Kidney disease and inheritance. - Kidney Transplant

Kidney Transplant

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Kidney disease and inheritance.

nlee profile image
nlee
31 Replies

Hello everyone,

I have kidney transplant 32 years ago. I now have 2 boys. My question is does kidney disease pass on to my children?

My tenage son just went to have a urine test, and the result show there is a trace amount of blood in his urine. I am so worry because I don't want my kids to have the KD like I have and make their life miserable.

Anyone who got kidney transplant and have kid? Did you find out if the KD pass on to your kid? I have consult with the doctor and he said my children may not have the KD, but they do have the KD carrier gen and it may pass down to their children.

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nlee
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31 Replies
LisaSnow profile image
LisaSnow

What kind of kidney disease do you have?

nlee profile image
nlee in reply toLisaSnow

I don't know. I was in my mid 20 when my kidney failed. By the time I headed to the emergency room, my kidney has shut down, and they immediately put me on dialysis.

LisaSnow profile image
LisaSnow in reply tonlee

I am sorry you got sick so young. Usually PKD, the most common heritable, autosomal form of genetic kidney disease does not progress to ESRD until late mid-age. To know what risk your children may have you first need to know what caused your ESRD. Please learn about your own diagnosis as much as you can (which will help you manage your health better too), and get a referral to see a medical genetic counselor for your family.

Balap profile image
Balap

does kidney disease pass on to my children? Depends on what type of kidney disease you have

DexterLab profile image
DexterLab

I have PKD, which is genetic and can be passed on to my kids. My mom and grandma had it. It is also not too common. Your medical team should be able to answer this question for your situation.

JackN profile image
JackN in reply toDexterLab

It's actually pretty common - 400-600,000 cases in the US alone.

DexterLab profile image
DexterLab in reply toJackN

But it is at most the #4 cause of kidney failure. Diabetes, high blood pressure and glomerulus disease are more common paths to ESRD. Of the three generations in my family that have diagnosed PKD, I am the only one that went to kidney failure. So it depends.

Winner76 profile image
Winner76

Hi, I think it depends on what kidney desease you have. I have PKD which is passed on , I have 2 daughters one has already been diagnosed and we have to wait until my second daughter is older to check. Ask your doctor is the best thing to do.

Best wishes

Tina

Parkerbarker profile image
Parkerbarker

Yes pkd is genetic and usually will affect most relatives in same family..My case is a weird one as I have it yet literally no one else in my family does,not aunts,uncles,cousins,8 siblings,nephews,nieces,great nephews,great nieces,very rare for that to happen.I always say i must have been switched at birth in hospital to not have at least one other person in my family have it.

JackN profile image
JackN in reply toParkerbarker

I see that you left out parents. Almost all PKD is inherited but I think there is some that is not. If a parent has it you have a 50% chance.

nlee profile image
nlee in reply toJackN

My parent don't have PKD. None of my siblings has any issue with Kidney.

JackN profile image
JackN in reply tonlee

Ok, thanks. I believe there is a less common version that is not inherited. If you have PKD it's very important to get an MRI to check for brain aneurysms.

Roxylulu profile image
Roxylulu

IgA nephropathy is also genetic and can be passed down. My understanding is both parents need to be carriers. The only way to diagnose IgA is a biopsy. If you have any genetic testing for your transplant, the answers may be there as well. My husband has IgA and his sister (his donor) was found to be a carrier during the transplant screening process. We are urging her daughter to undergo a biopsy to determine if she has IgA or not. If she does, there are things she can do at a young age to slow down "flare ups."

Pegasus2021 profile image
Pegasus2021 in reply toRoxylulu

I have IgAN and been transplanted. I learned that the markers for IgAN are proteinuria and hypertension. I had my kids tested yearly. But until either shows up, I do not want them to go through the biopsy. Biopsy presents different kinds of risks - imho.

TeacherMommy profile image
TeacherMommy in reply toPegasus2021

At what age did you start screening your kids? I have IgAN and have an elementary aged child.

nlee profile image
nlee in reply toTeacherMommy

I asked my pediatric doctor to order the metabolic, and urine test for my 13 years old, and the urinalysis show he has no protein in the urine, but 1+ blood in the urine. I will have my kid re-do the urine test in a couple weeks.

TeacherMommy profile image
TeacherMommy in reply tonlee

Thanks!

littlelinda50 profile image
littlelinda50

I had Poly cystic Kidney disease and I was told that it might not show in my children tell they are in their 30's. I have my kids get a kidney ultrasound every year to keep an eye on their kidneys. For me they do not know if I got it from my mother who had it because I am also predisposed to it from having a Wilms tumor.

JackN profile image
JackN in reply tolittlelinda50

Each of your children has a 50% of inheriting it. An ultrasound should have revealed it by now so perhaps they both lucked out.

Jamok profile image
Jamok

Did one of your parents have ckd?

There is a genetic kidney disease that many do not know they have because it is so recently discovered. please see the health unlocked rare kidney disease ADTKD group or go to rarekidney.org for information. Testing for the gene is free. I found out I had this after years of being told my ckd which ran in my family was probably due to a weakness in our kidneys that left them susceptible to disease from events like mild hypertension and scarlet fever. My own nephrologist had never heard of it when I informed her.

Bax509 profile image
Bax509 in reply toJamok

I have the UMOD gene - considered rare. My grandmother, father& uncle all had kidney disease. I had no other risk factors . Diagnosed in my late forties, transplanted (living donor) at 59.

nlee profile image
nlee in reply toJamok

None of my parents have CDK. None of my sibling has KD. Just me. When I was younger (about 12) my mother seen white thread in my urine. X-ray showed I have many Kidney Stone. Back then they haven't invent the stone crushing machine, so they remove one of my kidney because the surgeon damage my kidney while trying to remove the Kidney stones. My other kidney failed when I was in my mid twenty.

mtwskk profile image
mtwskk

The are many kidney diseases if you have PKD or offs it’s hereditary but as a 50/50 chance. You can have blood tested to determine but it doesn’t usually show up until they are in there 20s or 30s

Bax509 profile image
Bax509

The answer is (as noted below by others) - there are different types of kidney disease and some can be inherited. I have a rare genetic mutation that runs in my family. My grandmother, father & uncle had/have kidney disease. I was diagnosed with CKD when I tried to be a donor for my dad. I later had genetic testing which isolated the mutation. If I had had other risk factors (eg hypertension and/or diabetes) that would have likely hastened my kidney damage & failure but I would still have needed dialysis and/or transplant at some point (which luckily I’ve had). Good luck to you and your family.

Jamok profile image
Jamok in reply toBax509

what is the name of your genetic kidney disease?

Bax509 profile image
Bax509 in reply toJamok

This is from a paper published by Dr. Anthony Bleyer about the kind of kidney disease I have (he was part of a team that identified the gene mutation):

ADTKD is a rare genetic cause of progressive CKD and kidney failure. It is genetically heterogenous with pathogenic variants in MUC1,3 REN,4 HNF1B 5 and uromodulin (UMOD) 6 identified, with UMOD comprising the highest proportion of ADTKD cases of up to 50%, with a disease prevalence of 9 per million.7 ADTKD-UMOD is estimated to account for 2% of patients with kidney failure,8 with susceptibility UMOD variants also conferring around 20% increased risk for CKD and 15% for hypertension.9 Classically, it is characterised by early onset gout, hyperuricaemia, the absence of haematuria or proteinuria and kidney failure usually occurring between 30 and 60 years.

Jamok profile image
Jamok in reply toBax509

I have Muc1! Health unlocked has a Rare kidney disease ADTKD group. Are you a member yet?

Bax509 profile image
Bax509 in reply toJamok

Not yet - kinda kidney-ed out 🤣

Jamok profile image
Jamok in reply toBax509

I get it but it’s a nice way to commiserate with people who have your same genetic CKD.

realpotatoes profile image
realpotatoes

I also had PKD and so did my dad and grandmother. I knew my dad had it because he was on dialysis at 60, so I tested when I was in my early 30s and found out that I had it. I had no symptoms until I was in my 50s. A word of caution based on my own experience. If you test your kids, be aware that if they test positive, even without any symptoms, they may be unable to get life insurance and they will be given a hard time by health insurance companies. Just my own experience, so take it with a grain of salt.

littlelinda50 profile image
littlelinda50

I had polycyctic kidney disease and it is hereditary but I also had a Wilms tumor and you can develop PKD later in life so not sure if mine is totally from that or I inherited because my mom had it too. I was told that I should have all my kids kidneys ultrasound every year along with simple blood test and that if they do inherent it that it might not show tell they are in their 30s. My kids are adults now and just do ultrasounds and blood tests.

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