can go over it as often as I need to. Up to now I've had just one adjustment made which is lowering my diuretic every other day by one tablet. I've noticed my urine output is more erratic and weight goes up 1lb the day after reducing the dose. But it's only 1 week. Let's see what this week brings.

[Jayhawker in reply to Love100cats]

Love100cats,

First, take a deep breath. You’ll be on this journey learning as much as you can for quite some time. I wish I would not have worried so much over the first 3-4 years following my diagnosis. Below are the things that were most important for me to gdo first:

1. Prepare a set of questions for my nephrologist. (Hopefully you’ll have a face to face appointment very soon.)

2. Modify diet (low sodium, low fat, watch the carbs —I’m a diabetic—cook from scratch eating fresh fruits and vegetables as well as boneless, skinless chicken and fish.) (I rarely ate red meat before my CKD; I never eat it now.)

3. Drink plenty of water. I don’t drink anything but water.

4. Take any prescribed meds. No OTC meds.

5. Track your weight and BP daily. You can table this information and take it in to your doctor’s Appointment.

This is plenty to change over the first 3-4 weeks as you begin working with CKD. There will be plenty of time to read. And your nephrologist may have reading materials he if she will suggest for you.

The aforementioned was the best use of my time over the first 3-4 weeks after getting the diagnosis. Then I did my best to get on with normal days where I focused on interests and activities that I enjoy. And I made a point to do something I really enjoyed, e,g., go to the symphony , for myself at least once a week.

Jayhawker

[Love100cats in reply to Jayhawker]

So me good sound advice. Thank you so much.