Venting

[Kathleen2017]

I have had nothing but fatigue for some time now. I was dx in Oct 2017 with CKD 4. There is nothing to do but be tired and feel like crap. So basically I was told there is not much to do. So I sit here with horrible headaches, dizziness, nauseau, some concentration issues and forgetfulness. Oh and I guess the urine color is not a problem. I keep trying to learn more about this disease. But I do not think there is anymore to learn.

[itzmich]

So sorry Kathleen you are feeling so bad. I'm sure you have talked with your Dr about something to help with your symptoms. Maybe its time for a different Dr and hopefully one that will help you and give you some answers. I know how overwhelming this disease is. Hang in there I'm hoping and praying for you.

[Kathleen2017 in reply to itzmich]

Thank you.

[rascal01 in reply to itzmich]

Advice i can give you is educate yourself on the disease. Important to follow diet and such. There is so much more to learn and know that a Dr. or no one else can tell you. Listen to what your body is telling you! Everyone is different. Wishing you much good luck.

[Bassetmommer NKF Ambassador]

Oh Kathleen, there is sooo much to learn. You can take control of this disease and can possibly retain what kidney function you have. You can definitely improve on your fatigue and other symptoms.

The first thing is to decide whether this doctor your seeing is going to be the correct one. Are they a nephrologist or kidney specialist, and if not, you need one. Next see if you can get an appointment with a RENAL dietician. There is so much to learn about what you eat and how a RENAL diet can change so much of how you are feeling.

Do you understand your labs? Had the doctor run a series, especially a renal panel and then review it with you? Did you have several labs done to determine your stage of CKD? Things can change from one lab to the next. Here is a place to learn about renal labs: kidney.org/atoz/content/und...

You need to advocate for yourself and demand that your needs are being met. It is not a selfish thing to do, but your doctor left you hanging there as you stated in your post.

Take it upon yourself to become educated. There is a ton of information out there. A good place to start is to go through the topics on this site and look at some of the posts from other members. There is a lot of information along with lists of other websites to visit.

Become your own hero and fight for what you need. You can feel better very quickly and it will empower you to take care of yourself.

kidney.org/atoz/content/abo...

BTW, the symptoms you mention are common for patients with stage 4 CKD. I too am at stage four. But I have tons of energy now. I follow a renal diet that limits protein and I watch my potassium and phosphorous. I take a iron supplement which was prescribed by my nephrologist because I was severely anemic and had been for a while. That is no longer an issue. I have maintained my kidney function now for almost a year.

And Lastly, please know you are not alone. There are many of us here for you. Ask questions once you figure out a bit more. You don't need to feel like you do. We will support you.

[Kathleen2017 in reply to Bassetmommer]

I do have a nephrologist. He is my second one after a bad situation in the hospital having biopsies done a year ago to find out what caused my Stage 4 CKD. I saw my nephrologist yesterday. He told me my symptoms must be something else. He said my labs were good. My GFR was high at 24. That is high for me. He said my anemia is under control and 3 months ago told me to no longer to take iron. I have asked a few times about a dietician and was told there was no concern. Just watch my salt intake. The hospital I went to for biopsies I complained of sever pain increasing. I said I did not want pain meds I want to know why my biopsy site was so painful. They told me nothing was wrong and the ultrasound found nothing. I spent 2 days home and became weaker and very pale. I went in the ER at a local hospital they did labs, urine, and CT scan and found internal bleeding. They compared my labs from the hospital and my numbers continued to get worse. That was one year ago. Since then I have had nothing but trouble. I am grateful to not be on dialysis. But I know there is something to help me feel better. I do not like living in a cloud ya know.

[Bassetmommer NKF Ambassador in reply to Kathleen2017]

Kathleen,

We can't comment on what your doctor said because we do not know your values. Do you get a copy of your lab reports? You should always ask for a copy.

And is definitely more you could do with diet. So I would suggest you find a different doctor if they refuse you a renal diet consultation.

Again, do your research and become educated on what you can do to help yourself.

Best,

[lovestimpy]

Hi Kathleen, I was diagnosed with stage 4 CKD recently also. My nephrologist didn't really say too much about it. She told me I was drinking too much water and to switch to drinking Sprite. I am very anemic due to the kidney disease so she started me on Procrit. I have to go once a week for a Procrit injection. I really like my nephrologist and I think she is very knowledgeable and nice. Are you anemic at all? I was thinking I should be on dialysis but I guess I'm not at that stage yet. Did your doctor mention dialysis at all? I am so sorry that you feel so bad. Did you ask your doctor if there was anything that could be done to help you feel better? I understand how bad you are feeling and my heart goes out to you. I hope you feel better soon.

[Kathleen2017]

Yes I am anemic. I have asked about dialysis and he said there's no need. He said that my symptoms are depression. I go to a therapist to deal with this. It's not. I have all my bases loaded. Since Thursday things have gotten worse. I have shaky hands. I can barely keep my eyes open. I sleep constantly. And walking is so hard to do. This is not normal. I feel like I'm in a coma like status. This is taking time to do. Even talking on the phone exhausts me. Not sure what else is going on. I'm covered with lots of blankets. I'm freezing.

[lovestimpy in reply to Kathleen2017]

Hi Kathleen, Thank you for your reply. I hope you do find a doctor who can help you. It really does hurt my heart that you feel so poorly. Let me know what happens! Love ya, Teri

[itzmich]

So sorry.......please see another dr. I can't believe that there is nothing they can do for you. Thinking of you.

[Kathleen2017 in reply to itzmich]

Thank you!!

[itzmich]

Are you doing any better? Thinking of you and hoping you are.

[Kathleen2017 in reply to itzmich]

I did see a new Nephrologist about 10 days ago. Things are hopeful.

[itzmich]

That's great, best wishes in your journey.