Hi everyone, I'm 31 and I just found out I have stage 4 CKD, egfr 29. It came as a bit of a shock! I had reduced kidney function a few years ago after getting vasculitis but last I knew it was back to normal and I never really worried about it. I wish now I'd paid more attention to what they considered 'normal'. I don't remember any of my stats or even what stage I was in!
Anyway just here for support I guess. My doctor only called and told me yesterday so it's all still fresh. Lots of tears! I'm going back for another blood and urine test in two days and they've put an emergency referral through to the renal unit. I was supposed to be going to Cyprus for a week on Saturday but now they've said I might not be able to go. Obviously my health is the most important but it's still rubbish!
Reading through these posts has been so helpful. Does anyone have any advice of questions I should be asking in my first appointment? Anything I can be doing immediately to stop it reducing further? Thank you!
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Lauraisliving
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Welcome to our community. It must be a real shock for you to suddenly get this diagnosis especially after everything has been normal for so long. Thank goodness your doctor is on the ball and has acted promptly. I am posting here some web links for more information about the disease progression, lifestyle choices you can make and what to expect. The Kidney Care UK link if you scroll down and look on the right-hand side of your screen you will see pdf related documents/factsheets with Q's to ask your doctor which you can download.
Hope this helps. Please do keep in touch and let us know how you are doing. We are here for each other to listen and support one another emotionally and hopefully offer some practical support too. Ok folks please pop by and welcome this new member to our community.
Thank you so much for those links, they’re really helpful! I think last time I just buried my head in the sand and wanted to take my medication and think about it as little as possible. Older and wiser this time though! Hopefully they can figure out the cause and I can make the changes to slow it down as much as possible!
Don't know where you are from, but here are additional sites:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Also, click on the posts and/or topics at the right and you will find a wealth of information. You can also click on the circle at the top of this post and find many of my posts and it will also lead you to many other posts from people who are dealing with ckd.
The more you know, the more you will know what to ask at your appointment. Remember, just about every one of us on this site went through your anguish and many of us have been able to turn things around to some extent.
Below are questions I prepared for the 2nd nephrologist I saw. I was not happy with the 1st one, so I requested a change, after about a month. Still not thrilled, but I know a lot more now:
Questions regarding potential renal acid load—acidosis—how can I manipulate my diet to reduce the acid load?
How can I successfully manage CKD for the long term?
What is my diagnosis? What is my prognosis?
Are there additional tests I should be undergoing? How often should I undergo blood tests?
Am I suffering from any of the common complications associated with kidney disease? How should these complications be monitored and treated?
Will my kidney disease progress? What symptoms should I expect as my disease progresses? What symptoms should I be looking out for?
What are my treatment options, both short and long term?
What are the possible side effects of my treatment?
How will my treatments affect my day to day living?
Are there changes should I be making in my life style that will slow down the disease progression?
When should I be contacting my family doctor or nephrologist, or going to the emergency room?
Where can I find additional information about kidney disease? Are there support groups you can recommend?
Bring a list of medications, including OTC ones with you and ask the doctor about any medications and dosages that may not be good for you considering your CKD issues.
Ask about consulting with a Renal Dietitian to set up a meal plan with kidney-friendly meals that align with your lab values for minerals like calcium, protein, potassium, phosphorous, and sodium. Those should be in the labs you've had done and take those with you when you see the Renal Dietitian.
Ask your doctor about an exercise program for you (something you can do during all four seasons) based on your CKD and other health issues.
How much water should I be drinking?
How can I make sure that PP gets copies of all reports?
How can we ensure that Dr. PP is educated regarding kidney disease?
Thank you so much! Especially for the list of questions! I didn’t ask anything last time so determined for this time to be different! Just keeping my fingers crossed it isn’t too late!
Something you could be doing, which is common to everyone diagnosed with CKD, is to eat a kidney-friendly diet, reduce your consumption of salt (no salt substitutes either as they are very high in potassium which many of us have to cut down on even though we all need some in the diet). Also cut down on, or, better still, eliminate smoking and alcohol.
You have not told us if you have any other medical problems, but a moderate amount of exercise will help you too.
However, there is nothing better than following the advice given to you from your particular professional team as everyone's experience of living with CKD is different, with different causes and symptoms (if any). Although there is no cure, a lot can be done to try to maintain one's stage of CKD for as long as possible. Hope this information will help you to put your questions to the doctor - with my best wishes, Curleytop1.
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