Hi. I am a 49 year old woman and have CKD all of my life. I was born with duplex kidneys and had them operated on at 2 weeks old. So without boring you all senseless, I’ve been happily getting by on a GEFR of 67 and this year after my annual blood test my GFR has dropped to 55, which takes me down to CKD 3A. I have just had this blood test repeated and sadly it is still at 55. I have been reading many of your posts and felt quite cheered at the idea that it is a really long journey but of course now I am actually really worried. I don’t take any vitamins or any medicine whatsoever, however I drink so much water, try to limit my salt and I do not drink alcohol and I do not smoke. My blood pressure is it a good level but my creatine seems to be high as well. I am slim and I exercise regularly.
Does anyone have any advice for me? I would really appreciate it. I have always felt completely alone dealing with this, but I’ve got really used to that fact I’m not sure what to do next.
Thank you so much.
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EttaBurb
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Good morning EttaBurb. I am sorry to hear you are so worried about your kidney function drop. 55 is still OK. And sadly doctors won't be too worried. I am sorry to hear you say you feel all alone with your thoughts. There is a lovely support group for people who feel just like you with the condition on Facebook. It run by Andrea and its Chronic kidney disease uk. I too was born with 1 very small kidney but was never found out until I was 43 years old. My kidney function has got worse over the years and its now been stable at Egfr of 15 for over 2 years and I am now 68 years old. I hope this information and group will support you. Brian
Thank you so much for your kind words. I will join the support group you mentioned. I do have two kidneys but one is shrivelled and pretty pointless. I am going to consider my diet and see where to go from here.
Thank you. Any advice on what has kept your egfr stable would be lovely. Henrietta
Good morning Henrietta. Sadly we are all different and I don't know why my kidney function has remained stable for over 2 years. I have been told that because of other health problems it will be Dialysis or death for me. Because I have severe copd and Asthma and also I have a pacemaker . I struggle to exercise because of my breathlessness and I am also overweight. The Facebook group will help on your diet and foods and drinks to avoid. I am also in the Facebook group. Take care Brian
Im unfamiliar with duplex kidneys but maybe it has some similarities with a single kidney? If so, I could share some relevant information, much of which I presented in a post on here in February in reference to a scientifically-underpinned blog on the subject.
For example, it indicates the sort of egfr that is reported with a single kidney although I believe there may be some variability due to temporary over-compensation.
Thank you for your reply. Yes I would love to read the information that you shared in Feb. I am just trying to work out my next steps and see how I can stabilise my egfr . I love meat and see I will have to really cut down on it , for example.
The Feb post is linked below. Sadly an admin removed reference to a blog that I referenced (and effectively corrupted some of the text). If you need it, maybe the admin will change back?.
Re meat, I've separately linked a scientific report in the past that indicates the need to reduce meat is overplayed, at least for stage 3 or better. My mum hasn't reduced hers (yet) after 14y at 3.
Indeed - data on single functioning kidney should be viewed differently than data based on two. I assume Etta's doctor (hopefully a nephrologist) is aware. You posted a good link.
Thanks. I hope/trust your hubby's doing ok.Re my link, you were the main responder in Feb. Sadly the blog I linked to make my points was removed by an admin which now makes the post and discussions less clear. Que sera!
"Duplex kidneys" is not a duplicate kidney but rather, a kidney with multiple ureters. There's an article from Children's Hospital of Philidelphia that explains: chop.edu/conditions-disease...
Thanks. As I said, I'm unfamiliar with duplex kidneys but assume it is abnormal compared with 2 standard kidneys. So, without considering the "plumbing" too much, I wondered if that abnormality might be not too dissimilar to a single kidney in terms of operation. I think you're suggesting maybe not.
when you say you drink so my water I know weather is good for you but I know in later stages you shouldn’t drink do much not sure about stage 3 do you have any swelling of hand and feet . Ask doctor just how much water you should be drinking and if anything in your diet you need to change . It seem like you are controlling thing the best you can I don’t know much about duplex kidney I had to look it up it said it usually doesn’t cause any problem and your kidney have two ureters when it said usually guess there always chance it does guess you need to ask doctor what has call the drop but yes you can stay in stage 3 along time sorry I wasn’t much help but wanted to welcome you
+7
A duplex kidney, also known as a duplicated collecting system or duplicated ureters, is a condition where a kidney has two ureters instead of one. This condition occurs when the kidneys and ureters are forming early in development
So did the fix them to one utters when you were operated on
Hi and thank you for the welcome. Yes my ureters were re implanted at Great Ormond Street in 1975 and I believe the damage was caused by some leakage before the operation. I am not that knowledgeable about it really as I was so young.
#a is totally manageable. Change the diet to no red meat, no processed foods such as sausages and packaged foods. Stick to fresh when ever you can. Limit the salt. Eat lots of fruits and vegetables. See if you can get a referral to a renal dietician.
Thank you so much B! I am beginning to see that 3A is okay for now and I will try and keep it that way. It seems to be a long road. Have a lovely evening!
Just a quick note - please let your labs guide you in any diet modifications you want to make. And ask your doctor to approve and monitor you as you do this. Protein and electrolytes are needed by the body in the proper amounts to prevent other issues from occurring. Lowering sodium too far, for example, can also damage your kidneys. Of course, processed (manufactured) foods - particularly packaged mixes, things with additives, and so forth - aren't good for anyone. Yes, fresh fruits and veggies are always best as well as "fins and feathers" or lean meats. Often, in Stage 3A nothing needs to be done other than sensible things. kidney.org/kidney-topics/st... By the way, I love your name. My mother's name was Henrietta, too.
Ah thank you! I don’t meet too many Henrietta’s now a days! I will take your advice and go slowly with some slight changes to my diet. I think my other labs results are good except creatine, which is higher than it should be. Thank you so much for replying.
This would be a good time to simply start a discussion with your nephrologist since we can only give you our experiences, we can't diagnose since we aren't physicians. I sense that the U&E test is based on two well functioning kidneys whereas you only have one. So this could well be the expected outcome for that single kidney with age related wear and tear or it may be something else. Depending on what your nephrologist thinks, he may suggest you do nothing at, suggest a mild tweaking of your diet, or suggest doing more than that. With proper awareness and care, a single kidney can carry one well into old age. I view it as having vision in only one eye. That situation affects depth, distance, and balance so it may be hard to throw a ball or pour liquids. Yes, it's best to have two of everything, yet one can still live life well with one. Mother Nature takes care of her humans. I think you will have a similar outcome.
FARXIGA STABLELIZED ME AT CKD 3 B. YOU SHOULD CONSIDER IT. IF YOU HAVE DIABETES IT WELL ALSO HELP THAT. I'M SURE HAVE BEEN GIVEN ALL THE RULES ABOUT WATER ECT. IF YOU ARE OVERWEIGHT LOOK NTO OZEMPIC. GOOD LUCK.
Hello EttaBurb! So sorry to hear how frightened you are. First, take a deep breath and calm down. You are not alone. You can vent here. 55 eGFR is nothing to fear, yet. Stage 3A is not bad. I was a Stage 3A for twenty years with two functioning kidneys and a stable Creatine of 1.5 until my Primary Care Physician put me on a trio of meds that shouldn't have been given to someone with CKD. I had a very painful UTI and in my one moment of weakness with my guard down, this occurred, and I then entered Stage 4 CKD. With just one functioning kidney since 2010, I was stable for a couple of years until I started eating meat again. So far, you sound as if you're doing everything right. Just keep doing what you're doing. However, being in the U.K, I'm quite surprised no one there has mentioned making a change in diet, if you have not so already. Research has proven that Very Low Protein Diets, especially meat free ones can help delay or even prevent the need for dialysis or transplant down the line. I am in Stage 5 now with my most recent eGFR of 10. I'm being pushed by my Nephrologist into both, but I'm holding my own, so far through eating a Whole food plant-based Very Low Protein Diet. Do some research. National Kidney Foundation, National Kidney Federation in the U.K, American Association of Kidney Patients are good starts. Read some books, three I highly recommend though some here will disagree are: Stopping Kidney Disease by Lee Hull. No he isn't a quack selling snake oil though some here will tell you he is because he pushes Keto Analogues, amino acids without Nitrogen, which hurts our kidneys. Learn the Facts About Kidney Disease: A Self-Help Guide to Better Kidney Health With Proven Therapies Paperback by STEVEN ROSANSKY M.D., and the original research done on Keto Analogues and VLPDs in Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis Paperback by Mackenzie Walser M.D.. May I also suggest viewing the documentary Forks Over Knives and reading or purchasing a few of their meat free but tasty cookbooks. Giving up meat is extremely difficult at first, but after a while, one gets used to it. Fruits and vegetables help the body with so many health conditions. Important note: It is your body. Every one is different. One size does not fit all. Learn all you can. Ask questions. If you don't trust your physician, get another one. Hopefully, you are seeing a Nephrologist and if not, you should now begin to establish a relationship with one now. Wishing you well and the best of health. Regards from the USA.
Hiya Etta...I hope you're keeping OK? I had no idea whatsoever that I had CKD until I was in hospital last Christmas due to a very high potassium level (7.5) caused by the over prescribing of medication. I was put on Frusemide, which seems to be working well, but I haven't been told to limit my fluid intake. I don't have much salt, so ok there, but I was told to have regular blood tests - every 2 or 3 months. However, my GP thinks otherwise! This year I have had 2 blood tests. I mentioned this to my respiratory consultant and she said she'd contact him and tell him. Still nothing. Also, no one has said what 'stage' my ckd is...my kidneys are 80% functioning....take care lovely lady 🥰🥰
Thank you for your lovely reply. I am feeling better but realise it is up to me to get this right. I am going to see a good GP and push for a referral while also changing my diet. I will keep on top of it all. Feeling in control makes it all feel more manageable. Hope your okay too!
Hope you find a good GP. I am with the worst practice. Even after 7 years they still refuse to look up or read about a J Pouch. I try and tell them but they will not listen. Unbelievable.
Hello Etta! I was born with same condition; duplicate kidneys, ureters, neurogenic bladder. It was not discovered until I was 3 years old, subsequently my right kidney was destroyed by infection and I had 7 surgeries on urinary tract.
I am now 65 and have one large kidney 13 mm, and a piece of kidney 5 mm and am on permanent intermittent self catheterization.
Similar to you. My EGFR has been around 60 for last 10 years. I also follow healthy diet and try to keep salt, meat and processed food to a minimum. Exercise or walk 3 times a week. One coffee in the morning only. No alcohol obviously. My nephro said EGFR can fluctuate a lot, so be sure to get checked often. There are several books available on Amazon for more information: Stopping Kidney Disease by Lee Hull, Thriving with Kidney Disease by Walter Hunt, as well as several nutrition books. Best wishes!
Hello!! You are the first person that I have ever met with the same condition as me. I am happy to hear from you!!
I am practically the same as you except that they found out about my problem when I was two weeks old. The infection had already damaged my kidneys and I only needed one operation to re insert the ureters. My bladder is less affected even though I do wee extremely slowly and have had many bladder infections.
I just I just got my last set of results from my EGFR and it was a fasted blood test. The results were much better and I had an EGFR of 67. So I am relieved but it has all been quite a giant wake up call to take the next steps to make sure I look after myself especially with regards to my diet.
I’m learning to cook finally and my husband is also being really wonderful cooking incredible meals in the evening. And so the journey carries on.
It sounds like you are doing really well with your routine and diet so I find that a real consolation.
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