Mayo Clinic Connect
My primary says I do not need to see a kidney specialist. Is this true. My blood chems are ok.
Liked by cehunt57
I have heard that beginning dialysis is a multi-faceted decision and am now wondering if I may relieve some of my fatigue, weakness, imbalance and shaking by starting dialysis. I am currently on the high end of Stage 3 and looking for anyone who can discuss before and after dialysis symptoms/relief.
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@2011panc, I have a friend who is waiting for a kidney transplant and has started dialysis. The last time I talked to him, he was very upbeat about it, even made arrangements to get dialysis so he and wife could take a trip. He says he has much more energy than before and feels good. He does treatment 3 mornings a week, and said he enjoys the time to relax and read.
As for myself, I did not have CKD, but I had acute kidney failure along with end stage liver disease. I had dialysis 3 days per week -in hospital, and out patient while I waited for transplant. It made a difference in my fatigue and edema and energy (keep in mind I was very sick, so any improvement seemed monumental) There might have been more, but the liver symptoms were getting worse.
I know that you are well aware that dialysis filters the toxins that the kidney is losing the ability to do. Has the nephrologist, or the dialysis nurse been able to give you any answers?
@2011panc, In the Kidney and Bladder Discussion – Transplant List, you can find members : @ca426, @ginal, @gaybinator, @mlmcg, @wmoser2613, who have shared about dialysis.
Liked by Kanaaz Pereira, Connect Moderator, cehunt57
@rosemarya Thank you for sharing your (and your friend's) experience regarding dialysis. I have and continue to speak with my team about the state of my kidney disease and care plan. At the last discussion we felt that it was close, but not yet necessary. Right now I am feeling that it is even closer. We will all meet again in November. My lab test are still stable but I am feeling more fatigue and less stamina so it might be time to start.
Liked by Rosemary, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, cehunt57
The websites I've mentioned before and the values shown in my recipes are from USDA National Nutrient Database for Standard Reference, Release. But please, please, please, if you find an error in my posts, math or otherwise, feel free to tell me so I can correct whatever it is. Also, if you try one of my recipes and hate it, I need to know. Not everyone likes the same things. So all feedback, even negative, will be much appreciated.
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor
Please check for errors, always read labels, ask renal care providers if ok to eat.
Mac & cheese:
1 C cooked macaroni-approx ½ C dry (61.6 mg K, 81.2 mg P)
¼ C chopped onion (29.3mg K, 7.3mg P)
1 C non-dairy mozzarella flavored shreds (40 mg K, 40 mg P)
Sauté onion in sm amt EVOO, drain, stir into mac, stir in 1 C shreds, micro 1-2 min to melt
Total 140.9 mg K (7 %) 128.5 mg P (13 %)
Hi, @riveroaksfarm, welcome to Mayo Connect and this large community of people experiencing one or another of untold numbers of maladies, medical responses, second opinions, and after-care prospects. I’m intervening here because of similarities with your situation and uncertainties, and you might find something worthwhile.
I am CKD stage 3 with hypertension, but not diabetic. I get treatment from an internist, a cardiologist, and a nephrologist. My nephrologist is captain of my care (so far as I am concerned) and often consults with an endocrinologist on kidney-affecting hormones. My cardiologist is interested mainly in my a-fib, which has me on Coumadin anticoagulant but without any symptoms.
My primary BP medication for 30 years has been one diuretic after another. Amlodipine lasted only a short time because of swelling in my extremities, a common and vexing side-effect. My diuretic now is Amiloride, a potassium-sparing medication that I need to maintain the right potassium level. I am also on Lisinopril (an ACE inhibitor related to your Losartan) and Carvedilol (a beta blocker related to your Metoprolol). These meds keep my BP pretty stable after years of raging up and down and up again. Diet and exercise are crucial factors also.
Altogether over those 30 years, doctors have experimented on me with some two dozen medications (I won’t bore you with the details, only say that most were dropped after failing to do the job, but if you want to ask me about any specific med, I’ll gladly respond). My nephrologist is unique in that she wasn’t simply searching for a medication that would help — she went after the cause(s) of my symptoms, and she found them in my DNA (my genetics).
Therein is my primary advice: Ask your medical team for tests under the new discipline known as Pharmacogenomics, which examines your DNA comprehensively to identify which medications are most likely to be effective, given your genetic makeup. If possible, insist on this, and get back to us if you want to proceed along this line and need some external contact information to access the tests. In the meantime, perhaps you can get your GP or your nephrologist to explain the risks you face taking your three primary medications. Get back to us any time if you think we can help.
I am a 72 year old woman with CKD stage 3 I also have TBI so it’s difficult for me to put this in words. Your story sounds like mine I am going to ask my nephrologist for that knew testing. My pressure has been high for several years now been trying to get it down at times it is. Couldn’t stay on Amlodipine which did bring it down some. I’m now on ahydrolazine cordevilil Bennecar, I also have A Fib and diabetes but that is 6 so under control with the right food. I’m really concerned about my kidneys went down. I’m on a couple other meds but I am afraid to take all these with the side affects. I do get nausea and weight gain which I am obese already not good for health etc. help I am scared. I don’t know if these drs
Hi, all. I just need to vent a little. Last week-end I started coming down with a cold. By Monday night my airway was shutting down so a friend called 911 and I went to the hospital per ambulance where I was admitted from ER.
By the way, the local hospital, which is affiliated with a state university teaching hospital, offers a renal diet for inpatients with CKD but some of the offerings were outdated and better choices were unavailable on the menu but all in all it was a good kidney-friendly diet so kudos to my "small" city hospital. I did share some of my research with the hospital dietitian and she will be "tweaking" the hospital's renal menus.
I'm home now and doing much better but because I'm temporarily taking prednisone for my COPD and Combivent inhaler, my blood sugars are high when they had been so well-controlled at home before this episode. Both albuterol (in Combivent inhalers) and prednisone tend to interfere with insulin absorption which results in elevated blood sugars so I'm hoping this is a temporary setback which will resolve once I've finished the post-discharge meds.
I'm also hoping that the drop in my GFR from 37 to 35 while in the hospital is temporary. It's possible that the slight GFR drop is related to the viral load of the upper respiratory infection and will come back up once I have finished the COPD exacerbation meds and can improve my renal vegetarian diet a bit after that.
Also my BUN and Cr elevated slightly while I was in the hospital. They tend to be high anyway and I can't seem to get them down much. I'm not on any fluid restriction and I do drink about 6 8-oz glasses of water a day plus other fluids but this doesn't seem to have much effect. Any suggestions as to how to lower both the BUN and the creatinine would be appreciated.
I just wanted to share some of my frustration. Thanks for listening to me gripe.
Liked by Ginger, Volunteer Mentor
Vent away, @kamama94. Letting off steam can help relieve the pressure cooker of frustration and get you back on the healing path that you're directing for yourself. Keep up the good self care.
Liked by Ginger, Volunteer Mentor, kamama94
@rozalia, you and I are almost twins with our CKD, hypertension, and medications (although our dosages may differ). I’m curious about why you were prescribed Carvedilol (a beta blocker) and Amlodipine (a calcium channel blocker) at the same time; I used the latter then switched to the former. Lisinopril and I have been friends for years! Dosages for me are Carvedilol (25mg twice a day), Lisinopril (40 mg once). My third medication is Amiloride (10mg twice a day) as a diuretic; it signals my main difference with you — a potassium-sparing diuretic that accommodates a genetic tendency in my kidneys that fails to reclaim potassium after filtering it out with sodium.
The dispute you cite — regarding the proper target level for your BP — is mine as well, involving the same specialists. My nephrologist favors higher targets for me (an “elderly” 81) than my cardiologist, although he has not challenged the higher targets of 140/90 or less. My primary also accepts my preference for nephrology in dealing with BP.
Your primary sees no role for nephrology in your stable CKD and yields to your cardiologist on BP. In my case, nephrology is the priority specialty on BP, and cardiology is focused especially on the heart and my circulatory system. In one sense, I see an advantage for you in the tension between cardiology and nephrology. Do you think your primary sees nephrology dealing with familiar kidney functions only, not including blood pressure?
My lab tests are ordered mainly by my primary physician to maintain a data base on me; neither specialist has ordered lab tests for three years. All agree that my CKD is stable and unremarkable, and I don’t have any symptoms from it. Now if my medical team can figure out what problem a-fib is causing, I’ll be totally under control of my physical condition.
With TBI traumatic brain injury, I can’t remember if my nephrologist or cardiologist prescribed my carvedilol and Amlodipine, Benecar, etc. For Hypertention. I really am fearful taking these meds but my BP is quite high about 170/85. It’s the 170 mainly. I find my kidney numbers do better when I eat less protein. I am stage 3 about 50 in my egfr. I am a 72 year female. My a fib causes tachycardia fast heart beat and at times bradycardia slow and at times may skip. Drs don’t tell me much, but that’s what I feel in my own body. I have worked with drs and in hospitals all my life, think I’ve seen too much so I’m not as inclined to have much faith in them. My general practitioner feels I don’t need anyone but him. I could be dying and he would say I’m fine. My lab tests are ordered by my kidney dr and my diabetic dr who I only see once a year. I just found out my cardiologist after going to him for several years doesn’t have any lab reports on me. I’ve heard of laid back but maybe he is taking a nap. Lol 😂
@carnes The first thing that came to my mind when I read your post was oh, my gosh! Sure does sound like they're all "laid back." I'm 73 and a retired nurse so, like you, I know a little too much to trust the medical peeps absolutely and blindly. Hope you get the care and attention you need and deserve.
Liked by Rosemary, Volunteer Mentor
carnes, I am equally confused by your situation. I admire your desire to get things explained to you so you know what is going on. That is the best hope we all have. Unfortunately, not all professionals feel the same way. So, my only thought/question is to ask you to consider taking someone with you on your appointments as a 2nd set of ears and voice. Who could do this with you. Your best bet would be someone who could be a consistent companion at the appointments. With your husband working, maybe you have someone in mind.
2nd thought/question – How about having this person make your calls and inquiries for/with you.
Does any of that sound possible? What do you think?
Liked by trishanna, kamama94
@rosemarya, I know a lady who carries a small battery-operated pocket recorder and lists her questions on it as they occur to her. She also takes it with her to medical appointments to record doctor's instructions, etc. And many health providers will give you a print-out of your visit, summarizing what was discussed, what was decided or advised. Some clinics even have an online patient portal where you can look up your visit reports, lab values, physician's notes, email your doctor, etc. Not all offer this, however, so using a pocket recorder might be a good strategy. I think Walmart has inexpensive ones and a lot of the newer cell phones have a recording feature.
Liked by Rosemary, Volunteer Mentor, trishanna
New labs are back. GFR up from 24 to 33, close to where it was before neph increased diuretic only this time BUN and Creatinine or lower. So I've gone back into Stage 3 by staying on my vegan diet and using the recipes – that plus time for my kidney to recover from the extra diuretic are responsible, according to neph and primary. Phew! Neph wants me to consider having vascular access done so it will be there when – or if – needed but no dialysis soon. I so appreciate your support and encouragement during what has been a very difficult time.
Would like some feedback. Not medical advice, just patient opinions from other CKD people. I've moved back into stage 3 CKD and am feeling quite well but neph wondered if I should go ahead and have the arterial-venous access graft surgery some time this year in case dialysis becomes necessary sooner than we currently think it might. I asked my neph to refer me to another neph for 2nd opinion and am in the process of getting an appointment for that consult. I don't want to put anyone on the spot but here's my question: would you go ahead and have the graft done if your eGFR is 33 and your BUN and creatinine are coming down closer to "normal" (but still high) or would you wait and see if your kidney function improves some more? I'm not asking for diagnoses or medical advice, I just want to know what others in my situation might do. Thanks!
Liked by Colleen Young, Connect Director, cehunt57, Ginger, Volunteer Mentor
@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the recommendation of my nephrologist, I had the fistula surgery done 3 1/2 years ago. Still not on dialysis yet. If my eGFR was 33 and holding steady, I would not have the surgery. If it was dropping, I would begin thinking about it, but would probably wait until it was lower. That's my opinion.
Liked by cehunt57, Ginger, Volunteer Mentor, kamama94
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