Been dealing with KD for 1.5 years. My doctor has me on a variety of meds that includes-BP, Chol, Lasix,Farxiga,Eliquis, Cytoxan and Prednisone-plus a few more. Always tired. My current EGFR-49, my creatinine level is-1.47, and my urine/protein-14.34. I am suppose to start Rituximab Infusion as soon as I call. When I ask how my kidneys got this bad-no real answer or etiology. Ask why my kidneys are not responding to treatments/medication- I get -sometimes it takes longer than normal. I ask about a diet- I was told to eat protein because my body is losing Protein. When I read the forum -it states to limit your protein. I am 57 yrs old with two boys and because of the swelling in my body-it's hard for me to do things I want to do with them- feeling crummy and feeling like a failed father. Feeling lost right now
Struggling to understand all this. - Kidney Disease
Struggling to understand all this.
What is your CKD level? Perhaps get a second opinion, and inquire about a CKD diet. Here is link to information on eGFR levels.
ckd level?if you re not getting answers id try for second opinion and maybe new nephro
If I criticise medics on here, I receive some hate-mail type replies so won't to hassle.
But your story (and numerous others) indicate to me that your healthcare could maybe be ever so slightly better 🤪 Id suggest considering a natural approach for CKD treatment. Most do with good effect including my 67 y/o mum with her CKD (results available, on request).
definitely get a 2nd opinion and maybe a new nephrologist. Do you know why you'retaking all those different medications?
Hello Jeep65. Sorry to hear about your situation but I think I can help. First off, I'm curious which kind of doctor has you on all those meds. Is it a Rheumatologist? In 2017, I was diagnosed with an autoimmune disease called GPA.
(Granulomatosis with polyangiitis (GPA, formerly called Wegener’s) is a rare disease of uncertain cause. It is the result of inflammation within the tissues called granulomatous inflammation and blood vessel inflammation ("vasculitis"), which can damage organ systems. The areas most commonly affected by GPA include the sinuses, lungs, and kidneys, but any site can be affected.)
Over a period of 4 months, I saw 5 different doctors and none could identify what was wrong with me and then my kidneys failed completely. My creatinine was 8.5 and my GFR was 8. I was put on Azathioprine and Prednisone immediately and later down the road I went through 8 transfusions of Rituxan. The Cytoxin you were given does pretty much the same thing as Azathioprine. Both Cytoxin and Prednisone are immunosuppressants which are used to tamp down your immune system. Has your doctor mentioned Anca in any of your conversations? There is a blood test that checks for P-Anca and C-Anca. One of these is usually present when GPA is active. I was on dialysis for about a year then my kidneys started recovering and I am now at GFR of 31. I researched your drugs. Farxiga is for type II diabetes and diabetes is one of the major causes of CKD. The Eliquis is an anticoagulant. I remember when I was in the hospital, they were injecting my stomach with Lovenox (enoxaparin sodium) which is also an anticoagulant. Start Googling treatments for GPA and see if you think this might be what your doctor is trying to do. One drug you'll read about is Cyclophosphamide. That is the transfusion version of Cytoxin. Both of these meds are very harsh on the body and Rituxan accomplishes the same outcome with less severe side effects.
Thank you for your comments. Your are the first person not to reply, "get a second opinion" as if we are not intelligent enough to think that way. The reason I am on Eliqius- they found four blood clots (PE) around June 2021. Last year in December- I completed two infusions of Rituxan and my body responded really well. All my numbers went down and my EGFR- went up to 68. My doctor-Vanderbilt put me in this new drug and it completely reversed all my progress. My new doctor doctor at Vanderbilt- is doing a great job but is working behind the eight ball. She is my 3rd Nephrologist. I will look into GPA and address this with my doctor. Autoimmune disease does run rampant in my family-lupus and rheum. However, I test negative for both. They believe all this started due to get Covid back in Jan 2021- that when I started to get all the swelling, my BP went up, and my kidneys took a turn for the worse-foam in the urine.
I would just be really curious as to why she has you on so many immunosuppressants.
Oh my. I should have recognized from your post that you have Wegeners. I had a colleague with that too. You are truly a warrior. Keep on keeping on!
Just to let you know about folks recommendations on here. When we don't know the whole story, it is harder to comment accurately. Second, we're not doctors, so it's not like we can actually diagnose anything, so it is best to seek professional help 99% of the time. But then occasionally a post will come along like the one from LL where they've been through similar experience and can pass on their own personal info. To be honest, with all the issues people deal with, some are not common so it's hard for some of us (me for sure) to have anything worthwhile to post cause we just don't know anything about a particular ailment or issue. Not that we don't care, it's just outside of our scope of knowledge. So forgive us for not readily responding with a lot of helpful information. We just don't know anything to offer when we don't post or if we suggest you seek professional help. We truly hope you find a solution. I have my own special issue that is preventing me from continuing with PD currently that I've not found one person who has had similar issue, and none of 5 doctors have been able to offer any solutions to date. I have a nerve in the Sacral Plexus that is going bezerk and causing extreme pain when I have the PD solution in me. I plan to post more about that later and see what responses I get from everybody. I truly hope you can find a resolution to all your questions. Wish I could help!
I'm always amazed at the knowledge of folks like you on here. But at the same time, it's unfortunate that you have this knowledge. My guess is that you wish you didn't! Bless you for sharing all of this.
Wow that's a lot to deal with. In addition to my CKD I have Graves Disease which is an autoimmune disease that causes hyperthyroidism. No one in family has this. I also have a rare retina disease which no one can figure out why. Covid really sucks and those who get it suffer even though most people thing it's no big deal. I hope they find out a reason and you get back to being better.
hey jeep talk to your doctor ask why am I on these medications what is each suppose to do tell the doctor that you need know why there is a reason they put you on medication and each of us our different yes I read on here and other places to limit protein but when I told my doctor I was doing that he said why you need protein don’t do that . Yes there a lot of good advice on here but always share with your nephrologist what going on , what you don’t understand . I always bring my daughter in law with me to my visit cause if I forget something she will bring it up . So I suggest write everything down or bring someone with you to the doctor visits.
Hey, question for you. Did your Neph say why not limit protein? I read over and over that protein is hard for the kidney's to process, which makes them work a lot harder, which I assume means they fail faster (putting 2 and 2 together there). So if your doc said NOT to limit protein, did he/she give you a reason? Just curious as I'm currently doing research on how much protein I will need once I go on partial PD dialysis (if it works that is), and what kind-animal or plant or combo.
When I first started hemodialysis, my Albumin level was very low so the center dietician told me to eat lots of protein to bring it up. I was eating eggs, yogurt, tuna, and ground meat. I don’t know about protein being hard on the kidneys. You would think that when my function was so low, they would say stay away from protein but it was the opposite. It’s a mystery! I had an issue doing PD also. Sometimes I would get a terrible pain in my left shoulder during the drain process. The doc and nurses at the center told me that is referred pain. Another symptom during drain was when pretty much all of the fluid was out of me but the machine kept trying to pump more out, it felt like my butthole was being sucked into the machine. That was painful also.
I was givivi g up protein completely he told me I need lean protein I can’t recall his exact words something with amino acid I know he said it help repair
Ahh, ok, So you went from zero to lean, gotcha.
Peritoneal dialysis filters out protein very efficiently along with toxins. So most everyone on PD will need to put protein back into their diet. Our nurse visually illustrated the removal process using a screen and rolling different sized marbles representing proteins, phosphorus, potassium and more across it. So we saw how PD works first hand. My husband's kidneys naturally removed protein in the beginning but then, as his kidneys continued to lose function, he was urged to increase his protein intake.
Did the illustration show that the kidneys are not supposed to filter the protein into the urine but put it back into the bloodstream? They should filter the potassium and phosphorus.
Thank you! I should have said my husband's kidneys initially kept his blood protein levels within a decent range. However, HD and PD extracts protein; our nurse's illustration re PD (not kidneys) showed that well. Hence the requirement (for my hubby anyway) to eat more protein. You're right - if kidneys are in good shape they will filter potassium, phosphorus, protein waste, produce hormones, etc. Nothing better than one's own kidneys working for you. But grateful there are alternatives should they fail.
Hey, just making sure I have the story straight for any newbie folks reading any of this. So did you husband REDUCE his protein intake in stage 4 and 5, then INCREASED his protein intake after he had been on dialysis a little while. Is that right? That seems to be the consensus I'm finding in most comments, like this one from Bananas2007:
healthunlocked.com/nkf-ckd/...
Yes. That's exactly what happened - he was asked to increase his protein intake while on dialysis. His increased protein intake may have helped somewhat with his low iron levels that occurred then too, but he wound up getting expensive Epoetin injections for it anyway. Anemia is common among those on dialysis. So, yeah, there's a dialysis diet that's generally less restrictive than the renal diet.
Hi. I was diagnosed with Primary Membranous nephropathy in 2020 id gained 18 kg in water retention . My Plar2 antibodies were over 700.
My Serum albumin levels were extremely low and my body was not holding onto anything. I was rapidly vaccinated before the Rituximub infusions.
They did clear the antibodies I'm pleased to say that my body has recovered.
You will feel better soon. I was a 50 year old mother and grandmother. Have faith.
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