I found this out by reading my after visit summary on the way home from my nephrologists office! He never discussed this with me yet it was listed under the things we discussed today or other related diagnoses. Along with that, at the top of the list was Acute Renal Failure, then Chronic Kidney Disease Stage III (moderate), et al
I can tell you that I was very upset that he did NOT discuss this with me at all. I had to come home and look up what it was online! I still am not sure of what it is and what it means. I have a laundry list of diagnoses.
Today I saw my PMD and asked him about it and he just said it was just a "code, right now there are about 10,000 codes but wait until October when there will be about 80,000 codes" and I don't find that to be an acceptable answer. And I don't apologize for it.
I have an indwelling foley because I have a neurogenic bladder. Thank God for the foley because of all the diuretics I'mm on! I take 2 Diazide capsules 3 times a day, I take one Amiloride a day, and I take 3 Lasix a day. Along with the Lasix comes massive amounts of potassium pills because I can't hold my potassium anymore. So 2 20 meq in the morning, 2 meq. in the afternoon, 2 meq in the evening and 1 meq at bedtime. They are very hard on your stomach. Those are just the diuretics and potassium I'm on. In total, I'm on about 35 medications a day. I'm sure that isn't helping my kidneys any.
For my PMD to just say that the Chronic Kidney Disease Stage III (moderate) is just a code... how is a patient supposed to take that?
I'm the kind of patient doctors don't like. I look up my lab work. I research the diagnoses they give me. I call then out when I feel they need it. For example, while inpatient, my nephrologist did an iron and tibc test and found that I was very anemic. NO ONE TREATED ME FOR IT. It was just added to my list of health conditions. When I got home from the hospital and looked up my labs and saw that, I emailed both the nephrologist and my PMD and called them out on it. They ran another iron and tibc test, which was still low but not nearly as low as when I was in the hospital under their care! My nephrologist ordered two rounds of iron infusions. I don't feel any better and no one has tested to see if it has increased my iron levels.
YOU MUST BE YOUR OWN ADVOCATE! I say this because if you do not, no one else will. You must do your own research. Look things up. Search for your own answers and bring them to your doctor's attention. Remember, they work for you! They get paid $250+ for the 10 minutes you get with them as they are double and triple booked. You must hold them accountable for your health CARE... not treatment. They need to care.
I'm sorry for sounding off, but I just want you all to know where I'm coming from and why I want you all to know how important it is for you to be as informed as you can be about whatever it is that ails you. Your doctor is too busy to do his/her job these days and it will only get worse, not better.
My last words on the subject, BE YOUR OWN ADVOCATE! Your the best one there is!
I am so sorry. It is all about lab tests. The eGFR is what determines if you have Chronic Kidney Disease or not. What I don't understand is the word CHRONIC... that means ongoing. So if you have blood work 4 times in a row that says you have Chronic Kidney Disease Stage III (moderate) and then the next time you have blood work you don't have any kidney disease at all! This is what has happened to me, repeatedly. I do, then I don't, then I do, then I don't. CHRONIC... and then what happens when it says stage 4 like yours? And there is only one more stage... and then what? My nephrologist never said ONE WORD about it to me. When I see him next, he's gonna hear about it!
So what are your doctors going to do? You need a nephrologist, a kidney specialist. Not your family doctor. Mine told me its just a code! What a load of BS! Its my freaking kidneys!
Be to have the appropriate doctors caring for your condition and be your own advocate. If you don't, no one will. I'm sorry to have to say that but you have to police your own doctors now as they seem to not be doing their jobs anymore. You get a 10 min. appt. and they get $250. On to the next patient since the are triple booked.
We need to say, HEY, LISTEN TO ME! I can pull up my lab work on my computer. Most hospitals have that available. Be sure to create an account so you can find out what it really is when they say "oh it looks ok"... and it is NOT ok.
I hope that you can get the care you need. Be your own advocate!View Thread
I don't know about you and your doctor's but mine are all part of a system that requires them to give you an after visit summary. It consists of mostly everything you already know like your current med list. It also shows your upcoming appointments which is nice. It shows your vitals which are too often made up but we won't go there right now.
Today I saw my nephrologist. I read the "conditions discussed today or other-related diagnoses" and was completely shocked.
I had asked him why I was found to be anemic in the hospital and no one treated it but just listed it as another health issue.
So here are the "conditions, et al" 1.) Acute Renal Failure (primary) 2.) Chronic Kidney Disease Stage III (moderate) 3.) Generalized edema (which my PMD blame all of this on) 4.) Hypokalemia 5.) Hyponatremia 6.) Metabolic alkalosis 7.) Anemia
He ordered blood work and an arterial blood draw. My venous blood comes back high in carbon dioxide so he was checking to see how my arterial blood came back. Apparently, that was ok. However, I am still anemic and now I have to set up times for 3 infusions of iron.
I am on 3 different diuretics. He has added an extra potassium to what I am already taking. Two of the diuretics are potassium-sparing but I had been on Lasix for so many years that I don't slide down, I fall off a cliff and both he and my PMD know it. Hence the bolster since my potassium is at 3.4 prior to his BMP today. I haven't seen that lab work yet.
Does anyone have anything to offer about all of those diagnoses all of a sudden all at one and not one word to me about it? If so, I would appreciate it! Thank you!View Thread
The paperwork states we 'discussed' these diagnoses but we did not. I brought up the anemia and asked why I wasn't treated for it while I was actually IN the hospital when then tested for it and it was very low then. They just added it to my list of medical conditions. The hypokalemia is something that both my PMD and my nephrologist know that I don't slide down but drop off a cliff so being that the last labs show me at 3.4, he wanted me to add another 20 meq at hs. Being that I have COPD, I had expected to find fluctuations in my venous CO2. The hyponatremia was a surprise to me as was the metabolic alkalosis.
To be quite honest with you, I was shocked by the acute renal failure and the chronic kidney disease stage III (moderate) was quite shocking to me! I had no idea I had either of these. I know that last year after I came home after my back surgery, I went into acute renal failure and just missed going on dialysis.
I'm on an 1800ml fluid restriction. I have a problem with chronic edema which has cause chronic lymphedema and my PMD says the anemia is related to the edema.
I have a port so having to go to the DTC for the infusion is ok with me. But I am obviously not producing enough red blood cells, and hemoglobin, hence, enhancing my shortness of breath. I will take that up with my pulmonologist when I see him next. Perhaps now I will qualify for portable oxygen. I don't know. I don't understand how these diagnoses can suddenly pop up and no one has ever talked to me or my husband about them!
Thank you for your input, John-skpt! It is appreciated!View Thread
So what did it turn out to be? Did you go back in or go to your primary care and tell him/her the ER said you need to have your pancreas checked? Pancreatits is very painful as I watched my hero of a man reel in pain in the ER due to his cholesterol medication. Once the pain and swelling went down, and he started taking a statin instead of one of the newer cholesterol meds he was fine.
Your post was a month ago so I was just curious how things turned out and hope they turned out in your favor!View Thread