worried

[Alex2333]

hi everyone my name is Alex . I have had a bad year. on April I had surgery to remove a cancerous tumor that was taking over my left kidney and wrapped around my vena cava vein. they removed my tumor and my left kidney. Recovery was so painful and my right lung was full of water and I had a hemorage on my right lung area. it's been horrible and my right lung still hurts when I breathe. To make things worse I just saw my kidney doctor 2days ago and he told me that I have stage 3 kidney disease 1.64 creatinine. I was shocked and very sad because I thought they had removed all the cancer. but I have kd and I feel scared and need to start taking care of my only kidney. if anyone can tell me where to start to take care of my kidney. please let me know because my doctor gave me no information.

[Hidden]

Hi,

Relax and know that you are among like-minded folks. Since you are in the US getting knowledge about CKD is fairly easy. Go to the davita.com website and register for a free 90-minute Kidney Smart class in your area. It's taught by a kidney knowledgeable professional. They'll provide information and handouts that will help you on the road to learning about CKD and how to care and slow down the progress.

On the same site, you will also find a drop-down tab for Recipes that will provide you with kidney-friendly meal options. None of the recipes are designed to be taken as is. Based on your lab values for the last few months or so, make adjustments to the ingredients regarding your personal needs. Specifically, look at the sodium, potassium, phosphorous, protein, and calcium content and where you need to cut back. Ask your nephrologist for a referral to see a Renal DIetitian for help in determining the path to take.

I also use drugs.com for a medications review site. Be sure that all of the doctors on your Care Team have and are prescribing medications that are not harmful to CKD. Sometimes, they are too high of a dosage and sometimes there is a better med available. Also, take no supplements without your doctors okay. A few may be helpful but be wary of those hyping claims of restoring your kidneys and curing your CKD. There is no cure, just ways to slow down the progression.

If you need help understanding some of your blood and urine labs, use labtestsonline.org to look up each test for a better understanding of each.

You are already here and this site has many knowledgeable folks who are willing to share information with others. Becoming proactive is the best way to stay calm and strong. There are some additional websites that you can go to and the Kidney Smart class will provide you with a lot of information including the websites of many of them.

Come back as often as necessary to share with others.

[Alex2333 in reply to Hidden]

thank you for responding and thanks for your information. I'm definitely going to davita and I will ask my Dr for a referral to a dietitian. I hope your doing well

[Bet117 NKF Ambassador in reply to Hidden]

Well said and great advice!!

[Charlene_Coxhead]

Hi Alex

I'm so sorry to hear that you have had such a tough and demanding year. I really hope you have had family and friends, as a good support network will help on your low days.

Stage 3 sounds scary but to be honest your in a good position because you can make changes to delay things.

I'm angry for you not being given any advice because how are you meant to know what to do. I wish the medical profession concentrate on being proactive rather than reactive it would save millions.

Do you have a renal consultant or was it just your gp telling you this info.

It's hard to tell you exactly what to do as each kidney side as is very different. Lots would say watch you potassium levels as generally people with renal disease have high so need to avoid food high in potassium but I'm the complete opposite.

I would push to see a renal dietician and of you don't have a consultant demand one.

Stay as active as you can going for a 30 minute walk three times a week if you can as this will help keep you heard healthy and the rest of you. If you are overweight then try and lose some and stop smoking but that's just because smoking is unhealthy and not related to your kidneys 😉

Try and keep with a health diet cooking from scratch as you need to watch your sodium levels. If you add salt to vegetables or pasta when cooking stop that and don't add salt to your meals.

The more help you give your kidneys the longer they will last.

I was diagnosed at 21 with 20%renal function and up until 3 months ago I was stable at 7.5% with not dialysis. I was told in 2009 I was six months away from dialysis and a beat the odds and again 2 1/2 years ago again I was getting ready but turned it around. This was all done through medication and diet and health lifestyle. Don't leave making changes to tomorrow like so many do. I know you want to help protect your remaining kidneys else you wouldn't be on here.

Definitely seek a renal doctor and there will always be some one here to help. But please remember your renal disease if very individual so one fix doesn't fit all.

Take care

Charlene x

[Alex2333 in reply to Charlene_Coxhead]

Charlene thanks for responding, I could use as much advice as possible. I have been trying to change my diet. I have an appointment with my primary dr next week to give me a referral for a renal dietitian. I definitely need to change my kidney Dr. thanks again and I wish u the best

[LorrieC in reply to Charlene_Coxhead]

Charlene,

So many are talking about medications for CKD. What medications? Is there a medication one can take to stop it from progressing? Meds for hypertension, etc or a medication specifically for CKD?

[Charlene_Coxhead in reply to LorrieC]

Medication depends are what you have and how ckd is effecting you. Some have high blood pressure, some have issues with high potassium some low so there is no specific drugs.

So there is no miracle cure unfortunately.

Some people have no medication it's all about diet and life style changes.

Sorry if that hasn't helped

[ecc_active]

Hi Alex, so sorry to hear what an awful year you’ve had that must have been horrendous and hope you are on the mend. In terms of advice for your stage 3 kd, I’m also stage 3, (tipping into 4) and have had kidney disease secondary to lupus since the age of 16. I’m now 27. As long as they monitor you properly there can be slow (if any) progression so try not to worry too much as at stage 3 with a creatinine of 1.64 you probably won’t have too many issues with daily life from it. Although saying that, everyone is different, but I’ve been stage 3 for years now and still work full time, go to the gym, etc etc.....In terms of information Devita is a really useful site for information. But everyone’s needs will differ. For example, only this week have I been told to watch potassium intake as It was high in bloods. Never been told to make any other adjustments regarding food/drink etc...had to limit fluid intake in the beginning because of severe oedema. But now just to keep exercising and to stay hydrated and watch salt/potassium intake. Definitely get under the care of a nephrologist that you trust.

Good luck with everything.