Hi is there a separate group on this site maybe for people who have or born with one kidney. I've always been told it's quite rare and speaking to a renal nurse recently she said it was cool lol think she meant on the way of being interesting study lol. Just thought be easier to find locate information.
As I'm currently under stage 4 kidney disease with just one kidney would be nice to know of any information as of be treated sooner and life sort of prognosis I know it's not professional opinion but something o can be prepared for being an older mum to a 3year old scares me of the future.
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Ruthy35
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My wife's born with a horseshoe kidney and is 64 now. Never had any trouble till recently and shown a trace of blood in kidney. No kidney damage so just an age thing they think. Don't need two of us with ckd 🙄
I too have just one kidney (other lost to cancer). I don't know of another forum for those with just one kidney, but naturally there are members here (like you and I) so certainly you should feel free to talk about the subject.You were told it is very rare to be born with one kidney. The statistics vary slightly depending on the different studies on the subject. MOST way 1 in 1000 babies are born with 1 kidney (but a few say it is up to 1 in 2000). This is called renal agenesis.
Additionally, there is a condition called renal dysplasia. These are babies born with 2 kidneys but one of the kidneys is not fully or correctly developed and is not functional. This happens in about 1 in every 4300 births.
Now you will often read that those with one kidney usually lead normal, healthy lives. But what they don't really break down is what is that "normal". Certainly, there are those who fit all the "normal" measurements of egfr, Creatinine levels, normal urine, etc. But it is also normal for those with one kidney (especially those who have only 1 due to the removal of the other kidney) to have higher Creatinine levels, poorer egfr measurements, etc., but still live typical lives. For example it is quite typical for such people (like me) that our Creatinine levels will be 1.8 or 1.9 and that is our "normal", where for others with 2 kidneys this is a bad result. And this level of Creatinine will result in a worse egfr, and worse (higher) stage of kidney disease.
You mention you are stage 4 CKD. You did not say if you have been placed on dialysis. Or if you have just entered this stage, etc. And NATURALLY you are worried about prognosis. But that is difficult to answer. For example (and just as example) say a person is stage 4 and they get a kidney transplant. Their prognosis is far better than for a person who does NOT get a kidney transplant. Say you have just entered the threshold of stage for. That person has a longer life prognosis than one who is at the later stages within stage 4.
Let me share with you something. I lost one kidney due to cancer. But it came back in other parts of my body and I am stage 4 for cancer. There is no hope for a long or normal life. But this was told to me starting in June of 2017. Here I am, at the computer, "talking" to you, living a fairly normal life (except for some medications that cause unusual side effects), but with each CT scan every 3 months, realizing that my time is running out. I have learned one huge valuable lesson during this time. The negative thoughts, the worry, the thoughts of life ending, the prognosis as you say, will NEVER leave you mind for even an instant. But if I had sat around, constantly worried, feeling sorry, depressed, I would have missed what has been about 5 years of an adjusted normal life. enjoying things I like, people i like, current events, having great moments of happiness. And my condition is hopeless. Your condition is NOT without hope. Such as a transplant. AND you have a young daughter to consider. You ask for our unprofessional opinion. I would keep my hopes alive and pursue with my medical team getting on a transplant list. I would not waste my time investigation on the internet what they typical prognosis is, because you are a unique person and what happens to you (as has happened to me) can and likely would be totally different than what is typical for others.
Yes you must be a responsible adult and parent too and consider and make plans for what happens if you do not get that transplant. Who would care for your daughter, etc.
Never be afraid to post your questions or fears or thoughts on this forum. It will help you to do so. Keep us informed.
Perfectly said. I am so sorry to hear about your cancer diagnosis. You will be in my thoughts and prayers. I had my right kidney removed in 2015 do to hydronephrosis that wasn’t caught. All I have done in those 7 years is worry myself sick about my future as my left kidney sometimes doesn’t cooperate with fluctuating gfr’s etc. I’m on a low protein and low potassium diet as well. Well, the beginning of April of 2022, I just got diagnosed with breast cancer. Boy it sure put a stop to all my unhealthy worry about my kidney fast. We really have to enjoy every day we have on this earth.
Hi. Sorry to hear of your breast cancer. I know exactly what you mean. When my kidney was removed all I did was monitor my kidney, my diet, etc., etc. Then the cancer came back and has taken priority ever since. My mother had breast cancer and recovered fully. The cancer treatment advances are amazing and more and more each day. There are so many options for breast cancer treatment and a lot has to do with is it confined to the breast, or has gone to the lymph nodes, or to other parts of the body. Keep us informed how you are doing. And you will have people tell you there are new treatments every day, to try to give you hope. And I always thought oh sure, that is what is everyone says. But you know what?? It is true! When my cancer returned, I then met with the oncologist for the first time. She said that renal cancer that has spread to other body parts (in my case the hip, pelvis, adrenal gland, spleen, was bascially untreatable. But that very week the government just approved a new treatment, an immunotherapy, called Keytruda. It was around for a while for lung cancer, but that week was approved for kidney cancer. NOT a cure, but a way to slow growth and progression. I won't tell you to not be consumed thinking about your cancer, because you will be. There is no stopping the brain. But I assure you, once you get going on a treatment plan you will feel a bit better about it all. As for the kidney, I don't even follow a special diet, etc. Yes I use common sense but I don't go for monitoring every mouthful of food, monitoring my every egfr test (it goes up, it goes down, etc., and then back up and down and you know what? for the most part we can't change it). Keep us informed.
Thank you so much. Will do. I’m so happy to hear your mom is doing well after her diagnosis…. and yes technology is always evolving, and cancer treatments are advancing every day. Oh wow, were you able to get the Keytruda treatment?
Yes I have been on Keytruda. No terrible side effects. It is an IV I get every 3 weeks. Along with a shot every 6 weeks of Xgeva (to strengthen bones). The amazing part of Keytruda is the cost. Every 3 weeks it is $53,000!!!!! The Xgeva every 6 weeks is $9,000. There is an old joke that when a person needs money they have to resort to selling a kidney. But I can't do even that since I only have one left :).
RickHow, you one of the most informative and inspirational people on the planet. Thank you so much for being a contributor on this site and being there for others - including caregivers like me. Sending prayers that you stay around here for many, many years.
I’m 50 years old with one kidney. Lost mine to hydronephrosis back in 2015. My gfr has been all over the place since. One reading was as low as 48% at one time 5 years ago. My last test a month ago was 66%. I do not know of any support groups with people with one kidney, but I do know several people that have one like us. This site has provided me with allot of information and support. What is your age and current gfr?
I'm to do another blood test this month and if dropped again then they will see me favexto face to discuss next steps dialysis or diet or any medication. I've been told to monitor my blood pressure if 130/90 plus then may have to ask go for blood pressure tablets. They say a sign that blood pressure is high means my egfr rate has dropped dropping. Maybe diet etc to look at. Been feeling extra tired but also put it down to thyroid function maybe. Struggled to eat on and off as felt sick when tried to plus skin felt sticky to touch. I Google symptoms or like the other week phoned renal clinic direct.
Blood pressure (high) is bad for the kidney. It causes arteries to harden, weaken, restrict flow and not enough blood is delivered to the kidney to function efficiently. Less effecient means higher overall Creatinine levels, worse egfr. And it works in reverse also, that a weakened kidney can raise your blood pressure. Don't be afraid of blood pressure medications if that is what you doctor wants to start. They are inexpensive, work, and can help you a great deal.
Luckily I'm in the UK and I believe blood pressure medication is free and so are most treatments. I'm going to purchase a blood pressure machine as will keep an eye on any changes or if I'm tired etc more than normal l. I walk half a mile a day taking my daughter to nursery so so exercise regularly. I'm on lethothyeoxine for thyroid and find this make me go for a wee more maybe helping my kidney function more often. O don't seem to be sleeping much at the moment even though tired.
BP machine is good investment. It will bring you peace of mind too to know what is going on and allow you to recognize and problems. Now the key to bp measurement is to NOT just take random measurements, one time each, and think that is your bp.My cardiologist and my primary care give me the same instructions:
--take your bp 2 times (or more if you wish) at the same time each day. For example in the morning and at night each day at the same time. I take mine in the morning before breakfast, at about 3 in the afternoon, and before going to bed.
--Try not to take it soon after consuming caffeine. It will show a higher heart rate and slight elevation in bp. Takes a while for caffeine to wear off. At least 30 minutes, but in many it takes 1 to 2 hours.
--Do NOT take a single measurement each time. Sit still for 5 minutes and take pressure. Wait another 5 (to 10) minutes and take again. Now write down the average of the two measurements. A lot of the new bp machines will figure this average for you automatically (reasonably priced machines).
--DO NOT take it immediately after walking, or working outside, etc.
You are walking 1/2 to 1 mile each day. That is a good start, but a bit more is preferable. The key too is do not just stroll, but walk briskly (no need to run).
I was born with one kidney but didn’t find out until I was 50 ish when I became unwell . Have my function checked every 6months but know very little about any of it. Have cut out foods etc that make me feel unwell but apart from that am doing ok as far as I know
Myvone kidney I believe van be part of another rare genetic defecft. Townes brocks syndrome. As someone mentioned on my post called renal agensis where one or neither of the kidneys develop in the womb. Mine was discovered at birth because of the Townes brocks at great Ormond Street.
Hi Ruthy 35Glad you have found this group, as Rickhow said there isn’t a group, just for people who have one kidney, but there are a few who do have it on here. I was born with bilateral renal dysplasia, due to having something called Branchio oto renal syndrome, I have two smaller than average kidneys, my right side being a lot smaller and has never worked. My left side is now working at 30%, it has been this way since 2008. It’s great to hear that your doctors are keeping an eye on you and I completely understand how scared and worried you are about the future. My main advice is to just take care of yourself, listen to your doctor and renal team, make adjustments when needed, regarding diet and wellness.
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