Hi
I just found out that I have Kidney disease, level 3b. I am having trouble dealing with the news. It seems that my lab results have been indicating kidney disease for 2 years and my doctors have ignored me. I just feel betrayed by them and frightened of the future.
I am lucky to have a loving family for support but I could really use some contact with other kidney patients.
Welcome to the forum which is a good place to get information and support from other members. I see that you are abut my age so understand. I was diagnosed at CKD 3b when I was 76 and my Doctor put me on an appropriate CKD diet based on other bloodwork also (sodium, potassium, phosphorus, and protein. It has slowed down the progression of kidney disease. I also attended a class given by Davita, which was a big help in adjusting to the disease. Here is a link to article by National Kidney Foundation explaining the eGFR as related to age. kidney.org/atoz/content/gfr
Unfortunately it seems common for medics not to inform about CKD at least up to stage 3. My dad discovered mum's via online records 5+ years later!
I've concluded it's because medics are so limited in what they can do - but that's no excuse as we can manage/improve matters ourselves. Orangecity41 has already indicated how diet etc can help and others on here can share experiences to make you feel better. Just ask.
I found out I was at stage3 about 3 months ago and I remember feeling panicky and unsettled for the first week or two. Its wonderful that you have supportive family around you. As you learn more about CKD, you will find out that you have more control than you think right now over how it progresses. Sorry you were blind-sided. You may (or may not) need to change some food and drink habits to slow it down. This site is supportive and helpful.
Ollie212, In my humble opinion it is inexcusable that you found out in stage 3. For what it is worth, NKF, AAKP, and NIDDK are working to eliminate that from happening in the future. Here is a link from NIDDK and the CDC to a guide for primary care physicians to help them in both evaluation and managing patients at risk for and with CKD. I include the link because it does have a lot of good info for us. Not that you need to know what will make docs better at taking care of patients now that you have been diagnosed.
niddk.nih.gov/-/media/Files...
As you commented on in another thread, I recommend moving on to different doctors than those you feel betrayed you. I am sure you know that and probably have already started or maybe completed that process…lol!
Don’t be frightened of the future, as I am sure you have read with a few proactive steps listed in several other threads, you can take control of your CKD. That is probably where a lot of the fear comes from, perceived lack of control. However, most of the things around CKD can be controlled and getting control over those, along with education, will help tremendously.
A supportive family is a huge plus. Connecting with us who have faced what is still relatively new to you and who can offer support will be a big plus as well. There are some posters (me included) who like to get into the science and debate the pros and cons of more technical issues. Don’t let us dissuade or mislead you in any way. Support for folks with this life-altering and progressive disease this forums primary objective. With that said, we are all here for you and I wish you all the best as you start your journey with CKD!
I can't say anything positive about the dr. situation you have experienced because it seems as if that is basically the norm. I recently went to my dr. with my recent labs in hand and specifically discussed with her my concern that my tests showed I have kidney disease. With a result of eGFR of 51 I would have appreciated some interest in addressing that. Instead she proceeded to refer me to an endocrinologist within her practice for my long standing Hashimoto's thyroiditis. She would not even consider prescribing the medication I know from long experience I need for that. So the $250 appointment was no help to me. You will do well to do your own research. If you depend wholly upon the medical profession to attend to your needs you may continue to feel disappointed. There are many resources online. Choose among them after determining for yourself how credible they may be. There are You Tube videos and there are websites that can help you understand what to do. Healthykidneyinc.com (Robert Galerowicz, ND) is a good place to get information.
You've arrived at the right place. Many of us have experienced the same kind of doctors.
Fortunately, there appears to be things you can do to slow the disease and I mean no disrespect to say you have age on your side. 3b at 30 yrs of age is an entirely different thing to 3b at 58 (my age) or 78.
If you scan around here you'll see the kinds of things that will help. Diet is one thing and finding a proactive doctor another.
Take hope in the fact that you are not powerless in this - even though its a pain to have to deal with it. You.must be jaded with your history and need this like a hole in the head. Commiserations.
visit: kidney.org/atoz/content/nut...
You can also go to the patient network and get information on diet, etc. NKFPatientNetwork.org
Welcome to our wonderful site.
Please know that many on this site have been able to stabilize their CKD with diet, staying hydrated, and exercise, etc.
You can sign up for a kidney class at Davita.com The more you learn about your kidneys the less scary this whole kidney journey is. Kidney knowledge makes you more knowledgeable and doctors' take you more seriously also. Sorry but it seems true.
You can click on the TOPICS on the right side of this page. There is one for DIET AND NUTRITION and one for STAGE 3 CKD. You can read some of the previous posts, etc.
Check out kidneyschool.org
Thanks for posting the Kidney School link. I just checked it out it looks packed with useful info. I'm going to absorb everything I can there.
Hi Ollie212, Welcome to the forum. I just found this forum about a week ago and have found a lot of support here, I hope you do as well. I think many of us here share your feelings of being betrayed by our primary drs. I wasn't diagnosed or sent to a nephrologist until this week and am now Stage 4. I saw my eGFR getting lower but the primary kept saying "kidneys are fine, come back in 3 months". I fired him, found a new primary who was shocked I hadn't been to a nephrologist and had a kidney scan a couple years ago. Yesterday I sat down and wrote a letter to my former primary care letting him know how betrayed I felt. It was mainly to vent, I don't think I'll send it but I saved it in my computer in case I change my mind. It may help for you to do something like that. Just a suggestion.
It's great you have a supportive family around you. The initial shock will wear off. Then you can education yourself about the steps you can take to be proactive and try to keep yourself in Stage 3.
I hope you'll come back often and bring up any concerns you have or experiences you want to share. We all are having similar issues. Don't try to look too far into the future. Stay in the here and now, and stay strong. It's ok to have a pity party every now and to be afraid sometimes.
Best of luck to you.
Don't be depressed. You have a greater chance of getting hit by a bus than having kidney failure at your age and stage. Just eat healthy and get on some meds. Stop eating meat. It is hard on y0our kidneys.
Sorry to hear that you've been blindsided with the news of kidney disease. It may well be worth your while to find out why your kidneys have lost function. Other than age, there's generally a catalyst causing the decline whether it's high blood pressure, diabetes, autoimmune disorders, etc. Once you have the full picture, you'll be able to target the underlying cause as you also implement a good diet, etc. Being knowledgeable pays dividends.
I’m new here and worried
New Member Intro, Hello Y'all
New to CKD need advice
Advice Chronic Kidney Disease Stage 3 NEW
New eGFR calculation Coming.
