Early CKD Support
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Is my disease genetic or not?

Well after speaking to a counsellor at kidney.org I am more confused than ever. This person is supposed to be clued up in everything kidney related but she basically said that kidney disease Can't be genetic!!!!! My sister who's a year younger as just been diagnosed stage 2 and I have stage 3 and my uncle died of a heart attack caused by kidney disease but then I'm reading it can be genetic so what's the hell do I think now. Is it true that a genetic ckd will always get to end stage. So much conflicting info that I don't know what's true anymore and this is supposed to be from experts

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Hi, I can't address the comments made by the person at NKF that you spoke to but I did something that may help you understand better. Below is a link that came up from their website when I did a search question on genetic and CKD. My question generated a large, multi-paged response that provides you with many examples of genetic illnesses that be problematic and lead to CKD in one form or another. I hope it helps clear things up for you.

kidney.org/search-results?s...

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Fantastic!

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It depends what you have I have polycystic kidney disease and it is genetic it's a 50% chance you will pass it on to your children I have it and my dad, Aunty and grandfather have it usually if it runs in your family and the rest of your family has reached end stage you will usually end up going down the same path but some people don't

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Hello, I didn't see what kind of kidney disease you have but may have missed it. I can tell you that polycystic kidney disease is genetic. I have it and it came from my mothers side of the family. Haven't heard of any others that are genetic . Hope this helps!

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Angie2020,

I think your confusion is pretty normal for someone with ckd. I know that I have been and still sometimes just shake my head that there are so many contradictory messages out there. All I can advise you is to keep searching for answer, sort through the contradictions, and do all that you can to do what and informed you feels is best.

lowraind

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I do not have polycystic kidney disease but my mother just passed away & I found in her safe a death certificate for my grandfather that says he died of kidney disease. My mother had dementia so couldn't remember if any family had kidney problems when I was diagnosed 3 years ago.

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Hi! Like so many that have replied, polycystic kidney disease is definitely hereditary. I don't know what the Kidney rep said to you. but sometimes in families there is a history of high blood pressure. So, you can say that it is hereditary. Diabetes, also a cause of ckd, can also run in families. Mine was caused from strep throat that resulted in glomerulonephritis. 30 years later I wound up with ckd. For me it wound up in end stage & had a transplant.

There are so many factors for each person that can be a cause for ckd. Mr Kidney posted a great article that gives you an idea of ALL of the causes of ckd. And just because you are diagnosed with a kidney disease does not necessarily mean it will be end stage and needing a transplant. It winds up being very confusing. I would hope your nephrologist could answer these questions for you. If you aren't comfortable with that.....maybe you need to switch doctors. It's very important for your doctor to understand what you are going through and for you to trust him.

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Hi

Is pkd the worst kind to have? still haven't been referred yet so still waiting. There's no history of high blood pressure or diabetes. My uncle died of an heat attack caused by kidney disease and I have noticed that since being diagnosed my blood pressure is creeping up from just under a 100 to 108 and 120's which is worrying because I'm on a really healthy diet with minimal salt and no proecessed foods. Apparently my mum can't remember what disease he had but it began with 'neph' or something. It's such a long process getting to the bottom of what's causing my ckd and my sister as it too and she's in stage 2 and I'm in stage 3 now after dropping my egfr flow from 88 to 59 within a month! I wasn't taking any meds or anything. Just want some answers because not knowing is worse

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The worst kind of CKD to have is the type you have. Your blood pressure can be going up because of the stress you are placing on yourself. Make an appointment with a nephrologist and go over your family history, personal health issues and any recent labs you have. Let the nephrologist decide if an ultrasound, CT Scan (without contrast) or even a biopsy will give you answers. Follow the links folks here have provided you and learn about CKD and when you have more specific information on what type you may or may not have, do additional research on that specifically. Other folks here can provide help and support but the bottom line is that in-depth research on your specific wants and needs will be up to you to research and ask questions of your Care Team.

The more you research and learn, the less stress you will be under. Take control and as you acquire the knowledge you need to understand the health issues you will reduce the stress and strain you are feeling now. It won't happen overnight, but over time it will.

June 28th, 2017 was when I found out that I had Stage 3 CKD. I did the research, learned all I could (I'm still learning) and my stress and fears of the unknown have diminished. I still run into things that cause a momentary problem but I buckle down and research the problem and the stress and worry get minimized. The alternative is to continue to worry and do nothing. That doesn't help me or anyone else.

In many cases, I wouldn't expect to get an answer right away from your doctor either. Many doctors can sometimes tell you what you don't have. The tests they run help them eliminate other problems until they arrive at the correct diagnosis. It doesn't happen overnight. Just so you don't consume yourself with CKD research find something to take your mind off of it. Reading, writing, a hobby you can work on to occupy your mind on things that are non-CKD. I read, improve my photography, travel, and add to my collection of political cartoons. I dedicate a certain amount of time each day to CKD but it doesn't run my life and I don't allow it to interfere with the things I enjoy doing.

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Hi mr kidney, that's just it I don't know what type I have yet and am in the process of getting tests but it could be quite a few month before I see a nephrologist as you know our NHS is at breaking point. I'm having a CT scan o the 11th may and my doctor is sending me for a colonoscopy ( can't wait!) and I've had an endoscopy which showed a patch of inflammation in my small intestine which I thought was due to nsaids I took for 5 days on and off. I've just been having so many symptoms in the meantime like all over back pain, lower ab pain, really itchy legs, extreme thirst, headaches, coughing at night. I've had a chest X-ray so get results in a few days and have another blood test at same time. I ended up in A&E the other day cause I was having chest pain and my tropinin level was elevated to 60 odd but the ecg was normal but the doc said it could be due to your kidney condition which hasn't been resolved and oh yeah I had a massive panic attack when I had chest pain so that didn't help lol

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Apparently, I didn't make my point clearly. I'm sorry about that. The worst type of CKD is the type each of us has. Regardless of what type that may be. It may not be the same as a sibling or it may be the exact same. You may have CKD but yours may not be genetic. Only a series of tests run with your okay by your doctor will eventually tell you which type you have. Just take the time now to learn about CKD in general and later when you have a diagnosis you can delve into the specifics of your particular type. There is much to learn about CKD and how to slow it down before you get the answers you are seeking. Best of luck

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Hi Angie,

First of all, feeling frightened and nervous about this is very normal. The words are like an electric shock and resonate through you. We have all been there and as Mr._ Kidney has said, we still do.

Knowledge and good knowledge and management of this is power.

It is difficult not to think about this and worry.

As Mr._ Kidney has told you, you run it, not let it run you. His advice is impeccable!

Learn, eat well and live your life...family, friends and hobbies are your life and important.

Just know that it is all a process and that we are all here for you!

Bet:)

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I sympathize with you regarding all of the issues you are going through. However, you have to take action yourself to minimize the stress and that means doing your homework now. Get a general knowledge of CKD and deal with more specific information once the nephrologist gives you detailed information. Back to what I had said about taking your mind off health issues. Do something to keep yourself busy and enjoy your life. Deal with each ache and pain, each itch, thirst, headache, and cough as an individual problem but keep an eye on any relief as if you had CKD. Avoid NSAIDS, contrast for CT Scans, processed foods, salt (sodium), be mindful of any prescribed antibiotics, use a topical anti-itch cream, and drink plenty of water. Learn what tests the doctor should run to give you the answers to your questions at your next appointment. Try to be sure you know the questions to ask and have some fun and try to relax.

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Yes, always remember to be your own advocate. It's important for you to get the answers! It's important too, for your family to know if it is hereditary. It's your health and your life!

I had no symptoms and then started having very high blood pressure that caused horrible headaches. Doctors' started doing tests & found that my kidney function was down to 50%. So, for most people, high blood pressure is a sign of kidney disease.

Take care and get your questions answered. I find it's the NOT knowing that makes every thing worse.

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Very true, WYOAnne!

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hi angie..i think you are correct..i had kidney reflux as a 6 year old caused by a delay in the development of the non return valve in the wall of the bladder to the kidneys..this lets infection up to kidneys..my mum had it my sister had it my dads sister died of it..so genetic is a very strong posibility..im nearly 60 now with a recent transplant so i am well for the first time in 52 years...take care regards chris

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