Inherited CKD: Hello, I was wondering if... - Early CKD Support

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Inherited CKD

Cbailey
Cbailey

Hello, I was wondering if there is anyone on this forum with inherited CKD? My great grandmother, grandmother, uncle, aunt, and mother have had,or have passed away from complications from ckd. The only thing present in our family is the disease. There seems to be no underlying cause. I am 42 years old and was diagnosed two years ago with stage 3. I am prescribed a very low dose of Lisinopril for high blood pressure that my dr believes was brought on by the ckd. I also have had no protein in my urine. My gfr was at a 52, but is now at a 44. Since I was first diagnosed I eat a low-sodium, low-protein diet and try to eat lots of fruits and vegetables. I also drink lots of water and hit the dread mill a few times a week. I also see my neph every 6 months.

18 Replies
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Cbailey,

Yes it can and does run in families. My husband's for example. But so does diabetes, so it is hard to say which caused what. By the way, I absolutely loved the typo about your exercise on the "DREADmill". That is what I am going to call mine from now on. Thanks for the laugh.

Bassetmommer, that really was a typo, but I think I’ll use it!

Hi Cbailey,

I just been diagnosed with early stage of CKD and I possibly inherited from my mum, as she got stage 3 kidney failure and all her siblings all have advanced CKD. I did a genetic test at Cambridge University and it confirms that I have abnormally in my kidney, inherited from my mum side. The doctor said it could be related to Alport Syndrome, include my mom, they all have hearing lost and health complications. From now on I've been trying eat healthy and do exercise. I have annual checks to make sure all the levels are normal!! All the best for you!!

Cbailey
Cbailey
in reply to Crisriver

Crisriver, I have also had genetic testing done and confirmed that I do not have Alport’s. We just seem to have kidney disease with no underlying cause. The best of luck to you on your health journey!

itzmich
itzmich
in reply to Cbailey

Genetic testing not kidney biopsy. Please explain.

Alport67
Alport67
in reply to Crisriver

Crisriver,

I have Alport Syndrome. X linked. My daughter also has it. I'm currently in CKD stage 5 and was recently put on the transplant list. Hearing loss and declining kidney functions are all symptoms of Alport Syndrome. Good to be eating write and exercising. There is specific testing that needs to be done to confirm Aplorts. You should discuss it with your nephrologist and get the testing done to know for sure.

Good luck.

Have a great day.

Crisriver
Crisriver
in reply to Alport67

Hi Alport67,

Thank you for you comment!

The genetic test I done actually shows that I have abnormally chromosomal X. The doctor said the Alport is more severe in men, because men are X X, and I can see it in my family, as my two uncles are already doing dialysis for many years, lost of hearing and other complications. My mother is now 78 and she got very bad hearing lost. She also have kidney failure, the control is manageable with diet, low in protein and potassium. At the moment her kidney function is stable. She discovered that she had kidney failure on her early 60s, treating a different health problem. My doctor believes that I have Alport, same as my mother and her siblings as I mentioned above, I got abnormally X. But no one in my family done the genetic test, I'm the only one, but the symptoms that my mother and her siblings have, brings up that is a inherited alport syndrome. I also got blood in my urine. So, for on now, I have annual control with nephrologist.

All the best to you too!!!

Good luck!!

Alport67
Alport67
in reply to Crisriver

Hi Crisriver,

Thank you for sharing. It's true, with X linked Alports males usually have worse symptoms because of the XX factor. I'm lucky I have lasted this long without complications from kidney failure. The doctors say my daughter's symptoms will never be as bad as mine so I am thankful for that.

Good luck to you.

Have a great day.

Yes...Mother and Sister both have CKD. I also have it Stage 3. Our cause seems to be High BP. Sounds like you are doing everything you can to help yourself. Keep up the good work.

I have Polycystic kidney disease which of course is inherited. I know if one cousin who has been diagnosed with it but no others for sure although my doctor told me there are people in my family walking around with it and they don’t even know. I found out by accident

I would think genetic tests might show some abnormality! Wow you and your family are rare to not know cause, perhaps. Best to you

Cbailey
Cbailey
in reply to CatOnACloud

Yes, we are hoping to find a cause!

I also have ckd(stage 4 almost 5) and have a family history of kidney disease-my brother and his daughter, my dad and his brother, my grandfather etc. without a known common cause. I recently found out about a very rare form of kidney disease called autosomal dominant tubular interstitial kidney diseases or ADTKD. It is a genetic disorder that is passed from parent to child. The hallmarks are:

Strong family history-parent child

Bland urinalysis- very little to no protein and no blood

Slow increase in creatinine

There are three forms of this disease that they have a test for. Some forms include gout and some anemia most of your life.

Many nephrologists don’t know about this disease-mine didn’t.

They now have a genetic test for this and I am doing it through a Dr. Bleyer at Wake Forest medical center who is researching this form of kidney disease. The testing is free of charge. You should contact him and he may be able to help.

Hope you find your Answers!

Cbailey
Cbailey
in reply to Jamok

Jamok, thank you so much for your reply! The crazy thing is that my doctor also referred me to Dr. Breyer at Wake Forest months ago. I have completed all of my labs/testing a few months back, and we have had a few phone calls about family history etc. My family also has no protein in the urine and anemia.

Do you have any idea if your family ckd progresses quickly? That’s something we are unsure of. Most of my family found out at the later stages of their ckd. Best of luck to you!

It took 20 years for my creatinine to go from 1.4 to 3.0 and my brother has had a pretty similar decline. My ckd always leaves doctors scratching their head because my symptoms are so atypical including the fact that my blood pressure has been only borderline high and my cholesterol has been excellent. I did have pre-eclampsia with my first pregnancy so that was a hit to my kidneys but they bounced back at the time. I got dignosed with sarcoidosis in 2014 when I spiked calcium and that was another big hit and it was thought that the sarc. could have been the underlying cause of my ckd.

When will you get the results from the genetic testing?

Jamok, thanks for your reply! I’m not sure on that. My neph contacted Dr. Bleyer through email last week to check on the results. He said they haven’t heard anything yet. I guess it takes awhile.

Jamok, can I ask if you made any diet or exercise changes when you found out you had ckd? And if so, did your nephrologist think it helped with progression? Thank you!

Cbailey,

My nephrologist put me on blood pressure meds...no talk of diet changes or exercise but I just started seeing a new one and his advice was eat less meat as meat increases acid, exercise 30 minutes a day-walking is fine- and drink water. He also gave me a script for baking soda pills. Getting blood tests in a few weeks. I’ll let you know if it helped.

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