I'm feeling confused because I'm getting no... - Kidney Disease

Kidney Disease

6,785 members2,737 posts

I'm feeling confused because I'm getting no treatment from any hospital and having trouble getting appointment with a nephrologist.

Smokey2014 profile image

I was diagnosed with stage 4 ckd..renal insufficiency..my GFR is 22..my creatinine is 2.5..BUN 41..Been to 2 E.R's in 2 days because of fatigue, pain, nausea diarrhea..This was found during a annual checkup..I knew I felt sick for 2 months didn't know why..sent home by E.R because they said nothing can be done until GFR is 20 or below and require dialysis. Trying to get an appointment with a nephrologist but it takes time to get in..

Still under no doctor's care. My family doctor said he can't handle kidney disease..

Any suggestions to feel better till I can get an appointment with a nephrologist..

I can hardly stand up anymore.

My kidney function is still dropping according to the bloodwork drawn both days at e.r..

25 Replies
Bet117 profile image
Bet117NKF Ambassador

Smokey,

What an awful ordeal! At this point it is key that you begin to receive competent medical care.

Is there another ER that you can be seen in to initially diagnose the problem, call in a nephrologist or refer you to one on the spot?

Both your local ER's and your family doctor reflect negligence and incompetence. There is no excuse for this.

At this point, I feel that it would be in your best interest to find another family doctor and make an appointment immediately!

If a doctor is neglecting your symptoms and telling you that they are UNABLE to treat kidney disease, forget not listening to you, it is imperative that you find a doctor who will! You have been through enough! Even an Urgent Care Center can refer you to a decent GP/PCP and nephrologist.

Please take good care of yourself and let me know how you are feeling and your progress in finding a competent team of doctors.

My prayers are with you!

Bet 🙏

Smokey2014 profile image
Smokey2014 in reply to Bet117

I'm finally happy to say I'm now admitted in the hospital for acute renal failure.

The doctor is trying to find out why my kidneys went into failure in a short period of time..

One thing they did find out is over the past 3 years he checked all the bloodwork ever done on me.. He said my white count was always very high.

My family doctor never told me. I' m looking for a new family doctor..

Bet117 profile image
Bet117NKF Ambassador in reply to Smokey2014

Oh I am soo happy that you are under medical care and finally having this properly addressed!

Sit tight and see what they come up with. Unfortunately, many health care professionals are not professional and neglect.

The important thing is that they detected your low white count and are treating you; medical, diet and direction.

While you are hospitalized, ask for a recommendation of a good PCP rather than hunt.

Health grades, vitals and web md have ratings and patient comments which may be helpful.

Most importantly, you put together a team of doctors who will work with you, listen, communicate and guide you!

Sending you strength and healing thoughts!

Please reach out and let us know how you are doing.

Bet 🙏

Smokey2014 profile image
Smokey2014 in reply to Bet117

Right now I'm hospitalized since Monday..

Had a normal renal ultrasound, normal c.t but still in stage 4 renal failure.. 3 grams of protein in my urine..GRF is 26.. my creatinineis down from 2.5 to 1.8. Going for a renal biopsy today to try and find out what's causing this renal failure..

Bet117 profile image
Bet117NKF Ambassador in reply to Smokey2014

So happy to hear from you, Smoky!

Sit tight and see what the continued labs and biopsy show.

The biopsy is more frightening in theory then the actual procedure, rest and be monitored.

Great sign that your CT, Ultrasound are normal. If your white count is up, see if a urologist will do a Cystoscopy, which will complete the battery and allow his/ her opinion to be reflected.

At least your creatinine came down, which is a plus. They will come up with a reason why you are spilling protein and are in renal failure.

Stay strong and remember that the hospital is the best possible place right now. They will figure it out, once bases are covered.

Sending you healing and positive thoughts..

Please continue to keep us in the loop, and remember not to hesitate to reach out to one of us at any time!

Bet 🙏

itzmich profile image
itzmich in reply to Smokey2014

Thinking of you and praying for the best possible outcome.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Smokey2014

So glad you're finally getting the care you need. Acute renal failure is much different than chronic kidney failure. Have they scheduled an access procedure and a dialysis session yet? Did they go over your lab values and what were they, especially the white count? Do they suspect infection? Acute failure means you'll need dialysis asap, have they already done that? Blessings

My nephrologist wants a renal biopsy done today..

I was told I don't need dialysis yet because my creatinine is coming down a little and my potassium level is still normal..

My GRF is still only 26..

He said he will know more with the results from the biopsy..

My renal ultrasound is normal and my c.t scan was normal..

My white count is high and there's 3 grams of protein in my urine..

Urine is very foamy now..

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Smokey2014

Okay so if your GFR is still 26 and creatinine is 1.8 then acute kidney failure may not be accurate. So glad things seem to be improving. Keep us updated. Blessings

Yes..they do suspect an infection somewhere in my body causing the kidneys to fail..i'm still in the hospital waiting for the renal biopsy results. The nephrologist said once the results are in he can start to treat me aggressively.

I agree with Bet117, You should really be under the care of a nephrologist, I would find another PCP to refer unless you don't need a referral, in which case I would check out some nephrologist's credentials and get an appointment to one ASAP ! You need to find out what is going on. In the meantime drinking plenty of fluid, especially water, eating a kidney friendly diet and moderate exercise could all possibly help you at this point. Take good care of yourself.

Sorry to hear what you've been going through.

I would think any hospital in any major city would have a list of nephrologists that they can refer you to. You can also find one online using this tool: doctor.webmd.com/find-a-doc...

You'll want to find out what caused the kidney disease as soon as possible and have that treated to preserve and possibly improve your GFR. Diabetes and Hypertension are the #1 and #2 causes of kidney disease. Additional lab tests and possibly a kidney biopsy may be necessary to determine the exact cause.

In your initial consultation with the nephrologist, you'll also want to ask what can be done to make you feel better on an immediate basis. For instance, you mentioned you're experiencing fatigue. When kidneys aren't functioning properly a person can become anemic as they don't make enough red blood cells. Severe anemia is treatable with a certain medication (a hormone that stimulates your bone marrow to produce more red blood cells), but your doctor will need to do a certain lab test to see if this medication is appropriate for you. Treating anemia may also help your nausea. Dietary changes can also make you feel less nausea. If you're experiencing shortness of breath on exertion, this may be caused by anemia and/or fluid retention, both of which are treatable. In fact, there are a lot of things which can be done to make you feel better before it becomes necessary to start dialysis, and these things can possibly help preserve your kidney function:

1) Eat a healthy, low-sodium and low-protein diet. I recommend asking your nephrologist for a referral to a renal dietician to put together a proper diet for someone with your stage of CKD.

2) Optimize your salt and water balance. Are your ankles swollen? If so, it may be necessary to take a diuretic which your doctor can prescribe.

3) Control your high blood pressure, if necessary.

4) Treat acidosis. Acidosis is excessive acid in the body fluids and is a complication of kidney failure. A doctor may treat this with over-the-counter medications and may make you feel better.

5) Treat high serum potassium. It can be dangerous if your serum potassium gets too high, so ask your doctor about this one if it applies to you based on lab results.

6) It may be necessary, based on lab results, to start taking an active form of vitamin D since diseased kidneys don't make enough of it. Again, this is based on lab results, but it will help raise serum calcium levels and help prevent bone disease. Kidney patients often have bone pain as a result of bone disease.

7) Manage your high cholesterol, if necessary.

8) Manager your high blood sugar, if necessary based on labs.

9) Avoid certain over-the-counter medications which can do harm to the kidneys.

You and nephrologist can put together a treatment plan based on your lab results. Certain lifestyles changes such as getting enough sleep and cutting out drinking alcohol and smoking cigarettes (if it applies), will help your kidneys and will make you feel better. Getting out and walking in the sunlight every day is the best source of vitamin D and will help your kidneys.

Hope you feel better!

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to steve680

This was good and sound advice.

Bet117 profile image
Bet117NKF Ambassador in reply to steve680

Well put and thorough, Steve!

Thanks!

Don't know where you live, but you do need to report incompetency on the part of your doctor and the emergency rooms you visited. Your personal physician should have referred you to a nephrologist as soon as he/she determined your numbers. Also, most hospitals have nephrologists on staff who can be called in while you are in the hospital.

Smokey2014 profile image
Smokey2014 in reply to lowraind

I'm finally admitted in the hospital...

My blood pressure went sky high..

Right now they are trying to find why I went into acute renal failure..

I finally see a nephrologist tomorrow in the hospital..

Bet117 profile image
Bet117NKF Ambassador in reply to lowraind

Agreed!

KidneyCoach profile image
KidneyCoachNKF Ambassador

So sorry to hear you recent visits and lack of referrals. ER departments can do little in helping manage chronic conditions, they manage EMERGENCY situations. If they believed you needed medication for diabetes, high blood pressure, anemia, high potassium they likely would have given you a few days to a weeks worth and encouraged you to see a doctor who could help manage chronic diseases.

1 Did you request copy of your lab results?

2 Did they discuss your results with you?

3 Did you request a referral to either a PCP or Nephrologist?

4 What were your primary goals and expectations from the ER staff and did you go with list in hand?

Dialysis generally isn't indicated until eGFR is below 15%, with most being under 10% and some even waiting til under 5%. ER generally don't do a dialysis treatment in hopes you'll feel better unless your lab values including eGFR and other criteria necessitate such.

I would be cautious about over drinking fluids as this could easily over tax your kidneys. The ER and PCP are correct in that there is little they can do in managing CKD. No incompetence or negligence on their part. You can easily contact any major hospital or your primary Dr and request a list of nephrologists or referral for one. If you are in U.S. I may be able to help you. Send me a pm with your city/state and I may be able to find a list for you.

Meanwhile as others have suggested control your blood sugars if diabetic, high bp if hypertensive, exercise, eat well, prevent infections. See your PCP for stuff until you can get to a nephrologist.

Please let us know how it goes.

Many Blessings

lowraind profile image
lowraind in reply to KidneyCoach

Managing is one thing. Referring is another. Culpability is in not referring.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to lowraind

Sorry I agree however from my own experiences "reporting" neglect or incompetency is useless. Reporting a specific issue that goes beyond neglect or incompetency are far more to be flagged and addressed. "neglect or incompetency" is considered one of those "in the eye of the beholder" as it can be interpreted differently by each person. Wish you all the best. Blessings

WYOAnne profile image
WYOAnneNKF Ambassador

Everyone is correct......you need a doctor that is willing to work with you. I am post transplant now, but when I was in kidney failure my primary doctor worked closely with my nephrologist. The two of them together kept me as healthy as they could.

I would have expected that when you went to the ER they would have had a nephrologist come to see you. There is always a nephrologist on call.

You can look up physicians online for your city. You can find out their ratings and even find the TOP 10 for your area. 2 years ago we moved over 1000 miles away from where we had been living. I used the internet to help find my doctor and have been very happy with the results.

You need to be under a doctor's care asap. In the meantime, make sure you monitor your blood pressure at home, taking it 2-3 times a day, drink plenty of fluids, and stay away from salt (sodium).

Take care and let us know how you are doing.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to WYOAnne

At eGFR of 22-25 its important not to overload the kidneys with too much fluid. Blessings

I was told by my nephrologist that I would need to be on dialysis when my eGFR reached 10. You definitely need to be under the care of a nephrologist asap. Usually the Primary doctor will refer you & this will get you in quicker rather than you doing it yourself (physician courtesy).

Bassetmommer profile image
BassetmommerNKF Ambassador

Smokey,

It sounds like a nightmare. I hope you will look at some of the advice Steve wrote. Also, you can start doing your own research on the web. kidney.org and davita.com/ are good resources. Fortunately, by reaching out and starting to do some education for yourself you can make some changes that will help you until you can see a nephrologist. Diet is extremely important, so once you find a doctor who will work with you, ask for a renal dietician visit. Good luck and let us know how you make out.

Smokey,

This is all great advice especially regarding Diet- no processed foods, low salt, no red meat, soda, smoking (and if possible alcohol at least till things stabilize and then very moderately) keeping yourself hyderated. Hope you have already found a good primary doctor/nephrologist.

What was your blood pressure like? If it is high then your primary doctor can address that and that will also help your kidney function by lowering kidney pressure.

Praying that you find a way forward soon.

You may also like...