Genetic Testing

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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/22/2009 6:08 AM (GMT -7)   
I know insurances don't want to pay for genetic testing.  Which I don't understand that thinking.  If you find something before it gets bad you can possibly slow its progression.
 
I know there is a marker (genetic) test for PKD.
 
My question is, Do any of you know how much a genetic marker test is? 
 
My daughter has been searching this since my 15 yr old failed his football physical last week with high amounts of protien in his urine.  I need to get him tested for PKD.  This disease is a 50% chance of passing onto your children.  We want to test all three of them but CJ is going to be the first with this test. 
 
CJ has to deal with battles left and right.  Also last week he failed his driving permit eye test.  He is also blind in one eye.  But his good eye has adjusted so well to cover for the other eye that he is one of the best players on his football and baseball teams.  He plays for two teams of each all year long.  Hes gone 6 days a week doing practices for all of them.  Regarding the eye he has to see Dr Wang of the Wang institute on Friday to get a signed approval that his eyes are still fine to drive.  With one eye he can see everything but depth perception. If he can't get that signed we have to opt for surgery.
 
Now he failed his test.  He has to drink a gallon of water a day for two weeks then go back in to be tested.  If the protein is still there he has to go to my Nepherologist.  Scaring me big-time!!!!!  It would kill me if one of them had to feel this kind of pain in there life......
 
Laurie

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/23/2009 2:40 PM (GMT -7)   
Both my girls have PKD. They were diagnosised by ultra sound at ages of 2 and 5. My youngest who is now 15 only had one cyst so she technically is labeled polycyctic so isn't being treated by a nephrologist. We chose not to even tell her about the one cycst until she gets other symptoms. My oldest is now 19 and is on blood pressure meds to control her hypertension. I'm not sure about the cost of genetic testing. My doc just told me to have the ultra sounds because at the time they were getting urinary tact infections.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/24/2009 12:47 PM (GMT -7)   
Thank you for responding. After much discussion we have figured out we are going the CT scan route. Wow your 19 yr old is already on BP meds. I was put on them around 25 which was my first sympton of PKD. Just went down hill from there.

Once again thank you for the info

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/24/2009 6:06 PM (GMT -7)   
Why is it that Kidney problems cause high blood pressure? I know I never had a problem until i was dignosed and now they can't seem to keep the bp under control and I am on 40 mg of lisinopril...bp recently staying around 130/95! Any suggestions?

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 9:57 AM (GMT -7)   

Same here I never had high bp until my kidneys got bad.

How does high blood pressure hurt the kidneys?

High blood pressure makes the heart work harder and, over time, can damage blood vessels throughout the body. If the blood vessels in the kidneys are damaged, they may stop removing wastes and extra fluid from the body. The extra fluid in the blood vessels may then raise blood pressure even more. It’s a dangerous cycle.

High blood pressure is one of the leading causes of kidney failure, also called end-stage renal disease (ESRD). People with kidney failure must either receive a kidney transplant or have regular blood-cleansing treatments called dialysis. Every year, high blood pressure causes more than 25,000 new cases of kidney failure in the United States.1

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/27/2009 10:35 AM (GMT -7)   
Holy Cow...I had no idea, 25,000 cases of kidney failure! Goodness sakes...so now I see why they keep uping my dose of the bp medacine....thats nothing to mess around with! Thank you for the info Laurie!!!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 11:05 AM (GMT -7)   

Your very welcome.  I was even alittle shocked when I googled this for you.  It is alot.  And just because of high blood pressure.

Laurie



39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

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