Just waiting : Hello, it’s been a while... - Kidney Disease

Kidney Disease

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Just waiting

Whomikey
Whomikey

Hello, it’s been a while since I posted anything but I do read everyone post almost daily or least three til four times a week. My numbers GFR from 57 til now 30. My question is do most Dr have a “no big deal” until your numbers hit stage 5 and stop working all together. I like my Drs but seem we will wait til I hit stage 5 before anything will happen. I am very fatigue most days now. Still working full time til I reach that point I can’t. (Which I feel is closer than I think). Not sure what any of the Drs CAN do until I reach stage 5. Just more concerned from them I guess. Anyone have advice pre-stage 5 and pre-dialysis. Just waiting til the day my one working kidney stops. Thanks for help/pep talk will help 🤕

6 Replies

Hi Mikey

You talk about doctor is this GP or renal doctor? Sorry for the question just I know most don't get a renal doctor until there function is lower?

Now kidney disease is a hard one and because we know we have it we tend to put every element with have down to kidney disease. I would be surprised if the fatigue was down to kidney disease with still 30% renal function. Have you been checked for anaemia?

With 30% renal function it's all about delaying the decline of numbers by looking after yourself the best way possible. So unfortunately it's the standard things lose weight of you need to, stop smoking if you smoke, stay active, cut salt intake, and eat a well balance diet, and stay hydrated.

All these things are massively important and don't delay making the changes thinking you have time and will start tomorrow as this will never happen. I didn't find out I have renal disease until I was at 20%, 18 years ago so always had a renal doctor since then. It was estimated I would start dialysis in 2009, but I'm pleased to say it's 2018 and with a renal function of 4.5% I am only now going to be starting dialysis after christmas. I have an excellent renal doctor and renal dietician and do believe it's because I have followed their instructions. Some might say you can't live with no many restrictions but to for me I've given myself so many more years dialysis free and when your in your 30s that's important.

Good luck at keeping this numbers up

Charlene

Hi, Sadly that is the case with many doctors. I believe that most doctors are negligent when it comes to informing the patient about a low GFR and what it means and how to be proactive. There is a lot you can do to slow the progression. Consider finding a new physician and begin putting together a Care Team of physicians and other professionals that will provide you timely information and explanations on any and all medical conditions and be comfortable and accepting of YOUR final decision, whatever that may be.

Since you are in the US, go to the davita.com website and register for a free, 90-minute Kidney Smart class in your area. The class is facilitated by a kidney professional and will provide you with much information on kidney-friendly meal plans, the meaning of each stage of CKD, and how to become proactive in managing your own healthcare.

Speak to you PCP and develop a healthy exercise regimen for you to work every day. The limitations will be determined by your other health issues if any. Obtain a referral to a nephrologist and begin the search to find the cause of your CKD and look at all of your medications and dosages to be certain that you are taking the best ones available. Notify all of the current physicians of your status with CKD and ask questions about your medications. You can help yourself with this by going to drugs.com and checking out your current medications. Be wary of any supplements you take and let your physicians know of what you are taking and why. Become knowledgeable of all the ingredients in each supplement you take.

Develop your questions for the nephrologist and the Kidney Smart class will help you develop pertinent ones.

Begin setting up something like a spreadsheet with the results of all of your lab values. This will allow you to track all of your results and show you any possible trends of concern that you can question your physicians about.

Become proactive by researching all the illnesses you have and how each one and its medications impacts CKD.

Best of luck.

orangecity41
orangecity41NKF Ambassador in reply to Mr_Kidney

Very good analysis and post. Thanks for sharing.

Bassetmommer
BassetmommerNKF Ambassador

On top of what my fellow contributors wrote, the thing you can take charge of immediately is your diet. Changing what you consume can help you retain what function you have and in some cases improve it slightly. See if you can get renal dietician appointment. Things to do right now are to cut down on any meat, fish and chicken. If you need to continue with animal protein, make sure you are eating small amounts and very lean. Watch your dairy intake as well. Keep in touch.

kidney.org/atoz/content/Das...

nephcure.org/livingwithkidn...

kidneyfund.org/kidney-disea...

orangecity41
orangecity41NKF Ambassador in reply to Bassetmommer

Thanks for good information.

Thank you all for the responses. Guess I just needed other in my same boat a little pep talk. I am researching all that I can about CKD and how it is changing my life. I have sign up for the 90 min class with Davita.com in Jan. I do watch what I eat and taken care of myself. Just sometimes it gets to me in my head. The waiting game. I know my kidney is going to stop working and I know one day I will need a transplant to live. I know one day I will start Dialysis. Guess I am NOT as Patient as I thought I was. I am only 51 and just found out in 2016 I have this disease. Both my PCP and Neph. are great docs. I want to just jump ahead and get started to what my new chapter in my life. I am thankful for this site. It’s helpful to read other as they walk their Journey and how we relate to each other with this disease. Thanks again for y’all response. Chat more later. 🤗

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