Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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Joined: Sat Oct 31, 2015 6:50 pm


Postby iant06 » Sat Oct 31, 2015 7:04 pm

hello, I was diagnosed at birth with ARPKD the recessive form of the disease. I had enlarged kidneys, my lungs had collapsed, and I turned blue at birth. I have had mild hypertension since I was born, 140/90 when I don't take my medication for it. I have had ultrasounds done on my kidneys when I was really young, probably around 4-5 years old which no cysts but it showed enlarged kidneys. When I was 10-11 years old I had an ultrasound done on my liver which showed it was healthy and but slightly enlarged as well. I'm now 21 years old, almost 22 with still 100% kidney and liver function, never had a UTI in my life, never had kidney stones, never had blood in the urine, I have had no other symptoms besides high blood pressure. Does an ARPKD diagnosis even make sense anymore? All the research I have done on ARPKD shows that by childhood there should be some sort of symptoms like liver disease, renal function loss, etc. Would it make more sense that I have ADPKD?(No one in my family has ever had it but I have read about the mutation of the gene during development) I don't even think that I have enlarged kidneys as the doctor says that he can't feel them at all and I have never had any sort of pain from that area. I wanted to get gene testing done but my insurance wouldn't cover it, I'm thinking of just paying for it out of pocket because its really bugging me lately and I honestly don't think I have it. What are some peoples opinions?

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Location: Sheffield UK


Postby SDGS » Fri Dec 04, 2015 3:19 am

The presence of the diagnosis is certainly having an effect whether positive or negative is for you to decide. The fact is that you are health conscious and look after yourself well. You can continue this no matter the result. I am sure you are thinking about relationships and what the future holds so it would be beneficial to find out.
We all carry our problems in our arms and when little things get added on top, they look like mountains.

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